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.

2008 Jan 27th - Joining the Gym

I've had a busy few days lately and that includes joining the gym. I've got sixteen months for the price of 12 and no joining fees so I figure while I've got some money, why not! I need to get out of the house and get into some sort of routine and I desperately need to get strong again. My muscles have wasted away so badly that I could only manage four minutes on the bike for the fitness test and my legs were aching and wobbly most of the afternoon and evening and I was so tired after just that and a few sit ups! Mind you I did have a rotten head cold at the time.

My lung function and BMI are fine, needless to say my muscle strength and everything else is rotten including my body fat ratio. Still, not much point going if it's all good is there! At least I'll get to see how much I've improved in a few months.

I've got a few more appointments for February now:

6th Feb - scan to check there are no new tumours (small sentence, BIG DEAL)
11th Feb - pre op checks (assuming no new tumours discovered else the op is off)
19th Feb - appointment with surgeon for a "visual" check on the joins and j-pouch
22nd Feb - surgery and a very UNtearful farewell to PTW

In the meantime I'm filling my days with gym appointments. I had to do my program plan in two sessions because of my cold - I nearly passed out after 5 minutes on a sit down bike and 5 minutes on the rower. I was just stood on the cross trainer and oooer missus I got the shakes and hot and cold sweats and had to go for a sit down. I had drunk nearly half my litre bottle of water by this point too so it wasn't dehydration.

I finished the plan off today with the trainer and went through which weight machines I can use to start with and she showed me some floor exercises to do - some with a giant ball - which will also help to strengthen my abs and legs since these are the weakest areas after lying around for the last year. I felt much better today and did a few lengths in the pool and too Phoenix with me - he persuaded me to sit in the spa which was GREAT! Never been in one before but it was lovely and warm and my hands and feet were much less "fizzy".

Despite having been out on Saturday night with Team Ferrer et al. I felt pretty good and had a very healthy salad with smoked salmon and feta cheese.

Monday I've booked in for a relaxation/toning class (all classes are included in membership) and Thursday for aquarobics in the evening and I'll do the gym on Tuesday, Friday and Sunday. It's a good set up because you can book any of the classes up to five days in advance and don't have to go to the same ones at the same time or even day so less chance of getting bored or missing anything.

I've got four weeks before surgery and I want to do something constructive. This year is all going to be about getting BETTER. Last year was killing cancer, this year I'm recovering from it. Unfortunately that means returning to work but I'm hoping that will be easier if I'm fitter before I go back.

I talked to my boss on Friday to make sure that going back part time was an option (they have to try to accommodate me, it's the law) so that's all sorted. I managed to have a chat with most people I wanted to see, those who haven't left at least! I got a lovely pep talk from G***** and a hug (that was the best bit) who's had way too much cancer and death in his family already and told me back in the days before Tyson was discovered that "cancer is going to be scared sh*tless when it realises who it's up against, it'll give up". He also told me I'm the only woman he knows who has bigger balls than him...............ahem. I hope he meant metaphorically and that my bag wasn't just a bit too full!

I'm off to bed now at a reasonable hour for a change - must get up in plenty of time so I'm not late for class tomorrow.

