Sunday, 18 November 2012

Weekend Gone

Its been an interesting week where blogs and postings have been made.  Linda wrote a good one about the new support group that has been set up, sounds very interesting and hopefully it will carry on to be the same.  Amanda has written more on new trials, Mavis has been doing a few talks with Doctors and Specialists and Debbie is in the waiting for Scan mode.  On Face Book someone wrote they had been cured from Mesothelioma, sorry and all but I don't believe there is a cure and no one should post such an outrageous statement, it also coincided with the release of a book she has published, which left me feeling a tad suspicious of her reasons.
On the home front I have had a week of up and down, feeling healthy one minute and totally wrecked and in pain the next.  The flash headaches and concentration being one of the worst to deal with but those terrible mornings have returned.  Not only with my stomach feeling much worse but everywhere where my cancer resides has hurt too.  Hubby's suggestion take morphine, I on the other hand am trying to keep my kidney from having to work overtime and won't touch it.  Take yesterday, I felt dreadful when I got up, pulled round with coffee and computer then went into work for an hour.  I came home feeling the same but instead of sitting down and relaxing I baked.  I can't let this mesothelioma or treatment take control of my life again.
Today the air was still, no mist but a good ground frost so after I took 2 hours to pull round and get my aching bones moving we took the dogs over the woods.  Any form of exertion makes my nose run, I wonder if this happens to anyone else?  It even happens when I'm baking, having forever to keep blowing my nose!
Bear didn't find any pheasants to chase but the scenery around the woods today was beautiful, the rich greens of the grass, the browns and reds of the trees.  We have set up a few bird feeding places among some of the trees, seems a squirrel had a hard time trying to get into the nuts and pulled the feeder off the tree, unfortunately the top stayed insitu so he gave up, leaving his scratch marks all over the lid.
Bear gives me the hump if I haven't been on a walk with him so no doubt after today I will be back in the good books, fingers crossed. 
I have made an appointment with my GP for in the morning, I hopefully can discuss my thoughts and anxieties about the chemo lounge and the fact that I can't lie about using elma cream.  If I am to go private I need to get this set up in 3 days as I don't want to delay the chemo for a week, not while I am still in pain and believe the poison is truly doing its job and killing all those nasty meso cells as they divide trying to make more nasty meso.  If I was right and when I had the last one my body was starting a session of growth then I hit it where it hurt, unless, and I really shouldn't air this, it has the opposite effect and the meso gained strength from the chemo.  It is hard, my oncologist is fighting to save the NHS and on Monday afternoon I will be seeing him about the next dose, I will also raise my concerns with him too. 
I do want to bring about change, change to the lounges we have, after all Bishop has plenty of spare room, it keeps closing wards or moving them around.  The other problem is if I do complain will it make things worse, as I believe when you say something negative about a hospital or staff they all turn against you.
If I do go private again and require more treatment further down the line I doubt I will have to fight for it like I did for this 3rd line of chemotherapy.  Decisions, why can't our lives be made easier when we have this to deal with instead of being made so difficult.
Our Lexi has been naughty again and peed in the lounge last night, not that we knew until Gary stepped onto it.  Bear came upstairs at 7 to get me up because Lexi was crying to go out, as soon as I opened the front door she was out on the garden so I never gave it a thought she would have done anything in the house either.  No I didn't stay up I climbed back upstairs and went back to bed, although I had to take a puff of ventolene because the cold air and the stairs had knocked the air out of me.  Yesterday Bear got hubby up at 6 because Lexi wanted to go out then.  I hope this isn't a sign of things to come with Lexi, after all she has been on those tablets a long time and they can cause problems to her organs. 
I wish Chris good luck, he was told several months ago he only had 3 months to live and to put his things in order.  I told him to go and see J Steele, surely there could be something, so tomorrow he starts on IPM or IMP, memory isn't working.  The only problem is he has to travel to London, stay for 2 nights, one the night before and one the day of chemo, then come home to travel again in 2 weeks for another drug, then back again the week later to have the first two again.  Its a lot of travelling when you are on treatment and feeling ill, I hope the treatment works for him and he doesn't suffer to badly.  This is what I mean about trials or other combinations, why we can't have satellite hospitals that will administer the drugs on behalf of the main trial centre or a different oncologist is beyond me.  They want people on trials but getting to them isn't that easy, especially if you are ill.  Mavis and Tess went through this when on a trial earlier this year.
It's Denise's funeral on Friday at Yeovil Crem if anyone would like to attend, although no wearing black, its a celebration of her life.  My thoughts will be with the family, unfortunately I will be into Day one of Chemo.
I guess that's it for today, I truly hope many of you are staying in that Stable bracket and for those who are on treatment along with me, lets hope we tolerate it a little better this next time round, I know Steve is in tomorrow for no 3 so my fingers will be crossed for him.

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