Meet Clare..

When were you diagnosed and what with:

I was diagnosed in February 2106 with rectal cancer.

How did you find out you had cancer?

By the end of last year I had become aware that my bowel habits were unusual.  I also realised that I was probably quite anaemic so in early January I booked an appointment to see my GP.  She organised for me to have a blood test that showed that I was indeed extremely anaemic so within 10 days I was seeing a consultant who referred me for an urgent endoscopy and colonoscopy.   During these investigations the doctor found that I had hundreds of polyps - too many to be taken out there and then.  He told me he was concerned about one polyp in particular, which was significantly larger than the others.  The doctor told me he had taken a biopsy of the polyp and referred me for more blood tests, along with CT and MRI scans.  My MRI was organised pretty quickly.  However there had been a few hiccups scheduling my CT scan.  It was finally brought forward and I was also booked in for a gastroscopy around the same time. 

When I arrived for that I sensed that I was perhaps a special case, as it seemed like they wanted one gastroenterologist in particular to perform it.   Before I was due to go through he came to see me and asked me if I had any idea about what was going on which of course I didn't.  He apologised and told me that in usual circumstances a nurse would have been in touch but that she had had a family bereavement in the last few weeks.    He then explained that they were 99% certain that I had a genetic condition called Familial Adenomatous Polyposis (FAP) and that the appointment letter I had received a couple of weeks beforehand was for the purposes of meeting with him and a genetics counsellor to discuss the implications of that.  When I asked about the “bigger polyp” he replied that we would discuss that later with my friend who was collecting me.  And so it was a couple of hours later that he gently explained that the polyp was in fact a tumour.

What did you think and feel when you were diagnosed?

In a strange sort of way it was a relief.  Once I had become aware of all my symptoms I had begun to suspect it was cancer.  I definitely felt shocked but also strangely calm. I finally I had an explanation for all my symptoms. I also wanted to get going with whatever treatment I needed so I could get on with my life.

How did the people around you react?

My family and friends have been great, but initially it was probably with a sense of shock. I've always been a really fit, active person and this diagnosis just seemed to come out of the blue.   I want to protect my elderly father as much as possible so I filter how much I tell him. My friends have been fantastic and very supportive. I live on my own but a WhatsApp group has been set up by one of my friends where people take it in turns to come for treatments with me and also to come round and cook and stay over for the night after and during treatments. 

What treatment did you have?

I had 5 weeks of chemo (in tablet form) and radiotherapy during the spring.  Unfortunately the tumour didn't respond as much as was hoped.  We need my tumour to shrink more so it is safe for the surgeons to go in and operate to remove it so I am currently in the middle of IV chemotherapy.  I've been referred to the Royal Marsden for my surgery and am due to see them in mid-Jan.  Eventually the hope is that I will have a panproctocolectomy.  Because of my genetic condition the cancer will always attack the colon so I will have to have a permanent colostomy bag.

How did you feel through treatment?

I found my initial treatment quite challenging. I developed a kidney infection so I was in quite a lot of pain before that was diagnosed and treated. Through this latest bout of chemotherapy I've felt very tired and at times quite sick. However, I had a blood transfusion just over a month ago which has helped my tiredness greatly and the extra anti-sickness drugs seem to work very well.  On the other hand I'm beginning to suffer the side effects of peripheral neuropathy in my hands and feet so I am adjusting to that just now.  Generally I think physically I've been able to cope and deal with the side effects quite well because I was fit and active before treatment began and I've gone back to light training again now. This also really helps me psychologically.

What happened after treatment finished?

Treatment is ongoing.

How did you get involved with Shine?

I visit the wonderful Maggie's Centre up at Charing Cross Hospital and heard about Shine through them.

What difference has Shine made to you?

It's been fantastic to reach out to people who truly understand what you are going through. As much as family and friends have been great, no one really understands unless they've been through similar experiences.

What's been the biggest change you've faced?

I suppose I am still processing the experience but I've realised that I find human interaction and understanding really important and supportive.   I'm also aware that I'm quite determined and have more of an inner strength than I knew.  The biggest change is the lack of structure in my life and the uncertainty especially out of treatment time.

If you could give yourself one piece of advice before your diagnosis what would it be?

First of all I'd say listen to your body. It really does speak to you when it's not functioning normally.  I'd also say don't worry so much about the little things so much and also to live in the moment as much as possible, do things that make you happy rather than worry about everyone else so much.