Yesterday Gino D'Acampo (I hope that's the correct spelling) cooked naked on This Morning, having promised to do so if they won the NTA. Since being off work, after the first few weeks, or the weeks where I'm at hospital three days out of 5, This Morning is usually on - on good days I'll do some laundry or ironing or write my blog/chat online to friends at the same time and just pay most attention to the section I'm most interested in. It's an easy way to soak up a few current events and nicer than watching the news which is more austere.
I have a thing for Italian men, my children's father is part Italian, the last man I had a relationship with (not The Rock, we've never had an actual relationsihp, just feelings at the wrong time) was half Italian. It's partly the looks, partly the whole Italian culture. Gino's cheek is obviously an added bonus. Beating Bowel Cancer have shorts cut out with a plastic bottom for some of their campaigns and when he turned to the sink and flexed his glutes, lingering longer than necessary with his back to the camera (at this point he had an apron on) I couldn't help but think "he'd be a good campaign poster for BBC". Later, when he'd removed two knitted woollen "warmers" onto the worktop, Philip Schofield had thrown them into the studio with a pair of tongs.
I follow Philip on Twitter and soon enough there was a photo of the offending items that raised so many giggles and disgusted looks. I'm not up to doing a Peru Trek, it's all I can manage to trek around town or the supermarket some days but I thought maybe they could auction them like the musical tie. The charity have stayed in contact with me for four years. A couple of years ago I did a parachute jump, not strapped to anyone, I jumped with 2 instructors and once my shoot was pulled was on my own so I completed stage 1 of AFF certificate. Had it not hurt my back so much during the training and been expensive I thought I might continue it as a hobby. I raised nearly £1000 for them which was amazing. I've never been good at asking for anything remotely related to me! So yesterday and today I've been sending a few messages to the team and am hoping that amongst the thousands they get, one of mine might stand out. I emailed the show too, just for good measure. So far no response, but I should be getting ready to go to have my line flushed and the swollen, hot, red lump around my PICC line that is now oozing the familiar "infected" snotty lime green pus indicating a need for yet more drugs!
This day last year I was in the hospital and it wasn't a good day. Today isn't so bad, my stillborn identical boys Alexander & Elliott left my body and broke my heart 19 years ago. Eighteen hurt more. I cannot be more grateful for the two children I managed to go on to keep, despite how hard things have been for us all. They are the reasons to carry on, to deal with my life the best way I can, to show them that enjoying what you have is more important than anything else, even when it seems you don't have much.
So whilst remembering two of my dead babies, I'm also hoping the lovely Gino will do me a favour and add to my fundraising to help raise awareness and maybe safe a life or two.
Friday, 28 January 2011
Wednesday, 26 January 2011
2011 26th January - Scantastic
I've been absolutely drained the last few days. The side/back pain started easing on Sunday and although it had all but disappeared Monday morning (so I didn't go to the Dr) it was back in the afternoon. I was too tired to do anything with Karys and actually fell asleep on the sofa while she was here. We weren't sure if it was me snoring that woke me or her laughing at me snoring. I just don't sleep in the day time, even when I came out of hospital after surgery, I didn't sleep. The usual cross pelvic/hip pain is also back. Meaning I won't be dropping my fentanyl dose and possibly do need a referral to the hospice after cancelling it.
Two weeks ago I thought I was up for anything, got the great news from the blood test and immediately went downhill after that. Why? I'm hoping it's an infection making me feel lousy, but the sleepless nights when no position in bed is painfree make me wonder if it's more tumours in another organ. My appetite has dropped, but feeling crappy does that. I can't stop crying again, I struggle to stay awake most of the afternoon and it's all such a waste of my time.
After a horrible night I dragged myself into the shower, sorted a new bag for Fatty, did the whole catheter dilation and got to the hospital without any make up. I've not left the house without make up since I was having chemo. Not being able to eat doesn't help - I felt even weaker without any breakfast.
I lay down across a couple of chairs for a while in between drinks every ten minutes in the waiting room. The nurse couldn't get the cannula into my arm (the one that's had two PICC lines in) so had to call a Dr to have a go - 2nd time lucky. Seems the fine cannulas are a dodgy batch since both of them really hurt - the nurse is pretty sure it's a blunt batch as everyone had been wincing with them and I told her I don't notice them usually so she's looking into it. The one thing a cannula needs to be is sharp! She wasn't impressed that I'd driven myself in - because I looked so crap I thought but she was more bothered by me being on the Fentanyl. I don't get drowsy on them these days so I didn't see the problem. I didn't feel like she was telling me off, I think she just thought I was doing too much. She tried to convince me to use the volunteer scheme or hospital transport. No thanks.
I had two hours to wait for my next appointment with the urology nurse, the first hour shivering in the freezing waiting room near the main doors which didn't stay shut for more than 5 seconds, the second in the restaurant forcing down an awful gloopy broccoli bake.
She also asked if I was feeling bad, said I looked very pale. I was doing alright when I saw her a week ago, albeit in pain. Anyway, it seems I have leukocytes in my wee this week so an infection is likely and a sample has gone to the lab. If it shows anything she will let my surgery know, check they will follow it up and then let me know so I can just pick up a prescription. I probably should have gone to the GP anyway, but I've got cancer, I have good days, bad days, pain. That's the way it is.
Two weeks ago I thought I was up for anything, got the great news from the blood test and immediately went downhill after that. Why? I'm hoping it's an infection making me feel lousy, but the sleepless nights when no position in bed is painfree make me wonder if it's more tumours in another organ. My appetite has dropped, but feeling crappy does that. I can't stop crying again, I struggle to stay awake most of the afternoon and it's all such a waste of my time.
After a horrible night I dragged myself into the shower, sorted a new bag for Fatty, did the whole catheter dilation and got to the hospital without any make up. I've not left the house without make up since I was having chemo. Not being able to eat doesn't help - I felt even weaker without any breakfast.
I lay down across a couple of chairs for a while in between drinks every ten minutes in the waiting room. The nurse couldn't get the cannula into my arm (the one that's had two PICC lines in) so had to call a Dr to have a go - 2nd time lucky. Seems the fine cannulas are a dodgy batch since both of them really hurt - the nurse is pretty sure it's a blunt batch as everyone had been wincing with them and I told her I don't notice them usually so she's looking into it. The one thing a cannula needs to be is sharp! She wasn't impressed that I'd driven myself in - because I looked so crap I thought but she was more bothered by me being on the Fentanyl. I don't get drowsy on them these days so I didn't see the problem. I didn't feel like she was telling me off, I think she just thought I was doing too much. She tried to convince me to use the volunteer scheme or hospital transport. No thanks.
I had two hours to wait for my next appointment with the urology nurse, the first hour shivering in the freezing waiting room near the main doors which didn't stay shut for more than 5 seconds, the second in the restaurant forcing down an awful gloopy broccoli bake.
She also asked if I was feeling bad, said I looked very pale. I was doing alright when I saw her a week ago, albeit in pain. Anyway, it seems I have leukocytes in my wee this week so an infection is likely and a sample has gone to the lab. If it shows anything she will let my surgery know, check they will follow it up and then let me know so I can just pick up a prescription. I probably should have gone to the GP anyway, but I've got cancer, I have good days, bad days, pain. That's the way it is.
