Saturday morning was bright and sunny, and despite a late night I had a good feeling about the weekend ahead. After making a packed lunch and picking up the birthday girl. We ate our lunch in a layby on the A1. Parking at Cockfosters as usual, we got off to a good start by finding a ticket seller with a REAL sense of humour. He was making it like a quiz showing asking us questions to get the right tickets, and then said "That'll be £148 please". I imagine the look on my face was worth him turning up for work that day. It was really £28 for the weekend all zones for us both.
After finding the hotel and dumping our bags, we hit Oxford Street. After finding a nice John Rocha top in Debenham's sale we went to Selfridges. Angela says that when Holly Golightly says that nothing bad could ever happen in (Breakfast at) Tiffany's, that sums up how she feels about Selfridges. Now I understand why! Basically, we got free make up and perfume and hair straightening just by walking through the store. I did actually buy some of the products but only stuff I already wanted. We had our eyebrows waxed and made up again too so all that was left was to get dressed for the evening and eat! Obviously we had to go to the Champagne bar for champagne and oysters and then to the food hall to buy olives and a selection of healthy stuff from RAW. We scoffed them back at the hotel, tweaked hair and make up slightly, washed London off our feet and got changed.
By the time we hit Covent Garden it was pushing 11pm! We'd had a quick drink in Tottenham Court road and then really struggled walking round the cobbles of the Garden looking for somewhere that was still serving. In search of a cashpoint we found Navajo Joe's where I was keen to revisit because the barstaff throw the cocktail shakers around properly and serve tasty snacks! Access DENIED. The doorman said they were closing, and even after debating that 11pm didn't sound like a "late bar" as the sign said he just didn't want us in there. We were getting desperate, the champagne buzz had worn off and it was looking like a very sensible night ahead for us. It wasn't looking good, since everywhere had queues outside and the thought of joining them in heels wasn't terribly appealing.
More cobble hobbling and we found a decent place, paid for drinks and miraculously found a seat. It didn't take long before we were joined by some rather boring but pleasant enough bloke who took a shine to Angela, said comedy things like "You both look very alike", "Have you been here before?" and mispronounced every place name that came up in conversation. When he, AT LAST went to the bar, girly chat took place and I started yawning when he came back, Angela went to the ladies and I got talking to four very nice, but VERY young lads all aged 19, rather than talk to our new "friend" who was from Persia (he doesn't like saying Iran). They confirmed that everywhere was about £15 to get in, but at their tender age, having been ID'd on the door, couldn't recommend anywhere in particular. Angela tried to ditch the Persian by saying I was tired (remember my stage yawns) but he was having none of it, insisting that they walk me back to the hotel then they go out again! Then he tried to persuade me, as a friend that I should agree to this since she said it was mean. I said it was mean and that we'd come out to have fun together but he'd hogged her company all night. He showed no signs of giving up at all so I pulled out the Cancer Card. I said she wouldn't leave me because I'd had cancer and was still recovering (well it's not a million miles from the truth). The git didn't believe me!! I offered to show him my scars which he declined. But he did at least let us leave on our own. We were looking for somewhere to hide from him in case he decided to follow when a long haired French man appeared from nowhere and asked if we'd like to go to a club. Oh YES, but how much? £7 each.......DONE.
The club was called Salvador & Amanda and was Spanish. After initial apprehension, mixed with relief that we'd escaped Mr Dullsville, we walked down the steps into the basement club. It was already a great atmosphere, it was cosy not gloomy and not too big. We sat down and I had to fend off conversation from a rather dull, but probably very nice bloke from Norway who looked very out of place. We spotted a girl from Angela's village who even sat at our table, after checking the seats were free then ignored us and didn't acknowledge she knew who we were! Weird! There was a group of four dancing near us, really having a good time so we went for a wander and somehow got bought tequila slammers...........we spent the rest of the night chatting to Spanish and Mexican chaps who were just lovely and friendly. They weren't sleazy or anything, just well, NICE! I have a few photos on my phone with most of them in and outside the club which to be honest, I don't know who took!
After we left the club we went in search of food and found Mohamed who sold us some good coffee and falafels. Yum. Just as we were debating how to get back to the hotel in heels at 4am with a pedotaxi driver I sort of lost my footing on the kerb and erm.....fell off it. I was in a LOT of pain, so it must have hurt, given I'd have a few drinks. I couldn't get up........but I'd landed with the coffee upright and didn't spill one drop. The driver picked me up and made me sit on the seat of the trike. He took us (OK, should have seen this coming) to his mate's cab office. We did haggle them down a fiver.......and sauntered into the hotel at some ungodly hour. The guy on duty in reception greeted us with "You like dancing ladies?" I guess by the state of Angela's dirty bare feet, heels in hand and me limping it was obvious we'd been up to something.
We woke up after a few hours kip, and Angela eventually had to steel herself to check what the squeaking was just outside the window near her head, fearing a family of rats.
What she saw was one fat ugly baby pigeon and a scrawny weedy looking one. Little rat with wings was pecking the big one saying "Stop eating all the food you fat git", making a right old song and dance. Nearby was the gnarled remains of a dried up dead pigeon. I'm not sure if fat pigeon ate him, or just his food or if the weedy looking one nagged and pecked him to death. We reckoned the mum was squatting and had rung the council to take the dead one away but, well you know what they're like! She looked like she was probably on crack anyway (yes I know she was a pigeon but we'd had a lot of tequila the night before and they sort of developed human characteristics).
Despite the swelling on my right foot, the pain in my right hand and the HUGE graze on my left knee I was determined we should complete our weekend with gallery visits as planned.
So, hobbling like Tiny Tim along the riverside towards Tate Modern, a strange man dressed in black with a curly ginger ponytail slowed his pace to mine (my "mate" was steaming ahead forgetting I was lame) and asked in a mysterious low foreign accent
Man: "Are the eyes connected to the paranormal?"
Me: "Erm, no"
Man: "So you do not have second sight?"
Me: "Um, no, I don't think so"
He nodded and walked off.........then paused, turned around and came back to say
Man: "I once saw a king cobra dance to the tune of a flute, he had two blue eyes on his back".
He then gave me a knowing look and a smile, a nod and disappeared.
Weirdos, I draw them like water to a sponge. Dirty bath water.
Hayward gallery was pretty good - it was Psycho Buildings exhibition. We spent a well earned rest on the floor inside a plastic bubble with people crawling around on a suspended plastic shelf above us. We also spent, what felt like forever wandering (very slowly and painfully in my case) round the Tate Modern - as thought provoking as many of the works were, I was still pretty damn relieved to get to the top level - the overriding provoked thought being that of pain and the need to lie down and not move for a very long time.
More hobbling and limping required to get to the tube - Southwark station - and we just kept getting the giggles. To the point where we thought we MIGHT lose control - pelvic floor kinda control! Just as we stopped doubled over laughing at me hobbling twenty paces behind Angela and how pathetic I looked and felt some men across the road pointed and started taking the mickey. One of them was loading up a van with equipment and started chatting, asking if we were pissed. Another disappeared then reappeared with a bottle of cold water to hold on my swollen ankle. I was getting first aid in the middle of London from a man with a FILM CREW name tag.........they were apparently filming a new series of Minder where Shane Richie plays Arthur's nephew (well someone's nephew, maybe it's Terry's nephew). Sadly we didn't see Shane but two rather nice looking men in expensive suits got into a chauffeur driven car. They were probably famous.
All in all it was a pretty damn good weekend with a lot of laughing and I believe the laughing probably helped tone my abdominal muscles more than the two weeks at the gym I've missed because my ankle and wrist were too painful!
I can't believe it's taken me so long to get round to finish this. I think it's because I've been busy! Oh and I went out on a date with a man. For dinner. He's very nice!
Monday 25 August 2008
2008 Aug 25th - Another busy week.
Having spent a week in Spain, you'd think I'd have a quiet week last week?
Or not. Mon I went to work as usual, Tuesday I worked a half day from home over the course of the day because I had a check up with my surgeon. I have some "issues" still which I don't really want to broadcast but they have been contributing to my general unhappiness. Things may, or may not improve. He did make me feel a bit better by telling me I wasn't having a DRE (oh goody) but he did give me a bulky brown envelope.......containing some consent forms and the dreaded Picolax (bleugh). Yep it's disappearing camera time again! On the 4th of September after 24 hours of a very limited light diet and another of clear fluids only I get to be sedated again. This will be the first time I've actually had a full colonoscopy. Until now, I've only had the lower part of my colon, or where it used to be, examined. This time he's going to check the rest of it too for any precancerous cells, polyps etc and whip anything out if it's there.
Wednesday, back at work again and then a physio appointment on Thursday morning, followed by a trip to Lincoln for a tattoo. I always wanted to have some sort of commemorative tattoo to mark getting through the battery of tests and treatments, poison and surgery. Originally I was going to have the Beating Bowel Cancer logo somewhere where I could see it as a reminder, but really - how could I forget. In the end I decided to have something decorative over the most visible part of the 10" scar which runs from above my navel down well below my bikini line! I know butterflies and the whole rebirth theme is a little trite but they are pretty. I'm really pleased with it, the scar just disappears now, with just the small one from the ileostomy reversal still quite red. I may get some extension done in a few months time when that scar has gone white, but for now I don't look at at it and think "Oh look that's where Mr A ripped me apart and had a good rummage for a few hours". I think "Oooo pretty!". I didn't notice anyone staring at my scars on the beach in Spain when I was in my bikini (something I'd never do in England) but now I can bear my midriff with a little more pride. Lord only knows what Mr A is going to say when he sees it - I fear he'll tell me off because his stitching WAS amazing and for a scar it was bloody minimal, but I hope he'll understand.
It's just starting to peel a little now, but I'm putting Bepanthen cream on it twice a day and, like the others I have, you can't tell it's new. I went to a place recommended by two friends who have been there a few times already so I knew it was clean and safe and they know what they're doing. I saw the tattooist and the senior blokey (who is booked up until Christmas and a grandfather so has many years experience and a lot of happy returning customers).
I watched my big sister get married on Friday, to a man in a skirt. No, only joking, it was a kilt - he is Scottish after all! She looked beautiful, as did everyone else in the wedding party especially the bridesmaids (my nieces and her best friend's daughter) and it was a lovely day. They are a lovely couple and they are obviously very happy together, no one could escape noticing. The speeches were quite moving too, especially the groom's words about them being a family and how important it was that the children were also happy. When the two girls also made a little speech I was really struggling to hold back some tears. I have to say, I really don't usually like weddings. Possibly because after my own marriage which ended over a decade ago I just can't imagine being in that situation. Watching my previously shy, slightly inhibited sister throwing some shapes on the dancefloor with her new husband as though no-one was watching was an eye opener. It just proved to me how right they are for each other. It was also the loneliest moment I've had for a long time in a room full of people. I was sat alone, although I was related to people in the room, none of us are close because my mother moved me away from them before I started school and it's just not the same. I'm pleased to say I managed to stay until 10pm (and the buffet for yet more yummy food) before the drive back to feed Alfie and Skittles. I had another bag to pack for a weekend in London on Saturday.
Or not. Mon I went to work as usual, Tuesday I worked a half day from home over the course of the day because I had a check up with my surgeon. I have some "issues" still which I don't really want to broadcast but they have been contributing to my general unhappiness. Things may, or may not improve. He did make me feel a bit better by telling me I wasn't having a DRE (oh goody) but he did give me a bulky brown envelope.......containing some consent forms and the dreaded Picolax (bleugh). Yep it's disappearing camera time again! On the 4th of September after 24 hours of a very limited light diet and another of clear fluids only I get to be sedated again. This will be the first time I've actually had a full colonoscopy. Until now, I've only had the lower part of my colon, or where it used to be, examined. This time he's going to check the rest of it too for any precancerous cells, polyps etc and whip anything out if it's there.
Wednesday, back at work again and then a physio appointment on Thursday morning, followed by a trip to Lincoln for a tattoo. I always wanted to have some sort of commemorative tattoo to mark getting through the battery of tests and treatments, poison and surgery. Originally I was going to have the Beating Bowel Cancer logo somewhere where I could see it as a reminder, but really - how could I forget. In the end I decided to have something decorative over the most visible part of the 10" scar which runs from above my navel down well below my bikini line! I know butterflies and the whole rebirth theme is a little trite but they are pretty. I'm really pleased with it, the scar just disappears now, with just the small one from the ileostomy reversal still quite red. I may get some extension done in a few months time when that scar has gone white, but for now I don't look at at it and think "Oh look that's where Mr A ripped me apart and had a good rummage for a few hours". I think "Oooo pretty!". I didn't notice anyone staring at my scars on the beach in Spain when I was in my bikini (something I'd never do in England) but now I can bear my midriff with a little more pride. Lord only knows what Mr A is going to say when he sees it - I fear he'll tell me off because his stitching WAS amazing and for a scar it was bloody minimal, but I hope he'll understand.
It's just starting to peel a little now, but I'm putting Bepanthen cream on it twice a day and, like the others I have, you can't tell it's new. I went to a place recommended by two friends who have been there a few times already so I knew it was clean and safe and they know what they're doing. I saw the tattooist and the senior blokey (who is booked up until Christmas and a grandfather so has many years experience and a lot of happy returning customers).I watched my big sister get married on Friday, to a man in a skirt. No, only joking, it was a kilt - he is Scottish after all! She looked beautiful, as did everyone else in the wedding party especially the bridesmaids (my nieces and her best friend's daughter) and it was a lovely day. They are a lovely couple and they are obviously very happy together, no one could escape noticing. The speeches were quite moving too, especially the groom's words about them being a family and how important it was that the children were also happy. When the two girls also made a little speech I was really struggling to hold back some tears. I have to say, I really don't usually like weddings. Possibly because after my own marriage which ended over a decade ago I just can't imagine being in that situation. Watching my previously shy, slightly inhibited sister throwing some shapes on the dancefloor with her new husband as though no-one was watching was an eye opener. It just proved to me how right they are for each other. It was also the loneliest moment I've had for a long time in a room full of people. I was sat alone, although I was related to people in the room, none of us are close because my mother moved me away from them before I started school and it's just not the same. I'm pleased to say I managed to stay until 10pm (and the buffet for yet more yummy food) before the drive back to feed Alfie and Skittles. I had another bag to pack for a weekend in London on Saturday.
Wednesday 20 August 2008
2008 Aug 19th - It's been a while.....Ola Tossa!
I've been slacking, I know. Consider my knuckles rapped.
I thought I should mention my physiotherapy (can't remember if I already have...?). I started with weekly visits for the burning, tearing pains in my heels caused by achilles tendonitis. Initially I had ultrasound therapy and some manual jiggery pokery (I'd say massage but it hurt) and was given exercises to do at home. I've progressed to having more exercises to try and mobilise my nervous system and have bought a Therapy Top or wobble board to improve general leg strength and balance. I'm supposed to exercise three times a day - it's very time consuming and I do forget but it seems to be helping. Last visit a couple of weeks ago I had some sort of laser treatment and had to don a pair of incredibly UNsexy BLUE tinted goggles, just in case whilst lasering the back of my heels while I lay face down on the bed.......a stray red beam goes in my eye. Health & Safety - the opposite of the Fashion Police eh?
I've just come back from a week in Spain with one of my Best Friends. We boarded the plane and were quite excited to find two seats next to each other........until we found out why. The seats smelled of sick........some people had already moved they couldn't tolerate the stench. It was a short flight. Thankfully.
As soon as we stepped out of the plane door, whoompf! Heat. Blissful heat. And sun. Just what the Dr, oncologist, nurses and surgeon ordered.
We were a little overdressed for dinner in the evenings, the families preferring t-shirts and shorts or in one French woman's case a hideous towelling dress!!!
