Its been a while and here I am back at home and nothing feels different, but why should it? I can't expect hubby to change overnight from keeping so much bottled up for 8 years to talking about it casually. Thankfully his birthday's a year away and I hope that I will be here to celebrate it and hopefully we enjoy it together.
My scan is tomorrow, I pray it is ok and they say it is slow growing but the additional heart area pain is intense and my third boob has quite a few new shooting pains. The fear is that it isn't slow and has grown a lot but then the pain could be caused by just a small growth catching another nerve that hasn't been touched before.
I was shocked when talking to Mavis on Sunday, her tumours - individual ones - are 17cm, I thought 5cm was bad. It just shows how different each person is with this disease, thickening around the bottom and individual tumours or thickening or tumours. No one person seems to have the same symptoms or pain - how can they ever find a treatment that covers us all?
The cruise was wonderful, even if we did have stormy weather on the last two days and couldn't do much. I now know why it helps to have one day at sea in the middle, it gives you a break to catch up on rest. Its up, breakfast, off the boat and run around, lunch, a little sunbathing, shower, cocktails, dinner then bed! We didn't have a scheduled day at sea but ended up with one at the end.
I tried to do as much walking as possible, sometimes hubby was getting worried, especially if we had banks to climb. Nearly all the ports are at the bottom of towns not many led straight to flat long walks. We even had a look around some shops and I bought a beautiful wrap for over my bikini's which I only got to wear one day.
I have asked my doc to write to Hull to see about the ADAMS trial so fingers crossed my meso is suitable and that the trial works, but maybe once again I can put any treatment back again. I also have to start thinking about my talk for the conference.
Hearing so much bad news about my fellow warriors once again brings it home how unfair this journey with mesothelioma is. Just when we think we are ahead and safe scan's come back with a totally different story. I worry about how hubby is going to cope when I go. I was back at work today to hear that my friend and colleague lost her sister last week to her fight with cancer. It is so sad because 9 years ago she lost her brother to meso and now her sister to a brain tumour, I cried with her and it brought home again the pain that death brings. Who will be there to hold hubby through those moments of pain, these are the thoughts I can not get out of my head.
Why do we have to suffer at the end too, watching someone you love struggling to breathe is terrible and heartbreaking. I hope when my time comes that I have the strength to take a little extra morphine while he is out of the house and he comes home to find me gone. Far to early to be thinking thoughts like this but I am sure we all have them.
On that note I should end this posting, I have decided my grey matter is getting muddled more and more each day.
To everyone on treatments I am willing it to work for you all.
1 comment:
Will be thinking of you as you have your scan tomorrow Jan. Fingers crossed that it brings you news you want to hear, and that you have the option to go on the ADAMS trial, if you choose to do so! love Linda and Steve xx
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