Hello and thanks for your letter. Tom our eldest wanted to know why his Dad needs to have this drastic surgery if the cancer looks nuked on the scan. Phil had an appointment with the surgeon on Monday so I asked him Tom's question first. Surprisingly he alerted us to a clinical trial that is being conducted from the Royal Marsden hospital London. It's called 'Watch and Wait' deferring surgery and scanning regularly and doing a sigmoidoscopy. It lasts for ten years and surgery is given if there is any evidence of cancer activity. The surgeon says it is not policy to suggest a patient for a trial but he would be happy to refer Phil if he wants to go on it. Its a few years in and there is a good percentage of participants who are remaining well! Today Phil is going to see if he is suitable for it. I really hope he is because we are all dreading this operation for the physical mental and financial hardship it's going to bring. (no matter how positive and upbeat we are) I do wonder why nobody who works for Cancer Research didn't comment on my original post and alert me to the trial?

Well that's a plan.... and we all need a Plan!!  And one that doesn't involve drastic surgery, pain, stress and as you say financial hardship sounds like a pretty good plan too, so long as you have all the information to make a well-informed decision.  Keep us posted!!!!  Lorraine

I was thinking about you and Phil last night, Sue, while I was waiting for my quadruple dose of sleep remedy to kick in

The quality of the monitoring is SO IMPORTANT.  About two (I think) years after Ian went into remission with clear CT scans, the oncologist said too many CTs were dangerous and we accepted that - they involve so many x-ray images, of course there was an element of risk.  So the oncologist said Ian would be monitored by x-ray.  I was always scared the cancer would come back in Ian's liver rather than his lungs.  I asked if chest x-rays would be good enough.  I got put in my place fairly firmly that chest x-rays would show the liver - duhhh! I'm not a doctor, I'm a typist, I didn't actually know where the liver was....  But I accepted the word of the oncologist that chest x-rays would do the job.

Six monthly x-rays continued and they showed absolutely no return of cancer.  It was only Ian reporting unexplained discomfort in his back and feeling a bit unwell (plus his tumor markers being just above the normal range) that alerted oncology to the possible return of the cancer.  The x-ray in July last year was completely and utterly clear - no lung tumors showing and no lymph node mass showing.  But an urgent CT showed dozens!!! of small lung tumors and the para-aortic lymph node "mass" swollen with cancer measuring 2.8cm x 2.6cm.  Oncology then ceased relying on x-rays because they were useless at picking up Ian's relapsed cancer.

So, Sue, make absolutely sure that the tools used to "watch" while "waiting" are the best - the absolute best.  How I wish we had just paid privately for an annual CT scan.  How differently things would be now for Ian if the relapse had been picked up six, twelve, eighteen months sooner???

I don't ever want you to walk to my shoes or Phil to walk in Ian's shoes!!!!!!!!!!!!!!!

Lorraine

Dear Lorraine, I'm grateful for your support and your experienced advice. When Phil came home from work he'd changed his mind again. He feels 'blocked up' again and straight away thinks its the tumour growing back to life. He spoke in the afternoon with the colorectal nurse who had sat in with the surgeon on Monday and asked her about being referred for the trial, he asked how long he would have to wait for surgery if he wasn't accepted on the trial, she said two to three weeks. The trial is at the Royal Marsden and is being run by Dr Diana Tait. They use scans and a sigmoidoscopy. Later last night Tom rang and I told him in Phil's hearing that his Dad had got cold feet about the trial but when I ended the call Phil said "That was earlier, I've thought some more." He said the constipation could be stress induced. I Googled Dr Tait and found a number for her personal secretary so Phil is going to ring her. I'm going to show him your letter too though. He feels he is not being given as much information as he needs and thinks that is down to the NHS being so stretched. I wouldn't want to walk in your shoes Lorraine or Ians and not Phils. Cancer sucks. x

Just out in the kitchen by the computer to make a last cuppa for the day.  Yes, Sue, those two little words sum it all up:

     Cancer Sucks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lorraine

Swedes,

Just a few thoughts from me as I have only just seen your original post. Fifteen months ago I had stage 2 cancer in the rectum and I was also warned that I may have a temporary colostomy or even a permanent one. They never quite know how the operation will go until they are in there and so I went under the knife having had a site selected (with a nice purple felt tip) for the bag. My attitude was that it was either bag or box and I would much rather have a bag than end up in a box.