There were a few comedy moments - like the "underground car park". Firstly they said they had no space. Then they did. An uncertain receptionist followed us to the hire car and "tried" to remember where the car park was. She got in and, noticing my mate and me putting on seatbelts asked if she should do the same? The reply was "We're English, we like a seatbelt". Eventually after driving down a 45 degree slope which flattened out level (remember this) she got out and spent a lifetime trying to open the door. I was sent to assist. I opened it straight away and then the attempt to negotiate a 135 angle by a Peugot 207 commenced. As soon as I saw the skirt at the front about to crumple I screeched a little and made frantic "Back up!" signs. Having handed over an exhorbitant fee for the privilege of NOT being able to even access the car park we all but kidnapped the woman from the hotel to ensure we got a refund. I think they hated us from then on in.
Once I went to ask for the gym key (two bikes a pec dec and seated row machine) to be told it was shut. "Oh......what time is it open?" "9am" ......."Erm until WHEN?".......this was the same woman who led us to the carpark of death........no word of a lie, she turned around, looked at the clock which said 7.30pm and, turning back to face me, said "7.30". Yes. She hated us.
We alternated lazing on the beach with days out, including a drive to Tarragona (I drove, my feet complained the next day but it was a sort of mission to drive on the continent properly). On the way home we found ourselves driving through the streets of the old town of Tossa (where we were staying). Now I say streets. They were approximately 12 inches wider than the bloody car. It was dark. People were everywhere. They didn't move. Quite how we got out of the maze alive I have NO idea. The car remained unscathed, however we needed a stiff drink to settle our nerves and I earned myself a hi-five for zero damage to anyone or thing.
Tossa has a few beaches, again, I SAY beaches........general conclusion was they imported tons of cat litter to put where the sand should have been. Still, it didn't get everywhere like sand does.
Generally we kept it sensible on the booze, until Tuesday night. We accidentally drank a few too many jugs of sangria (red wine, cointreau and brandy in this particular bar's recipe), followed by a beer which didn't hit the spot at the hotel bar, and topped off with a mojito whilst playing pool (much to the dismay of the barmen who wanted to go to bed). I lost at pool. My mate lost her sangria. Apparently she kept banging into my bed on her way back from the bathroom several times. Me, being the light sleeper I am slept through in my alcohol coma. Neither of us made breakfast the next day and the cleaners were turned away, the blackout curtain stayed closed. Grim. Still, we made it to Barcelona on the Thursday, a day later than planned.
The Park Guell (Gaudi's park) was amazing, as was strolling down the 2km long Las Ramblas looking at the birds and small animals for sale (well the animals in cages wasn't great but we cooed at some rabbits). We had a slap up meal in a lovely restaurant and I got tipsy on an Irish coffee and half a litre of beer. If you haven't been, I can recommend a weekend in Barcelona and just hit the park and the streets, there's plenty to look at! Plus we did a little shopping in Zara and Mango...oops.
Needless to say, as I'm supposed to be VERY careful in the sun until 12 months after chemo finished (December 2008) I used factor 40 all the time. I did colour a teeny bit and have lots of freckles. Mostly I just loved being away in the warm. No housework, no need to be anywhere at any time and good company.
I'm also having counselling - from the Cancer Counselling Trust. She thinks I need more long term counselling (again) since the maximum 9 sessions won't scratch the surface of what's messing up my head. Cancer has just been another catalyst I guess. The loneliness I had before has just been amplified, but now I feel I'm in a worse position to change things. We're working on it though.
I thought I should mention my physiotherapy (can't remember if I already have...?). I started with weekly visits for the burning, tearing pains in my heels caused by achilles tendonitis. Initially I had ultrasound therapy and some manual jiggery pokery (I'd say massage but it hurt) and was given exercises to do at home. I've progressed to having more exercises to try and mobilise my nervous system and have bought a Therapy Top or wobble board to improve general leg strength and balance. I'm supposed to exercise three times a day - it's very time consuming and I do forget but it seems to be helping. Last visit a couple of weeks ago I had some sort of laser treatment and had to don a pair of incredibly UNsexy BLUE tinted goggles, just in case whilst lasering the back of my heels while I lay face down on the bed.......a stray red beam goes in my eye. Health & Safety - the opposite of the Fashion Police eh?
I've just come back from a week in Spain with one of my Best Friends. We boarded the plane and were quite excited to find two seats next to each other........until we found out why. The seats smelled of sick........some people had already moved they couldn't tolerate the stench. It was a short flight. Thankfully.
As soon as we stepped out of the plane door, whoompf! Heat. Blissful heat. And sun. Just what the Dr, oncologist, nurses and surgeon ordered.
We were a little overdressed for dinner in the evenings, the families preferring t-shirts and shorts or in one French woman's case a hideous towelling dress!!!
There were a few comedy moments - like the "underground car park". Firstly they said they had no space. Then they did. An uncertain receptionist followed us to the hire car and "tried" to remember where the car park was. She got in and, noticing my mate and me putting on seatbelts asked if she should do the same? The reply was "We're English, we like a seatbelt". Eventually after driving down a 45 degree slope which flattened out level (remember this) she got out and spent a lifetime trying to open the door. I was sent to assist. I opened it straight away and then the attempt to negotiate a 135 angle by a Peugot 207 commenced. As soon as I saw the skirt at the front about to crumple I screeched a little and made frantic "Back up!" signs. Having handed over an exhorbitant fee for the privilege of NOT being able to even access the car park we all but kidnapped the woman from the hotel to ensure we got a refund. I think they hated us from then on in.
Once I went to ask for the gym key (two bikes a pec dec and seated row machine) to be told it was shut. "Oh......what time is it open?" "9am" ......."Erm until WHEN?".......this was the same woman who led us to the carpark of death........no word of a lie, she turned around, looked at the clock which said 7.30pm and, turning back to face me, said "7.30". Yes. She hated us.
We alternated lazing on the beach with days out, including a drive to Tarragona (I drove, my feet complained the next day but it was a sort of mission to drive on the continent properly). On the way home we found ourselves driving through the streets of the old town of Tossa (where we were staying). Now I say streets. They were approximately 12 inches wider than the bloody car. It was dark. People were everywhere. They didn't move. Quite how we got out of the maze alive I have NO idea. The car remained unscathed, however we needed a stiff drink to settle our nerves and I earned myself a hi-five for zero damage to anyone or thing.
Tossa has a few beaches, again, I SAY beaches........general conclusion was they imported tons of cat litter to put where the sand should have been. Still, it didn't get everywhere like sand does.
Generally we kept it sensible on the booze, until Tuesday night. We accidentally drank a few too many jugs of sangria (red wine, cointreau and brandy in this particular bar's recipe), followed by a beer which didn't hit the spot at the hotel bar, and topped off with a mojito whilst playing pool (much to the dismay of the barmen who wanted to go to bed). I lost at pool. My mate lost her sangria. Apparently she kept banging into my bed on her way back from the bathroom several times. Me, being the light sleeper I am slept through in my alcohol coma. Neither of us made breakfast the next day and the cleaners were turned away, the blackout curtain stayed closed. Grim. Still, we made it to Barcelona on the Thursday, a day later than planned.
The Park Guell (Gaudi's park) was amazing, as was strolling down the 2km long Las Ramblas looking at the birds and small animals for sale (well the animals in cages wasn't great but we cooed at some rabbits). We had a slap up meal in a lovely restaurant and I got tipsy on an Irish coffee and half a litre of beer. If you haven't been, I can recommend a weekend in Barcelona and just hit the park and the streets, there's plenty to look at! Plus we did a little shopping in Zara and Mango...oops.Needless to say, as I'm supposed to be VERY careful in the sun until 12 months after chemo finished (December 2008) I used factor 40 all the time. I did colour a teeny bit and have lots of freckles. Mostly I just loved being away in the warm. No housework, no need to be anywhere at any time and good company.
I'm also having counselling - from the Cancer Counselling Trust. She thinks I need more long term counselling (again) since the maximum 9 sessions won't scratch the surface of what's messing up my head. Cancer has just been another catalyst I guess. The loneliness I had before has just been amplified, but now I feel I'm in a worse position to change things. We're working on it though.
Sunday 6 July 2008
2008 July 6th - Scan Results....& Having a Ball
I'm really slacking at this blogging lark. Still at least that means I have other things to occupy other than constant navel gazing, I think it's a progression of sorts?
I can't believe I didn't jump straight on the keyboard and tell you all that I got a clear scan.........sorry let me repeat that A CLEAR SCAN. My surgeon rang me two days after the scan a couple of weeks ago just as my key was in the door at 7pm. I'd just been to Tesco with a friend who was there to share the results and give me a big hug, sit me on the sofa and crack open a bottle of wine.
First thing I did was text everyone I could, after failing to get through on the phone to Umpalumpa. Then I rang my surrogate mum Aunty Susan. It was emotional. I don't think it actually sunk in straight away, or even for the next day or two. It means I can get on with my life now, and other than a colonoscopy soon and the three monthly blood tests........well there's always going to be SOMETHING to worry about isn't there, that's just life, at least it is LIFE.
I had to tell the people who were in at work the next day and got a hug from one of the "boys" which just made me cry. It was all a bit surreal, I don't think one person in the entire room had any idea how dizzy and giddy and upside down I was feeling.
I'm becoming closer friends with a man who isn't ever going to return my feelings, but I can't NOT be friends........is that the saddest thing? I just don't want to cut someone out of my life just because they can't offer me what I want. I haven't got a clue if he knows how I really feel, he thinks he does........but I'm not convinced. If I thought someone liked me this much I'd be keeping them as far away from me as possible, not just arms length. My life is going to turn into "My Best Friend's Wedding". Not that we're "best" friends, but the plot is how I see things turning out. Any tips on making yourself go off someone?
I know I've changed since finding out I had cancer, but I guess my heart doesn't work any differently.
Oh and I've got a new kitchen! Did I mention that last time? I can't remember. It's lovely. I'm just waiting for the floor and walls to be tiled, plinths fitted and then I'll need to wave a paintbrush around and I'm sorted. Next task - the living room.
I've also finally got a physio appointment for the achilles tendonitis. Seems like I got seen in good time because it hasn't progressed too far up my leg. I had to lie on my front whilst my heels were massaged (very deep, quite painful!) in turn, then had each one treated with ultrasound. I have some stretches to do and should also try to do the massage myself, since I'm on my own and don't have a significant other to do it for me. If this doesn't improve things then I may have acupunture or steroid injections. Mmmm more needles. Great!
I'm back on the HRT after a six week break and finding out the cervical ectropian wasn't actually anything more sinister. Still waiting to see if I start bleeding again and then need cyrosurgery on me lady bits EEK! I might start listing all the procedures and conditions I've been diagnosed with. Quite how I get out of bed in the morning I don't know haha! They're all relatively minor things though, although my hips really do protest sometimes and I feel 90. Joe 90 - stiff and wooden.
Last night was the Round Table ball. Balloons, booze and boogying down! Food was included of course. It was strictly black tie, which is lovely - I like a man in a suit.......not that any of them were mine to like, but still. I think the physio must have done the trick, however temporary because I managed to dance quite a lot in some fairly high heels - although heels actually make the pain go away because the tendons aren't being stretched at all. I didn't fall over once, I must be getting better.
A few of us went into town afterwards (why, why did I agree to this at 1am?) so more dancing, but by this time my feet were protesting but not at the moment when Fit Andy from the gym gave me a massive hug and a drunken grope (he's just pure muscle but very nice with it).
It's Umpalumpa's birthday today so happy birthday little sis! xxx (She's the one on the left in the pic of three of us girls, that's Paul who invited us to the ball and his cousin Sue in the other pic)
I can't believe I didn't jump straight on the keyboard and tell you all that I got a clear scan.........sorry let me repeat that A CLEAR SCAN. My surgeon rang me two days after the scan a couple of weeks ago just as my key was in the door at 7pm. I'd just been to Tesco with a friend who was there to share the results and give me a big hug, sit me on the sofa and crack open a bottle of wine.
First thing I did was text everyone I could, after failing to get through on the phone to Umpalumpa. Then I rang my surrogate mum Aunty Susan. It was emotional. I don't think it actually sunk in straight away, or even for the next day or two. It means I can get on with my life now, and other than a colonoscopy soon and the three monthly blood tests........well there's always going to be SOMETHING to worry about isn't there, that's just life, at least it is LIFE.
I had to tell the people who were in at work the next day and got a hug from one of the "boys" which just made me cry. It was all a bit surreal, I don't think one person in the entire room had any idea how dizzy and giddy and upside down I was feeling.
I'm becoming closer friends with a man who isn't ever going to return my feelings, but I can't NOT be friends........is that the saddest thing? I just don't want to cut someone out of my life just because they can't offer me what I want. I haven't got a clue if he knows how I really feel, he thinks he does........but I'm not convinced. If I thought someone liked me this much I'd be keeping them as far away from me as possible, not just arms length. My life is going to turn into "My Best Friend's Wedding". Not that we're "best" friends, but the plot is how I see things turning out. Any tips on making yourself go off someone?
I know I've changed since finding out I had cancer, but I guess my heart doesn't work any differently.
Oh and I've got a new kitchen! Did I mention that last time? I can't remember. It's lovely. I'm just waiting for the floor and walls to be tiled, plinths fitted and then I'll need to wave a paintbrush around and I'm sorted. Next task - the living room.
I've also finally got a physio appointment for the achilles tendonitis. Seems like I got seen in good time because it hasn't progressed too far up my leg. I had to lie on my front whilst my heels were massaged (very deep, quite painful!) in turn, then had each one treated with ultrasound. I have some stretches to do and should also try to do the massage myself, since I'm on my own and don't have a significant other to do it for me. If this doesn't improve things then I may have acupunture or steroid injections. Mmmm more needles. Great!
I'm back on the HRT after a six week break and finding out the cervical ectropian wasn't actually anything more sinister. Still waiting to see if I start bleeding again and then need cyrosurgery on me lady bits EEK! I might start listing all the procedures and conditions I've been diagnosed with. Quite how I get out of bed in the morning I don't know haha! They're all relatively minor things though, although my hips really do protest sometimes and I feel 90. Joe 90 - stiff and wooden.
Last night was the Round Table ball. Balloons, booze and boogying down! Food was included of course. It was strictly black tie, which is lovely - I like a man in a suit.......not that any of them were mine to like, but still. I think the physio must have done the trick, however temporary because I managed to dance quite a lot in some fairly high heels - although heels actually make the pain go away because the tendons aren't being stretched at all. I didn't fall over once, I must be getting better.
A few of us went into town afterwards (why, why did I agree to this at 1am?) so more dancing, but by this time my feet were protesting but not at the moment when Fit Andy from the gym gave me a massive hug and a drunken grope (he's just pure muscle but very nice with it).
It's Umpalumpa's birthday today so happy birthday little sis! xxx (She's the one on the left in the pic of three of us girls, that's Paul who invited us to the ball and his cousin Sue in the other pic)
Sunday 15 June 2008
2008 Jun 15th - BBC catch & Race for Life 2008
Ooops, I was reminded this week that I've not posted for the best part of a month! I'm not sure where the time has gone at all.
I intended to post and tell you all about May 16th when me and Beckie went down to the big smoke for the Beating Bowel Cancer event. A room full of Patient Voices (patients who try and spread the word, are there for other patients etc) and their guests met up at the Institute of Directors on Pall Mall. We were grouped on tables by geographical region as far as possible to try and come up with some plans to get the word out there about bowel cancer, how to spot it early and about the charity, with people we live near.
