I haven't blogged for a few days as I have had nothing interesting to write about and honest I think I have moaned for the USA let alone the UK over the last few weeks.
It has been tough going, its an adjustment to a new life and getting my head around it has been one of the most difficult periods I have ever gone through. Dealing with the meso coming out of remission is bad enough but finding it has moved to a totally new area is mind blowing evil. Then of course having a constant reminder every time you rest your hands on your stomach, no fun.
My tummy seems to empty a litre a day at the moment but yesterday it was stubborn and although it was in there it only came out at 400. I tried turning this way and that but I didn't touch my stomach. I did the day before and I must of pressed on the cancer area because I hurt for hours.
I want to fly solo, so to speak, Gary has trouble getting the tight gloves on, which did make me laugh but yesterday he managed. Unfortunately it was dressing change day. Big mistake for me to think Gary could handle working with me for the draining procedure. The wound was leaking lots of fluid and him this directly coming out threw him side ways. Considering he watched the thing be put in I was quite shocked.
I managed to clean the wound, the drain and Gary managed to get the bottle seal open but he had to leave the room. The nurse and I ended up having to finish the procedure. There is nothing to it really but I need him to help as dressing the area is quite hard. I cut the padding right down, you have a large square foam thing that covers the hole, so I cut this by half an inch right round, what a difference.
My Macmillan nurse called in yesterday too. I told her my appointment with my local oncologist had arrived, it is the 28th October. I said if he says 'no' then by the time Liz has sorted another appointment with Prof Fennell we are into middle of November, then the trust will have to apply for money from our local trust, so that's December, Chemo may not start till 2014. And we all know how fast Mesothelioma can change. It came back big in July, was it here in May? So it will have had at least 5 to 6 months growing before I have started anything to knock it back. I have to take my hat off to her, she said she would contact Dr P's secretary and see if an earlier appointment could be made and if he had received any communication from Prof Fennell or Dr Hughes.
I discussed writing to Mr Faheez Mohamed at Basingstoke hospital. He is the only UK surgeon I can find who works with peritoneal mesothelioma, he also studied under Paul Sugarbaker from the USA, who is the number one out there for this surgery. I also found he works privately too, so any problems and I could always pay for treatment. Although in the UK they aren't as up for taking your money for dealing with mesothelioma.
I heard back from Dr Breen, he said something like my lung is of no consequence at the moment and that I should be concentrating on my peritoneal mesothelioma. I, of course, disagree. If I could get the lung growths killed then they can't spread. In the States this would just happen, but oh no not in the UK! This has also made me wonder whether the stomach is much worse than I anticipate. I did try and ask the Radiologist how much cancer was in there but he managed to duck the question several times. I can't read the scan for my lower body, I can understand the top bit on the lungs, to some degree, but I wouldn't have a clue about anything else. I wish right now I was in the USA, I would have those right tumours frozen to death, at least I would feel I was getting somewhere.
Overall finally I am picking up. Although more breathless than I have ever been, I now shower downstairs every day, I only climb the stairs at night to save my breath. The wound site has stopped hurting, as long as I don't touch it, and its itching, that means the stitches must be dissolving at long last. I didn't realise I had three cuts from this procedure either!
On some really good news, Tess on of my fellow bloggers and superstar's has been told her drain may be removed from her lung. It has been insitu for some 15 months and it will probably need to be removed under a surgical procedure. This is big step, and one that Tess has waited for for a long time. To be stable is such wonderful news.
Fighting Mesothelioma is hard, there are so many more cases being diagnosed every day, people who have never come up against this cancer are suddenly finding a loved one or friend has been diagnosed and of course the outlook is grim. Doctors take away hope before the patient has even left their offices in most cases. For those just diagnosed it isn't always the case that you will die within 4 to 12 months. Many are being diagnosed at early staging, this is when surgery should be considered. I know mine has spread to my abdomen but I lost my diaphragm, that is what made the difference I believe. Thinking back to 2006 when I went to an Action Day a young girl was telling us that her father and brother both had surgery and both died because it spread to their stomachs. I remember saying to Gary how pleased I was that I hadn't opted for surgery in 2004. But the fact is I didn't know how far along their cancer was. That's the problem when you read or hear things. Position of the cancer and what it is doing dictates the action you need to follow.
Prof Fennell said to us, Always follow the Evidence. Liz will tell you the same.
I heard from the lady who has had her first vaccination, she had a bad skin reaction to the first one, she has one more before she starts Chemo then an injection every week I think. I said really they should try this on people who have had chemo and it came back. If the vaccination works that is where it would prove itself early, because if the meso didn't come back within a year then they have a product that potentially works. The first challenge of chemotherapy can keep the mesothelioma at bay for anything from 4 months to several years. When its a second rechallenge the length of time is a lot shorter because our meso cells know the poison we are using.