Sunday, 23 January 2011
2011 23rd February - Nothing's Happening...
I've been spoiled for company this last week. My mum and her husband came to stay locally (a caravan site across the fields from me). They popped round every day for coffee and took me to my 2 hospital appointments. Next week is going to be a bit strange by comparison I think. They were supposed to come over Christmas but a broken car and the snow put paid to that. It's only been since a few months before I found out about the squatters that we've really been in contact again. I thought since she'd be at my younger sister's wedding it would be easier for everyone if we met up before hand - of course I had all that pain and worry so it never happened. Then I decided I couldn't really deny her spending time with me now I don't have much time. It could have been the "cancer" voice inside pushing me, but I got my son back in my life and she got another daughter in hers. That's how the universe works.
I think after a terrible night the pain has lessened in my left side/back, or is it because I've done less today? Friday night I had liquid filling up Fatty's pouch, four times it filled, I was even sat letting it drain whilst Fatty was doing his thing. 3.30am he shut up. I guess that wetherspoon vegan curry was a mistake?
Fastforward to Sunday afternoon and Fatty still hadn't made a move. Should I have been concerned? I mean judging by what came out Friday night there wasn't anything left, I'd not eaten huge amounts and the more time passes the more I'm scared to eat in case of a blockage (memories of when my colon "forgot" to work for 10 days after the reversal. All of a sudden I get that fammiliar pushing from inside, like Alien is about to burst out and off he goes, half a pouchful.
Luckily that happened before "He" camme to visit, to finally collect the last of the things left at my house, stuff I'd borrowed. I gave him a couple of silly presents for his birthday next week, which I might have got as another reason to get him to come over sooner rather than later, or just because I saw things that made me think of him and made me smile. Originally he was coming Thursday, then Saturday but I had visitors. I spent most of the weekend feeling sick at the thought of seeing him again - it's been 4 months and I thought I'd parked my feelings but no, I don't feel any sodding different at all. I wanted to say so many things, ask if he is still happy, is it how he thought it would be, is it what he still wants? Is this the last time I'll see him now? I couldn't do it though, easier just to keep to small talk. "So what's new?" "Think my tumours have shrunk". You know, the usual.
Still I got 3 very long hugs which I should just try and forget because I don't think I can go through this again. Seems so unfair that he waited nearly 20 years to finally be with her and however he was feeling all those years is what he's making me feel now. I don't want anyone else, which is lucky because I'm not in a position to be with anyone any more. I wish I didn't care about him. I wish I could see him more often, but I don't need the emotional upset, however good I felt for the short hour he was here, the pay off isn't worth it.
I see my daughter tomorrow and hopefully normality will be restored.
I think after a terrible night the pain has lessened in my left side/back, or is it because I've done less today? Friday night I had liquid filling up Fatty's pouch, four times it filled, I was even sat letting it drain whilst Fatty was doing his thing. 3.30am he shut up. I guess that wetherspoon vegan curry was a mistake?
Fastforward to Sunday afternoon and Fatty still hadn't made a move. Should I have been concerned? I mean judging by what came out Friday night there wasn't anything left, I'd not eaten huge amounts and the more time passes the more I'm scared to eat in case of a blockage (memories of when my colon "forgot" to work for 10 days after the reversal. All of a sudden I get that fammiliar pushing from inside, like Alien is about to burst out and off he goes, half a pouchful.
Luckily that happened before "He" camme to visit, to finally collect the last of the things left at my house, stuff I'd borrowed. I gave him a couple of silly presents for his birthday next week, which I might have got as another reason to get him to come over sooner rather than later, or just because I saw things that made me think of him and made me smile. Originally he was coming Thursday, then Saturday but I had visitors. I spent most of the weekend feeling sick at the thought of seeing him again - it's been 4 months and I thought I'd parked my feelings but no, I don't feel any sodding different at all. I wanted to say so many things, ask if he is still happy, is it how he thought it would be, is it what he still wants? Is this the last time I'll see him now? I couldn't do it though, easier just to keep to small talk. "So what's new?" "Think my tumours have shrunk". You know, the usual.
Still I got 3 very long hugs which I should just try and forget because I don't think I can go through this again. Seems so unfair that he waited nearly 20 years to finally be with her and however he was feeling all those years is what he's making me feel now. I don't want anyone else, which is lucky because I'm not in a position to be with anyone any more. I wish I didn't care about him. I wish I could see him more often, but I don't need the emotional upset, however good I felt for the short hour he was here, the pay off isn't worth it.
I see my daughter tomorrow and hopefully normality will be restored.
Thursday, 20 January 2011
2011 19th January - Tubes (not the underground kind)
Since my unexpectedly good news on Friday I got a new pain, in my side. At first I thought it might be kidney pain and the antibiotics hadn't worked. Then after drinking plenty on Saturday when my cousin was over it improved a bit in the afternoon so decided it was just the scarring on my kidneys playing up - being deyhydrated. Sunday it wasn't really evident but it got gradually worse by Tuesday and I started taking ibuprofen which worked. Wednesday morning I couldn't get out of bed until they'd started to work.
I had an appointment with the continence nurse in urology that afternoon so decided that was easier than queuing for a GP appointment.
The nurse said they usually see people a week after the op, not 3 months after, so she said I did really well trying any of them, let alone managing all three sizes. She didn't understand why the idiot that did the first op didn't refer me to her, nor why my first appt for referral was 2 months after op when I had the second. Told her I asked if this was an option a year ago and was told at Lincoln it was in fact standard, yet nobody at Pilgrim seemed to agree.
She showed me with her fisted hand what to do with a catheter and that we'd start with the smaller size and eventually work up to "a 16". I'm not sure if I'm just so used to medical procedures, that I knew what was involved before hand, having had plenty of catheters put in or that there is minimal feeling after surgery/treatment in that area, but it was pretty easy. I managed to get all three sizes in and the nurse seemed pretty impressed that I'd "done really well". I'm guessing there are some women who ONLY have that problem and are squeamish about the whole thing, whereas to me, with part of my intestine sticking out of my belly, it's just another daily task I have to perform to keep things "normal".
Doing this is an infection risk, as is the fistula which still remains in my pouch - meaning waste can get from Fatty's bag to my pouch, and out through the WRONG hole. Basically I'm just a walking infection risk - lucky I'm not on chemo, but if I do go back on it, I'm going to have to be ridiculously careful and lucky not to be living on antibiotics. I REALLY don't want to have to do that because they screw up the good bacteria in the remaining intestines causing more problems.
My urine tested fine, but could be antibiotics masking infection. I have some sample bottles, see continence nurse next Wednesday again and will do test for her and another for lab in case it shows anything then. Meantime I'm taking the ibuprofen which works.
If the pain gets worse then I'll go and queue up Friday morning for an appointment or ring up Dr out of hours but my scan is also next Wednesday (results 4th Feb). Quite likely it's just the "usual" pain moving, or something dumb like a pulled muscle from yoga (can't remember if I did any on Friday).
