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?

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 shaped 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 up 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.

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 Unhappy 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.