It seemed like a very long day, not least because I was seriously hungover (remember Mr Date/not Date?.....turns out he would like me but has a "complication" who is presumably female). It was lovely to meet some of my bum bandit friends again and I was especially delighted to see Alison, Debsi and Peter who although we've been sharing our ups and downs for well over a year have not managed to meet until the day.
I was sat next to a retired judge......I seriously hoped he couldn't smell the booze on me :o(
Lunch was a buffet but it was served to us by very smartly dressed young and pretty people, which is always nice! Special guest Gillian McKeith was there to give a little speech encouraging us to continue talking about poo.......kinda hard for me NOT to talk about it to be fair, and present awards to top fundraisers. I had managed not to cry despite meeting Peter who looked amazing only 2 weeks out of his ileostomy reversal operation until Alison was given her award. They did that thing where they drop really massive clues about who it is (unless you don't know them) and our Alison who has been living with bowel cancer in her liver for over 5 years now managed to complete an MA during that time. She's looking to publish some of her poetry to raise further funds. As soon as the poetry was mentioned I knew it was her and looked across to Beckie who also nodded and mouthed "Alison!". Couldn't stop a few tears right then. A chap on our table also got an award, not least for climbing Killimanjaro.
I agreed to do some stuff to help spread the word but as a month has gone by and I haven't even written about it, needless to say I've done nothing yet! What a slacker.....but I have been busy....living I guess?
Anyway, I got my smear result back, it's clear! Woop woop.
I've been in to see my surgeon again since my GP, trying to speed up the process, ordered a CT scan weeks ago. The request was eventually returned and denied as GPs can't do that. My surgeon has reordered one and it's on Tuesday 17th June (next week). I'm not going to pretend I'm OK about it, I've wanted this scan for so long but now it's come around I'm dreading the results.
On Thursday I spoke to a friend whose father's tumour marker counts have risen, another who's own brain tumour appears not to have been completely removed last week and my ex mother in law emailed to say her husband is in hospital, turns out he had a stroke. The news that hit me hardest was a very good bowel cancer buddy discovering he has an awful lot of small tumours all over his lungs. Over 20 in one of them.......after getting rid of originally "inoperable" liver spread from his bowel, now this. I shed a few tears and then realised I have nothing to cry about. I'm on the mend (pending scan) and the only thing I can do is keep it together for everyone.
On to today - Race for Life in Boston and my little Beckie was running after practising in the gym on a treadmill. She was a little nervous about how running on a real surface might be, but she managed to sprint in coming TWELFTH! 
Tuesday 20 May 2008
2008 May 20th - Hangovers
So.......where was I? It's so hard to keep up these blogs now I'm back in the "real" world of work, socialising and the like! I'm pleased to say I'm still going to the gym and although I still have fat in places I really don't need or want it, the muscle is developing well underneath it.
Work is going really well too (yeah so my boss and workmates haven't ACTUALLY said so, but they haven't sacked or lynched me yet). Little things come back to me, like I remembered F4 repeats formatting functions, I wrote a lookup formula without even thinking....pivot tables again, was OK with those. I can even remember bigger issues around our industry, which to be honest I thought I didn't give a rat's arse about (and we know how I feel about rats, especially in my kitchen) but my work ethic doesn't seem to have changed dramatically. I won't be taking work home ever again, I won't be rushing into full time work at all if I have anything to do with it. Everyone tells me it'll be a year or so before I wake up and realise I'm better. Nurses, chemo nurses, MacMillan nurses, my oncologist. So I shall indeed be taking things slowly.
Oh, also as well as the fantastic healthcare package through work and the insurance which kept me at half pay for all this time they're trying to make me to go to REHAB! I actually was saying no to start with, but on reflection I think I like the extra attention.
I should explain, it's a rehabilitation back into the workplace service. I have a woman ring me up and check how I am and offer to help me with suggestions on working around my problems and supporting me in any way she can. This could be by talking to my employers should I find myself wanting to ask something but unable to myself. Right now things are working out, I was doing three days Wed to Fri, but my line manager suggested Thu to Mon so I still get continuous work days. I was worried that if I alternated days off I'd lose continuity or have to keep dumping work on team mates, or worse it would affect the relationship with the partner whose titles I work on. (See perfect work ethic I have there, if you're an employer). This week I worked Monday and spent today doing housework, well........there's always more to be done but I'm not burning myself out on my days off! Tomorrow I'm out for coffee and cake mmmm and then probably more housework. Two days at work, then it's the weekend by which time the house should be fairly tidy.
So, what else have I been getting up to.....hmmm. Well I managed to go on three dates with three different men in three weeks. The first two were Hmmm no ta, Hmm no ta and the third I really like, but I'm at the stage where I don't actually know if it was a DATE date or just a really nice day out? On paper I think he likes me "like that" by the amount of contact we have, but I can't help doubting things, until proven otherwise. I'm trying really hard to enjoy his company for what it is, very good company. I feel like a normal person, a woman in fact which I've not really felt for a very long time. I don't feel like a patient, a sick relative, a mother who cannot mother. I'm just me, the new slightly improved, slightly battered me. I like it.
So that's great you're all thinking? Until I decided after stressing myself into being awake half the night and having to call in sick (sick, you've only just come back to work woman) about the bleeding and the threat of cervical cancer (must stop saying that, there's no real reason to think it could be that, except.......history) or the thought of never being able to NOT bleed. It's boring. It's upsetting and it's not really condusive to an "adult" relationship........not that I need to worry about that yet. So after a stressful week of seeing doctors and surgeons and throwing me back into the medical world again, I got drunk. Not just tipsy, not at home had a bottle of wine over a few hours with a mean drunk. Absolutely MEMORY LOSS, totally incapacitated, possibly incoherent, BLADDERED.
I didn't plan it! I was staying at my sister's the night before we travelled to London for the Beating Bowel Cancer patient voices event........more about that later. I dragged her out for ONE drink, then we had laptops, Facebook and msn, oh and doritos for the rest of the evening planned. Perhaps painting nails and face masks. And an early night. Over a bottle of red wine later (I usually drink rose because red makes me ill and need the loo lots at night) later I'd left the pub for some "fresh air" I think. We'd been having some fun and banter with some locals. Actually they were having fun with us taking the mickey over various things, but with good humour, we had a top night! The DATE/not date man was there and came out to check on me........and that's my last memory until 5am the next morning when I awoke in a strange bed (my sister's) fully clothed (so far so good), and alone (phew). With a bucket (and red wine esque contents) next to the bed (oh heck).
Quite how I drove the hour to Peterborough train station without feeling too bad I'm not sure. An hour train journey and half hour cab journey later we were outside the most amazing building on Pall Mall. During the cab journey I discovered, thanks to mobile phones, that I'd launched myself on DATE/not date man and tried to "rearrange his tonsils".
OMG.
I'd previously discovered that the bucket contents weren't the only fallout from the red wine......the pub meal I'd eaten was mostly residing in my sister's backyard drain grille. Great. Hang on, where did the tonsil hockey take place? Yep, you guessed it, shortly before I emptied my stomach over my sister's backyard in front of the poor bloke I'd been molesting and claiming I "really really liked" to his face..........he helped her turn off the outside tap after she hosed the yard down.
So he gets brownie points for still talking to me! I think I've lost any I ever had :o(
He insists it doesn't matter, it's fine. I think I'll wait and see.
Work is going really well too (yeah so my boss and workmates haven't ACTUALLY said so, but they haven't sacked or lynched me yet). Little things come back to me, like I remembered F4 repeats formatting functions, I wrote a lookup formula without even thinking....pivot tables again, was OK with those. I can even remember bigger issues around our industry, which to be honest I thought I didn't give a rat's arse about (and we know how I feel about rats, especially in my kitchen) but my work ethic doesn't seem to have changed dramatically. I won't be taking work home ever again, I won't be rushing into full time work at all if I have anything to do with it. Everyone tells me it'll be a year or so before I wake up and realise I'm better. Nurses, chemo nurses, MacMillan nurses, my oncologist. So I shall indeed be taking things slowly.
Oh, also as well as the fantastic healthcare package through work and the insurance which kept me at half pay for all this time they're trying to make me to go to REHAB! I actually was saying no to start with, but on reflection I think I like the extra attention.
I should explain, it's a rehabilitation back into the workplace service. I have a woman ring me up and check how I am and offer to help me with suggestions on working around my problems and supporting me in any way she can. This could be by talking to my employers should I find myself wanting to ask something but unable to myself. Right now things are working out, I was doing three days Wed to Fri, but my line manager suggested Thu to Mon so I still get continuous work days. I was worried that if I alternated days off I'd lose continuity or have to keep dumping work on team mates, or worse it would affect the relationship with the partner whose titles I work on. (See perfect work ethic I have there, if you're an employer). This week I worked Monday and spent today doing housework, well........there's always more to be done but I'm not burning myself out on my days off! Tomorrow I'm out for coffee and cake mmmm and then probably more housework. Two days at work, then it's the weekend by which time the house should be fairly tidy.
So, what else have I been getting up to.....hmmm. Well I managed to go on three dates with three different men in three weeks. The first two were Hmmm no ta, Hmm no ta and the third I really like, but I'm at the stage where I don't actually know if it was a DATE date or just a really nice day out? On paper I think he likes me "like that" by the amount of contact we have, but I can't help doubting things, until proven otherwise. I'm trying really hard to enjoy his company for what it is, very good company. I feel like a normal person, a woman in fact which I've not really felt for a very long time. I don't feel like a patient, a sick relative, a mother who cannot mother. I'm just me, the new slightly improved, slightly battered me. I like it.
So that's great you're all thinking? Until I decided after stressing myself into being awake half the night and having to call in sick (sick, you've only just come back to work woman) about the bleeding and the threat of cervical cancer (must stop saying that, there's no real reason to think it could be that, except.......history) or the thought of never being able to NOT bleed. It's boring. It's upsetting and it's not really condusive to an "adult" relationship........not that I need to worry about that yet. So after a stressful week of seeing doctors and surgeons and throwing me back into the medical world again, I got drunk. Not just tipsy, not at home had a bottle of wine over a few hours with a mean drunk. Absolutely MEMORY LOSS, totally incapacitated, possibly incoherent, BLADDERED.
I didn't plan it! I was staying at my sister's the night before we travelled to London for the Beating Bowel Cancer patient voices event........more about that later. I dragged her out for ONE drink, then we had laptops, Facebook and msn, oh and doritos for the rest of the evening planned. Perhaps painting nails and face masks. And an early night. Over a bottle of red wine later (I usually drink rose because red makes me ill and need the loo lots at night) later I'd left the pub for some "fresh air" I think. We'd been having some fun and banter with some locals. Actually they were having fun with us taking the mickey over various things, but with good humour, we had a top night! The DATE/not date man was there and came out to check on me........and that's my last memory until 5am the next morning when I awoke in a strange bed (my sister's) fully clothed (so far so good), and alone (phew). With a bucket (and red wine esque contents) next to the bed (oh heck).
Quite how I drove the hour to Peterborough train station without feeling too bad I'm not sure. An hour train journey and half hour cab journey later we were outside the most amazing building on Pall Mall. During the cab journey I discovered, thanks to mobile phones, that I'd launched myself on DATE/not date man and tried to "rearrange his tonsils".
OMG.
I'd previously discovered that the bucket contents weren't the only fallout from the red wine......the pub meal I'd eaten was mostly residing in my sister's backyard drain grille. Great. Hang on, where did the tonsil hockey take place? Yep, you guessed it, shortly before I emptied my stomach over my sister's backyard in front of the poor bloke I'd been molesting and claiming I "really really liked" to his face..........he helped her turn off the outside tap after she hosed the yard down.
So he gets brownie points for still talking to me! I think I've lost any I ever had :o(
He insists it doesn't matter, it's fine. I think I'll wait and see.
Sunday 27 April 2008
2008 May 9th - Busy Busy Busy!
Where shall I start?
After France, the day after I got home I had what I can only describe as a light period (sorry chaps, fact of life and all that). Having gone through an instant radiation induced menopause in early 2007 I was a) annoyed and later b) a bit scared. I've been on HRT now for six months and I'm supposed to have a withdrawal bleed in the first few months according to the notes but I never did so for it to start out of the blue made me panic a teeny bit. I had an oncology appointment so figured I could mention it there first.
The Lone Ranger said I should get it all checked out (meaning a smear I assume) and referred if necessary. He also said I should look into getting massage/physiotherapy for my feet since they're just getting worse. That aside, apparently I was looking really well and shouldn't consider going to work full time for some time and to take it easy. He said if it was up to him I'd have another three months off to enjoy the summer before having to work. Guess what? It's NOT up to him.
I eventually got a GP appointment for the following week, discussed it with him and he persuaded me it had taken my womb all this time to rebuild a lining to shed and it was just a "normal" withdrawl bleed - a fake period, to be expected on this sort of HRT. I mentioned that I'd also bled on the two occasions I'd had *cough* physical relations but we also talked about my painful feet, which seems to be achilles tendonitis. Google research tells me that amongst other causes, platinum based chemo is to blame in my case. I can self refer (done that) for physio but he said I should try stretching it in the meantime.
I returned to work on Wed 23rd April and have now done three days for three weeks......except this week. I had some coffee late Thursday night which probably wasn't a good idea and lay awake with stuff buzzing round my head on a caffeine high until gone 4am. NOT a good idea on a school night, I wouldn't mind if I'd been drunk but although I'd been to the pub (with a very nice man) I was driving.
Just to throw a spanner in the works, as if it's not a minor stress enough that I've still not officially had a clear scan, I've been bleeding again this week, it started as spotting and I wasn't sure of the origin (this is me we're talking about I bleed at the drop of a hat lately) but is definitely becoming more noticable but this time it started in the middle of my tablets, not after the full monthly pack.
Having booked a smear since it was due soon which GP said should reassure me on the initial bleeding, I discovered that until you get your invitation letter you can't have a smear!
Does every other woman know this? Apparently if your surgery sends a smear slide off to the lab one DAY before your letter, they send it back untested!!! I sort of lost the plot a bit and felt all the same panic and lack of control, the fear, the terrible powerless feeling that I had back in October 2006 when I was pushing for tests for bowel cancer. Government guidelines and rules and regulations coming between me and my peace of mind when I most need it. To top it off, as I sought refuge in a car park near my surgery after leaving quickly before I cried in front of everyone, some idiot sped round a roundabout and tried to push in front of me, followed me into the carpark and had a go at me for "nearly taking his front end off". It's bollocks. He was in the lane nearest the roundabout when I was already taking the exit he decided he wanted to take. He got some choice French words thrown at him and after accusing me of being aggressive I asked him how many times he'd had cancer and to go and multiply.........It's not often I let all this crap get to me but sometimes I am ashamed to say it does and I react in a way I'm not really proud of but I'm only human and it's hard. Perfect is boring anyway.
So, my GP rang me at home to "chat" about things and I told him about the new bleeding and as he's away most of next week has squeezed me in on Monday morning. I think it's 4-6 weeks for results on a smear. He said there are other HRT causes of bleeding but at least now I have my letter I can have the smear quickly.
Here's one up for discussion:
At what point in my post diagnosis life do I risk another relationship? I was hoping that returning to work I'd have some sort of NED clean sheet. (No Evidence of Disease). In it's absence I don't think it's fair to inflict my possible future upon any unsuspecting (or knowledgeable) male. Always waiting.........waiting for appointments, waiting for tests to be booked, waiting for results, waiting for treatment, waiting for reassessment...........and round and round and round again. Stop the world, I wanna get off. Just for a little while.