My stoma nurse is sure it's nothing to do with my bowels. She's never heard of anyone having pain with waste left in colon. Even if it is that, I'd have to see GP or consultant to suggest an enema or flush out anyway, they're not allowed to do it themselves without referral.
So, I'm now loaded up with boxes of "speedicath" catheters, wipes, antibacterial hand gel, larger waste bags, then my box of bags, dry wipes, small waste bags, adhesive rings, scissors, pen, adhesive remover spray, filter stickers, etc. I need to sort the shelving out in my bathroom to accommodate all my medical supplies!
Despite not having encountered Irene since November, my hair continues to fall out, whilst my eyebrows, leg, underarm (and *other*) hair is growing back. I guess it's the old ones still falling...not sure if they'll all go eventually, the ones that were around during Irene's reign? Anyway I cropped it one night at the weekend. I'm so sick of pulling even chin length hairs off my clothes and my pillow, sweeping constantly. It makes me feel grubby having hair all over my house. It balls up on towels in the washing machine - like it does in the bath plughole. That makes me gag.
I had an appointment with the continence nurse in urology that afternoon so decided that was easier than queuing for a GP appointment.
The nurse said they usually see people a week after the op, not 3 months after, so she said I did really well trying any of them, let alone managing all three sizes. She didn't understand why the idiot that did the first op didn't refer me to her, nor why my first appt for referral was 2 months after op when I had the second. Told her I asked if this was an option a year ago and was told at Lincoln it was in fact standard, yet nobody at Pilgrim seemed to agree.
She showed me with her fisted hand what to do with a catheter and that we'd start with the smaller size and eventually work up to "a 16". I'm not sure if I'm just so used to medical procedures, that I knew what was involved before hand, having had plenty of catheters put in or that there is minimal feeling after surgery/treatment in that area, but it was pretty easy. I managed to get all three sizes in and the nurse seemed pretty impressed that I'd "done really well". I'm guessing there are some women who ONLY have that problem and are squeamish about the whole thing, whereas to me, with part of my intestine sticking out of my belly, it's just another daily task I have to perform to keep things "normal".
Doing this is an infection risk, as is the fistula which still remains in my pouch - meaning waste can get from Fatty's bag to my pouch, and out through the WRONG hole. Basically I'm just a walking infection risk - lucky I'm not on chemo, but if I do go back on it, I'm going to have to be ridiculously careful and lucky not to be living on antibiotics. I REALLY don't want to have to do that because they screw up the good bacteria in the remaining intestines causing more problems.
My urine tested fine, but could be antibiotics masking infection. I have some sample bottles, see continence nurse next Wednesday again and will do test for her and another for lab in case it shows anything then. Meantime I'm taking the ibuprofen which works.
If the pain gets worse then I'll go and queue up Friday morning for an appointment or ring up Dr out of hours but my scan is also next Wednesday (results 4th Feb). Quite likely it's just the "usual" pain moving, or something dumb like a pulled muscle from yoga (can't remember if I did any on Friday).
My stoma nurse is sure it's nothing to do with my bowels. She's never heard of anyone having pain with waste left in colon. Even if it is that, I'd have to see GP or consultant to suggest an enema or flush out anyway, they're not allowed to do it themselves without referral.
So, I'm now loaded up with boxes of "speedicath" catheters, wipes, antibacterial hand gel, larger waste bags, then my box of bags, dry wipes, small waste bags, adhesive rings, scissors, pen, adhesive remover spray, filter stickers, etc. I need to sort the shelving out in my bathroom to accommodate all my medical supplies!
Despite not having encountered Irene since November, my hair continues to fall out, whilst my eyebrows, leg, underarm (and *other*) hair is growing back. I guess it's the old ones still falling...not sure if they'll all go eventually, the ones that were around during Irene's reign? Anyway I cropped it one night at the weekend. I'm so sick of pulling even chin length hairs off my clothes and my pillow, sweeping constantly. It makes me feel grubby having hair all over my house. It balls up on towels in the washing machine - like it does in the bath plughole. That makes me gag.
Friday, 14 January 2011
2010 12th January - Birthdays & Good News
On Wednesday my eldest (though technically my third born, second pregnancy - nothing with me is simple is it?) turned 18. A grown up. I made an actual grown up!
Since she goes to college Wed-Fri we spent most of Monday in Stamford, which for those who don't know, is a very pretty town full of stone buildings and cobbled streets with slight hills and plenty of green. There's a big old house with deer in the grounds and some funky statues in the gardens. A great place for picnics and somewhere to let the kids run around. It's where I was supposed to go to college and where I in fact did study some law for a while when I was working for a firm of solicitors. Anyway, Karys hadn't been there for a while and we fancied going somewhere different.
First stop Subway - they do a veggie patty now which is a kind of nut loaf/pate type thing sliced up. Couldn't really taste it much because I had it stuffed with olives, jalapenos and gherkins as well but the whole thing was VERY filling. Karys managed to eat nearly a whole footlong sub! I struggled with the half sub. (See how I avoided a reference to inches there?).
Then we just wandered down the cobbles in and out of shops. There are a few decent shops in the town that sell surf type stuff, things that aren't the usual high street chains, which I like. We ended up in a shop that sells loads of things, bags, bookmarks, purses, jewellery, ornaments, cuddly toys, but again, more interesting ones. We found a ring that fit Karys, which isn't so easy since she has inherited long thin fingers from me (I always used to think they looked like the bone the girl in the Gingerbread House poked through the cage to make the witch think they weren't getting fat......overactive imagination, me?). When she was 16 one of her presents was a silver and garnet half eternity style ring that I got when I was a similar age. She still wears it. Now she has another ring for her 18th. I couldn't help thinking "she'll be able to think about me when she looks at it when I'm gone".
I like that now the pain is controlled again (seemingly by the chemo or the op, the yoga, who knows) we can just wander around some shops, go and have a coffee. My legs were aching and I was tired from the fresh air and exercise but I was also wearing heels. It was a good tired of course. I dropped Karys off at her boyfriend's with her new shoes (with huge platforms) having paid a substantial amount of money into her bank account. She's having a tattoo and has enough now she thinks. She's doing an Art course and has designed the dragon herself, it's brilliant! I've had a thing for dragons for years, collected Enchantica when I was married, but then had to sell everything to feed us and pay maintenance when I left their dad but that's OK. I tend towards minimalist decor now so they'd have had no place in my home now. I'd quite happily have that dragon as my end of chemo tattoo that I'm planning....more on that in a second.
Tuesday my legs were pretty unresponsive and even Wednesday they didn't want to move far from the sofa. I figured I could skip the yoga for after the walking then made up for it with a hard 30 minutes on Wednesday and a short session on Thursday. It makes me hot which is useful since I've got down to my last 100 litres of heating oil. Being at an all time high over Christmas I held off ordering and wasn't in a position to stock up before that. Still it's dropped a bit but I've opted for the minimum order of 500 litres for the best part of £340 and booked a boiler service for next week as well :( I think I'll leave Izzy's annual service until next month.
