Thursday, 17 December 2009
In other news...... I've joined the Cambridge University HDGC Research Project in the hope I can give something back and help others going through this. This will mainly involve filing in questionnaires based around quality of life and well being. The rest is a case of 'same old' really. The eating's going well, still discomfort and a little pain, but nothing major. My weight has levelled out and I'm not losing any more. It would be a miracle if I did though given that I never stop eating. I managed a Chinese takeaway the other night with friends. I didn't have much and steered clear of the hot stuff to avoid a 'turbo lax' effect (one for Dumb & Dumber fans) and it went down well. Even managed half a glass of wine in very small sips, which also was uneventful! Energy levels are steadily rising which comes in handy when you have a Duracell charged 2 year old running around.
So, the pathology results have certainly assured me I made the right decision. Not that I needed assuring, but some people did say "Why are you having the op so soon, why not wait a while?", doctors included. Hopefully anyone reading this with a CDH1 mutation and a stomach will be encouraged to have the TG and give them self every chance of survival.
Tuesday, 1 December 2009
Although my diet is still not very adventurous, I am becoming a little more daring with food and are yet to suffer badly as a result. I had avoided anything sweet, but I've introduced shortbread biscuits, carrot cake and ginger cake, mmmm cake. I'm not gaining weight yet, but I'm confident that I will soon if I remember to snack! Seriously, that's all I do, eat, drink and visit the loo (bathroom, for my friends across the pond!). I think I might move the fridge to the bathroom? Got to be better than moving the loo to the kitchen. For those interested, all is still ok in that department by the way! Most meals and snacks still cause discomfort, but I'm learning to minimise this by not overdoing it and sitting still for half an hour or so afterwards.
I'm now a qualified junkie! I've had 5 build up injections of vitamin B12, 4 of which I did myself under supervision from the nurse. She says I'm a natural, which I could take as an insult, but I see what she means I suppose. I inject my thigh with the solution which is easy as pie. The hardest bit will be picking my wife up off the floor when she sees me do it at home. From now on these will be every 12 weeks, so fairly infrequent. I'm booked in for the flu and swine flu jabs later this week along with most of the pensioners in my local area. Although I'm not really in any of the 'at risk' groups, the nurse thinks it would be sensible until my diet is sufficient to rebuild my immune system.
The wound has healed well and has turned a deep red colour. It's still a little sore at times, but not bad at all. My stomach muscles around the wound are quite sore, so I guess they're healing. My energy levels are improving, but I do still tire quickly. I ventured out to the football on Saturday with my pal Dan which went well. I chose to wear my entire wardrobe as it was freekin freezing out and went armed with snacks. It was really strange watching the game sober, and quite depressing at times. I did forget myself and jump up when the second goal went in and nearly detached my esophagus from my bowel, really, it hurt. It won't happen again, not because I'll remember, because we won't score 2 goals in a game again for a long time.
Thanks again for all of the well wishes, cards and presents, I didn't realise I know that many people. My boss called round with cards and presents from colleagues following a collection they had, thanks to all, really kind of you. One of the presents was the game Operation, made me laugh! I don't know why my surgeon took so long, I can do a total gastrectamy in 10 seconds without the buzzer going off! I'm off to see him next week so I'll pass on some tips. I'll keep you posted on what he tells me.
Despite feeling quite good, it's now sunk in that it's going to be a long slow process to getting 'well' again. Without doubt, low energy levels are going to be the main battle. I'll get there though.
Thanks for reading.
Monday, 16 November 2009
The diet plan is quite simple. I eat all main meals with Nic and Mikey, albeit smaller portions (often less than Mikey and he's 2, how sad!) This is working well, I'm eating a wide range of food from healthy home made stuff to frozen convenience food, all of which goes down well but does often cause discomfort for a while afterwards. I've only had one instance where I was in a lot of pain after eating and dam it hurt like hell. Between main meals I snack every couple of hours and drink full fat milk based drinks. So, to my work colleagues reading this, I fully intend maintaining my reputation as the 'human dustbin'! The hardest part is stopping eating when you really want to carry on and not guzzling loads of water (or wine or beer) especially not whilst eating. I'm getting used to it though, although I am developing a thirst for a pint of Yorkshire's finest real ale (or half!).
Mentally I'm up for the challenge of the road ahead, it's a massive change to my life and has had a big affect on Nic and Mikey too. Mikey tells everyone that Daddy's had an operation to take his tummy out, but soon forgets and jumps on me in the hope we can wrestle. Won't be long and we'll be back to trashing the living room shouting 'Submit!' I'm working on some new moves! It's certainly not been a breeze so far, and I'm under no illusions that at times it will get really tough, but I'm over the moon with my recovery so far. I can't thank everyone enough for their support, none less than Nic and my Mum an Dad, they've been through more than enough this last year without having to worry about me. On target for another half marathon next year? I'll answer that after Christmas!
Monday, 9 November 2009
Saturday, 7 November 2009
Thursday, 5 November 2009
Thursday, 29 October 2009
After peer pressure from friends and colleagues I'm having a first attempt at blogging, please forgive my lack of experience here.
So what's going on? In 4 days time I'm having my stomach removed, but I'm told I'm a picture of health at 31, what!. Along with the rest of my clan I began genetic testing in July this year following the diagnosis of stomach cancer for my mum and uncle in 2008 who both in turn lost their mum and grandmother to stomach/breast cancer. Mum has survived, but sadly my uncle Malcolm died in August this year. I'm no expert, but it looks like there's something genetic here.
So on 09/09/09 I got my results. I should have known the outcome with a date like that, yes you guessed it, I'm a carrier of the rogue CDH1 gene. Along with another uncle (Paul) I've had to decide whether I want to ignore this news, or act on something that will almost certainly finish me off. It's a no brainer really, you just got to do it. I must admit, I expected to have to carry out the op myself or visit the local butcher if I wanted it doing soon. But, to my amazement there isn't a waiting list as such and in less that 2 months from being told I'm a carrier I'll be having the op at the Royal Hallamshire in Sheffield along with my Uncle Paul.
So that's how I got here. I'll call that time for my fist post, I have 4 days to eat like a king and try and avoid my already slim build dwindling to that of a racing snake!