After France, the day after I got home I had what I can only describe as a light period (sorry chaps, fact of life and all that). Having gone through an instant radiation induced menopause in early 2007 I was a) annoyed and later b) a bit scared. I've been on HRT now for six months and I'm supposed to have a withdrawal bleed in the first few months according to the notes but I never did so for it to start out of the blue made me panic a teeny bit. I had an oncology appointment so figured I could mention it there first.
The Lone Ranger said I should get it all checked out (meaning a smear I assume) and referred if necessary. He also said I should look into getting massage/physiotherapy for my feet since they're just getting worse. That aside, apparently I was looking really well and shouldn't consider going to work full time for some time and to take it easy. He said if it was up to him I'd have another three months off to enjoy the summer before having to work. Guess what? It's NOT up to him.
I eventually got a GP appointment for the following week, discussed it with him and he persuaded me it had taken my womb all this time to rebuild a lining to shed and it was just a "normal" withdrawl bleed - a fake period, to be expected on this sort of HRT. I mentioned that I'd also bled on the two occasions I'd had *cough* physical relations but we also talked about my painful feet, which seems to be achilles tendonitis. Google research tells me that amongst other causes, platinum based chemo is to blame in my case. I can self refer (done that) for physio but he said I should try stretching it in the meantime.
I returned to work on Wed 23rd April and have now done three days for three weeks......except this week. I had some coffee late Thursday night which probably wasn't a good idea and lay awake with stuff buzzing round my head on a caffeine high until gone 4am. NOT a good idea on a school night, I wouldn't mind if I'd been drunk but although I'd been to the pub (with a very nice man) I was driving.
Just to throw a spanner in the works, as if it's not a minor stress enough that I've still not officially had a clear scan, I've been bleeding again this week, it started as spotting and I wasn't sure of the origin (this is me we're talking about I bleed at the drop of a hat lately) but is definitely becoming more noticable but this time it started in the middle of my tablets, not after the full monthly pack.
Having booked a smear since it was due soon which GP said should reassure me on the initial bleeding, I discovered that until you get your invitation letter you can't have a smear!
Does every other woman know this? Apparently if your surgery sends a smear slide off to the lab one DAY before your letter, they send it back untested!!! I sort of lost the plot a bit and felt all the same panic and lack of control, the fear, the terrible powerless feeling that I had back in October 2006 when I was pushing for tests for bowel cancer. Government guidelines and rules and regulations coming between me and my peace of mind when I most need it. To top it off, as I sought refuge in a car park near my surgery after leaving quickly before I cried in front of everyone, some idiot sped round a roundabout and tried to push in front of me, followed me into the carpark and had a go at me for "nearly taking his front end off". It's bollocks. He was in the lane nearest the roundabout when I was already taking the exit he decided he wanted to take. He got some choice French words thrown at him and after accusing me of being aggressive I asked him how many times he'd had cancer and to go and multiply.........It's not often I let all this crap get to me but sometimes I am ashamed to say it does and I react in a way I'm not really proud of but I'm only human and it's hard. Perfect is boring anyway.
So, my GP rang me at home to "chat" about things and I told him about the new bleeding and as he's away most of next week has squeezed me in on Monday morning. I think it's 4-6 weeks for results on a smear. He said there are other HRT causes of bleeding but at least now I have my letter I can have the smear quickly.
Here's one up for discussion:
At what point in my post diagnosis life do I risk another relationship? I was hoping that returning to work I'd have some sort of NED clean sheet. (No Evidence of Disease). In it's absence I don't think it's fair to inflict my possible future upon any unsuspecting (or knowledgeable) male. Always waiting.........waiting for appointments, waiting for tests to be booked, waiting for results, waiting for treatment, waiting for reassessment...........and round and round and round again. Stop the world, I wanna get off. Just for a little while.
Wednesday 16 April 2008
2008 Apr 16th - Au Revoir Biz et Mimi :o(
After three years of only providing my passport as proof of citizenship and identity when registering with work agencies (which proved pointless because then I found out cancer was eating me from the inside out) I used it for it's intended purpose last week!
I booked a ticket just before midnight on Monday and at 8am Wednesday was on the way to the train station. By the afternoon I was inhaling 3 month old baby smell and sitting on a navy version of my own sofa!
On Thursday I went with my oldest friend (of 26 years) to collect her eldest daughter from l'ecole. There was much kissing and chat (not from me) and I got a good look at the infamous Frederic, Elizabeth's beloved teacher (you wouldn't say no girls). We'd spent the day doing pretty much what you do when you've known someone that long and just hanging out - I even managed to take over ironing the 100% cotton bed linen for the gite when one Hayley's French friends came round. It's weird how you just fall into things so quickly, like they happen every day. Even though they moved out there three years ago and it was my first visit (oops) we've been in touch at least weekly, often daily through msn - free chat, you can't knock it, but it's not quite the same as arriving at the airport where there's a huge long hug awaiting you and making your luggage feel weightless all of a sudden.
On Friday it was lunch out to be ogled by hoards of French workmen at Le Lion D'Or with Christianne (and baby Mimi of course) and obviously I had to help drink the bottle of red wine that was present on every table but did resist knocking back the cider, wow self control, is that a side effect of cancer treatment? I had thankfully packed a pair of 3 in heel boots so I was the tallest person in the entire restaurant - yes they were probably only staring at my height but I don't care, there were real MEN looking at me when I went to get my buffet starters!
We had raclette in the evening - yummy! Google it, I'm not your French dictionary! OK, OK, it's a large griddle where you heat salted meats and little mini pans take slices of cheese which melts underneath and can then be scraped off onto the rest of the food waiting patiently on your plate, we had potatoes and salad with it and it was rather yummy, though after pigging out at lunch I was worrying about my lack of gym visits AND the good food.
Us four girlies drove into Fougeres to the market and I tried some clothes on in a boutique but wasn't quite feeling it - everything seemed to cut across the widest part of my thighs so I restrained myself from buying "just because I like it". Elizabeth had been promised MacDonalds as a treat so I had Le Menu and even managed to go back and tell the young (not spotty) lad he'd forgotten my coffee (after a reminder from Hayley, my O level French is still buried very deep back in the 1980s).
The husband of the French visitor earlier in the week came by (Hayley is doing some invitations for them on the computer) and after mentioning who I was, then discussing the health of one of the fish in the tank, Laurent enquired if "she is single", don't ask me WHY Hayley assumed this was about the fish, but she did - much to Laurent's amusement. Apparently they always ask, but I'm pretending it's because his single brother is incredibly hot and rich.........yeah dream on.
All too soon it was time to come home, after croissants and scrambled eggs we set off for Pleurtuit and accidentally ended up in a crepery for galette complete and a cup of cider (when in France! ). More coffee in the airport bar (slightly different setting to those lazy Saturday mornings when we were kids drinking black coffee in Hayley's mum's kitchen. My flight was almost delayed by 70 minutes which we didn't get told until we were seated and belted but fortunately it turned out to be 10 minutes. The house was very cold and empty when I got home, although Karys had arrived a few minutes before me and was tapping away at the computer as usual, I missed the family environment when the children are still small enough to just love you because you are their mum. That's not enough when they're teenagers.
I really should get a move on and get to the hospital because I have an oncology appointment tomorrow and I should have had a blood test by now.....oops. Too busy getting my hair done and going out on dates with men!
I booked a ticket just before midnight on Monday and at 8am Wednesday was on the way to the train station. By the afternoon I was inhaling 3 month old baby smell and sitting on a navy version of my own sofa!
On Thursday I went with my oldest friend (of 26 years) to collect her eldest daughter from l'ecole. There was much kissing and chat (not from me) and I got a good look at the infamous Frederic, Elizabeth's beloved teacher (you wouldn't say no girls). We'd spent the day doing pretty much what you do when you've known someone that long and just hanging out - I even managed to take over ironing the 100% cotton bed linen for the gite when one Hayley's French friends came round. It's weird how you just fall into things so quickly, like they happen every day. Even though they moved out there three years ago and it was my first visit (oops) we've been in touch at least weekly, often daily through msn - free chat, you can't knock it, but it's not quite the same as arriving at the airport where there's a huge long hug awaiting you and making your luggage feel weightless all of a sudden.
On Friday it was lunch out to be ogled by hoards of French workmen at Le Lion D'Or with Christianne (and baby Mimi of course) and obviously I had to help drink the bottle of red wine that was present on every table but did resist knocking back the cider, wow self control, is that a side effect of cancer treatment? I had thankfully packed a pair of 3 in heel boots so I was the tallest person in the entire restaurant - yes they were probably only staring at my height but I don't care, there were real MEN looking at me when I went to get my buffet starters!
We had raclette in the evening - yummy! Google it, I'm not your French dictionary! OK, OK, it's a large griddle where you heat salted meats and little mini pans take slices of cheese which melts underneath and can then be scraped off onto the rest of the food waiting patiently on your plate, we had potatoes and salad with it and it was rather yummy, though after pigging out at lunch I was worrying about my lack of gym visits AND the good food.
Us four girlies drove into Fougeres to the market and I tried some clothes on in a boutique but wasn't quite feeling it - everything seemed to cut across the widest part of my thighs so I restrained myself from buying "just because I like it". Elizabeth had been promised MacDonalds as a treat so I had Le Menu and even managed to go back and tell the young (not spotty) lad he'd forgotten my coffee (after a reminder from Hayley, my O level French is still buried very deep back in the 1980s).
The husband of the French visitor earlier in the week came by (Hayley is doing some invitations for them on the computer) and after mentioning who I was, then discussing the health of one of the fish in the tank, Laurent enquired if "she is single", don't ask me WHY Hayley assumed this was about the fish, but she did - much to Laurent's amusement. Apparently they always ask, but I'm pretending it's because his single brother is incredibly hot and rich.........yeah dream on.
All too soon it was time to come home, after croissants and scrambled eggs we set off for Pleurtuit and accidentally ended up in a crepery for galette complete and a cup of cider (when in France! ). More coffee in the airport bar (slightly different setting to those lazy Saturday mornings when we were kids drinking black coffee in Hayley's mum's kitchen. My flight was almost delayed by 70 minutes which we didn't get told until we were seated and belted but fortunately it turned out to be 10 minutes. The house was very cold and empty when I got home, although Karys had arrived a few minutes before me and was tapping away at the computer as usual, I missed the family environment when the children are still small enough to just love you because you are their mum. That's not enough when they're teenagers.
I really should get a move on and get to the hospital because I have an oncology appointment tomorrow and I should have had a blood test by now.....oops. Too busy getting my hair done and going out on dates with men!
Friday 4 April 2008
2008 Apr 4th - Insurance.........or lack of!
I'm pleased to say I've started going back to the gym again. I went nearly two weeks ago on Tuesday 25th March, just a month after my operation, just to do some cardio and a couple of resistance exercises on equipment not to mention a few squats. I went again on the Saturday and then this week on Wednesday when I pulled out all the stops and did quite a few more exercises, especially on my blancmange thighs. I didn't walk well before, but my legs have definitely been protesting the last two days! Still I might drag myself back there tonight because I had a month off and I am on a mission to speed up my general recovery.
My feet are much, much worse and I really do think I might have permanent damage now. The areas of pain are increasing and I can't even stretch my legs without feeling like something is tearing or burning inside my heels and the sides of my feet or my right big toe! That's just not right is it? Thinking about it, things took a turn for the worse when I saw Dr Tom the oncologist just before surgery and he said not to bother with the Pyridoxine (B6) any more as it was only useful whilst ON chemotherapy. So was it just coincidence that when I stopped taking it things went downhill? Hmm. Poking about reading experiences from other sufferers I'm not sure so I've started taking them again, having just got a prescription filled when I stopped. I'll give it a couple of weeks and then I'm seeing Tom again so hopefully I'll have more news.
I can't remember if I mentioned in my last post that I'll be having my "1 year post op" scan at the beginning of June (ish) at which point I might finally be able to get the champagne out and celebrate being in remission or NED (no evidence of disease). Those damn spots on my liver are still a cloud hanging over me dangling the threat of Stage 4 (no stage 5 remember). At what point can I actually start getting on with my life? If the scan shows no more spots it means they were chemo damage and my liver has healed itself, if not, well I can't really be bothered to contemplate the options too much, more surgery, more chemo, radio frequency ablation?
Don't get me wrong, it's not really worrying me. There's no point worrying, it won't change anything and if all is well I'll have stressed my mind and body out for another few months for no reason at all! That's just silly! So as Angela once said: "I refuse to get excited until I know there is actually a problem". Good advice there.
Speaking of Angela, we braved the bright lights of Boston town on Saturday after I had been to the gym, dismantled a high sleeper bed and constructed a single bed to replace it...........(yeah wonder woman, that's me). Three glasses of wine, chips and mayo, a cab ride home and a chocolate eclair (bought from the kebab shop no less!) later.................I discovered red wine and my new internal system do not agree. I was up with diarrhoea a couple of hours after going to bed, the likes of which I hadn't really experienced since Tyson was still in residence.
Just in case it wasn't the wine, I had two glasses last night. It was the wine.
Onto the title of this post......insurance.
I got a letter in the post today with a copy of my anaesthetist's bill for £165 as a private patient telling me that my private health insurance cover (provided by my employer) expired on 31st January 2008. Remember the advice on not getting excited until you know there is a problem? I'm pleased to say I sat down and thought about it calmly before ringing work's HR department who rang our benefits department immediately. I wasn't in a panic because I rang the helpline in February to check I was covered for my ileostomy reversal and they said yes! After they refused to pay for the creation of my J-pouch I wasn't risking anything. Luckily it turns out our policies were transferred to BUPA so I am in fact still covered. I guess it's all part of the buy out of the company and major shareholder that took place around the same time.
Oh and more news - I'm going back to work on 23rd April. EEK!
I'm going to try three days that week and then do a couple of days a week after that to start with and see how I go from there. I am questioning the sense behind an early return, not because of my energy levels, but because the weather is improving and I could actually spend some time in the garden this year without being in pain or attached to chemicals or just feeling too damn ill. I need to get amongst people though. I have been holed up in this house for 13 months now and I'm going a bit stir crazy. Getting out to the gym is good, there are at least real people there even if I only know two or three to talk to, it makes me feel a little more like I'm part of society and not some imperfect outcast.
I'm going to treat myself now and watch Loose Women with a mug of something hot before I go and do some shopping (nice shopping, not groceries). I want some pretty things for my bedroom now it's decorated (just one wall of skirting and a small hole to fill and I'm done. I want a new pole, curtains and mirror and maybe something decorative on the walls. I might even post some before and after photos at some point...........oh god the before picture is horrid, it's going to make anything I've done look marvelous, sorry anything MIKE did.
My feet are much, much worse and I really do think I might have permanent damage now. The areas of pain are increasing and I can't even stretch my legs without feeling like something is tearing or burning inside my heels and the sides of my feet or my right big toe! That's just not right is it? Thinking about it, things took a turn for the worse when I saw Dr Tom the oncologist just before surgery and he said not to bother with the Pyridoxine (B6) any more as it was only useful whilst ON chemotherapy. So was it just coincidence that when I stopped taking it things went downhill? Hmm. Poking about reading experiences from other sufferers I'm not sure so I've started taking them again, having just got a prescription filled when I stopped. I'll give it a couple of weeks and then I'm seeing Tom again so hopefully I'll have more news.
I can't remember if I mentioned in my last post that I'll be having my "1 year post op" scan at the beginning of June (ish) at which point I might finally be able to get the champagne out and celebrate being in remission or NED (no evidence of disease). Those damn spots on my liver are still a cloud hanging over me dangling the threat of Stage 4 (no stage 5 remember). At what point can I actually start getting on with my life? If the scan shows no more spots it means they were chemo damage and my liver has healed itself, if not, well I can't really be bothered to contemplate the options too much, more surgery, more chemo, radio frequency ablation?
