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
Correction: I do think it's unfair or I don't think that's fair. Bxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Oh Barb, what truly terrible news - you've been such a rock for all of us, let us be yours in the coming weeks and months. I've always felt we were kindred spirits, being diagnosed and treated at almost the same time during lockdowns, but now is different. This seems doubly unfair given your hubby's just had his op and hopefully will be in a better place to support you but not just yet. If there's anything I can do, please ask, although our geographies are at opposite ends of the country.
On the wig front, I remember a teacher from school days who seemed to have different coloured hair every day: perhaps you can choose to match yours to the outfit of the day? Is there a wig exchange? Or could you use scarves and bonnets as an alternative to the bare-headed look in winter?
I can understand your anger - we're all rooting for you and keeping fingers crossed that the treatment goes well. I'm sure others with more experience will be along soon to offer their wisdom on dealing with the process and its side effects. Please keep in touch.
Love and hugs,
Dx
Hi PicNik and all you lovely ladies. Thank you all so much for your lovely messages of support can't tell you how much I appreciate it.
Got my first date today 6th December and session 2 on 31/12 - Happy New Year!
The thing that's shocked me so much about all f this is I have had a face to face (or face to fanny LOL) consultation every three months, the last being at the beginning of this month. At that one they said there is no evidence of recurrence. What seems to happen they are only examining visually and digitally the area operated on. My cancer's sprung back in the "next room" as it where. When I mentioned the pains I'd been experiencing in my chest and tummy and bowel problems he didn't discount it out of hand, he more or less said the thoracic area isn't his area so I needed to consult my GP. (Which I was in the middle of)
Even my CNS was pretty sure I didn't have recurrence but the fact I'd alerted her to the fact I'd had a scan ordered by my GP and she looked out for it. As soon as she saw the report (before my own doctor) she'd alerted the MDT and my Oncologist.
I was told after my op and brachytherapy my body was free from cancer. As my CT and MRI scans were done before the op there's a high possibility these tumours had already started growing. At my first post op consultation I asked if I'd have a CT scan done but was told no (basically there's insufficient funding) we, the patients are expected to bring up any problems - which I did at the first sign of a problem back in August but was told as it sounded unrelated to gynae problems to consult my GP.
I'm not angry at the NHS as they've been brilliant to my mind but I will, if I have the energy, campaign to ensure that quarterly check-ups are preceded by a CT scan. If that was the case my recurrence wouldn't have been so severe in it's spread.
It might be a good idea if you all lobby your consultant's to have CT scans done.
Hugs to all, Barb xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
