Today I made 53, I should be happy because when I was 44 I didn't think I would see 45 and had a big party just in case. So you see I'm still here but not due to the help and encouragement of doctors but down to my own perseverance that I made it. A fellow meso sufferer who was diagnosed with me sent a card which said "Good to see you made another one" True it is good. For that I am truly thankful.
I woke up feeling rather ill this morning, I came downstairs and said to Hubby I think I have an aversion to work, seems each Monday morning I feel ill! I didn't stay up long, I took a mouthful of coffee which nearly came up along with a lot of bile that had been resting in my oesophagus and my pains were bad. I didn't think I would go back to sleep but the next thing I knew it was 10 am. I made my way downstairs yet again. The door had been busy with two bouquets of flowers for my birthday. I didn't want to celebrate it but a pile of cards were waiting to be opened.
The weather here is warm but not rising above 19, no blue in the sky just grey clouds, but about 1pm we went to sit out for an hour before my appointment.
Where do I start. Hubby is currently deaf due to a wax build up and missed quite a few bits but he did catch most of it. I am to have my stomach drained, he did show us a quick flip through the scan, although it doesn't go far enough down to show how much fluid is there. He showed me both lungs, the left has grown slightly (in my opinion) but the right has meso inside the lung as well as on the lining. I saw the fluid but again it isn't that much, compared with years ago! The stomach has probably meso sitting somewhere, but we are hoping the thickening on the left diaphragm has irritated the lining or the fluid on the right has somehow managed to get into the abdomen.
He told me he will never give me any chemotherapy again, not even gemzidabine. Why? well the combination nearly killed me in 08 then I had the reaction to his low dose in November 2011. He said that I didn't get enough of a good response for him to try again. But I only had 1 and a bit doses but he wouldn't listen. I had excellent results, the meso disappeared around the heart, the left shrunk, ok the right didn't do anything but you can't have it all. Maybe if I had had 4 doses it would have done more!
The only thing open to me is trials, and lets face it - we don't have that many that don't do chemo! He said he would refer me to anyone I wanted to go to, my GP would do that anyway. I felt that any hope I have for the future has gone.
I guess in his favour his concern was not killing me before my due time. I honestly believe due to all these hospitals been sued for stupid things no doctor dare risk anything that is unproven. When I asked about gemzidabine he told me it was UNPROVEN therefore unable to be given.
I disagree with his reasoning but unless I find another oncologist willing to risk his licence then I am at the mercy of the meso. It seems so unfair. My lung nurse was asked to arrange for my stomach to be drained. We went through the risks ie my blood pressure could fall through the floor (it was low in hospital last week), I would need to be in hospital for at least 2 days, it will probably come back and they wouldn't be willing to keep draining it. If a drain was inserted this would probably disallow me from any trials. The list was endless.
I came out feeling flat, I looked at hubby and he looked flatter than I felt. My nurse went off to arrange an appointment without any joy. She took us into a room and told me that although its the lung that has caused this I need a different department to authorise the draining. I could go to A&E and hope they admit me or leave it with her while she tried and found someone capable of removing the fluid.
We don't have anyone up here really interested in Meso, she told me that maybe if the stomach stays down and I come back in 6 months looking healthy my onco could change his mind. He had promised to write to J Steele but I noted that hasn't happened. He is referring me to Bobby Robson Trial Unit again. I have been before and I hate to say this but there are currently no trials for meso going on in Newcastle so what's the point!
I sent an email to J Steele yesterday but he is away until the 26th July, although I don't think there will be much on offer there, although he may give me a chance on gemzidabine, Mavis is doing ok on this chemo and so far has had some response.
The best laugh is he said in order to treat the stomach they need to treat the disease, yet he isn't willing to treat the disease so how can we treat the stomach?
It also seems they will no longer monitor my progression by CT Scan, this is something I will speak to my GP about. For my own sanity I need to know what is going on.
Things are looking bleak, neither of us know what to say to each other. If my back wasn't bad and I didn't have this stomach I would look fantastic. Problem is the stomach has been getting bigger over a period of time, my insides will have been getting squashed and moved to accommodate the fluid. No wonder my chest is so heavy and my back hurts so much. This fluid can also affect your body in other ways, taking out electrolytes and other minerals. I mentioned my eyes playing up but he ignored this. Yet when I have had sessions in the past my eyes have always played up, and to me are a part of my illness.
Lorraine asked if I was going to go out for a nice meal tonight, even though they have brought me up a full wardrobe to choose an outfit from I have neither the inclination or desire to go anywhere. I feel like eating food as much as having 100 needles inserted in me.
Bear is still staying by my side, he never sits in the office and yet he has come in every time I come on the computer and sits by my chair. Funny how dogs can sense things.
I close this by saying I think my lung nurse seems to be on my side and will help me through the next few weeks. I said in May that if I needed chemo I would wait until September, if I can hold off the meso maybe September 2014 he might reconsider.
WE NEED HOPE TO SURVIVE - THAT SHOULD NEVER BE TAKEN AWAY