Don't get me wrong, it's not really worrying me. There's no point worrying, it won't change anything and if all is well I'll have stressed my mind and body out for another few months for no reason at all! That's just silly! So as Angela once said: "I refuse to get excited until I know there is actually a problem". Good advice there.
Speaking of Angela, we braved the bright lights of Boston town on Saturday after I had been to the gym, dismantled a high sleeper bed and constructed a single bed to replace it...........(yeah wonder woman, that's me). Three glasses of wine, chips and mayo, a cab ride home and a chocolate eclair (bought from the kebab shop no less!) later.................I discovered red wine and my new internal system do not agree. I was up with diarrhoea a couple of hours after going to bed, the likes of which I hadn't really experienced since Tyson was still in residence.
Just in case it wasn't the wine, I had two glasses last night. It was the wine.
Onto the title of this post......insurance.
I got a letter in the post today with a copy of my anaesthetist's bill for £165 as a private patient telling me that my private health insurance cover (provided by my employer) expired on 31st January 2008. Remember the advice on not getting excited until you know there is a problem? I'm pleased to say I sat down and thought about it calmly before ringing work's HR department who rang our benefits department immediately. I wasn't in a panic because I rang the helpline in February to check I was covered for my ileostomy reversal and they said yes! After they refused to pay for the creation of my J-pouch I wasn't risking anything. Luckily it turns out our policies were transferred to BUPA so I am in fact still covered. I guess it's all part of the buy out of the company and major shareholder that took place around the same time.
Oh and more news - I'm going back to work on 23rd April. EEK!
I'm going to try three days that week and then do a couple of days a week after that to start with and see how I go from there. I am questioning the sense behind an early return, not because of my energy levels, but because the weather is improving and I could actually spend some time in the garden this year without being in pain or attached to chemicals or just feeling too damn ill. I need to get amongst people though. I have been holed up in this house for 13 months now and I'm going a bit stir crazy. Getting out to the gym is good, there are at least real people there even if I only know two or three to talk to, it makes me feel a little more like I'm part of society and not some imperfect outcast.
I'm going to treat myself now and watch Loose Women with a mug of something hot before I go and do some shopping (nice shopping, not groceries). I want some pretty things for my bedroom now it's decorated (just one wall of skirting and a small hole to fill and I'm done. I want a new pole, curtains and mirror and maybe something decorative on the walls. I might even post some before and after photos at some point...........oh god the before picture is horrid, it's going to make anything I've done look marvelous, sorry anything MIKE did.
Tuesday 25 March 2008
2008 Mar 25th - Post-op Check up
It's been a hive of activity in my bedroom over Easter........What? NO! Not THAT sort of activity!
The incredibly famous Mike (Pob) the stunt driver off Thomas the Tank Engine came to stay for a few days. He said he was absolutely desperate to practice his DIY skills but didn't want to ruin anything in his own house so I offered the use of mine. (Generous to a fault, yes I know). He came with his car loaded up with a work mate (not a hunky, "Oh Lord! Please let there be a heatwave so he takes his top off" kind, the workbench sort, hmpf). He also brought a scary looking circular saw that I might pretend caused the vertical scar on my belly and other miscellaneous tools. I should point out I have a damn fine selection of tools myself, including two sanders, drill, jigsaw, allen key set, spanner sets, socket sets, bradawl, counter sinker, hacksaws etc, but you know how artists like to use their own stuff.
Wednesday we just ate chips (no curry sauce, the Codfather got the order totally wrong, much to my dismay). Thursday involved Mike crawling around on my bedroom floor ripping up floorboards and putting right some loose wiring and finding a bottomless pit. He lost his leg down the pit at one point and Skittles, the daft apeth, under the floorboards. Somewhere along the way we consumed a bottle of wine........and one evening some serious vodka and "This is England" which was a terrifying trip down memory lane for me and a source of amusement for my daughter at the awful hairstyles and glasses of the 80s.
He then spent an entire day chiselling out rock solid concrete so I could have the lovely pretty sockets in more convenient places. Oh how he laughed when he got grit in his eyes and blood on his knuckles where he missed with the lump hammer............oh no that was me laughing. Until he made me have a go and my wrist swelled up and was very, very hurty indeed. I made him more tea and plied him with biscuits to keep him here. I now have beautiful brushed satin finish sockets and light switch. Lovely.
It's all a bit of a blur for the rest of it (probably the vodka) but I now have an incredibly neatly laid laminate floor - having laid one myself single handed it was a damn sight easier just being the "whoa!" woman and holding the boards to be sawn. I also have a lovely (if horribly cheap) beech laminate bedroom door complete with brushed satin modern door handle. Gone is the nicotine yellow, badly glossed door with 1950s original door furniture and hinges padded out with strips of leather - which never actually shut properly the whole time I've been here. To any DIYers out there who've hung doors before: my doorframe is so wonky it was 2.5cm out on one side! Maximum amount to be trimmed on all sides of door = 0.5cm. All I'm saying is, thank god for the Stunt Driver!
I did manage to keep feeding the poor chap and supplying tea, even amazing myself by having a spare bag of sugar when I ran out. I also finished painting the walls (in between holding floor boards and running to the toilet). All that is left is to finish the skirting board (yes, YES, I KNOW you're supposed to do the woodwork first, I've been ill, stop having a go) and fit some trim and then I can return the furniture to the walls instead of the pile in the middle of the room!
Bloody marvellous.
We had an "eat all you can" carvery on Bank Holiday Monday by way of celebration at the Merry Monk listening to the most dire selection of music I've ever heard. It was kind of cool in a kitsch way.
Anyway. Tuesday I went to see Mr A, the surgeon. Not much to report really. Surgically I'm fine and there is no reason for the amount of pain I have, but he believes it will eventually go away as the radiation damage heals. As this part of my body has spent 9 months doing nothing and it's only been a month since surgery it's still early days. I'm to try brufen twice a day. The scar is healed nicely, if still a little hard and lumpy around it. He's very impressed with the 10 incher! I mentioned the hard painful lump a week or two ago and he checked for hernias but there were none. Phew. I'm having my next scan in June sometime which will be a year since surgery and we're hoping the spots on my liver will have receded, if not disappeared, proving them to be chemo damage and not new tumours. I still, therefore, can't actually think of myself in remission at this point. Believing them to be chemo damage and proving it are two different things.
Since I, sort of, got the all clear I went to the gym for the first time. I managed 7 minutes on a bike, 7 minutes on the rower and another 3.5 on a cross trainer, did some squats and a couple of machines for triceps and shoulders and skipped the abs exercises. Trouble was, now my feet have worsened with the nerve damage and it hurts like hell to stretch out my legs - I can't do it! I wonder what Dr Tom will have to say about that next month?
The incredibly famous Mike (Pob) the stunt driver off Thomas the Tank Engine came to stay for a few days. He said he was absolutely desperate to practice his DIY skills but didn't want to ruin anything in his own house so I offered the use of mine. (Generous to a fault, yes I know). He came with his car loaded up with a work mate (not a hunky, "Oh Lord! Please let there be a heatwave so he takes his top off" kind, the workbench sort, hmpf). He also brought a scary looking circular saw that I might pretend caused the vertical scar on my belly and other miscellaneous tools. I should point out I have a damn fine selection of tools myself, including two sanders, drill, jigsaw, allen key set, spanner sets, socket sets, bradawl, counter sinker, hacksaws etc, but you know how artists like to use their own stuff.
Wednesday we just ate chips (no curry sauce, the Codfather got the order totally wrong, much to my dismay). Thursday involved Mike crawling around on my bedroom floor ripping up floorboards and putting right some loose wiring and finding a bottomless pit. He lost his leg down the pit at one point and Skittles, the daft apeth, under the floorboards. Somewhere along the way we consumed a bottle of wine........and one evening some serious vodka and "This is England" which was a terrifying trip down memory lane for me and a source of amusement for my daughter at the awful hairstyles and glasses of the 80s.
He then spent an entire day chiselling out rock solid concrete so I could have the lovely pretty sockets in more convenient places. Oh how he laughed when he got grit in his eyes and blood on his knuckles where he missed with the lump hammer............oh no that was me laughing. Until he made me have a go and my wrist swelled up and was very, very hurty indeed. I made him more tea and plied him with biscuits to keep him here. I now have beautiful brushed satin finish sockets and light switch. Lovely.
It's all a bit of a blur for the rest of it (probably the vodka) but I now have an incredibly neatly laid laminate floor - having laid one myself single handed it was a damn sight easier just being the "whoa!" woman and holding the boards to be sawn. I also have a lovely (if horribly cheap) beech laminate bedroom door complete with brushed satin modern door handle. Gone is the nicotine yellow, badly glossed door with 1950s original door furniture and hinges padded out with strips of leather - which never actually shut properly the whole time I've been here. To any DIYers out there who've hung doors before: my doorframe is so wonky it was 2.5cm out on one side! Maximum amount to be trimmed on all sides of door = 0.5cm. All I'm saying is, thank god for the Stunt Driver!
I did manage to keep feeding the poor chap and supplying tea, even amazing myself by having a spare bag of sugar when I ran out. I also finished painting the walls (in between holding floor boards and running to the toilet). All that is left is to finish the skirting board (yes, YES, I KNOW you're supposed to do the woodwork first, I've been ill, stop having a go) and fit some trim and then I can return the furniture to the walls instead of the pile in the middle of the room!
Bloody marvellous.
We had an "eat all you can" carvery on Bank Holiday Monday by way of celebration at the Merry Monk listening to the most dire selection of music I've ever heard. It was kind of cool in a kitsch way.
Anyway. Tuesday I went to see Mr A, the surgeon. Not much to report really. Surgically I'm fine and there is no reason for the amount of pain I have, but he believes it will eventually go away as the radiation damage heals. As this part of my body has spent 9 months doing nothing and it's only been a month since surgery it's still early days. I'm to try brufen twice a day. The scar is healed nicely, if still a little hard and lumpy around it. He's very impressed with the 10 incher! I mentioned the hard painful lump a week or two ago and he checked for hernias but there were none. Phew. I'm having my next scan in June sometime which will be a year since surgery and we're hoping the spots on my liver will have receded, if not disappeared, proving them to be chemo damage and not new tumours. I still, therefore, can't actually think of myself in remission at this point. Believing them to be chemo damage and proving it are two different things.
Since I, sort of, got the all clear I went to the gym for the first time. I managed 7 minutes on a bike, 7 minutes on the rower and another 3.5 on a cross trainer, did some squats and a couple of machines for triceps and shoulders and skipped the abs exercises. Trouble was, now my feet have worsened with the nerve damage and it hurts like hell to stretch out my legs - I can't do it! I wonder what Dr Tom will have to say about that next month?
Sunday 16 March 2008
2008 - 16th March - What is the Point?
Over the weekend I had a really painful area between my midline scar and the stoma scar, there is a hard long lump which is under the bruising which is still showing and I was worried I'd got a hernia. Today, thankfully the pain seems to be almost gone. It was so bad it hurt to move in bed. On top of the regular pains inside around the join and my bottom, there's been very little sleep in my bedroom. Most nights I've been awake til 3 or 4am, or got up in the middle of the night after being unable to sleep with the pains. Last night I had the pleasure of hard rain hammering on my bedroom window to really make sure I'm knackered today.
Thursday 13 March 2008
2008 Mar 13th - Progress Update
Tomorrow will be three weeks since Mr A chopped of my PTW and threw him away!
I've been home for ten days now and for 9 of those have progressed from liquid waste to solid waste, albeit I never pass anything larger than my thumb. I just have to pass about twenty of them to empty! That's on a good clear out visit to the loo - I'm getting better at having a couple of those a day and then the odd mini clear out when I go for a wee if I feel the urge.
I'd say I'm getting down to about 5 times a day now, but the most was really 7 or 8 once my colon remembered what it's bloody job was! My main problem is the pain. Every time some air tries to escape I'm rooted to the spot clinging to the nearest grabbable object or I lie on the bed or sofa. Initially when I go to the loo it hurts too. It's the same passing broke glass pain I had during those months of radiation and waiting for surgery last year. To be fair it's not as bad because. like I said I'm only passing things the size of my thumb. The radiation damage, I'm guessing, isn't going to get any better. I have read that some people are given anal dilators as well as vaginal dilators after low pelvic radiation because of the massive shrinking that occurs. The thought of my surgeon doing further digital examinations makes me cry so it's going take a bloody good case to convince me that dilating my burned, shrunk, chopped up arse is a good idea.
It might be just inflammation and maybe I can get something for it. I'm just putting off calling my colorectal nurse until next week in case it means a physical examination. The pain isn't constant, but it's pretty frequent. It keeps me awake at night until I give in, get up and try and pass more air and stools. I suppose I should stop eating earlier in the evening? There is a constant dull throb which has been present for about the last 13 months where the "action" was for radiation and surgery.
My little wound where PTW was is healing very well. I've got the oddest shape
d abdomen ever! There are lumps and bumps and dents all over the place. I am quite pleased to report that I have in fact lost some weight again! Becky insisted I looked a lot thinner after about a week on drip only diet - to be expected I guess but my scales said otherwise, until today! Also after I checked what I did weigh before I went in (which in my head I'd reduced but had written down somewhere else as evidence of my poor diet) ............and I've lost 9 pounds! Ooer! I hope it's fat off my thighs and not any of the muscle I managed to build u
p at the gym.
As you can probably make out, there is still some yellow bruising to the centre of my belly and I do still feel some tightness when I turn over in bed. The majority of the scab has gone but I think it'll be another couple of weeks before there is delicate new skin and no scabs. I'm patting some Bio Oil in when I remember in the hope that it doesn't cause me any trouble when I get back into wearing my jeans on a regular basis - I'm still wearing low rise joggers and big t-shirts (for decorating also) to avoid putting any unnecessary pressure on the scar.
If those of you who still have a rectum, or managed to escape radiation have a reversal coming up then I can say I would recommend going for reversal. I had an awful time in hospital, I really did think I'd be heading back to theatre for a permanent colostomy or ileostomy if my colon refused to work, I was scared of food and the future yet again. I'm still holding in the back of my mind the thought that I've got another liver scan coming up in a month or two because they're being cautious over the "chemo damage" streaks and want to make sure that's exactly what it is.
Still, even with the pain, which I'm sure can be reduced by some treatment, if not eradicated completely, I think I'd rather have this and have the chance to wear what I want again. On a more positive note the pain in my butt does take my attention away from the stabbing shooting pains in my feet and the horrible, shudder inducing numbness and soreness that is peripheral neuropathy. I had thought I'd be handing my blue badge back sometime soon, but my feet are so sore and painful I'm keeping it.
I've been home for ten days now and for 9 of those have progressed from liquid waste to solid waste, albeit I never pass anything larger than my thumb. I just have to pass about twenty of them to empty! That's on a good clear out visit to the loo - I'm getting better at having a couple of those a day and then the odd mini clear out when I go for a wee if I feel the urge.
I'd say I'm getting down to about 5 times a day now, but the most was really 7 or 8 once my colon remembered what it's bloody job was! My main problem is the pain. Every time some air tries to escape I'm rooted to the spot clinging to the nearest grabbable object or I lie on the bed or sofa. Initially when I go to the loo it hurts too. It's the same passing broke glass pain I had during those months of radiation and waiting for surgery last year. To be fair it's not as bad because. like I said I'm only passing things the size of my thumb. The radiation damage, I'm guessing, isn't going to get any better. I have read that some people are given anal dilators as well as vaginal dilators after low pelvic radiation because of the massive shrinking that occurs. The thought of my surgeon doing further digital examinations makes me cry so it's going take a bloody good case to convince me that dilating my burned, shrunk, chopped up arse is a good idea.
