After the gastrectomy

Thursday 11 February, 2010 by Jay

Several people have suggested that I ought to pass on my experiences from having stomach cancer in the hope that it may help others.

I don't know what the survival rate is now but I know when I was diagnosed it was very poor. Also at that time there was absolutely nowhere we could get help or information.

I hope it will give you an insight into the ongoing effects of a partial gastrectomy from someone who's survived the operation.

In 1996 I went to my local surgery for a repeat prescription only to find a new doctor there. I'd been being treated for what was variously described as acid indigestion, reflux, peptic ulcer and even hiatus hernia, firstly in the UK and then since 1992 in Australia.

This new doctor explained that he wanted to check a few details before writing the script. One of his questions was 'when had I last had an endoscopy?' and was amazed when I said I'd never had one, or any tests. He said that he'd like me to have an endoscopy to make sure the medication was the right one for my condition.

I must admit I argued vehemently that it was a waste of time and money as I had always had an acid problem, having suffered with migraines since early childhood. His ultimatum was 'have the test or find a new doctor'!

So a few weeks later I had the endoscopy, which revealed a stomach ulcer and I was given a course of treatment while a biopsy was carried out. A few days later I received a call from the hospital saying I'd missed my check-up appointment so would I go in to the clinic the next day? I had no inkling that it was anything other than a normal follow-up until I got the diagnosis of stomach cancer and the information that I would need surgery.

On my mother's side of the family I had lost 5 of my uncles to different types of cancer and my father had died of bladder cancer in 1988 - so not good news.

I've heard other people, on being diagnosed with cancer, say that they went into denial but all I can recall is walking back to my workplace and the whole way repeatedly saying to myself "I am no different than when I walked to the hospital".

The next day I had an appointment with the surgeon. He went over what was involved and he was excellent in explaining all the pros and cons (I wanted to know the whole truth!!) and he honestly told me my chances of a long term survival weren't good and that I would probably require chemo or radiotherapy after the operation or it might be a case of open up and close without further surgery. I was sent for x-rays, blood tests etc.

In one way I was extremely lucky as I worked for a Carer Support & Respite Agency and the Co-ordinator asked me if I wanted to take the time off until my operation but I preferred to carry on working. She also asked if I wanted my condition kept a secret, as obviously people would ask where I was once I was admitted.

My thoughts were that it's the word 'Cancer' that immediately strikes fear so I didn't mind our Carers knowing, because the more the word Cancer was used the less frightening it became to me. It was then just another word.

Well I couldn't have asked for better support. Nearly every day I got Good Luck messages and sometimes at night when I couldn't sleep I would count the number of people that had contacted me that day.

Naturally there were black times when I found it hard to keep from crying (such as writing a farewell message to our son who was on holiday in the UK in case I didn't make it) but my surgeon told me that the most important thing was keeping a positive attitude.

On the morning of my operation, June 12 1996, the surgeon came in and asked if I was feeling positive. I showed him the book I was reading and told him it was Book 1 of a series of 12 so was that positive enough? After the operation he said they'd removed approximately three quarters of the stomach and made a 'new' stomach from the duodenum.

Being a teaching hospital I had been asked on admission if I minded having a student sitting in on the doctor's daily visits and at the first visit. Before the operation the whole group had crowded into my room.

I had admired the colourful tie one young man had and the surgeon selected him to be my student. Then came the days of waiting until the biopsy results came through but each day my student would turn up in a different tie - there were elephants, horses, frogs and he revealed that he was begging and borrowing ties from all the other students so we had a new fun subject each day!

Then one morning the surgeon turned up with all his group and told me that clear tissue had been found all round the cancer - so they had got it all and I wouldn't require chemo or radiotherapy. I can still remember the hugs and happiness of them all. My surgeon told me afterwards that he'd bought them all in because he wanted them to know that sometimes the news was good.

It's funny how different people reacted to this news. There were those who could appreciate that loosing a big part of your stomach would have an ongoing effect and others whose attitude was 'you're cured so what's your problem?'

In fact the problems were just starting. Firstly the Nutritionist assigned to help me through the initial stages admitted she had no idea what to suggest as she usually dealt with patients needing after treatment.

After consulting with others she gave me a recipe for a drink to coat the 'stomach' made up of full cream milk, cream, powdered milk and other things I can't recall. For a while I lived on this and tiny pieces of bread and butter, but as other things were added I started the 'dumping process' which for me included the sudden 'throwing up' of everything I'd just eaten and bouts of diarrhoea.

There was no rhyme or reason to it, what was OK one time would send me fleeing to the bathroom the next. When I went out (and I did manage to hold down my full-time job with the understanding of my work mates) life was a constant search to locate the nearest loo! Gradually my weight dropped from a pre-op 75 kilos to under 50 kilos.

My husband searched the Web looking for any research that was underway that might provide some answers but obviously not enough people survived stomach cancer to make it worthwhile. My Gastro-enterologist's blunt response was 'you're alive - live with it'.

The doctor at our local surgery (not the one who'd insisted on the endoscopy) told me that 'thousands of women would LOVE to be my size' - no comfort to me! The lady I was put in touch with at the Cancer Support group, another gastrectomy survivor, had the opposite problem to me. Unlike me she had lost the top part of her stomach and found that she 'only had to look at food for the kilos to pile on'.

One of my work colleagues was very much of the 'What's your problem?' brigade and would regularly make sarcastic comments when I needed to 'dash'. One day I asked her how she would feel if it had been an arm or leg I'd lost. She replied that it would be 'awful' so I then asked why, if she could have sympathy for someone who'd lost a limb, did she find it difficult to understand my problem?

Her odd reply was that you could see that a limb was missing but I looked OK! I then made it quite clear that I wasn't asking for her or anyone's sympathy just some understanding.

In 2002 I was getting severe pain from the stomach scar and was sent back to see my surgeon. When he heard what had been happening to me he was furious (to say the least) that I hadn't been sent back earlier as he could reoperate and, as he put it, re-arrange the pipe-work so the bile duct didn't enter at the top causing the acid dumping.

He said he'd done the Billroff 1 operation where the Billroff 2 would probably have been better but he didn't know that at the time of course. While I was waiting to have this done I kept a calendar of my dumping and it occurred 26 days out of 28. The second operation was carried out in 2002.

I'm not sure how much of what has since happened to me is related to my gastrectomy but I gradually lost all my teeth as they rotted away at the gums and my dentist said that if he didn't know different he'd have pegged me as a drug addict!

I have also had a total shoulder replacement and surgery on both hands for osteo-arthritis. After the hand surgery I had in 2000 when 3 bones were scraped and fused together that surgeon's comment was that from the state of my hand he'd have put me in my early to mid seventies - that was one month before my 60th birthday!

I used to laughingly say that I wasn't doing bad for a 75 year old drug addict but not many people got the joke!

I do still have sudden mad dashes to the toilet but luckily not so frequently and there are certain things I know I can't eat but the main thing that upsets me is the knowledge that, probably, if I had been sent back earlier I might have avoided some of the bad outcomes. Also doctors might not be telling me (and I quote) that 'my body is aging faster than I am', but I have no way of knowing if that is true either.

Anyway, 13 years later I am still here & back to 70 kilos.

If you or someone you know has stomach cancer, find out more about stomach cancer treatment. You may also like to call the Cancer Helpline on 13 11 20 and speak with a cancer nurse.

Updated: 11 Feb, 2010