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Wednesday 23 November 2016.
Today has been good. I still had a lot of what if's, but after a shower and tidy around I ordered a sleep cap and a soft beanie hat for indoors, just so I don't scare anybody when I answer the door after my hair falls out, then a woolly hat that looked nice for outdoors one that wouldn't make my head look too small. My husband has always said I've got a 'pin head' in jest of course, hats are always too big on me, but my thick hair always made up for it. The chemo...
I’ve had a bit of a reaction to the new regime of FOLFOX.
I’ve developed quite bad hand foot syndrome. So bad in fact that I have quite nasty cracks in the skin on the soles of my feet which has meant that anything involving standing up has been incredibly painful. Walking has been a no no!
It was initially thought that it was a reaction to the cetaximab. This causes the skin on my hands and face to dry up but shouldn’t affect my feet. However it was thought that a week off the cetaximab...
One of the hopes in taking Rucaparib is that it will be "better than chemo". But is it?
I'm a week in so it's very early days but let me compare.
Chemo: a week in to the typical gynae cancer regime I would be flattened with long bone pain, shivering with lowered body temperature and breathless from the hit on my red blood cells. I'd be worried about getting an infection so wary of going out. That's just from the chemo itself. I'd have constipation from the anti emetics and...
We spent Saturday traveling to our daughters and her partner and helping them sort things out and un packing boxes. We got fish and chips and sat on deck chairs for the evening in their living room, but it was so lovely being with them. I just had this niggling doubt about that last MRI scan and if it would throw anything up, I hadn't said anything to my daughters, but there was the slightest doubt about my liver. Not a great nights sleep.
Sunday morning was spent in B&Q and getting essentials...
My partner got diagnosed with classic Hodgkin lymphoma in February, she started ABVD treatment and finished in August. On the 6 weeks PET scan her cancer had come back in the same place. [Primary refractory lymphoma] she is about to go back into hospital to start salvage chemo and this will be followed by BEAM and stem cell transplant.
We are only 27, the risk of becoming in-fertile is high which is really getting to her. But for me I just want her to start treatment ASAP. I lost my Dad when my partner...
Another retrospective post, but I'm forcing myself to keep on track!
September 6th at 4.15 in the afternoon my mum & sister call to tell me Dad's had a hemorrhage in the night and he's in hospital. As my mum and sister work together, my mum couldn't get away with not telling her as she'd notice her absence. They tell me there's nothing to worry about and it's all ok. Still - it's 45 minutes until I finish work. I worry why they didn't call just a bit later......
I really should have started this some days ago. It's day 5 of the new drug regime and despite the warnings, I'm taken aback by the fatigue I'm feeling since my first dose of Rucaparib on the evening of November 17th. I'm pretty much stapled to the sofa and feel as though my batteries are on about 20% charge. I was warned - and I'm told it will get better. So rather than concentrate on the now, I'm going to look back to how I got here.
I'll keep this short(ish). Womb...
Diagnosed 12th July, Ivor Lewis surgery 3rd October discharged on 15th October, first 2 weeks it was a joy to be able to eat again, last 3 weeks swallowing difficulties. Final prognosis on Friday 25rh November, if node positive only 20-25% 5 years survival rate. So me and my good friend " hope " are looking for a better outcome. I'll be glad the waiting will be over in 5 days, I am being as positive as I can, I feel so sorry for my wife she has been through the mill and has been incredibly brave...
A Chum Kidnapped me to St Peter & St Pauls Church tonight in Mansfield for a Christian "Healing & Wholeness Service" ...been uplifted by it very, very deeply...Not Afraid Aaaaanymore! Whatever...
So 1 year ago I received the results confirming that I no longer had any signs of cancer, can't believe that a whole year has passed.
I'm back at work full time, but life is certainly not normal...
To begin with I struggled to plan ahead of my quarterly review sessions, and then in August I felt like I had maybe turned that corner, booked honeymoon for Jan and started to try and get fit(ish) again.
Well a few weeks later and I was having a blip, feeling tired and rundown...