It might be just inflammation and maybe I can get something for it. I'm just putting off calling my colorectal nurse until next week in case it means a physical examination. The pain isn't constant, but it's pretty frequent. It keeps me awake at night until I give in, get up and try and pass more air and stools. I suppose I should stop eating earlier in the evening? There is a constant dull throb which has been present for about the last 13 months where the "action" was for radiation and surgery.
My little wound where PTW was is healing very well. I've got the oddest shape
d abdomen ever! There are lumps and bumps and dents all over the place. I am quite pleased to report that I have in fact lost some weight again! Becky insisted I looked a lot thinner after about a week on drip only diet - to be expected I guess but my scales said otherwise, until today! Also after I checked what I did weigh before I went in (which in my head I'd reduced but had written down somewhere else as evidence of my poor diet) ............and I've lost 9 pounds! Ooer! I hope it's fat off my thighs and not any of the muscle I managed to build u
p at the gym.As you can probably make out, there is still some yellow bruising to the centre of my belly and I do still feel some tightness when I turn over in bed. The majority of the scab has gone but I think it'll be another couple of weeks before there is delicate new skin and no scabs. I'm patting some Bio Oil in when I remember in the hope that it doesn't cause me any trouble when I get back into wearing my jeans on a regular basis - I'm still wearing low rise joggers and big t-shirts (for decorating also) to avoid putting any unnecessary pressure on the scar.
If those of you who still have a rectum, or managed to escape radiation have a reversal coming up then I can say I would recommend going for reversal. I had an awful time in hospital, I really did think I'd be heading back to theatre for a permanent colostomy or ileostomy if my colon refused to work, I was scared of food and the future yet again. I'm still holding in the back of my mind the thought that I've got another liver scan coming up in a month or two because they're being cautious over the "chemo damage" streaks and want to make sure that's exactly what it is.
Still, even with the pain, which I'm sure can be reduced by some treatment, if not eradicated completely, I think I'd rather have this and have the chance to wear what I want again. On a more positive note the pain in my butt does take my attention away from the stabbing shooting pains in my feet and the horrible, shudder inducing numbness and soreness that is peripheral neuropathy. I had thought I'd be handing my blue badge back sometime soon, but my feet are so sore and painful I'm keeping it.
Tuesday 11 March 2008
2008 Mar 11th - Fabio the Fab Photographer
Last Thursday I got up late, having managed to be up and having breakfast by 10.30 since I got out of hospital, it was 12.30pm. Oops. After a slow breakfast and poncing about on the 'net for an hour I dragged myself into the shower. It was a struggle to put proper clothes on after living in my £3 Matalan nighties and although my tummy was still quite swollen and bruised, with a weeping wound, I got into my jeans. My hair went how I wanted it to, which was a bit of a shock, that never happens when you need it to does it? I reckon I've made some class purchases make up wise because I'm getting bloody good at disguising the shadows under my eyes these days, if I do say so myself! The reason for all this effort two weeks after surgery? The magazine who are publishing my story (as arranged by Beating Bowel Cancer charity for publicity of the disease) were sending a photographer.
Fabio is Italian, from Preston and living in Derbyshire. Not far from one of my aunties as it happens, small world! He was really lovely and after a cup of tea and plenty of chat I was standing in the road outside my house (I live in the middle of nowhere, remember) while he snapped away, then back inside for some more on the sofa (photos!). I kept trying to remember to put one leg in front and twist my hips a bit like the stars do to make myself look thinner but mostly I forgot. I can't deny it was rather nice to have a young man to chat to after being incarcerated for 10 days and I wouldn't have needed persuading to keep him a bit longer but after two hours he went home (boo). I'm not sure when the article is being published but as soon as I do I'll let you know! It'll be in That's Life magazine - a weekly "My daughter was impregnated by an alien" type publication so don't expect any in depth discussion on cancer, it's a low word count.
I've been pretty busy sorting things out in my bedroom since I got home. I think it's the spring clean bug, that and the burning desire to throw out all my giant apple catcher pants which I had to wear to support PTW's bag. Now the bag is gone I can wear normal skimpy things again, woohoo! I've sorted my socks and my knickers and swapped the doors around on my wardrobes so the glass ones are in the middle and levelled them up which I've been meaning to do for months. I've sorted out my folded tops into long sleeves, short sleeves and no sleeves. Then yesterday I took the rather mad step of painting the ceiling..........hmm. Well first I filled the gaps above the coving...........then had a rest...............filled the gaps below the coving............had a rest..........did the cutting in on the ceiling.............yep, you guessed it I had a rest. I painted the ceiling's first coat in two stages too, using a paint pad on a long pole. It looks bloody awful this morning and might need another two coats so quite why I'm sat here typing this I don't know. It's a lovely sunny day and if it weren't for the peripheral neuropathy I'd be out in the garden but I know I won't be able to do much with numb fingers, it might look nice but I bet it's still cold. I think I'll stick to painting this week and see how warm it is next week.
Fabio is Italian, from Preston and living in Derbyshire. Not far from one of my aunties as it happens, small world! He was really lovely and after a cup of tea and plenty of chat I was standing in the road outside my house (I live in the middle of nowhere, remember) while he snapped away, then back inside for some more on the sofa (photos!). I kept trying to remember to put one leg in front and twist my hips a bit like the stars do to make myself look thinner but mostly I forgot. I can't deny it was rather nice to have a young man to chat to after being incarcerated for 10 days and I wouldn't have needed persuading to keep him a bit longer but after two hours he went home (boo). I'm not sure when the article is being published but as soon as I do I'll let you know! It'll be in That's Life magazine - a weekly "My daughter was impregnated by an alien" type publication so don't expect any in depth discussion on cancer, it's a low word count.
I've been pretty busy sorting things out in my bedroom since I got home. I think it's the spring clean bug, that and the burning desire to throw out all my giant apple catcher pants which I had to wear to support PTW's bag. Now the bag is gone I can wear normal skimpy things again, woohoo! I've sorted my socks and my knickers and swapped the doors around on my wardrobes so the glass ones are in the middle and levelled them up which I've been meaning to do for months. I've sorted out my folded tops into long sleeves, short sleeves and no sleeves. Then yesterday I took the rather mad step of painting the ceiling..........hmm. Well first I filled the gaps above the coving...........then had a rest...............filled the gaps below the coving............had a rest..........did the cutting in on the ceiling.............yep, you guessed it I had a rest. I painted the ceiling's first coat in two stages too, using a paint pad on a long pole. It looks bloody awful this morning and might need another two coats so quite why I'm sat here typing this I don't know. It's a lovely sunny day and if it weren't for the peripheral neuropathy I'd be out in the garden but I know I won't be able to do much with numb fingers, it might look nice but I bet it's still cold. I think I'll stick to painting this week and see how warm it is next week.
Thursday 6 March 2008
2008 Mar 6th - Ileostomy Reversal Surgery
Well the surgery took place on Friday 22nd February as planned.As you can see - I was very excited before hand, especially in my lovely surgical stockings.
I wrote a message on a piece of paper to the surgical team, thanking them for saving my life last year and now for giving my my tummy back. I hid it in the peep flap on my last bag with another message for PTW. It said RIP POOTUMWILLY 6/2007 - 22/2/2008. When I was coming round more in recovery I was presented with a bravery certificate from the theatre 5 team on 2nd floor - back on the ward they laminated it for me :o) What a kid I am! Mr A said they found my note and it was appreciated, I hope it gave them a little smile when they took off my paper knickers!
The op was straight forward, a nice quick operation for Mr A and after three hours in recovery sorting out my pain relief I was sent back down to the ward with my incredibly flat stomach and NO bag. Umpalumpa came with Karys and I agreed I felt up to contacting a few friends myself that she'd originally had on a list to confirm all was well. I think I must have been high on the drugs! I was so excited on the way to theatre at the thought of getting this final step over with and then, at last the beginning of the rest of my life. Scary thought.
I was on intravenous fluids only, as before, until I'd passed wind (that old favourite). So nothing on Saturday to eat, but when Mr A popped in to check on me he said I might be able to eat something the next day.
Sunday 24th - The nurses said I could have a bowl of soup at lunch followed by jelly. I had more soup at dinner followed by vanilla ice cream. My abdomen was getting very bloated and swollen, which was disappointing after the lovely flat one I had in recovery
but I was pretty sure it was just trapped wind. It was painful and I wished I'd packed some peppermint tea (or Brandy).
Becky came to see me every day and was feeding the animals for me (cat and rabbit) but apart from that I was just in bed watching Hollyoaks omnibus and popping to the loo every four hours or so, not because I felt I needed to, but because I hadn't been. Anything that came out was very watery - hard to tell WHERE exactly it was coming from since it was all the same consistency but better out than in.
Monday 25th - Still very bloated and quite uncomfortable as well as the post op pain which really wasn't that bad in comparison but under the dressing was a fair amount of bruising. Plus I've still got a hole in my belly where something once poked through muscle and skin. I had rice crispies for breakfast - the lightest thing on the menu and soup again for lunch. It was a struggle to get the soup down and I didn't eat all of the fruit salad afterwards. I was very bloated and tried rolling around on all fours, lying on each side trying to release what I assumed still was trapped wind. Both children came to visit and some family which was nice, though I did feel like I was in early stages of labour and my tummy was rock hard.
Tuesday 26th - Everything became a bit of a blur from here really. My surgeon was obviously concerned as my temperature kept spiking to 38 and 39, my abdomen was badly distended and I was in pain. Although I had passed stools in the form of water, it didn't seem to be making any difference, certainly not enough, it didn't feel like things were moving at all, I'd not been allowed food since Monday lunchtime. When I tried to take my co-cocodamol this morning it came right back up with a lot of dark green stuff. It seemed quite clear that what I'd eaten so far wasn't budging and there was no room for anything else if it was working it's way out UP instead of DOWN. My worst fear.
I got to drink the contrast stuff for a CT scan mm lovely! One glass every half hour - having been on sips of water and vomited up my pain relief I could see how this would end. Crying in pain they used a board to get me onto the scanner bed and somehow I managed to keep it all in until they'd wheeled my bed just over the door threshold. I said "I need a sick bowl" and tried to catch what was already in my mouth in my hand, but my hand wasn't big enough. I sprayed the entire doorway and wall and my bed with what looked like watery chopped spinach. Vomiting after abdominal surgery with a painfully distended abdomen is NOT a nice feeling, it's just more pain and misery - more tears from me.
Back on the ward the Sister had to put a naso-gastric tube down my nose, more tears. I'd already read on one of the MacMillan stories how horrid this is but truly, when you're in pain, vomiting and wondering if you'll ever be able to eat food again it's fucking awful. The tube is passed up a nostril, down into the back of the throat, at which point you take a few sips of water to help swallow the tube. Sister shone a torch in my mouth to check it was in place. Straight away more dark vivid green goop started coming out of the tube and into the drain bag.
My drip failed. As before, my hand is a fluid filled mess and bruised badly where the IV fluids are going in, but not into the vein any more. A nurse from the main hospital came to put another in - on second attempt at around 3am. I was fading in and out and having vivid dreams/hallucinations and feeling pretty crappy. Becky came to visit but all I did was lie, slightly propped up and drift in and out. She wanted to hug me but everything hurt and I remember saying "Don't touch me" when she arrived, if I'd heard that from someone I loved I think I'd be crushed. When I woke she'd gone.
Wed 27th - My temperature rose to 39 again when the morning shift came to check on me at 6am and I was lying in a puddle and covered in soaked bedding. My duvet was confiscated and the fan put on, doors opened etc. By now I was on antibiotics and IV paracetamol but it didn't look like my temperature was responding. They asked if I felt hot - "No I was freezing, I turned the radiator up". The radiator was switched off. The shivering feeling cold thing when you're burning up is really pretty freaky isn't it? I'd lie there sort of day dreaming or imagining I was doing something, like opening a packet and thought my hands were doing the motions, when I opened my eyes, my arms were by my sides as they always were. I dreamed I was travelling the same route over and over again, always in just my knickers and a top, desperate to find some clothes and passing the same workmen over and over who seemed more and more bemused by my attire, or lack of. I dreamed of a village fete and trying to meet my best friend who would help me, but I lost her. It wasn't a nightmare, but it was bad. Incredibly vivid, I can still see snapshots - this is where I was when they woke me to wash me down and dry me off at my highest temperature. I was so glad to be woken.
Thursday 28th - My surgeon was still reviewing my scan pics from Tuesday, desperate to find any leak that he may have missed to explain why this was happening and he decided on an enema and colonoscopy as the next steps to diagnosing what was obviously some sort of complication but as yet undiscovered. The enema shifted nothing, much to our mutual dismay and the scope showed again a healed join, a good pouch, no surgical problems, no explanation.
I was still emptying something out of my system a few times a day, every time I went for a wee, I'd pass more liquid from my bowels. Never feeling much lighter, but gradually a little less swollen. I was still nil by mouth apart from sips of water, then gradually I drank a little more. Every time I'd been to the toilet, or on some days sat on the commode they put next to my bed as I was so weak, I would retch and often vomit more green stuff. Utter, utter misery. However by Thursday the green stuff had almost stopped and it was just water that was coming back up the NG tube so at last it was removed.
I watched the lovely Gene Hunt dish out his own brand of wonderfully non PC policing in Ashes to Ashes at 9pm. The first TV I'd seen since Monday, not even able to tolerate listening to music on my ipod. I'd also had a headache for a few days. I must have felt quite faint watching Gene Hunt because for two readings my BP went down to 90/45 after that. That evening things seemed to feel better, my tummy was finally starting to go down and I managed to pass a fair amount of wind. I remember smiling before I fell asleep because I thought I might be on the mend and get through this.
Friday 29th - Things having kicked into gear last night I felt a lot more like me this morning. My colon suddenly remembered what peristalsis was and more watery stools and air left me my tummy was a little flatter, but mostly just softer. Mr A said once my drip had run through it could be taken out, which was lucky - it didn't last for the final 100ml because my hand started swelling like the other one had and pushed the cannula out. Time to try food again. This time was even scarier than the first, now I knew what eating could do to me, I just couldn't face going through all that again. Another bowl of soup (for a change).
I managed to shower myself at the weekend, having had bed baths most of the week. I progressed with my meals from half a slice of toast, one slice of bread with chicken, a bowl of soup. The next day I managed a whole slice of toast, half a salmon salad (small grilled fillet) and all of the fruit salad. On Monday after a slice of toast I managed green beans, carrots and some cottage pie, I left the three croquette potatoes and some of the pie.
I had been at the point where I wondered what the hell they would do if I couldn't eat. Well I knew the answer really, a permanent colostomy seemed unlikely if my colon didn't work, so back to an ileostomy and all this would have been for nothing. I would have been disappointed for my surgeon too if that had happened. He is a wonderful man and I trusted him throughout my treatment, though seeing him puzzled and worried I did feel guilty. It all worked out OK in the end though.
Since I got home on Monday 3rd March, I'm pleased to report that my "poo" is now resembling "poo". I can't say I have urgency issues, I don't. In hospital I went by the clock
, because it had been a few hours since I last went. Now I'm upright more I think that helps. I go when I need to wee and empty then, just like I did with the bag so to me it's no different frequency wise, I'm still feeling bloated so glad to get rid of anything that's there. I only once had an "accident" in hospital which was at the height of my high temperature so I don't think that counts. Other than that I am amazed at the job my surgeon has done. I still expected urgency and much more frequency than this so I'm feeling very happy about that. Obviously still very wary in case things change but for now, I'm just working on getting my stamina back again so I can get back in the gym!I can't thank my little Umpalumpa (Becky) enough for all she does for me, I just hope I can recover quickly so she can forget about looking after me and start enjoying herself again. I know I put her through an awful lot of worry, and my Aunty Susan and Angela and Mike, my family in Derbyshire, my internet friends (i.e. bum bandits).
