Patient Stories – Denise (and others)
Denise McCallum
I had been backwards and forwards to the doctors for two years with very vague bowel problems. I was diagnosed with IBS and sent home with tablets which made me throw up. My blood sugar levels seemed to drop on an afternoon too , but I’d been repeatedly checked for diabetes and I was starting to believe my problems were in my head. Over Christmas 2000 I had an episode of black stools and went to the GP in the January 2001 and he organised a colonoscopy which showed nothing. My symptoms continued but after a couple of really bad pain episodes another GP said it could be my gall bladder and sent me for an ultrasound and the tumours in my liver were very visible on there. It took a further 15 week before they eventually sent me for a biopsy as all results up to then were inconclusive and they really couldn’t understand how I looked so well despite my liver being such a mess as the doctor put it.
I’d scoured the internet and realised that I really didn’t have much time left and spent the day of my biopsy 11/09/2001 watching the news while lying flat on my back and saying to myself that whatever the results of the biopsy I would at least have time to sort some things out and say goodbye to my family. A week later I got the results and began my journey with carcinoid. The doctor who handed me the diagnosis had been the same one who had done my colonoscopy and he was most apologetic as he hadn’t checked the small bowel because of my age. I was 33 with 3 children, the youngest one born with cerebral palsy and newly diagnosed with carcinoid.
In some ways this was a blessing, I gave up work, I was working self employed 80-90 hours a week and hating every minute of it, but work was no longer important. I was quite upset that despite having cancer I still continued to put weight on.
I have had 5 embolisations, 2 bowel resections and a liver resection in the following 6 years. I have now gone back to work part time and doing it for enjoyment. I have carcinoid in my liver, small bowel and breasts but despite this journey being a rollercoaster at times, I try and remain as active and positive as I can.
Carmen Mollison’s Story
I am a very grateful patient, or should I say one of the lucky ones.
I am writing my story because I am so grateful to the wonderful NET team at the Royal Free Hospital (RFH).
I was diagnosed with neuroendocrine tumour (NET) after various tests. I was admitted to the RFH on the 17th November 2006 and discharged on the 29th November 2006, to have all these tests completed.
After a long period of diarrhoea, up to 16 times per day, flushing and peripheral oedema, lower back pain particularly at nights, my problem was diagnosed as bowel carcinoid with liver metastases.
I cannot thank them enough because if it hadn’t been for the team I would not be here now to write my story. I was in such a dark hole not knowing what was wrong and Dr Caplin and his great team was able to take me out of that dark hole. Immediately I was started on sub cut octreotide 3 times a day and then Sandostatin LAR every month which changed my quality of life.
I was also diagnosed with carcinoid heart disease and hypertension. I had lost a lot of weight.
I was told that my carcinoid heart disease needed to be dealt with before the rest of my tumours as it was serious. I was referred to the Harefield hospital where I saw a heart specialist and an operation was organized to repair my damaged heart valves.
These had been damaged by the hormones that are released by the tumours.
I was admitted to the Harefield hospital on 11th March 2008 and operated on.
It was a very successful operation and 5 months on I am enjoying a new lease of life. I eat much better than I used to and I am feeling so much better – like being reborn……..
I have been told that the worse is over and that now they can start working on my tumours.
I am very happy with the way that things are progressing at the moment. I am still in the healing process of my heart operation as it was a major operation.
Every day I wake up and see the changes in myself, I am so grateful to the wonderful team at the RFH.
Thank you to Dr Caplin, Dr Toumpanakis, Dr Patch, Dr Devar, Dr Sanjeev, and the fabulous NET nurse Philippa Davies.
Also thanks to my local doctor named Dr Smith.
The Royal Free has some wonderful people waiting there to help you – they truly believe that cancer can be treated and don’t stop trying.
That is a great inspiration to me.
Catherine Logan – Patient
Former New Seeker singer Catherine Logan travelled the world during her celebrity singing career. Now, after being diagnosed with neuroendocrine tumours, she says enjoying the simple things in life can provide the greatest pleasure… Read More»
Andrew’s Story – Patient
At 33 I never imagined calling an ambulance for myself; what could
be giving so much pain? I had woken at 5am as if someone had shot
me. I’d been experiencing… Read More»
Cathy’s Story – Patient
I shall never forget the look on the physician’s face when he took my hand and told me that abnormalities on my liver were malignant… Read More»
Bob’s Story – Patient and Family
Bob Moon was first treated for a neuroendocrine tumour some 25 years ago. He has gone on to have treatment for another form of cancer and tests for a third.
But today, 59 year old Bob… Read More»
Pat Moon – Partner Story
Partners of NET patients need support and understanding too. Pat Moon explains the roller coaster ride of having to accept… Read More»
Carole Way – Patient
My problems began in August 2001.
I had just returned from holiday when I experienced severe rectal bleeding.
After a home visit from my GP… Read More»
David Tew – Patient Story
Dave Tew, 53, is a former West Country bike cop. His job involved shift work and stress, and in the 1990s he began suffering from bowel… Read More»
Lynns
I’m a Nursery Nurse at a local primary school and I live with my husband and 2 young children aged 6 and 8 in Perthshire.
I was diagnosed at aged 31 and am now 33.Read More»
