The Ann Edgar Charitable Trust
NEUROENDOCRINE TUMOUR SUPPORT
December 2010 - My Story by Ann Edgar
On 30th November 2005, it was confirmed, after almost a year of visits to the doctor and many tests etc., that I had a rare form of cancer, Carcinoid Syndrome.
The rarity comes from the fact that only 1,200 a year in the UK are diagnosed with it, compared with breast/lung cancer where in excess of 35,000 for each type are diagnosed yearly.
It is difficult to explain, and it is not known where it comes from, although research says that it can be ‘familial’. But having been adopted, at the age of 3 months, and having little contact with my natural mother, it wasn’t possible to ask questions.
It is difficult to diagnose too, because the symptoms can often be confused with Crohn’s disease, Coeliac disease (intolerance to wheat), or simply Irritable Bowel Syndrome. It takes a sharp cookie to determine what other illnesses could be potential matches, and thankfully a young consultant spotted a pattern and decided to do a test (which involved collecting urine for 24 hours! Delightful!).
Thankfully he hit the nail on the head!
This cancer is also known as the ‘Silent Cancer’ because you don’t know you have it, and some people never know they have it. It is also a cancer that is seen as being ‘good looking’ in some cases, no it doesn’t make you beautiful, you just don’t look like a cancer ‘sufferer’. Those that deal with it say that if you had to choose a cancer to have you’d choose this one. When carcinoid symptoms start to show, it is normally the case that the disease has spread and that you have ‘secondaries’. On the day they confirmed it, they hoped the CT scan they undertook, would show it on my lung or appendix. With no appendix, they hoped it was on my lung and they would go in and cut it out within 24 hours.
Their worst fears were confirmed – it was on my liver. In most normal forms of cancers, that is seriously bad news, and you literally have weeks to live. I am very fortunate, carcinoid is not an aggressive form of cancer, it grows at an extremely slow rate and with good care and attention people can survive for many years. They also cannot tell you how long you have ‘left’, I did ask, straight up front. That is because there is not enough data on it, because it’s so rare and because it’s in different places with everyone.
My liver is in a very poor state, resembling what the consultant describes as a ‘Christmas Pudding’, not shiny and bright and smooth. The bit that confuses them is that my liver biopsies show that I have normal liver function, normal blood tests and I can live a fairly active life. In some cases people have liver resections where chunks are cut out and the liver regenerates healthily. Basically they told me that day, that it was terminal and I would be given injections every 3-4 weeks to keep the symptoms at bay. Well, the type of injection they chose (1 of 2 types) did not work.
For about 18 months, I was being given palliative care, (care till I die), but I couldn’t accept that was all that could be done. I wanted to do something too! So I got on the internet and looked up everything I could find. I found that there was going to be a patient/doctor conference in America, they are big on this there, so I booked David, my partner, and myself onto it.
In September 2007 we went to Virginia in America and there I met 100’s of people from all over the world with Carcinoid Syndrome……..yippee!!!!!! I was able to speak to doctors and other patients and to cut a long story short, was advised to go back to the UK, see one of the top consultants in Europe (who was in London) and ask for the other type of medicine. I basically learned more in those 3 days than I had in 18 months. I was armed and ready for a fight!!!
So, in January 2008 I met with Dr Martin Caplin at the Royal Free Hospital in London, and after a 3 hour meeting with him, I was on a whole new path of treatment – now there were options! I no longer felt I was going to die soon, and I now thought of the illness as critical, not terminal.
I’d resolved I wasn’t going to die anyway, simply because I really believed that mental strength, a positive attitude and a strong sense of purpose could indeed help to keep progression at bay. I decided there and then I was not going to ‘’fight cancer’’ as people say – no, cancer would have to fight me……..and it bloody well would not be in charge!!!! AND, it still isn’t. One of the options the doctors offered me, and which I opted for, was to have a treatment called Yttrium 90, aka the ‘Magic Bullet’. Actually it’s an injection of radio active material …. and no I didn’t glow in the dark!!!
Basically I was injected via a drip for 20 minutes, you’re then in isolation over night. I had this 3 times, June, September 2008 and January 2009, where instead of doing it via a drip they injected it through a vein into my liver. I am pleased to say it was absolutely painless! Up the next day and away home.
An important aspect to add at this point, the doctors were amazed at how I coped and did say it’s partly my approach that they think helped me. People from all over the world with Carcinoid Syndrome have rung me or emailed to ask about my treatment and my outlook.
Its purpose of the treatment is to reduce the size of the bulky tumours (metastases) on the liver, shrink it and then stop the cancer growing. So far it was showing that it works.
The side effects of the treatment are a bit naff though. Bottom line, I lost 4 stone and was down to 7 stone in January 2009. I was very debilitated, just wanted to be on my own and to recover (basically no fuss). But I lost my appetite, often felt nauseous and slept most of the day. Now some 23 months later I am just under 9 stone, fitter and still very much of the view that I’m here to stay.
I had a CT scan in the summer, in London and saw my Consultant for the latest view of my condition. He said it had stopped growing and was likely to be that way for another 18 months, this was 18 months. My 23 month results are tomorrow.
The thing you have to understand is, in the space of 5 years I had 6 weeks off when I was diagnosed. The GPs decision not mine – in my mind I was ok to work, but she was insistent and just wanted me to take time to think.
I had 2 weeks off after the first 2 treatments then 4 after the last, as it was a bit more tiring. I have lived a normal life and I’ve worked mostly full time for the entire time. I, however, decided to do certain things:
I was not going to tell people (managed to keep this from 2000 staff at GNER, but those that needed to know did, but knew to just let me get on with things)
I would keep a positive outlook
I changed how I lived my life (although that wasn’t difficult)
I don’t drink alcohol … very much.
I can’t and don’t eat certain foods, because of the side effects ( you don’t really need that detail…yuk!)
I don’t get into detailed conversations with people who do know, about my health, because it is a negative subject
I don’t do ‘fighting cancer, living with cancer, cancer survivor’ stuff. It uses negative energy and gives the subject importance that it does not deserve.
I do get tired, so I sleep.
I do get pain, so I deal with it.
I do get depressed, but I can get out of that fairly quickly.
I get angry sometimes, but I find a way through that.
I absolutely do not allow anyone to feel sorry for me and if they do, I step back and don’t go near them for a while. When people find out, they always say “OMG that’s awful!” Well, maybe to them it is, but I just live my life and do almost as much as I could.
I can’t run marathons, or climb steep hills, but nothing much else stops me. Actually, I couldn’t have run a marathon when I hadn’t been diagnosed anyway! The important thing for me is that I am able to use the experience I have, to help others deal with challenges in their life, without them ever knowing I’m ill.
I’m still Ann, I think I’m just a better Ann, out of all of this.
I truly care about helping others to achieve, helping them to excel personally and professionally and to people who are close to me, knowing that in their times of need, I’m there for them.
So, a bit matter of fact written in this way, but to me, it’s just a load of facts.
If you’re interested and you haven’t actually dropped off from the boredom of reading this, then check out this website….all the gory details are there!!! www.carcinoid.org
There is a line in the film ‘’The Shawshank Redemption’’……..’’get busy living or get busy dying’’. Guess which one I chose?
Ann Margaret Edgar (nee Tallis)
15 March 1963 – 25 August 2011