Hopefully now I'm back on the HRT and able to swallow my antidepressants - no tabs for a few days so I think I got some withdrawl symptoms there and I felt myself being very snappy and uncharitable for no reason.
Tuesday 19 February 2008
2008 Feb 19th - Seeing the Surgeon (pre-op) and Scan Results?
I had a thorough abdominal ultrasound scan on Monday morning. Having slept for about four hours (aided by Baileys) and many tears, I woke up feeling rotten and not looking much better. Umpa drove, thankfully because I don't think I'd have hit a single right gear, but possibly some pedestrians or other cars! No old ladies waiting today and though we managed to arrive early I was seen pretty quickly. The scan took a lot longer than I thought. I laid on my back and both sides so she could check every organ, spending most time on my lower right ribcage (still sore from Friday nights gym class) where my liver was.
I sort of expected a phone call because Dr Tom had made a point of getting the scan booked so they could discuss me at the MDT meeting that afternoon. Still I had my appointment with Mr A, the surgeon today so it wasn't much longer to wait.
I slept a little better, probably because I had TWO large Baileys this time. Also I'd spoken to Aunty Susan and even though she made me cry a teeny bit, by telling me I don't have to be brave all the time, at least not for her, it helped. A cuddle would have helped more, but I had the teddy she bought me when she came to visit (Umpa has one too, we always get the same, it saves arguments). He's as fluffy as Skittles but doesn't wriggle or keep me awake with his loud, contented purring.
I like going to the Bostonian, there's no messing about trying to find a disabled parking space - there are even less now because of some "work" being done! True to stereotype the "work" men were stood around talking when we arrived. It was proper brass monkey's weather so I'd have expected some movement just to keep warm.....other than their jaws.
The couple who went in before us had a cancer diagnosis, I'm sure. Evidence being - conversation between secretary and nurse fetching cup of water "How are they?" "Not good, very sad". I could hear crying when I went through, at which point the couple hadn't left so I think they were in a side room talking it through. There was the telltale diagram, drawn by Mr A to demonstrate the site of tumour and surgery, a nurse whipped it away, saying "oh that was a previous patient", I just looked at it and said "deja vu".
Poor Mr A, not knowing about the scan results (namely because I don't think the sonographer's report was available for the MDT meting so I wasn't discussed as intended) was surprised that I was looking a little worried I think. He read the CT report, then the incredibly short ultrasound scan which just confirmed there was "something" (insert several large words here that even I haven't been able to commit to memory and google) on my liver. That was it. It just said "yep, you were right with the CT". Mr A said it was stupid! He asked the nurse to make sure I was on next Monday's MDT list to be discussed - but he's not unduly worried. I panicked at this point and said...........but surgery is planned for Friday..........? I think that's when the penny dropped that as Oncology were rushing to get the scans done before surgery I was expecting it to be cancelled. No chance, he said, it's two separate things, he'll do the operation and the rest can be dealt with later. Jeez, talk about RELIEF!
I'm not even worrying about the scans now, my main concern was that my path has been, not set in stone, but pretty tightly set out and any deviation just depresses me. I think it's the lack of control that cancer is so good at creating. That the cancer might be back, or even if, as hoped, it's just damage caused by the chemotherapy (Dr Tom's thought) was like cancer saying "Haha, I'm still in control, you thought it was all over".
He attempted a rigid sigmoidoscope again but (and I checked to see how loud I was) I "OW"d a lot and he asked if I'd rather he used an endoscope when I was on the operating table and unconscious instead (um YES PLEASE MR A!) to make a final check of the join. I know some people have a barium enema and x-ray to check the join but he likes to see with his eyes, I think. It's been 9 months, so I guess if it hasn't healed now it never will. Not ALL the staples came out anyway, I only remember seeing about half a dozen or so (gulp).
Mr A went over the risks and possible complications: bleeding; leaking (peritonitis); having to open up the full 10 inch scar again; blockages etc. Then I signed the consent form, hopefully the last of many in the last year or so. I've signed a consent form for the 7 weeks continuous chemo, another for the 5 weeks radiation, one for surgery, another for the last lot of chemo and now the final operation.
He'll be cutting around the stoma where little PTW sticks out and then (I gasped at this point) they chop PTW off and throw him away!!! He'll then join up the two ends, shove it all inside and stitch me up.
I said: "Oh, the poor thing"
Mr A (laughing): "Have you become quite attached to it?"
Me (patting PTW): "He's worked really hard for 9 months, I swear at him when he misbehaves, but it seems such a shame"
Mr A: "Would you like him in a little pot to keep?"
Me: "Yes please! I've still got my wisdom teeth in a pot and my best friend was allowed to take her tonsils home (admittedly we were about 14 at the time)."
I'm pretty sure he thought I was joking. I wasn't.
When Umpa told my nephew, he said "But doesn't aunty Lisa NEED that bit?" He was also most impressed by the fact, not that I'll not need to glue a bag to my belly every day or so and empty it a zillion times a day, but that I shall, once more be able to FART! I wasn't aware it was a regular habit of mine, but then realised, he's a boy, it's their favourite pastime!
Mr A tried to make us both cry again too. He said all his patients are special, but I am most special. I am his youngest bowel cancer patient! Therefore he is sure everything will be fine.
I told him he can do what he likes when he opens me up because I've got a small windfall coming from a share payout soon. He said he likes to hear his patients are rich. PMSL!
So for now, I'm just excited about the surgery and this last step. If the blips on my liver turn out to be anything else, that's another chapter. As Angela Wan Kenobi once said "I refuse to get excited about it until I know it's really a problem."
I'm working on various options for keeping you all updated whilst I'm in on an IV crash diet of essential fluids for the best part of a week. It will most likely include a laptop, a memory stick and Umpalumpa (told you she was like a Swiss army knife!).
I sort of expected a phone call because Dr Tom had made a point of getting the scan booked so they could discuss me at the MDT meeting that afternoon. Still I had my appointment with Mr A, the surgeon today so it wasn't much longer to wait.
I slept a little better, probably because I had TWO large Baileys this time. Also I'd spoken to Aunty Susan and even though she made me cry a teeny bit, by telling me I don't have to be brave all the time, at least not for her, it helped. A cuddle would have helped more, but I had the teddy she bought me when she came to visit (Umpa has one too, we always get the same, it saves arguments). He's as fluffy as Skittles but doesn't wriggle or keep me awake with his loud, contented purring.
I like going to the Bostonian, there's no messing about trying to find a disabled parking space - there are even less now because of some "work" being done! True to stereotype the "work" men were stood around talking when we arrived. It was proper brass monkey's weather so I'd have expected some movement just to keep warm.....other than their jaws.
The couple who went in before us had a cancer diagnosis, I'm sure. Evidence being - conversation between secretary and nurse fetching cup of water "How are they?" "Not good, very sad". I could hear crying when I went through, at which point the couple hadn't left so I think they were in a side room talking it through. There was the telltale diagram, drawn by Mr A to demonstrate the site of tumour and surgery, a nurse whipped it away, saying "oh that was a previous patient", I just looked at it and said "deja vu".
Poor Mr A, not knowing about the scan results (namely because I don't think the sonographer's report was available for the MDT meting so I wasn't discussed as intended) was surprised that I was looking a little worried I think. He read the CT report, then the incredibly short ultrasound scan which just confirmed there was "something" (insert several large words here that even I haven't been able to commit to memory and google) on my liver. That was it. It just said "yep, you were right with the CT". Mr A said it was stupid! He asked the nurse to make sure I was on next Monday's MDT list to be discussed - but he's not unduly worried. I panicked at this point and said...........but surgery is planned for Friday..........? I think that's when the penny dropped that as Oncology were rushing to get the scans done before surgery I was expecting it to be cancelled. No chance, he said, it's two separate things, he'll do the operation and the rest can be dealt with later. Jeez, talk about RELIEF!
I'm not even worrying about the scans now, my main concern was that my path has been, not set in stone, but pretty tightly set out and any deviation just depresses me. I think it's the lack of control that cancer is so good at creating. That the cancer might be back, or even if, as hoped, it's just damage caused by the chemotherapy (Dr Tom's thought) was like cancer saying "Haha, I'm still in control, you thought it was all over".
He attempted a rigid sigmoidoscope again but (and I checked to see how loud I was) I "OW"d a lot and he asked if I'd rather he used an endoscope when I was on the operating table and unconscious instead (um YES PLEASE MR A!) to make a final check of the join. I know some people have a barium enema and x-ray to check the join but he likes to see with his eyes, I think. It's been 9 months, so I guess if it hasn't healed now it never will. Not ALL the staples came out anyway, I only remember seeing about half a dozen or so (gulp).
Mr A went over the risks and possible complications: bleeding; leaking (peritonitis); having to open up the full 10 inch scar again; blockages etc. Then I signed the consent form, hopefully the last of many in the last year or so. I've signed a consent form for the 7 weeks continuous chemo, another for the 5 weeks radiation, one for surgery, another for the last lot of chemo and now the final operation.
He'll be cutting around the stoma where little PTW sticks out and then (I gasped at this point) they chop PTW off and throw him away!!! He'll then join up the two ends, shove it all inside and stitch me up.
I said: "Oh, the poor thing"
Mr A (laughing): "Have you become quite attached to it?"
Me (patting PTW): "He's worked really hard for 9 months, I swear at him when he misbehaves, but it seems such a shame"
Mr A: "Would you like him in a little pot to keep?"
Me: "Yes please! I've still got my wisdom teeth in a pot and my best friend was allowed to take her tonsils home (admittedly we were about 14 at the time)."
I'm pretty sure he thought I was joking. I wasn't.
When Umpa told my nephew, he said "But doesn't aunty Lisa NEED that bit?" He was also most impressed by the fact, not that I'll not need to glue a bag to my belly every day or so and empty it a zillion times a day, but that I shall, once more be able to FART! I wasn't aware it was a regular habit of mine, but then realised, he's a boy, it's their favourite pastime!
Mr A tried to make us both cry again too. He said all his patients are special, but I am most special. I am his youngest bowel cancer patient! Therefore he is sure everything will be fine.
I told him he can do what he likes when he opens me up because I've got a small windfall coming from a share payout soon. He said he likes to hear his patients are rich. PMSL!
So for now, I'm just excited about the surgery and this last step. If the blips on my liver turn out to be anything else, that's another chapter. As Angela Wan Kenobi once said "I refuse to get excited about it until I know it's really a problem."
I'm working on various options for keeping you all updated whilst I'm in on an IV crash diet of essential fluids for the best part of a week. It will most likely include a laptop, a memory stick and Umpalumpa (told you she was like a Swiss army knife!).
Friday 15 February 2008
2008 Feb 14th - Valentine's Day - Scan Results
Oo well there I was having had five hours kip and Parcel Force were knocking at the door. Karys went to get it because she looks better than me in the morning. She said it was a box and probably had flowers in it.
Hmm. Odd. I thought maybe it was because I'm getting my scan results today someone has sent them.......nope. Turns out it was a dozen pink roses, some chocolates AND a bottle of champagne. Confused? Certainly. There's not even any point in me being curious because hardly anyone has my new address. Not to mention I don't know anyone who'd spend that much money on me especially to get nothing in return since I don't know who sent them. Still they all went down very well and were much appreciated though a little premature. Not knowing my results I wasn't ready to celebrate yet.
Umpalumpa drove us to the hospital and by some fluke we got a disabled spot near the entrance so I didn't have to hobble so far (note how I can run the five feet to the front door when I think my ipod is about to arrive but that's about it). Clinic was running a bit late so I didn't get seen until an hour after my appointment time. It was the big man himself, Dr Tom. He thought I was just there for a check up until I said I was after my results. We had a look at the images and he pointed out some streaky bits on my liver. The report (not their usual radiographer) mentioned "suspicious" areas on my liver.
Oh.
Still Dr Tom says if he were betting on it he thinks they're just changes due to chemo and not actually cancer deposits and he's seen enough to know but I'll need an ultrasound scan to be sure.
If the ultrasound comes back clear then I still get rid of the little monster that is PTW. He's developed a hole which means output leaks right at the base of the stoma and damaged the adhesive seal so I pretty much have a leak every time I go to the gym, go shopping, drive etc.
Dr Tom rang me this morning (Friday) to say he was trying to get my scan booked for Monday morning so they can review the results on Monday afternoon at the MDT meeting. I'll be seeing my surgeon on Tuesday anyway so the latest I'll hear about anything is Tuesday.
I still downed half the champagne - Pob came round since we're both single and had no dates so he drank the other half. We started with kebabs and beer......and finished with Baileys coffee!
We toasted the fact that I might NOT have metastases on my liver.
Keep em crossed for me eh?
Hmm. Odd. I thought maybe it was because I'm getting my scan results today someone has sent them.......nope. Turns out it was a dozen pink roses, some chocolates AND a bottle of champagne. Confused? Certainly. There's not even any point in me being curious because hardly anyone has my new address. Not to mention I don't know anyone who'd spend that much money on me especially to get nothing in return since I don't know who sent them. Still they all went down very well and were much appreciated though a little premature. Not knowing my results I wasn't ready to celebrate yet.
Umpalumpa drove us to the hospital and by some fluke we got a disabled spot near the entrance so I didn't have to hobble so far (note how I can run the five feet to the front door when I think my ipod is about to arrive but that's about it). Clinic was running a bit late so I didn't get seen until an hour after my appointment time. It was the big man himself, Dr Tom. He thought I was just there for a check up until I said I was after my results. We had a look at the images and he pointed out some streaky bits on my liver. The report (not their usual radiographer) mentioned "suspicious" areas on my liver.
Oh.
Still Dr Tom says if he were betting on it he thinks they're just changes due to chemo and not actually cancer deposits and he's seen enough to know but I'll need an ultrasound scan to be sure.
If the ultrasound comes back clear then I still get rid of the little monster that is PTW. He's developed a hole which means output leaks right at the base of the stoma and damaged the adhesive seal so I pretty much have a leak every time I go to the gym, go shopping, drive etc.
Dr Tom rang me this morning (Friday) to say he was trying to get my scan booked for Monday morning so they can review the results on Monday afternoon at the MDT meeting. I'll be seeing my surgeon on Tuesday anyway so the latest I'll hear about anything is Tuesday.
I still downed half the champagne - Pob came round since we're both single and had no dates so he drank the other half. We started with kebabs and beer......and finished with Baileys coffee!
We toasted the fact that I might NOT have metastases on my liver.
Keep em crossed for me eh?
2008 Feb 11th - Pre op checks
I had my pre-op check appointment at 11.30 on Monday this week. Luckily I managed to drag myself out of bed early enough to get there on time, always a bonus. I did forget to take in a urine sample though, but that's because I forgot to get a sample bottle.
The nurse called me through and we went through the questions I'd answered on the admission form, basically to check I'm not asthmatic, have heart problems or anything that might cause issues with anaesthetic or other drugs as I did back in June. I'd listed all the drugs I'm currently taking (four at last count) and the doses. After the paperwork was done and I'd answered the comedy questions "Are you seeing your GP about any serious illnesses at the moment" - "Na, just anything cancer related - that's all I've ever seen him about".
I was weighed and my height measured. I've got my centimetre back!! I'm back to 5'10 again and 178cm. I'm guessing that's because I don't have back pain and am not as exhausted as I've been when I've been measured before.
