Thursday, 17 December 2009

The results are in!

A belated post folks, still not cut out for this blogging business!  I had an appointment last week at the Royal Hallamshire to see the surgeon, Mr Wyman (think I've been misspelling his name on previous posts).  This appointment was primarily a progress check and to receive the results of the chopping and slicing they did on my stomach.  Results then, drum roll please.............. I had very early stage stomach cancer.  Yes, by definition I've had stomach cancer according to Mr Wyman.  They found six patches of stomach lining that they didn't like the look of, and further analysis showed early developments of tumours.  Lymph node testing indicates that this was early stage and localised to the stomach, so further treatment isn't required at this stage.  That said, they are not able to offer me any guarantees and I need to be monitored.  Right from the start of the genetic testing roller-coaster I've honestly felt lucky and never hard done by.  Now I feel like the luckiest guy in the world, they reckon that these patches were due to turn pretty nasty imminently,  so the testing has without doubt saved my life.  I'll never complain about our health system again, apart from the food, room for improvement and in need of Messrs Oliver and Ramsay!

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

So far so good!

I'm told that people actually read this with interest (you sad people),  so I thought I'd better give you another update, although it's much of the same really.  Tomorrow will be 1 month on from the op and I'm still waiting for it all to go wrong, no sickness, no goo, no dumping syndrome, what's going on!  Despite my boy passing on the Great Plague (man flu) to me,  I'm still doing really well and have learned a lot about how my new digestive system works and how to minimise pain and discomfort.

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

2 weeks on

Two weeks on from the op and I'd say I feel pretty good, or at least much better than I thought I'd feel at this stage.  The wound is healing well, the pain's under control, I'm keeping all my food down and most important of all.....I'm going to the loo! I'm much better on my feet and can have short walks although most activity knackers me out.  Unfortunately I've lost a stone in weight and it's going to be a battle to put some or all of that back on.

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

Food at Last!

A good day today! The surgeon visited this morning and said Paul and I could start eating and if all goes well we can go home tomorrow (tuesday), no pressure then! Taking on board all the advice i'd been given, i've successfully eaten 2 small meals without discomfort! So home it is then, really can't wait to see my son, missed him so much. My wife tells me he's telling everyone to 'rub my daddys tummy better'. The staff here at the Royal Hallamshire have been amazing throughout, i'm a lucky guy.

Saturday, 7 November 2009

The tubes are out!

5 full days after the op and all the tubes are out, what a relief, they were driving me crazy. We're told by the surgeon and other docs that we are on schedule for a speedy recovery. We're on free fluids so can drink more water and the occassional cup of tea. Our pain relief is in tablet form and although i was unsure about how my new system would deal with them, all seems ok though. There's some really strange pains and feeling in my gut but i'm told these are normal. Tomorrow's another step closer!

Thursday, 5 November 2009

I'm now stomachless

Well i had the op on Monday morning and i reckon i'm in good enough shape now to battle with my phone in trying to update my blog. To be honest i've felt good the whole time, the waiting around on Sunday was the hardest part, boredem and being surrounded by very ill people does nothing for pre-op nerves! Uncle Paul and I were the sole focus of the surgeon Mr Whyman and his team the whole day and both ops went well without complication (other than my epidural not working but was soon fixed). After a short spell in the HDU we returned to the ward piped up to several machines for drips and monitoring 'stuff'. Pain is controlled by epidural which is doing the trick although we are being weened off it slowly. We are now 3 full days on and hopefully we will start reducing the number of tubes soon and start introducing some soft foods (we're starving!) A big thank you to all you amazing people that got in touch with words of encouragment and best wishes, you really did give me the boost i needed to drag myself to the hospital last Sunday. I'll provide better updates when i have my laptop and a real keyboard rather than a miniture Nokia one!

Thursday, 29 October 2009

What's going on?

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!