2008 Jan 19th - New Year, New Surgery!

19 Jan 2008

Where did the last month go? Category: Life Blimey, I knew I'd not been posting much lately but it's nigh on a whole month ago! So........what's been happening. Well Christmas was.......how can I put this....painful. Emotional. Glad it's over. I stupidly expected that after the last couple of years this one was the one I deserved and that everyone would be happy and it would be great. WRONG. I'll never learn, always build it up to something that it can never be. New Year's Eve was better (see photos) but by 'eck did those tears make themseslves known come midnight. I got through Auld Lang Syne and that was it, flood gates opened. Yes I do hope I have a great year, but I know that there is no magic wand that gets waved at the stroke of midnight to wipe all the fear and worry and current family troubles away. I'm being a bit grumpy about it, actually the night was great. I was with people who cared about me and who I care about and I ate too much and drank even more, even managed to throw a few shapes on the dancefloor. This was despite the horrid painful feet and toes (yeah cheers for that chemo). I only managed one song at a time then had to sit down for two or three, but alcohol did numb it a fair bit. Good old G&T eh? So this year is the final stage of treatment, hopefully. Always with the hopefully, nothing is ever concrete is it? Last week I saw my life saving surgeon who said how much better I was looking and what a difference he could see in me (yeah finishing chemo, amazing what it does for you). He's on hols in March so it was either third week in March......or third week in Feb............no brainer! Surgery is now booked for 22nd February. I don't have to go in the night before and be stabbed to death or starved first, just roll up mid morning and then a short five day stay. He went through the usual risks involved and possible complications and that he may need to open up the whole ten inch wound again if there is scar tissue or adhesions but otherwise, just a two inch scar. I can't wait..........oh hang on........then I get so sit on the loo for hours at a time and my radiated butt already suffers when it's having a clear out of mucous from my colon. Lord knows what sort of pain I'm in for with diarrhoea. I've seen and felt the pain of macerated skin on my tummy (only yesterday in fact) with diarrhoea from my stoma. Eek. Still, means to an end and all that. I'm being spurred on by the upcoming joy of being able to wear anything I want and not worry about leaks all down my front. Faerie, I'm thinking visit to Mancland and a shopping frenzy, what do you reckon? At least I can "nappy up" down there and it's a bit less obvious than a swelling bag when I've eaten onions or been drinking anything fizzy. I'm doing pelvic floor excercises as I write. Less than five weeks to go now! I have a huge stock of skin barrier wipes which I'm hoping will make things a little more bearable. I saw my GP this week and got another type of anti-depressant to add to my rattling stock of drugs. I'm on SSRIs for depression and now tricyclics which he hopes will stop me feeling the pain of the nerve damage which HOPEFULLY (that bloody word again) will be cured by the Pyridoxine. Oh and I confessed he was right about the HRT, I'm doing great on it. I don't know if it's finishing chemo or the HRT or a combination of the two but my hair has gone from straw to soft and silky feeling again. I still have patches of what looks like cradle cap but I can live with that. The only problem being that when I scratch it, because the ends of my fingers are dead as dodos I scratch harder and make it bleed. I've discovered just how damaged my nether regions are by the evil radiation (I say evil, I know it shrunk the tumours and I know it may have prevented a recurrence but by god it's a price to pay). Again there is hope that it may improve, but no guarantees. I saw the Lone Ranger too, my 6 week post chemo check up. Discussed the nerve damage, yeah yeah, hopefully it will be gone, may take a year.........yadda yadda. I'm to have a CEA test (oh and FBC, Us and Es too obviously) every three months and see them for results every three months for the first year, then every six months...........til I get cancer again........doh I mean til I'm five years clear! I told him about the surgery and he was surprised no one has already arranged a scan (they don't really want me having surgery only to find out later I have more cancer and have to go through the whole sorry process again) so he's trying to rush one through in the next three weeks or so. Trying not to think about that. I've been pushing myself a bit too much I think, visiting friends and family all over the country.......well the furthest was Derby but it's a long way for me! I'm now laid up in bed feeling shattered with a thick foggy head, sore and glandy throat and aches and pains. Of course it could just be dehydration, my tongue is constantly cracked like a dry riverbed and I know I'm not drinking enough, I just forget now I'm busy flitting about here there and everywhere. So bed it is this weekend, no visits or visitors, just me and the Skittles curled up in bed (on the bed in his case on the proviso he does NOT wee on it again EVER). Has any one else fallen in to the "yeay chemo is over, lets try and do all the things we couldn't do the last six months all in a few days" trap? Yesterday I went, with Umpa, to have a tour of the local gym with a view to joining for some kind of social life and for me to build up my fitness again, before and after surgery. I was knackered, my throat was sore, I ached and felt lousy but pushed myself (and the poor Umpa) to visit DIY stores YET again to look at lighting for the living room and then went back later to buy some. Why? I've not even got the living room ceiling paper off yet, it's months away from being ready for the lights to be changed but because I CAN I wanted to do it. I'd have been so much better off in bed, resting. Better late than never, I'm off for a snooze now, nanight xxxx