So, it was three appointments again this week at the hospital. First with urology. Different bloke again - so the fourth urologist I've seen in a year but he was fine. He asked how I felt about being taught to use a catheter once, twice a week or daily, depending on my requirements. I told him I'd specifically asked for this a year ago (almost exactly) but had been told this was "stupid, we don't do that with females" by the urologist mysteriously not working there anymore. He's referred me to the continence nurse and hopefully this will be enough, but it's highly likely I'll have to go back for surgery AGAIN for the third time since March 2010 and have it surgically dilated then continue myself. He had taken the time to read me notes and seen my recent admission and chemo so is hoping to avoid yet another general anaesthetic.
Second was with Dr Tom, my onco. He commented on how good I was looking, and I agreed I've not felt like this since before I knew I was ill, except I'm not in pain. For the first time in a while he had good news:
CEA is within normal range again after only 3 lots of Evil Irene. I knew it had started to drop after the first but hadn't seen this last test result from when I was in hospital so about a month ago. Of course it's probably on it's way up again now, so I've had another test today. Because I'm doing so well and the chemo made me so ill, I'm having a CT scan in the next couple of weeks then see him for the results. Based on that I'll decide if I continue with some more chemo (maybe I'll try another three and see how I feel) or just take the PICC out and monitor with blood tests. If my marker goes up again significantly then I can have another scan. Hopefully we'll be able to see if they're growing again before I get symptoms and can get back on the chemo.
Because of the fistula, I'm no longer a suitable candidate for Avastin, which is a bit shit, but then there's no guarantee that would have made any difference. However, because I can't have that, it means I'm "unique" and as such am more likely to get the PCT to agree to release money from the fund for K-RAS gene tests. If it's not mutated we can try Cetuximab. Sadly that causes crappy skin so I'm not keen on that idea, but there's always some shitty side effect that in the scheme of things is probably "worth it". Dr Tom said back when he was a student they used to all wear aprons in oncology because they hadn't got the anti-emetics we have now so a lot patients would say hello and promptly hurl all over their oncologist! He's not THAT old Dr Tom, early 50s and not looking his age I'd say but it's a major advance in treatment that I'm grateful for.
I mentioned that, although at first I thought it was the contents of my descending colon moving, I've now realised they must have flushed that during surgery and it's Fatty's mucous side (the bit connected to my J-pouch where all the trouble is) sucking back the contents of my bag. This causes me discomfort when amounts less than a teaspoon need to be passed. It's not often, maybe once a day at most, but it does mean I've got the same problem of waste and bacteria coming out of three places now, with no control over any of it. Having just finished a course of antibiotics for yet another infection and this is just going be a constant cause of them. So Dr Tom is putting me on next week's MDT and will "ask the surgical boys".
I'll give the stoma nurses a call on Tuesday to make sure a) he did and b) see what was said or arrange another appointment. I know the surgeon said there is a thing called a fistula plug which may be an option so then it's just coming out the way nature intended and through Fatty OR maybe they can sew up the distal part of the stoma to stop anything getting in. The only reason that bit's there is so it's not floating around inside and if they need to get hold of it, it's there. Loop stomas are supposed to be temporary but mine is permanent. Nothing simple. Nothing straight forward.
I'm not sure what I'll do. I was resigned to starting again, expecting him to recommend starting again next week. My plans for holidays and visiting my best friend in France for her 40th all revolve around chemo, how I feel (will be on a slightly reduced dose which should help) and when I've finished. So, plenty to think about over the next couple of weeks then, but none of it bad!
Since she goes to college Wed-Fri we spent most of Monday in Stamford, which for those who don't know, is a very pretty town full of stone buildings and cobbled streets with slight hills and plenty of green. There's a big old house with deer in the grounds and some funky statues in the gardens. A great place for picnics and somewhere to let the kids run around. It's where I was supposed to go to college and where I in fact did study some law for a while when I was working for a firm of solicitors. Anyway, Karys hadn't been there for a while and we fancied going somewhere different.
First stop Subway - they do a veggie patty now which is a kind of nut loaf/pate type thing sliced up. Couldn't really taste it much because I had it stuffed with olives, jalapenos and gherkins as well but the whole thing was VERY filling. Karys managed to eat nearly a whole footlong sub! I struggled with the half sub. (See how I avoided a reference to inches there?).
Then we just wandered down the cobbles in and out of shops. There are a few decent shops in the town that sell surf type stuff, things that aren't the usual high street chains, which I like. We ended up in a shop that sells loads of things, bags, bookmarks, purses, jewellery, ornaments, cuddly toys, but again, more interesting ones. We found a ring that fit Karys, which isn't so easy since she has inherited long thin fingers from me (I always used to think they looked like the bone the girl in the Gingerbread House poked through the cage to make the witch think they weren't getting fat......overactive imagination, me?). When she was 16 one of her presents was a silver and garnet half eternity style ring that I got when I was a similar age. She still wears it. Now she has another ring for her 18th. I couldn't help thinking "she'll be able to think about me when she looks at it when I'm gone".
I like that now the pain is controlled again (seemingly by the chemo or the op, the yoga, who knows) we can just wander around some shops, go and have a coffee. My legs were aching and I was tired from the fresh air and exercise but I was also wearing heels. It was a good tired of course. I dropped Karys off at her boyfriend's with her new shoes (with huge platforms) having paid a substantial amount of money into her bank account. She's having a tattoo and has enough now she thinks. She's doing an Art course and has designed the dragon herself, it's brilliant! I've had a thing for dragons for years, collected Enchantica when I was married, but then had to sell everything to feed us and pay maintenance when I left their dad but that's OK. I tend towards minimalist decor now so they'd have had no place in my home now. I'd quite happily have that dragon as my end of chemo tattoo that I'm planning....more on that in a second.
Tuesday my legs were pretty unresponsive and even Wednesday they didn't want to move far from the sofa. I figured I could skip the yoga for after the walking then made up for it with a hard 30 minutes on Wednesday and a short session on Thursday. It makes me hot which is useful since I've got down to my last 100 litres of heating oil. Being at an all time high over Christmas I held off ordering and wasn't in a position to stock up before that. Still it's dropped a bit but I've opted for the minimum order of 500 litres for the best part of £340 and booked a boiler service for next week as well :( I think I'll leave Izzy's annual service until next month.
So, it was three appointments again this week at the hospital. First with urology. Different bloke again - so the fourth urologist I've seen in a year but he was fine. He asked how I felt about being taught to use a catheter once, twice a week or daily, depending on my requirements. I told him I'd specifically asked for this a year ago (almost exactly) but had been told this was "stupid, we don't do that with females" by the urologist mysteriously not working there anymore. He's referred me to the continence nurse and hopefully this will be enough, but it's highly likely I'll have to go back for surgery AGAIN for the third time since March 2010 and have it surgically dilated then continue myself. He had taken the time to read me notes and seen my recent admission and chemo so is hoping to avoid yet another general anaesthetic.
