Hello everyone,
I thought that it was about time I updated everyone. I started on my second line medication as I told you last time, Lenvatanib and Everolimus. Unfortunately this treatment did not work the tumours continued to grow and I suffered lots of side effects. A fistula developed between my bowel and the tumour and an area of the tumour started to bleed.
I already suffer from pernicious anaemia and the extra blood loss caused my real problems with me sleeping 23 hours a day, if I walked more than about ten yards I was close to collapse and I was not eating losing 3 ½ stone in about 4 months. Unfortunately it was difficult to impress this upon the medical staff due to the restrictions continuing regarding face to face consultations.
When they did see me and realised how low my haemoglobin was I was admitted to hospital and I spent just over two weeks there receiving blood transfusions and being monitored until the bleeding stopped. I was then transferred to St Leonards hospice in York for just under two weeks whilst they worked on the pain management. I requested a change of oncologist and now see someone else
I went home and about two weeks after that I went home. I went to see the oncologist and had low blood again so returned again the next day for another transfusion.
I attended for another consultation last week. I suspected that this was going to be a significant conversation so my wife attended with me. The Oncologist advised me that after studying the scans, they had now established that the fistula was leaking from the bowel into a cavity within the tumour. If this cavity leaks into my bowel it will be life threatening. The risks of draining the cavity are too high to try this. This risk of trying to remove the fistula are also very high. The tumour is so large and entwined with my abdominal wall and the muscles would need to be removed as well so an operation is out of the question.
Unfortunately the medications I could take previously act upon the blood vessels and are increasingly likely to cause the tumour to rupture so no treatment is currently possible.
At this point I would normally be passed over to the palliative care team but my oncologist is going to continue to oversee my case in part because he does not know how things might change and he wants to be on hand in case things change in such a way that he can step in.
Not being satisfied that I had just been told I had moved from incurable to terminal I asked about my heart as on two previous occasions I was told that my heart was slightly enlarged and I had a degree of heart failure. The Oncologist arranged an ECG which showed irregularities, and some blood tests which came back with concerning results. I was told that at some point I had suffered a Type 2 myocardial infarction or a heart attack. This type of heart attack is caused by a low blood count.
I was told I needed to have three more units of blood to try and get my haemoglobin count above 100 so I received further transfusions. I am not currently arrived to drive
I now have an appointment to see the cardiology department on 11th of July. I know they are intending to do an echocardiogram but have no idea what else they need to do. I am eager to know if there is anything I can do regarding my diet or exercise to improve my situation.
My oncologist said that he would be arranging for me to have regular blood tests at my GP's and any transfusions required at my local hospital.
So I am now incurable but in addition to cancer I am now at risk of a heart attack. My bloodstream is mainly donated by other people, I still cant walk very far but I am now no longer allowed to drive.
I'm feeling OK now, I have actually reduced the amount of pain medication I was on and my diet and taste is improving. All I want now is my driving licence back and immortality, oh well, we can but hope.