I like riding horses and I posted on a horse riding forum about the coming operation and posibility of a colostomy. I was surprised to get several replies saying that they had a permanent bag and were still riding competitively to a high level. Indeed one person said that having had the operation and the permanent bag had made her snap out of her ways and decide to really start riding with gusto. I also spoke to a friend with a bag and he said that he had got used to it now and couldn't be bothered to have the reversal operation.

In the event I was all sewn back up without a bag at all even though during the operation the tumour was found to be lower down in the rectum than expected and also the surgeon decided to take out 50% of my colon as well because the wall looked a bit odd.

I am sorry but the decision is quite clear for me. Get the tumour cut out.

Well he's now in posession of two new pairs of John Lewis pyjamas so he has to have the op. Fancy you didn't have to have a bag 'Fourlegsgood', not even a temporary one. Phil has been told that he will definitely have an iliostomy for a few months. He was advised by a fellow golfer (with a bag) to get a protective cover for his mattress because he will have accidents in the beginning. It's not a great place to be.

Another New Normal looming for you both Sue.  But like Fourlegsgood says, rather a bag than a box.  And I guarantee you that Ian would opt for a bag rather than be where he is right now.  Phil's friend is right to mention precautions for "accidents."  Newbie's Jan had such an accident one night.  It wasn't nice and was I suspect really upsetting for her as well as Newbie, but with her bag and a good dollop of remission they have had a trip to Spain and have now got their eyes on The Gambia.  The remission or even better a cure are the only things that truly matter..........

Lorraine

Hi.

As elkay has said my wife Jan had a colostomy and it was very distressing for her. We are still unsure whether it will be reversed, and even if they decide to try, whether it will be reversible. She will meet with her Digestive Diseases Consultant on 21st November to discuss this. We know of one person who, like Jan, had an emergency colonoscopy, went for a reversal and woke up to find the bag still in place. (there was too much scar tissue for a reversal to work.

So we are on the journey of deciding whether/how a permanent bag is liveable with.

At first Jan wanted to conceal it from me entirely. People in couples have differing levels of intimacy. For a while we couldn't shower together. be in the same room whilst bathing or undressing, or sleep together. Occasionaly Jan's dealing with her stoma would leave little "messages" on the bathroom floor. I decided to always mention this, after I had cleaned up, because I wanted her both to know it was OK and to be aware that she was missing things that other guests to our house might find harder to cope with.

We often shared bathwater. On one occasion my bath was a little less relaxed than it might have been because of the deitrus fromm Janet's leaking Stoma. It wasn't a major issue but I shared the experience with Janet. She now runs me a fresh bath when she's finished.

On one occasion I woke at 4.00 am to find myself covered with leakage from Janet's stoma. By this time we had overcome the not sleeping together and the enforced celibacy that this involved. I took a shower, woke Janet who also took a shower, and we changed the sheets.

It's not the easiest thing in the world either for the person with the bag or for their partner.

I don't know if we're right but honesty between us has served us well. I don't pretend that Janet hasn't got a bag, and I don't pretend if it leaks or if she drops something when she changes it that it hasn't happened. I try to make it clear that it's OK but never try to pretend it hasn't happened.

I hope Janet gets a reversal. In some ways the presence of the bag makes her feel less attractive so less inclined to affectionate exchanges even when I'm not bothered by it.

I have to say that there are procedures I wouln't agree to for myself. so I maybe support your husband on this, but if you can reallistically reassure him about your ability to cope with his bag it may impact on his decision.

Best wishes and hoping it will be temporary,

Russ