Second was with Dr Tom, my onco. He commented on how good I was looking, and I agreed I've not felt like this since before I knew I was ill, except I'm not in pain. For the first time in a while he had good news:
CEA is within normal range again after only 3 lots of Evil Irene. I knew it had started to drop after the first but hadn't seen this last test result from when I was in hospital so about a month ago. Of course it's probably on it's way up again now, so I've had another test today. Because I'm doing so well and the chemo made me so ill, I'm having a CT scan in the next couple of weeks then see him for the results. Based on that I'll decide if I continue with some more chemo (maybe I'll try another three and see how I feel) or just take the PICC out and monitor with blood tests. If my marker goes up again significantly then I can have another scan. Hopefully we'll be able to see if they're growing again before I get symptoms and can get back on the chemo.
Because of the fistula, I'm no longer a suitable candidate for Avastin, which is a bit shit, but then there's no guarantee that would have made any difference. However, because I can't have that, it means I'm "unique" and as such am more likely to get the PCT to agree to release money from the fund for K-RAS gene tests. If it's not mutated we can try Cetuximab. Sadly that causes crappy skin so I'm not keen on that idea, but there's always some shitty side effect that in the scheme of things is probably "worth it". Dr Tom said back when he was a student they used to all wear aprons in oncology because they hadn't got the anti-emetics we have now so a lot patients would say hello and promptly hurl all over their oncologist! He's not THAT old Dr Tom, early 50s and not looking his age I'd say but it's a major advance in treatment that I'm grateful for.
I mentioned that, although at first I thought it was the contents of my descending colon moving, I've now realised they must have flushed that during surgery and it's Fatty's mucous side (the bit connected to my J-pouch where all the trouble is) sucking back the contents of my bag. This causes me discomfort when amounts less than a teaspoon need to be passed. It's not often, maybe once a day at most, but it does mean I've got the same problem of waste and bacteria coming out of three places now, with no control over any of it. Having just finished a course of antibiotics for yet another infection and this is just going be a constant cause of them. So Dr Tom is putting me on next week's MDT and will "ask the surgical boys".
I'll give the stoma nurses a call on Tuesday to make sure a) he did and b) see what was said or arrange another appointment. I know the surgeon said there is a thing called a fistula plug which may be an option so then it's just coming out the way nature intended and through Fatty OR maybe they can sew up the distal part of the stoma to stop anything getting in. The only reason that bit's there is so it's not floating around inside and if they need to get hold of it, it's there. Loop stomas are supposed to be temporary but mine is permanent. Nothing simple. Nothing straight forward.
I'm not sure what I'll do. I was resigned to starting again, expecting him to recommend starting again next week. My plans for holidays and visiting my best friend in France for her 40th all revolve around chemo, how I feel (will be on a slightly reduced dose which should help) and when I've finished. So, plenty to think about over the next couple of weeks then, but none of it bad!
Friday, 7 January 2011
2011 7th January - Appointments
I usually hate my birthday, Christmas & New Year are just times to be endured but last year things changed. Partly because of a responsibility to all those I care about, I wanted things to be special, partly because I, finally, wanted them to be special too. "Just in case it's the last one", or the last one I'm really up to.
I've been really weepy since I left hospital, nearly a month ago. I can cry at anything on the TV, the radio, reading books, random thoughts. Any mention of death, cancer are obvious triggers. Normally I'd think this meant I was depressed - certainly one of the signs previously. I don't feel depressed though, I should know, I've spent most of my life trying to live without or living with anti depressants. Am I still in shock about everything, or is it all just sinking in? Things are so much better than being on chemo. I'm feeling more like myself, my new, changed yet again self and the impending return to poison isn't thrilling me at all, but it's been nice to have this time off a quarter way through to remind me how I'll feel after it's finished.
My mum was supposed to be coming over to stay nearby over Christmas but her car died, the snow arrived and just spoiled those plans.
Christmas day I ate (everything) lunch at my sister's and drove for the first time since surgery, not quite 3 weeks after, naughty but it's only a 5 minute drive and it was alright.
Boxing day the kids arrived late morning and we just watched TV, a film, played connect four and ate nibbles, chocolates and crispy duck pancakes. I'd bought fizzy drinks for the first time in I don't know how long (they're super acidic so banned from my diet - the easiest thing to avoid especially when you have a stoma) and lots of cheese for Karys who loves cheese. For Christmas, apart from the turkey and bacon wrapped sausage, my biggest treat was drinking the bottle of wine I'd had in my kitchen for months and eating whatever I wanted. To be honest, in the scheme of things I think my diet was still 60/40 "on the list" and the pleasure I got from eating cheese on crackers with a small glass of red made me giggle.
Just having the kids in the same room makes me feel alive and well, it will never happen enough, it can't, they're teenagers, Karys turns 18 on Tuesday. I am so happy they want to spend time with me, that they are happy in my company makes me want to cry (I don't, not until they've gone). Karys stayed the night and I took her to her boyfriends later the next day after we went into town for a bit of shopping and a Nero's coffee (I asked for Soy Chai Latte, but got a coffee made with soy instead, still drank it). When I got home after two days with them being in the house it wasn't so bad, but the next day was pretty miserable and lonely. It only lasted a day though and I always know I'll see them again soon, and they're there, they're happy.
My son was 16 on New Year's Eve and he said he might try and come round for a bit but, as I half expected he changed his mind to seeing me the next day, which worked out better as he wasn't in a rush to then go and meet his friends to go to a party. He managed to leave his (christmas present from me) phone in the taxi so for 3 hours after the time he'd said he'd want picking up, I heard nothing. After 2 hours of no reply to my text I rang. Then I spent an hour feeling sick and pushing thoughts of "New Year Tragedy" headlines out of my brain and actually hoped he'd lost his phone which would be crap because it was expensive, and I bought it, but the very least of any evils. Luckily his dad had my house number and he finally rang. I can't tell you the relief at that phone call. He managed to escape from my main road flat "to go and wait by Daddy's car" when he was about 3 once when his dad came to fetch them after the weekend. I was literally on the point of vomiting at the thought of what could have happened to him when we found him a few yards down the road stood patiently waiting by a different red car. Horrible, horrible losing a child for even a few minutes.
So I had my boy for another few precious hours all to myself. I bought him a watch that he'd picked out a couple of months before. It's so strange seeing the size of him and rem embering the little boy he used to be, seeing his humour develop. He's always had a very dry sense of humour that often adults would miss, which used to make me more proud that he fooled them with his precociousness.
One of my friends, a fellow Bum Bandit, posted on Facebook about her friend's daughter who went missing mid December aged 14. She had no press coverage other than local London news, it all went to the sadly deceased Jo Yeates. Thankfully she (Serena Breakhurst) turned up this week safe and is back with her family. It has been rumoured it was the amount of reposting on Twitter that finally led to her return. There's been more publicity since she was found? How does that work? I hope they had a late Christmas day to replace the misery they must have endured.
I had friends and their daughter over one night and my mum and her husband came over eventually on 2nd January in the new car. There's been a steady trickle of visitors with no huge gaps of lonely days and nights inbetween.