While we were chatting about my side effects that I'm still stuck with, the nurse seemed a little surprised by my matter of fact attitude, she asked how I cope? She thought I was very brave. But I didn't set out to get cancer, I didn't choose to deal with it so how can I be brave? What option do I have but to just get on with it? I'm guessing most people she sees with cancer are older and dare I say more negative or better at moaning about their lot. Most likely because they have other health issues and were hoping to have some free healthy time to enjoy their retirement. She actually had to grab a tissue and grab her eyes, so I apologised for upsetting her (!) which didn't help.... I suppose I'm so used to all this now and I know from bitter experience that the more you repeat the details about something distressing, the less emotional you become when retelling it.
That's why I like writing these blogs because my initial emotions are captured and people don't get the wrong idea about how bad or good things are.....well some do but I can't have everything can I?
I managed to produce a sample of wee which showed signs of infection (bloody marvelous) and then it was time to take more blood. As if I haven't had enough blood tests lately. As my latest PICC scar is still a good half centimetre across and red I suggested my poor left arm where I can pretty much see most of my other test scars, tiny pits. First attempt - it hurt a bit and not a lot happened............same arm, different vein, much fist making and arm tapping to encourage my shy vein - no blood. Not enough to test anyway and she needed a few tubes filling. I got a bit queasy at this point - it was 1.30pm and I was thirsty and hungry and poking in my arm isn't the best thing in that state. My blood pressure had shown it was still on the low side so I had a bit of a lie down on the bed and a glass of water while a different nurse came in and opted for the first PICC vein on my right arm which bled like a stuck pig. At last! After a cup of tea and another reminder of what would happen, or at least what we hope will happen next Friday I went home to see if my parcel had arrived.
NO parcel.
I doubled checked the UPS site, but it still only said that it had arrived at Nottingham UPS in the morning. A van went past and I ran out the front door.....it wasn't my delivery.
A little later a UPS van drove by........again I ran out of the front door. About five minutes later they came back - I was right there, the driver didn't need to get out of the vehicle!
My ipod Touch 32GB had arrived to replace my 40GB ancient brick of a 3rd generation ipod photo. Bless it, it has done me proud for a good few years since I got it one bountiful Christmas but having played with the iPhone in a local shop.....I'm afraid I was sold.
I've been sending emails, surfing the net, playing games, all whilst listening to music. It's got google earth maps on it and I can plan routes and get directions and EVERYTHING. It's bloody gorgeous. I don't even have to worry about the expense because I'm getting a teeny windfall next month so it's covered. The children will still be fed.
The nurse called me through and we went through the questions I'd answered on the admission form, basically to check I'm not asthmatic, have heart problems or anything that might cause issues with anaesthetic or other drugs as I did back in June. I'd listed all the drugs I'm currently taking (four at last count) and the doses. After the paperwork was done and I'd answered the comedy questions "Are you seeing your GP about any serious illnesses at the moment" - "Na, just anything cancer related - that's all I've ever seen him about".
I was weighed and my height measured. I've got my centimetre back!! I'm back to 5'10 again and 178cm. I'm guessing that's because I don't have back pain and am not as exhausted as I've been when I've been measured before.
While we were chatting about my side effects that I'm still stuck with, the nurse seemed a little surprised by my matter of fact attitude, she asked how I cope? She thought I was very brave. But I didn't set out to get cancer, I didn't choose to deal with it so how can I be brave? What option do I have but to just get on with it? I'm guessing most people she sees with cancer are older and dare I say more negative or better at moaning about their lot. Most likely because they have other health issues and were hoping to have some free healthy time to enjoy their retirement. She actually had to grab a tissue and grab her eyes, so I apologised for upsetting her (!) which didn't help.... I suppose I'm so used to all this now and I know from bitter experience that the more you repeat the details about something distressing, the less emotional you become when retelling it.
That's why I like writing these blogs because my initial emotions are captured and people don't get the wrong idea about how bad or good things are.....well some do but I can't have everything can I?
I managed to produce a sample of wee which showed signs of infection (bloody marvelous) and then it was time to take more blood. As if I haven't had enough blood tests lately. As my latest PICC scar is still a good half centimetre across and red I suggested my poor left arm where I can pretty much see most of my other test scars, tiny pits. First attempt - it hurt a bit and not a lot happened............same arm, different vein, much fist making and arm tapping to encourage my shy vein - no blood. Not enough to test anyway and she needed a few tubes filling. I got a bit queasy at this point - it was 1.30pm and I was thirsty and hungry and poking in my arm isn't the best thing in that state. My blood pressure had shown it was still on the low side so I had a bit of a lie down on the bed and a glass of water while a different nurse came in and opted for the first PICC vein on my right arm which bled like a stuck pig. At last! After a cup of tea and another reminder of what would happen, or at least what we hope will happen next Friday I went home to see if my parcel had arrived.
NO parcel.
I doubled checked the UPS site, but it still only said that it had arrived at Nottingham UPS in the morning. A van went past and I ran out the front door.....it wasn't my delivery.
A little later a UPS van drove by........again I ran out of the front door. About five minutes later they came back - I was right there, the driver didn't need to get out of the vehicle!
My ipod Touch 32GB had arrived to replace my 40GB ancient brick of a 3rd generation ipod photo. Bless it, it has done me proud for a good few years since I got it one bountiful Christmas but having played with the iPhone in a local shop.....I'm afraid I was sold.
I've been sending emails, surfing the net, playing games, all whilst listening to music. It's got google earth maps on it and I can plan routes and get directions and EVERYTHING. It's bloody gorgeous. I don't even have to worry about the expense because I'm getting a teeny windfall next month so it's covered. The children will still be fed.
Wednesday 6 February 2008
2008 Feb 6th - CT Scan
(In which Lisa manages NOT to faint like last time 13 months ago...................)
I had some very weird dreams last night. I'm not sure if it was because I watched the first episode of Lost season 4 or just because I knew it was scan day today. I say weird dreams, it was more like just the one dream which carried on even though I woke up a few times in between. Something odd where some bloke had disappeared but managed to take a symbol that belonged to a girl - it was like a badge or pendant or something but was official, not pretty jewellery. Anyway, at the time I was sure I was just dreaming about a film I'd seen and was replaying in my sleep so didn't pay much attention (in my sleep). The badge thingy with the symbol on was his saving grace because no one could see him and he couldn't contact anyone until he realised if he shone a torch through the badge thingy it illuminated the sky with the girl's name and some logo. That gave them hope to carry on looking for him and involved creating a decoy around some dangerous waters where he swam to safety!
No, I can't read anything useful into that dream either, don't bother trying.
Maybe it was Fat Tuesday's pancakes that made me dream...........I had lemon and sugar on mine and Karys had lemon scented honey. Unfortunately I ran out of gram flour (just that and water make low cal protein pancakes) so had to resort to the egg, milk and "ahem" brown rice flour! No, I still haven't bought any wheat flour after last year's "Starve Tyson, feed Lisa" diet. Anyway they were yummy.
Woke up feeling nice and cosy warm this morning before the alarm went off, but then wished I'd got up BEFORE the alarm went off because when I did lift the duvet, I realised evil PTW had sprung a leak during one of my dozes. Great. Perhaps he knows his days are numbered and just wants to go out with a bang...........? Thank you whoever invented incontinence pads for beds.
Actually, strike that. Thank you to whoever came up with the idea of producing a stoma to avoid certain death or a life time of pain (for those with non cancer related ones).
So to the scan. Umpa arrived in time for a swift coffee and catch up on emails (no broadband yet at Umpa Towers....ah sorry I forgot to mention the lack of blogging may have had something to do with her moving house last week). Had to hotfoot it into the disabled loo while she parked the car, since we drove round and round the disabled parks but they've dug half of them up for some reason so NO spaces there. In the end she had to park the furthest distance possible from the outpatients entrance. Typical. By the time she found me, she'd already whizzed round to CT reception looking for me (I'm slower than I thought).
Lucky me, I sat next to an older woman. She greeted me, now with a cheery "Hello!" but with
"I don't know WHY they get you here so early if all they do is make you wait".
Me: Well you'll be having several hundred pounds worth of scan, you want them to get yours right don't you?
Woman: A hundred pounds!
Me: No, several hundred pounds. They can't plan for everything, once when I had one I passed out so I know that must have held the next patient up, but these things happen. They don't always know how people will react to the drinks and dyes.
Woman: I've got a stone and it's getting bigger. I had an x-ray but I thought they'd DO something about it not send me for scan.
Me: Oh right (losing the will at her poo pooing a VERY expensive and complex diagnostic tool)
Woman: So why have you had scans before?
Me: I'm a cancer patient.
Woman: (imagine blase tone) Oh I've had cancer. I had breast cancer, what have you got?
Me: Bowel cancer.
Woman: They took my breast so I have to wear a falsy
Me: Well, at least you still have all your internal organs, I think I'd probably rather lose a breast than everything I've been through. (Yes I think I was a bit harsh but it's how I feel and she was treating me having a scan to see if I still have cancer in a very trivial manner, plus her skin was thicker than a rhinos)
Nurse calls me through to check details and that I'm fit to scan...............
Nurse: Would you like to come this way with me?
Me: Yes please, ANYTHING to get away............
Nurse: I'll show you where there are some other seats you can sit in peace.
Woman: Hmpppf! My appointment was 2.15!!!
Umpa: Yes, so was my sister's.
Woman: So, are YOU fit then?
Umpa: As far as I know, yes.
Strangely, as ever the next couple into the waiting room were chatty and good humoured. This despite the poor woman having polycystic (something) i.e. she has cysts growing everywhere and last time drained 8 litres of fluid that had collected in her abdomen. They grow inside all her organs which is probably about as shit as having tumours grow everywhere. SHE was grateful to be alive and her husband was pleased she was still being cheerful despite everything she was going through.
Why is it some people have to moan and whine their way through the day and others just get on with it? I'm pretty sure I've been good humoured at least 90% of the time and only let people know how bad things were approximately 1% of the time, which leaves about 9% of whinging and whining. This blog doesn't count by the way - well it's part of the 1% and of the 9%.................!
I'd like to say I felt like this scan was "just a formality". It isn't. Whilst I can pretend to be outwardly confident over the results that I will be NED (no evidence of disease) it doesn't mean diddly until the Lone Ranger tells me so next week and I can have that operation to shove PTW right back inside where he belongs. Before I know it I'll be back in to see him for my next 3 monthly check up on my blood results.
Ha, speaking of the Lone Ranger, remember last year on Valentine's Day............when he was busy shoving a 53cm tube into my right arm for the FIRST time? Well I get to see him on the 14th again this year too. He'd asked me to pop into the chemo suite so they could let him know my scan was done and Ray handed me the appoinment and pointed out it was a leap year.............
DON'T go buying any hats. Honestly.
I had some very weird dreams last night. I'm not sure if it was because I watched the first episode of Lost season 4 or just because I knew it was scan day today. I say weird dreams, it was more like just the one dream which carried on even though I woke up a few times in between. Something odd where some bloke had disappeared but managed to take a symbol that belonged to a girl - it was like a badge or pendant or something but was official, not pretty jewellery. Anyway, at the time I was sure I was just dreaming about a film I'd seen and was replaying in my sleep so didn't pay much attention (in my sleep). The badge thingy with the symbol on was his saving grace because no one could see him and he couldn't contact anyone until he realised if he shone a torch through the badge thingy it illuminated the sky with the girl's name and some logo. That gave them hope to carry on looking for him and involved creating a decoy around some dangerous waters where he swam to safety!
No, I can't read anything useful into that dream either, don't bother trying.
Maybe it was Fat Tuesday's pancakes that made me dream...........I had lemon and sugar on mine and Karys had lemon scented honey. Unfortunately I ran out of gram flour (just that and water make low cal protein pancakes) so had to resort to the egg, milk and "ahem" brown rice flour! No, I still haven't bought any wheat flour after last year's "Starve Tyson, feed Lisa" diet. Anyway they were yummy.
Woke up feeling nice and cosy warm this morning before the alarm went off, but then wished I'd got up BEFORE the alarm went off because when I did lift the duvet, I realised evil PTW had sprung a leak during one of my dozes. Great. Perhaps he knows his days are numbered and just wants to go out with a bang...........? Thank you whoever invented incontinence pads for beds.
Actually, strike that. Thank you to whoever came up with the idea of producing a stoma to avoid certain death or a life time of pain (for those with non cancer related ones).
So to the scan. Umpa arrived in time for a swift coffee and catch up on emails (no broadband yet at Umpa Towers....ah sorry I forgot to mention the lack of blogging may have had something to do with her moving house last week). Had to hotfoot it into the disabled loo while she parked the car, since we drove round and round the disabled parks but they've dug half of them up for some reason so NO spaces there. In the end she had to park the furthest distance possible from the outpatients entrance. Typical. By the time she found me, she'd already whizzed round to CT reception looking for me (I'm slower than I thought).
Lucky me, I sat next to an older woman. She greeted me, now with a cheery "Hello!" but with
"I don't know WHY they get you here so early if all they do is make you wait".
Me: Well you'll be having several hundred pounds worth of scan, you want them to get yours right don't you?
Woman: A hundred pounds!
Me: No, several hundred pounds. They can't plan for everything, once when I had one I passed out so I know that must have held the next patient up, but these things happen. They don't always know how people will react to the drinks and dyes.
Woman: I've got a stone and it's getting bigger. I had an x-ray but I thought they'd DO something about it not send me for scan.
Me: Oh right (losing the will at her poo pooing a VERY expensive and complex diagnostic tool)
Woman: So why have you had scans before?
Me: I'm a cancer patient.
Woman: (imagine blase tone) Oh I've had cancer. I had breast cancer, what have you got?
Me: Bowel cancer.
Woman: They took my breast so I have to wear a falsy
Me: Well, at least you still have all your internal organs, I think I'd probably rather lose a breast than everything I've been through. (Yes I think I was a bit harsh but it's how I feel and she was treating me having a scan to see if I still have cancer in a very trivial manner, plus her skin was thicker than a rhinos)
Nurse calls me through to check details and that I'm fit to scan...............
Nurse: Would you like to come this way with me?
Me: Yes please, ANYTHING to get away............
Nurse: I'll show you where there are some other seats you can sit in peace.
Woman: Hmpppf! My appointment was 2.15!!!
Umpa: Yes, so was my sister's.
Woman: So, are YOU fit then?
Umpa: As far as I know, yes.
Strangely, as ever the next couple into the waiting room were chatty and good humoured. This despite the poor woman having polycystic (something) i.e. she has cysts growing everywhere and last time drained 8 litres of fluid that had collected in her abdomen. They grow inside all her organs which is probably about as shit as having tumours grow everywhere. SHE was grateful to be alive and her husband was pleased she was still being cheerful despite everything she was going through.
Why is it some people have to moan and whine their way through the day and others just get on with it? I'm pretty sure I've been good humoured at least 90% of the time and only let people know how bad things were approximately 1% of the time, which leaves about 9% of whinging and whining. This blog doesn't count by the way - well it's part of the 1% and of the 9%.................!
I'd like to say I felt like this scan was "just a formality". It isn't. Whilst I can pretend to be outwardly confident over the results that I will be NED (no evidence of disease) it doesn't mean diddly until the Lone Ranger tells me so next week and I can have that operation to shove PTW right back inside where he belongs. Before I know it I'll be back in to see him for my next 3 monthly check up on my blood results.
Ha, speaking of the Lone Ranger, remember last year on Valentine's Day............when he was busy shoving a 53cm tube into my right arm for the FIRST time? Well I get to see him on the 14th again this year too. He'd asked me to pop into the chemo suite so they could let him know my scan was done and Ray handed me the appoinment and pointed out it was a leap year.............
DON'T go buying any hats. Honestly.
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