Well, what a busy last few days. Took hubby to hospital for his hip replacement op Friday morning. Had to get up at 5am to leave at 6 (after walking dog in the moonlight) to be there for 7.30. Brought him home Saturday afternoon - how quick is that??
In the afternoon my CNS called, we'd been waiting for the written report for my CT scan. I wasn't good news. My disease is back in several places. I was placed on the MDT meeting for Monday and saw my Oncologist yesterday - lovely guy, known him a few years now as he was hubby's Oncologist for Prostate Cancer. I was given permission to take my friend as hubby's in the hospital so I knew it wouldn't be good news.
It seems I have lesions on my liver and spleen and a large mass in my abdomen (that's what been causing the pain in my chest and tummy) and another mass just where my ovaries used to be. I had no words - makes a change for me!!
Anyway I start 6 sessions of chemo each at 3 weekly intervals in the next couple of weeks. Prognosis isn't marvellous - my cancer was a grade 3 so it seems I'll never be free of it, therefore will be having what's called palliative treatment for the foreseeable.
To say I'm bricking it is an understatement. Hubby and I are trying very hard to process things, he's taking it much harder than I am. He's 10 years older than me and he always joked I'll be out on the town when he goes first.
I'm not writing this feeling sorry for myself, I'm bloody angry to be honest but determined to kick the little **it into touch.
Up side, I'll get a wig- don't know if I'll go redhead or long blonde or just wear my baldness with pride. If you live in Ireland or Scotland wigs are free, if you're not on any benefits you have to pay for them but you do get a voucher towards some of the cost - I don't think that's unfair and if I have the energy I fight for free wigs in England!
Anyway ladies, I might not be around as much as normal but you'll know the reason why.
Big hugs, Barb xx
Hello you lovely ladies.
Had a long chat with my CNS yesterday. It seems my team are as totally flabbergasted as I am, no-one was expecting this outcome. As usual she was helpful with her answers. I asked why didn't I didn't have scans at regular intervals, especially since I was grade 3 and she said they weigh up offering CT scans very carefully as exposure to radiation is high on CT scans, even to the extent they could trigger cancers. The health trusts set down very stringent guidelines as to procedures to follow for the best outcome for patients. So it's not a financial thing which I had immediately thought.
She said every single call is logged in the unit from someone asking where the bus stop is to when I called back in September and expressed my worries and my GP was investigating. She said as a result they will place much more emphasis on the patient led situation - i.e we know when something's up. When I had my examination earlier this month he was very very thorough and didn't find anything in the gynaecological area which is his remit. My problems were in the next room!
So I'm not angry at the NHS I'm angry at what life chucks at you! I've never even had a parking/speeding ticket in my life as I live by the rules so WTF (sorry learnt that recently)
Anyway start chemo on 6th December, nice and quick! Got hairdresser coming around Wednesday to chop off my hair - it's not even shoulder length but I'd hate to see it coming out in chunks. Bought some of those turban type head coverings, sudoku books, colouring books, hand held fan. Don't think I'll be able to sneak a bottle of Whisky in but I've gone off it anyway! Not got a huge appetite at the moment due no doubt to my hitch-hiker. Getting a bit of pain in my tummy which is controlled by painkillers. I notice it when I have to pick up my dog's dumps. Hubby can't yet, he's making good recovery after hip replacement thankfully.
My sister is coming up and staying for a few days and she'll take me for my first session. She can't come in with me due to restrictions and as my first session will be about 5 hours (1 hour chat, 3 on one treatment and an hour for the last) she'll have to drop me off and pick me up hours later. In a way it's probably better because you'll interact with the other patients rather than sit in your own miserable little bubble!
Anyway, I can't begin to tell you how your lovely messages make me feel warm and fuzzy inside, no - it's not wind!! When I joined Macmillan in August last year I didn't have a clue as to what a difference it's make to my life. As we say, we've all been there so we know exactly what it feels like.
Big hugs to you all, Barb xx
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