This week I had a check up with stoma nurse on Tuesday - have yet another bag to try which I'm rather liking now things have healed and Fatty has shrunk down a lot! There won't be any follow up planned appointments, unless I need them. I forgot to ask about flushing the leftover waste in my descending colon though........doh! More on that later. The taxi firm called me to let me know the driver had dropped Phoenix's phone in so I could pick it up. Not being able to get hold of my son (I don't ring his house as there is no communication now between me and their father, too many bad things said) I decided to pick it up, and risk knocking on the door hoping he'd be at home on his last day of holidays. He was. I totally forgot that I'd taken the plunge and worn my wig for the first time and realised that might be the reason for the slight smile on his face. I mentioned it, he said it looked alright and liked my coat. I think it does look alright, it just doesnt' look like my hair ever did which is the strangest things. It feels like wearing a hat so I forget, my head is so warm.
There were a few bits I needed so I went to Morrisons and had an all day meat free breakfast and took my time over it then did a mini shop. I don't think anyone stared. I got home at 4.30pm after leaving at 10am, tired but feeling like I'd spent a normal day, no breakthrough pain which was a real triumph. I'm not sure now if Dr Tom is right and that after the internal swelling has gone down around the fistula, that maybe the pain was something to do with it, or my J-pouch. Either way I'll take it. Maybe this means I can get off the patches one day?
Wednesday I just read in bed, resting for the evening ahead and the day before. I was picked up and spent a few hours with the friends who'd visited before Christmas. Their daughter is ON all the time, she's just full of life and good at everything and lovely and funny. Tiring to be in her company for someone like me, but also her enthusiasm rubs off on you.
Thursday - GP appointment for a sick note, mention the cystitis, ask about a flu jab. I was an hour late. So many of my appointments have been 10.30 lately I just mixed it up. The receptionist was really good and tagged me onto the end of surgery, since technically I probably hadn't slowed things down, just rearranged the order, I was SO relieved! I went back two hours later - my second day in the wig. Dr was sympathetic, reading the recent letters from hospital detailing how after admission through A&E I was "too ill and unable to face surgery, so sent home to rest and to be readmitted...". He commented I'd not had a very easy time of things over the holidays and cue tears again. I told him I was pretty sure I have cystitis again (since the dilatation never lasts more than a couple of months). Again he didn't bat an eyelid at my cheeky self diagnosis, they never have done at this surgery. He just checked the symptoms I have and gave me a prescription, a drug I've had before. I told him the contents of my descending colon, which can be flushed by my stoma nurses (inserting a tube into my stoma) seemed to be making signs of moving on their own. The sooner the better for me, having waste coming out of three places, none of which I have any control over. At least I know this bit is finite, but it's still distressing, just more manageable and less painful. He said the antibiotics might speed that up, since they get into my blood stream it might be a "Brucie Bonus". You can't beat a Dr with a sense of humour. I asked about the flu jab and he said to ask at reception but the nurse was in.
The nurse was lovely, she double checked that it would be OK since I'm about to start antibiotics. Given my particular situation Dr said this was alright. We had a chat for a while after the injection, just about scarves and hood/scarves with pockets. She started to say "Is your hair...." I didn't wait for the rest of the question, but shook my head and said "No, it is a wig". She said she really wasn't sure even close up because of all the colours in it. Part of the reason for getting a Noriko wig is because of the mixed colours, red, blonde and brown - similar colours to ones I've had before in my own hair. She thinks it's beautiful. I do like it, it's not how my own hair behaves, i.e. it retains a kink, it's thicker and "bigger" than my hair ever can be, but she thought it looked like I'd just come from the hairdressers because they always blow dry her hair bigger than she can get it.
I came home feeling almost teary that everyone was just so "nice". I don't expect people to be horrible, but there was just a much higher level of kindness than was even necessary. I'd like to think it has something to do with my own attitude. I mean the GP and nurse could just have been extra nice because of my shitty situation, but the receptionist? She's not the smiliest of the three I've met, but I wasn't rude, obviously, just explained that I'd not made the appointment myself and one of us must have misheard. I saw her on my way out after my appointment and made a point of thanking her again, she asked if the Dr had been OK seeing me as an "extra". It makes up for the appalling bedside manner of the idiot doctors in hospital.
Today it was yet another trip out (so that's four outings in four days) to have my PICC line flushed. I've been feeling pretty tired this week, because I'm doing more I hope, so although my head is quite awake, and sharper than it was during chemo and post surgery, my body is tired and slightly achey everywhere. I went to bed at 10 and read for a bit, sobbing at the book's harsh twist near the end (told you, I cry at anything). The book mirrors a friendship I have with someone in a lot of ways which didn't help, but it gave me a different outlook on things which is what I like to get from anything I invest a few hours in, if at all possible. I didn't wake up until 11, so I think that's about 11 hours sleep!
Jasper was on form today as usual in the haematology suite (next door to chemo suite where they do blood and flushes). He was again disappointed that I was alone since twice I've taken "lovely young ladies" with me and have set the bar. He's always got an anecdote which probably makes a relatively short job of undressing/flushing/dressing my line a minute or two longer, but makes the whole experience even more worthwhile. I told him, I know I can get the district nurse to do it if I ask, but why would I when I can go there instead? It gets me out of the house once a week, chemo or not! He didn't comment on my wig at all, even in a whisper, and as I walked past reception, Maria said "Hello Lisa" so I went back, surprised she'd recognised me because I think I look so different.
After hospital, as planned I got my usual free parking space, next to the (not free) car park, not even needing my blue badge close to town. I sat in Neros for over an hour over a Chai Soy Latte and Veggie Panini. A couple of people looked at me longer than I thought necessary through the window (can't people watch if you don't sit by the window) but mostly I forget I'm wearing a wig. It's very warm which means I don't think I'll have reason to buy the lovely fur trimmed trapper hat I've found on Boohoo's website :o( Gutted! However, it does save me some time in getting ready, I can just roll out of bed, into the shower. Even though I change my bag when I have a shower, on those days I've got it down so fast now the pain and swelling is gone, that's quicker than washing and drying what little hair I have.
Next week I have made an appointment to see my oncologist, since nobody else saw fit to plan one. Part of me wants to just forget about it, carry on as I am feeling good and pottering about. The sensible part says, you made the decision to have chemo and see if it shrinks the tumours, so see it through, don't be a quitter. Although I wouldn't say I have anything resembling an appetite, I have forced myself to be aware of times when I think I could eat something, outside of mealtimes. So far, although I put on a few pounds over Christmas (cheese and chocolate) which have gone again, I've stayed level at around 130lbs (59kg, 9st 4lbs). Chemo isn't going to control me this time and there was talk of putting me on Neupogen straight away to keep my white cells up, hopefully stop any delays in finishing and just crack on with it, get it out of the way. I don't know if I'll have a scan after 3 doses, making it halfway through, given my long break. I hope so. I'd really like to know if there's been any change.
