Nellie

Well, I've never written a blog before so have no idea what to do. I thought I would join this website and try to find someone with a similar type of cancer to mine. I have Neuroendocrine cancer (NET), probably originating in the Pancreas but found by ultrasound scanning of my stomach which revealed lots of tumours in my liver. I had been losing lots of weight and had diarrhoea so went to the doctor for further investigation. They thought it was IBS at first but finally in Aug/Sept 2006 they found the tumours. My GP had no idea about this type of cancer and told me I had only a very short time to live - once in liver there is not much they can do apparently. Anyhow, my hushand did some brillant research, once they had identified exactly the type of cancer, and found me the best consultant who luckily for us is based at the Royal Free Hospital in London (we live in Oxfordshire, so not too far away). He agreed to see me within about 2 weeks. He was very reassuring and told me how slow growing and rare this type of cancer is and they decided to treat it with a new type of Chemo. I had the first Chemo in London and it was really awful - I looked in the mirror one morning and didn't recognise myself - I looked like a very old lady! After my next chemo session, I woke up one morning in escruciating pain and was rushed to hospital - don't remember anything much after that but it turned out that the chemo had caused a duodenal ulcer which had ruptured. I had surgery that night and the surgeon didn't expect me to survive. However I did!!!! This was all just before Christmas 2006 and I was in hospital for about 3 weeks. I've got a lovely railway track up my stomach but that's nothing. Of course that doesn't help with the cancer problems as the operation means I now need to be on pain-killers all the time but its nothing in the grand scheme of things. We went on a lovely holiday to Tobago in April 2007 and I really started to recover. Since then I have had some other treatment, targetted radiotherapy, where I am made radio-active for 24hrs and its supposed to kill of the tumour cells - this has been quite successful and has reduced the size of some of my larger tumours but is not very nice treatment, nothing like chemo however. I have had a period of being clinically 'stable' and am hopefully going to start on some more of the radio-therapy treatment soon. I find it all very difficult, I know that I will die from the cancer eventually but have absolutely no idea of time scale. Mylittle boy knows I have cancer but not the expected outcome. He's 8 and really great - he has seemed to take it remarkably well but we are open with him about it and have only held back on the 'terminal' word. My husband has a lot to bear. He works from home and can't get away from it. As I am quite up and down with my health he has to pick up the pieces and fill in the gaps when I can't do stuff. He gets quite angry - not with me I think - but frustrated with the situation. He doesn't easily talk to people and doesn't want sympathy so is reluctant to tell people. I do tell people and found most friends very supportive, some have dropped away completely. Our life is odd though, I generally can't do out in the evening as I'm too tired, I can't do physical stuff so people who don't know about the cancer must think we are very strange. We moved house last summer, that was hard work and we are settling in. But .... probably a big mistake, too much garden and I think we should have made our lives simpler not more complicated but we thought it would be lovely for our little boy. We got a puppy for him too - another big mistake because guess who has to do all the work - my husband of course as I'm not up to long dog walks. Anyway that's my history. I have been feeling really grim since mid-January - liver problem - but am taking steroids which have sorted out the pain. Steroids are horrible, goodness knows why athletes take them, I feel my heart is racing and I am shaking all over, still nearly finished the course now. I'm beginning to feel MUCH better and have some energy and some appetite. The sun is shining today and the first daffodil is out in the garden. I do see a light at the end of the tunnel and there is much to be thankful for. Staying positive is difficult but better than sinking to the depths. My friends are so kind - one called round the other day with a basket of lovely food she had cooked as I was moaning about how difficult I was finding it to eat. That was a really touching thing and I really appreciated it.