News on Trial at Cardiff
I had a phone call yesterday from the lady who is heading down to Cardiff for the vaccine next week. Although her day has been put back while the NHS funding is put in place to pay for the chemotherapy, she will receive the vaccine for nothing from the Researchers. I do hope this works for her but as she said, she is still getting the same chemotherapy and hopefully the vaccine will ensure the mesothelioma will never come back. Only around 28 people have had the vaccine so far, maybe this is why they are lifting the ban on living in Wales. It will only be given to first line sufferers. Shame they won't give it to us who have gone further as just a vaccine, maybe it could do something for us. Nothing tried nothing gained is my motto.
I had a busy day yesterday, I went into the office on the morning for a couple of hours. I didn't get much accomplished but I did manage a little bit of work. I came home to have lunch then Liz was here, we were going to work on the book, but only managed a couple of chapters as my toe lady arrived. Yes time to dig those big toes out again. At least now its monthly they don't get so deep and the razor blade doesn't need to go as far into my toe!
As Sam was digging away Lorraine arrived, she thought she would pop in on her way from the hair dressers. Must say it was a nice cut but am used to Lorraine's hair looking bouncy, it had been straightened and flush to her face. For once I didn't say anything, usually if I don't like her new hair style I put my big foot in.
As Sam was leaving the phone rang to say Gary's car was ready to collect, his electrics had gone haywire! He had gone out leaving me to have the house with the girls, now I had a panic, the car needed collecting before 5. As I opened the door to let Sam escape the back way, missing Bear's large drool, I saw my car had come back, Gary was somewhere in the house! So in the front way and found him in the office. He moved the car then I said goodbye to Liz and was just about to throw Lorraine out so I could take Gary for his car when he said Liz would drop him off.
Liz and Gary left and Lorraine and I sat down for a chat. It's been a while since emotions came out and we both broke down in tears. Lorraine sat with me 9 years ago, keeping me company when Gary was away with work, after my first surgery. She nearly threw the Macmillan nurse out when she first called. We laughed about that, trying to raise the sadness we both felt. Why throw the nurse out? she arrived without any knowledge of mesothelioma or the fact I had been diagnosed with it. She wanted to know the details of my health, how long I was given etc. Lorraine couldn't believe a nurse would come without any prior knowledge, she asked her to leave.
Gary walked in on us both sniffling and left abruptly, I saw him sitting up the garden on the swing and knew he too was crying. What an afternoon!
I was up must of the night with stomach pain and finally running to the toilet. I think I peed more during the night than I had during the last two days. At 3.10 I was back up, sitting on the toilet with the worst stomach pains, I heard Gary ask if I wanted a hot water bottle but I said go back to sleep. I returned to bed at 4. I was a little cold after sitting up for so long.
I have just read Steve Cook's blog, he has gone through surgery to insert a drain in his pericardium to release fluid build up. Last year Prof Murphy was talking about doing this for me, after reading on Steve's blog that it is major surgery I don't know whether I would be able to undergo the procedure. Although suffering those terrible pains when you have fluid in the pericardium isn't pleasant, especially when the heart feels it doesn't have room to move. I wish Steve a fast recovery, but please read his blog.
Lou has also had a few days away from home, a relaxing time which she needed. When we are away from our normal life we do manage to put meso to the back of our minds and for that short period of time enjoy living.
Mavis as had her last chemo for 4th line, now we are all waiting with baited breath to see what her scan says. My fingers and toes are crossed because if she has had a great result I will be pushing for her chemo, if at all possible.
The sun is shining and it is quite warm out, I am going to have a shower and do what I haven't done for weeks, go over the fields with hubby and mutts. It will be lovely to spend some time out in the woods with my little family. Hopefully this afternoon we will pop into Darlington, I need some long tops which I can wear over leggings and maybe try a pair of maternity trousers on so I have some support for this stomach. It is getting heavy and making my muscles ache.
I wish everyone a good weekend and hope you have a sunny, warm weekend.