The biggest change has been inside my head. I'm so grateful for any time spent with friends and family, but I'm not impatient to see anyone. I'm quite content being at home and have got some kind of loose routine - don't stay in bed later than 10 (usually up till 2am reading or watching TV) get dressed at least half the week, put make up on if I go out, even if only to the surgery. Yoga every day if possible, unless I'm walking a lot, no more than 2 days off regardless of how tired I am. Sometimes I just do a routine for bedtime yoga which is very sedate but those stretches ARE making a difference, I can feel it in my legs particularly. I've made the decision to quit my job when my sick pay ends. My GP discussed this too - making sure I am not missing out on anything, but as I told him, my employer isn't nice, he only gives me the minimum legal requirement of £79.15 a week and no more. My last company paid full pay for 6 months, half pay for the rest of my time off - for 14 months in total, with a slow return to work planned by a third party at my pace and subsidised with the half pay still, regular review on how I was coping. I don't feel I owe my current boss a thing. He has no compassion and I have lost all respect for him. There is no way on this earth I shall sit in that showroom office alone, just to make his life easier. There isn't any hot water on the premises yet, though he did buy a hot water heater it never got fitted. The breakthrough pain caused by sitting upright in an office chair is reason enough never to work in an office again. This will affect my income but I'll sell my house for a smaller one when the time comes if things become too hard. I might even sell it, put things in storage and go travelling for a few weeks after chemo, who knows. I'm in the enviable position of having 60% equity and a very saleable detached house overlooking fields so I think it will sell quickly. But for now, I love the peace, the huge living room and my conservatory.
So that's what I've been up to, doesn't sound like a lot, but then it's only been a month since surgery hasn't it?
I hope my fellow blog friends are improving, healing (Carole), or at least managing to get through (Tony being on Irene). Sorry I've been quiet, it was really just because I've been busy doing stuff, but I do like to keep a record for myself - it helps to read back over what's happened just to see how well I've done or remind myself things will get better again in the bad patches.
Happy 2011
I've been really weepy since I left hospital, nearly a month ago. I can cry at anything on the TV, the radio, reading books, random thoughts. Any mention of death, cancer are obvious triggers. Normally I'd think this meant I was depressed - certainly one of the signs previously. I don't feel depressed though, I should know, I've spent most of my life trying to live without or living with anti depressants. Am I still in shock about everything, or is it all just sinking in? Things are so much better than being on chemo. I'm feeling more like myself, my new, changed yet again self and the impending return to poison isn't thrilling me at all, but it's been nice to have this time off a quarter way through to remind me how I'll feel after it's finished.
My mum was supposed to be coming over to stay nearby over Christmas but her car died, the snow arrived and just spoiled those plans.
Christmas day I ate (everything) lunch at my sister's and drove for the first time since surgery, not quite 3 weeks after, naughty but it's only a 5 minute drive and it was alright.
Boxing day the kids arrived late morning and we just watched TV, a film, played connect four and ate nibbles, chocolates and crispy duck pancakes. I'd bought fizzy drinks for the first time in I don't know how long (they're super acidic so banned from my diet - the easiest thing to avoid especially when you have a stoma) and lots of cheese for Karys who loves cheese. For Christmas, apart from the turkey and bacon wrapped sausage, my biggest treat was drinking the bottle of wine I'd had in my kitchen for months and eating whatever I wanted. To be honest, in the scheme of things I think my diet was still 60/40 "on the list" and the pleasure I got from eating cheese on crackers with a small glass of red made me giggle.
Just having the kids in the same room makes me feel alive and well, it will never happen enough, it can't, they're teenagers, Karys turns 18 on Tuesday. I am so happy they want to spend time with me, that they are happy in my company makes me want to cry (I don't, not until they've gone). Karys stayed the night and I took her to her boyfriends later the next day after we went into town for a bit of shopping and a Nero's coffee (I asked for Soy Chai Latte, but got a coffee made with soy instead, still drank it). When I got home after two days with them being in the house it wasn't so bad, but the next day was pretty miserable and lonely. It only lasted a day though and I always know I'll see them again soon, and they're there, they're happy.
My son was 16 on New Year's Eve and he said he might try and come round for a bit but, as I half expected he changed his mind to seeing me the next day, which worked out better as he wasn't in a rush to then go and meet his friends to go to a party. He managed to leave his (christmas present from me) phone in the taxi so for 3 hours after the time he'd said he'd want picking up, I heard nothing. After 2 hours of no reply to my text I rang. Then I spent an hour feeling sick and pushing thoughts of "New Year Tragedy" headlines out of my brain and actually hoped he'd lost his phone which would be crap because it was expensive, and I bought it, but the very least of any evils. Luckily his dad had my house number and he finally rang. I can't tell you the relief at that phone call. He managed to escape from my main road flat "to go and wait by Daddy's car" when he was about 3 once when his dad came to fetch them after the weekend. I was literally on the point of vomiting at the thought of what could have happened to him when we found him a few yards down the road stood patiently waiting by a different red car. Horrible, horrible losing a child for even a few minutes.
So I had my boy for another few precious hours all to myself. I bought him a watch that he'd picked out a couple of months before. It's so strange seeing the size of him and rem embering the little boy he used to be, seeing his humour develop. He's always had a very dry sense of humour that often adults would miss, which used to make me more proud that he fooled them with his precociousness.
One of my friends, a fellow Bum Bandit, posted on Facebook about her friend's daughter who went missing mid December aged 14. She had no press coverage other than local London news, it all went to the sadly deceased Jo Yeates. Thankfully she (Serena Breakhurst) turned up this week safe and is back with her family. It has been rumoured it was the amount of reposting on Twitter that finally led to her return. There's been more publicity since she was found? How does that work? I hope they had a late Christmas day to replace the misery they must have endured.
I had friends and their daughter over one night and my mum and her husband came over eventually on 2nd January in the new car. There's been a steady trickle of visitors with no huge gaps of lonely days and nights inbetween.
This week I had a check up with stoma nurse on Tuesday - have yet another bag to try which I'm rather liking now things have healed and Fatty has shrunk down a lot! There won't be any follow up planned appointments, unless I need them. I forgot to ask about flushing the leftover waste in my descending colon though........doh! More on that later. The taxi firm called me to let me know the driver had dropped Phoenix's phone in so I could pick it up. Not being able to get hold of my son (I don't ring his house as there is no communication now between me and their father, too many bad things said) I decided to pick it up, and risk knocking on the door hoping he'd be at home on his last day of holidays. He was. I totally forgot that I'd taken the plunge and worn my wig for the first time and realised that might be the reason for the slight smile on his face. I mentioned it, he said it looked alright and liked my coat. I think it does look alright, it just doesnt' look like my hair ever did which is the strangest things. It feels like wearing a hat so I forget, my head is so warm.
There were a few bits I needed so I went to Morrisons and had an all day meat free breakfast and took my time over it then did a mini shop. I don't think anyone stared. I got home at 4.30pm after leaving at 10am, tired but feeling like I'd spent a normal day, no breakthrough pain which was a real triumph. I'm not sure now if Dr Tom is right and that after the internal swelling has gone down around the fistula, that maybe the pain was something to do with it, or my J-pouch. Either way I'll take it. Maybe this means I can get off the patches one day?
Wednesday I just read in bed, resting for the evening ahead and the day before. I was picked up and spent a few hours with the friends who'd visited before Christmas. Their daughter is ON all the time, she's just full of life and good at everything and lovely and funny. Tiring to be in her company for someone like me, but also her enthusiasm rubs off on you.
