Hi All,
Been off for a few days because, well, been too grumpy. I've been very lucky this year in that my little family have coped really well with the Monty Python jackboot from the sky that landed on us last Xmas. My mood has been on a pretty even keel all year (after the initial shock and a nervy day or two before scan results) but generally we've just got on with things.
I've coped with working full-time doing a job I loved to not working at all - overnight. I've got used to not seeing people as much in case of infection. I've got out of doing the supermarket run (Yay!). In a way, I've enjoyed an enforced rest as I was probably doing way too much before in that as well as working, I was home-educating our two sons and helping to run our music co. - at least I get all the sleep I need know and am not burning the candle at both ends. We coped with the financial meltdown resulting from my not bringing in the regular bacon. The words blood and stone come to mind. As well as 'looking after' me (usually a model patient but I have my moments;), Pete has had to deal with his mother who lives alone some distance away from us.
She hadn't been eating properly when she was on her own and lost some weight - (the family organised shopping and would cook for her and so on). So, community matron and all of the support services became involved. Great, we'd tried all of this before (cooking meals etc) but she thought they were an intrusion last time so it stopped. She's very independent-minded, haha. Anyway, we managed to persuade her to spend a few weeks in a respite home where she would be fed and monitored (the alternative was hospital which swayed her) and Pete and his sis would make the house more comfortable. She refuses to let them throw anything out if she's there,lol. A care package was put in place and after a few hiccups - mainly due to officious social service staff who, at the outset, had decided she would be going into a home and would talk about her as though she wasn't in the room - she seems happy to 'let' people in to make her meals. For Pete, this had dragged on for months. But she is happy and in her own home and we are happy that she is eating properly in her own home:)
The boys have continued to gig, do their courses and work at the local pub. Joseph passed his driving test in the Summer so a whole new world of socialising opened up for them:) Unfortunately, Karate seems to have fallen by the wayside (both England standard) - sometimes due to treatment Pete couldn't get from Middlesbrough to home to York in time. Sometimes due to gigs. Sometimes because they had coursework deadlines to meet. Now, because of the cost. I think that they should continue to do it - it's great for self-discipline and friendship. They still play football - this year for the village team. Since Joseph got a car, they've stopped walking up the hill to work. That might change as he's just realising the cost of running a car!!
The main thing is we're still laughing and Living Our Lives. And I feel quietly chuffed for all of us.
My Mum has been up from Wales a few times this year - always in time to clean the ccoker, lol. It's always lovely to see her even though before, we didn't see each other as much what with work and so on. Sometimes I just need my Mum. I'm in touch with my Dad again - kind of:) My brother sent me a birthday card this year, haha. The lengthy phone calls we've had have obviously worked :D.
Three lovely ladies from school have regularly visited me in hospital - even on a sunday - and we've just gossiped about school, life and well normal stuff really. Lots of laughs - we've had to take ourselves off the ward from time to time so as not to disturb people. Their visits always leave me feeling happy and hopeful and I am very grateful to them for taking the time. You're all lovely, haha. I've had support and good wishes from a few special people locally. They've kept in touch with offers of meals and hats and just to say Hello.
What Now (and now the Macmillan site) was a godsend when I went back in the summer knowing that I was in for the long haul treatment-wise. I have met some fantastic, funny, wise and knowledgeable people there who continue to inspire and fill me with hope for the future - whatever it throws at us. You're all lovely too:D!
Sadly, I seem to have lost a few friends who, I guess, just couldn't cope with the news or didn't really care enough to try which was really saddening for a while. I tried. I rang. I sounded normal. I told them that I looked OK :D but soon let it go...A major source of my grumpiness was one of these ringing out of the blue a few days ago. "Great!" I thought. Why don't you come for a drink on 21st? "Sorry, I can't, radiotherapy starts and I've got a flu jab in the afternoon" "Well, we can't do any other day. Can't you change your appointments?" "erm, no". And that was that. I was really pissed off at the crassness.Like she was doing me a favour inviting me at all! Then the next day I was in a bad mood (for me) because she'd put me in a bad mood the day before. Why should your stupidity ruin a perfectly nice day with my family? Why did I let it? You get the picture...
Anyway, we have a light dusting of snow and glorious sunshine outside and I feel normal again today. Looking forward to starting radiotherapy on Monday. Had my line checked on Tuesday and it flushed and bled fine.This has been taxing my faculties for a while - take this one out and get a new one that works properly or put a new one in just before stem cell transplant. A kind of Hickman Hokey-Cokey. Nuking my immune system with fresh wounds and stitches on both sides of my chest doesn't fill me with confidence so hopefully the one I've got will do this last little round of chemo...
Needed to get all that off my chest today.
I love Christmas and am ususally well into it by now - the festive season starts today! I hope you and yours have a lovely time and that next year takes care of itself in the best possible way!
Love and good things to you all
Karenxx
