Although my nights have still be interrupted by this rotten, no lets be honest here, nasty hateful cough, I did wake up feeling much brighter, although Gary again let me over sleep and it was District Nurse Day.
All hands to the deck because then it was rush rush rush. Ok, slow rush for me, faster than the snail I have become but still extremely slow in anyone else's book. I decided to ask one of my work colleagues to come to the house and do some bits with me, stuff that I know she can do and keep the job ticking over nicely while I am still stuck at home on my sick leave. Will I ever get back into the office I ask myself, but as germs keep piling up, my cough doesn't improve and my energy is pretty crap somehow I can't see me returning before Christmas, as Chemo is looming and we all know what chemo does!
Heather brought another nurse with her, the last time I saw this nurse was 30th September when I thought I was going to die and they had rang the doctor the moment they walked in and saw how bad I was. So she was also pleasantly surprised. I am sure Heather brought her just so she could say 'By you've come a long way'.
Wound cleaned, I still can't look, and drained. Had to stop again at 500-600 as the pain shot down my body into my bladder. This blinking hose pipe drives my insides crazy when it flits about. Coughing doesn't help it either. Mind when I cough the flow stops then rushes once the cough has finished. Funny to watch I guess!
I was looking for something on one of the websites yesterday and came across Chris Knighton doing an interview for Mesohelp. I have re posted it here because I didn't highlight it at the time and I think its worth a Reread
So lunch time arrived as did my understudy, it was great to see Claire as its been a while since we had a chat, I also asked Ann if she could call in, just for a quick coffee, also to check her side of things are going ok. So seeing two friends from work brightened my day. Obviously Claire and I had to get down to work. I tried my hardest to be healthy and not to tired but by the time she left I was shattered. Who would think talking, explaining and inputting can make you so worn out. I had hoped to carry on today but Claire was the sensible head and said not till Wednesday. Plus she has to sort her own jobs out. I guess she will need an understudy to do her jobs if she takes up some of mine. I guess I am still thankful our industry isn't like it was 5 years ago, I doubt my absence could be tolerated then. Yes over the years I have managed to work full time with this bloody cancer, hard to believe but true. Even through Chemo I could do at least one week every three, albeit then I had to work from home most of the time.
So when Claire left I collapsed on the sofa and yes was left Gary to make dinner. I picked up the ipad and went onto face book. I never thought in a million years I would spend so much time on it but I have found the groups and my friends on their so supportive and helpful. I love the way on a morning I talk to Lou in Australia, although its her bedtime, Mavis and at times catch Lisa. Then their are more friends that message in between. You can and I do lose a few hours here. How will I keep up when I ever do return to work. This is what also helps my mornings slow down as I like to go on first thing as I pull round and let my sickly stomach settle before I start draining and showering.
We are experiencing water problems here at the moment. Yesterday the mains kept dropping, and today is no different. One minute water the next not. Showers will be by chance otherwise it could be a scalding if the water runs out of cold! Poor Gary is anxious to get going as he has the dogs to take out, Bear gets grumpy now if he hasn't had a walk before 11.00. God help Gary if he needs to go somewhere beforehand as the dogs get excited when he puts a coat on. They do know the difference between his dog coats and going out ones but that doesn't stop Bear knocking him flying saying "We're first!".
I would like to thank everyone for giving me information on the postmortem situation. Gary has done nothing but stress over the fact that one will need to be carried out so has decided to start putting an information pack together and get it ready for the solicitors. This isn't because he thinks I am going to peg it anytime soon, just one less thing to worry about when the time comes. Getting organised now seems to be a better thought in his mind. When I talked about this years ago he shut down, remember he couldn't face the world of mesothelioma. Now we talk often about it and I can even discuss others and their struggles. This has helped me mentally too, as before I relied on this blog for my feelings and that of other sufferers emails and of course the introduction of face book.
End of life is hard, we don't really get a chance to say goodbye. I remember years ago I was going to do write all these little notes and leave them inside CD covers etc but didn't do it. Maybe it wasn't the right time then, but it is something I will do, after reading what so many carers go through I want him to know how much I have loved him these many years of marriage and that I am still in love with him. He is my knight in shining armour, as I have often said I rush into treatments without a thought for him and he is the one left picking up the pieces or having to worry if I will come through.
My last cryoablation in the USA was fearful for him because I had a punctured lung. I didn't know and couldn't understand why he was so edgy. As I coughed up blood and felt a little unwell he was quietly panicking. He thought I knew because Dr Abtin had told us together but of course I was out of it, when heavily sedated you remember nothing of conversations for hours afterwards. Gary only found this out after he was sedated for a camera. He remembered nothing from going down to me making his tea at home! Also back in 2011 facing up to meso was hard for him. That was the first time we met Barry and Helen out in LA, that was a wonderful afternoon having lunch by the pool. I just wish we had spent more time together that day.
So the day is starting, I have just had a craving for crisps, its is far too early but something in me needs the salt and spices that come with all this fat. Fat is something I can never tolerate so find it strange my body is accepting the crisps and wanting more. I am becoming a junk food eater!!!!
I hope your day goes well, my thoughts are also with Steve Cook out in Australia. His meso is doing a roller a coaster. One minute he is fine and able to re try chemo, then out of the blue his respiratory system started collapsing. At the moment I believe he is back in hospital so please send a healing thought out to him now. That's it all it takes one thought, please send healing to Steve Cook, see you've done it.
I have been asked to write an article for mesotheliomahelp again, I hope it will get printed on Thursday but I also notice my article for That's Life wasn't in this week. They said the edition of 4/11, guess will have to wait and see. One good thing from doing this, its under health not the trashy 'my man ran off with my mother' stories, but the payment for the story is going to MKMRF, every penny counts towards research. Plus the article is part of the 5 to stay alive incentive. Lets hope many wives read this and warn their husbands of the dangers of asbestos.
Ok time to close, I have written a novel rather than an entry. Hope you all have a good day, to those under treatment my heart goes out to you, knowing that today may be one of the worst but remember tomorrow will be better.