Thursday - GP appointment for a sick note, mention the cystitis, ask about a flu jab. I was an hour late. So many of my appointments have been 10.30 lately I just mixed it up. The receptionist was really good and tagged me onto the end of surgery, since technically I probably hadn't slowed things down, just rearranged the order, I was SO relieved! I went back two hours later - my second day in the wig. Dr was sympathetic, reading the recent letters from hospital detailing how after admission through A&E I was "too ill and unable to face surgery, so sent home to rest and to be readmitted...". He commented I'd not had a very easy time of things over the holidays and cue tears again. I told him I was pretty sure I have cystitis again (since the dilatation never lasts more than a couple of months). Again he didn't bat an eyelid at my cheeky self diagnosis, they never have done at this surgery. He just checked the symptoms I have and gave me a prescription, a drug I've had before. I told him the contents of my descending colon, which can be flushed by my stoma nurses (inserting a tube into my stoma) seemed to be making signs of moving on their own. The sooner the better for me, having waste coming out of three places, none of which I have any control over. At least I know this bit is finite, but it's still distressing, just more manageable and less painful. He said the antibiotics might speed that up, since they get into my blood stream it might be a "Brucie Bonus". You can't beat a Dr with a sense of humour. I asked about the flu jab and he said to ask at reception but the nurse was in.
The nurse was lovely, she double checked that it would be OK since I'm about to start antibiotics. Given my particular situation Dr said this was alright. We had a chat for a while after the injection, just about scarves and hood/scarves with pockets. She started to say "Is your hair...." I didn't wait for the rest of the question, but shook my head and said "No, it is a wig". She said she really wasn't sure even close up because of all the colours in it. Part of the reason for getting a Noriko wig is because of the mixed colours, red, blonde and brown - similar colours to ones I've had before in my own hair. She thinks it's beautiful. I do like it, it's not how my own hair behaves, i.e. it retains a kink, it's thicker and "bigger" than my hair ever can be, but she thought it looked like I'd just come from the hairdressers because they always blow dry her hair bigger than she can get it.
I came home feeling almost teary that everyone was just so "nice". I don't expect people to be horrible, but there was just a much higher level of kindness than was even necessary. I'd like to think it has something to do with my own attitude. I mean the GP and nurse could just have been extra nice because of my shitty situation, but the receptionist? She's not the smiliest of the three I've met, but I wasn't rude, obviously, just explained that I'd not made the appointment myself and one of us must have misheard. I saw her on my way out after my appointment and made a point of thanking her again, she asked if the Dr had been OK seeing me as an "extra". It makes up for the appalling bedside manner of the idiot doctors in hospital.
Today it was yet another trip out (so that's four outings in four days) to have my PICC line flushed. I've been feeling pretty tired this week, because I'm doing more I hope, so although my head is quite awake, and sharper than it was during chemo and post surgery, my body is tired and slightly achey everywhere. I went to bed at 10 and read for a bit, sobbing at the book's harsh twist near the end (told you, I cry at anything). The book mirrors a friendship I have with someone in a lot of ways which didn't help, but it gave me a different outlook on things which is what I like to get from anything I invest a few hours in, if at all possible. I didn't wake up until 11, so I think that's about 11 hours sleep!
Jasper was on form today as usual in the haematology suite (next door to chemo suite where they do blood and flushes). He was again disappointed that I was alone since twice I've taken "lovely young ladies" with me and have set the bar. He's always got an anecdote which probably makes a relatively short job of undressing/flushing/dressing my line a minute or two longer, but makes the whole experience even more worthwhile. I told him, I know I can get the district nurse to do it if I ask, but why would I when I can go there instead? It gets me out of the house once a week, chemo or not! He didn't comment on my wig at all, even in a whisper, and as I walked past reception, Maria said "Hello Lisa" so I went back, surprised she'd recognised me because I think I look so different.
After hospital, as planned I got my usual free parking space, next to the (not free) car park, not even needing my blue badge close to town. I sat in Neros for over an hour over a Chai Soy Latte and Veggie Panini. A couple of people looked at me longer than I thought necessary through the window (can't people watch if you don't sit by the window) but mostly I forget I'm wearing a wig. It's very warm which means I don't think I'll have reason to buy the lovely fur trimmed trapper hat I've found on Boohoo's website :o( Gutted! However, it does save me some time in getting ready, I can just roll out of bed, into the shower. Even though I change my bag when I have a shower, on those days I've got it down so fast now the pain and swelling is gone, that's quicker than washing and drying what little hair I have.
Next week I have made an appointment to see my oncologist, since nobody else saw fit to plan one. Part of me wants to just forget about it, carry on as I am feeling good and pottering about. The sensible part says, you made the decision to have chemo and see if it shrinks the tumours, so see it through, don't be a quitter. Although I wouldn't say I have anything resembling an appetite, I have forced myself to be aware of times when I think I could eat something, outside of mealtimes. So far, although I put on a few pounds over Christmas (cheese and chocolate) which have gone again, I've stayed level at around 130lbs (59kg, 9st 4lbs). Chemo isn't going to control me this time and there was talk of putting me on Neupogen straight away to keep my white cells up, hopefully stop any delays in finishing and just crack on with it, get it out of the way. I don't know if I'll have a scan after 3 doses, making it halfway through, given my long break. I hope so. I'd really like to know if there's been any change.
The biggest change has been inside my head. I'm so grateful for any time spent with friends and family, but I'm not impatient to see anyone. I'm quite content being at home and have got some kind of loose routine - don't stay in bed later than 10 (usually up till 2am reading or watching TV) get dressed at least half the week, put make up on if I go out, even if only to the surgery. Yoga every day if possible, unless I'm walking a lot, no more than 2 days off regardless of how tired I am. Sometimes I just do a routine for bedtime yoga which is very sedate but those stretches ARE making a difference, I can feel it in my legs particularly. I've made the decision to quit my job when my sick pay ends. My GP discussed this too - making sure I am not missing out on anything, but as I told him, my employer isn't nice, he only gives me the minimum legal requirement of £79.15 a week and no more. My last company paid full pay for 6 months, half pay for the rest of my time off - for 14 months in total, with a slow return to work planned by a third party at my pace and subsidised with the half pay still, regular review on how I was coping. I don't feel I owe my current boss a thing. He has no compassion and I have lost all respect for him. There is no way on this earth I shall sit in that showroom office alone, just to make his life easier. There isn't any hot water on the premises yet, though he did buy a hot water heater it never got fitted. The breakthrough pain caused by sitting upright in an office chair is reason enough never to work in an office again. This will affect my income but I'll sell my house for a smaller one when the time comes if things become too hard. I might even sell it, put things in storage and go travelling for a few weeks after chemo, who knows. I'm in the enviable position of having 60% equity and a very saleable detached house overlooking fields so I think it will sell quickly. But for now, I love the peace, the huge living room and my conservatory.
So that's what I've been up to, doesn't sound like a lot, but then it's only been a month since surgery hasn't it?
I hope my fellow blog friends are improving, healing (Carole), or at least managing to get through (Tony being on Irene). Sorry I've been quiet, it was really just because I've been busy doing stuff, but I do like to keep a record for myself - it helps to read back over what's happened just to see how well I've done or remind myself things will get better again in the bad patches.
Happy 2011
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