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Cancer blog updated 16-Oct-2024 |
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Not sure about a blog, but there must be some of my cancer experiences (two cancers) worth chatting about that may help others to live with it or carers to tolerate it. My motto has been to keep busy (difficult when you're so tired) and keep cheerful (difficult when the drugs give you a downer). I get depressed when my mind wants me to do things (there are so many jobs that need doing around the garden and pottery and music practice) but I'm physically too tired. And you need a super partner (I have one) to tolerate your sudden mood changes and keep life going in between. This is in reverse date/time order, most recent first, but I'll fill in some earlier dates from the start of my first cancer. I may not be in a fit state to update daily! I have good days and bad days. 16-Oct-2024 On Monday's 4-weekly "see the consultant" she didn't seem too interested in my pain and knackered complaints. Wednesday 10am phone call "Come into hospital NOW to sort out your pain". So off I go (Jenny was coming round anyway, gave me a lift in) and eventually got out last night. Three days of tests, MRI, poke, prod..... The upshot is that although I thought my cancer in the spine (all under control) was the cause of my pain in the spine, the pain is because the lower spine discs (between the vertebrae) are decomposing. Don't mention "old age"! So really for now just more pain pills (yes please) or spine surgery (not yet thanks). I'm on opium, doesn't seem effective yet, but give it time. Next may be morphine, we shall see. As usual the top doc (I know her, Frances) does a ward round with a troupe of students. She uncovered my legs and said "Look at those fabulous cycling legs". Good eh? So that's it, I'm totally knackered and missed today's morris clog. But I'm just flattened, never mind, Joy is very caring. 02-Oct-2024 Seeing the top doc consultant next week, does he want rid of me? Or some serious changes? I hope we keep going, even with the unpredictable good and bad days. Some good days lately, playing music and potting and triking, but too many unpredictable bad days or half days. Totally unpredictable, poor Joy suffering my random changes of mood. 19-Sep-2024 Not a good blog, when I feel rotten I don't have the energy to update, when I feel good there are lots of other important things to do to earn my keep in the house. Anyway last week was eight NHS appointments in seven days, it doesn't leave so much time to do other things. That included chemo at home, and Zometa as an IV drip at home. The others were mostly at the GP since I've injured myself so much lately. My skin is very fragile, brushing against the side of a door left a huge piece of skin dangling. It's slowly getting better, tomorrow the nurse will teach me how to dress it to save me heading to the GP every two days. 08-Sep-2024 Back in UK after holiday in Germany abroad. Exercising every day on the trike. But I got caught in brambles, blood everywhere, fell off, and had trouble getting out from under the trike. The nurse next day was horrified by the wounds! Four NHSs in the last 3 days, another four coming up this week, I feel very weak and in need of being looked after. Never mind, I say to myself that the exercise is good for me. 17-Aug-2024 While out trykling this afternoon, I parked the trike in the cycle racks outside Sainsbury's. An old chap came up alongside cursing and swearing at the world, he had a flat tyre. I said "Have you got cancer?". He said "No" and shut up. 13-Aug-2024 I'm so bad at regular updates - sorry. Monday last week was 4 weekly visit to the consultant. All bad news, lots of extra tests including an X-ray (I get wheeled around, and jumped the queue to the X-ray). I had a nervous week, I shouldn't get worried by tests, but I do. Then I'm uptight the day before a consultant visit. Monday this week they had all the test results, all negative. I should feel great, but so so tired and lots of sleeping. It will be chemo nurse at home on Thursday. 24-Jul-2024 Last Saturday I was playing all day for the cloggies at a festival at Newark. They are so careful and helpful and loving to me. They walk me arm-in-arm to stop me falling, provide a chair to sit on, and feed me! All in return for playing accordion, which itself is a therapy for me. And playing for them to dance to is even better than playing just for the music. A super day! So then knackered Sunday and Monday, until another playing session Monday evening. It's now Wednesday morning, I fell down the stairs last night, luckily only a few bruises to show for it, but some extra aches. It worried me for a while at the time. Now to prepare fresh-bread-brunch for my old biddies who will arrive at 11am. 18-Jul-2024 Monday I did too much (trike ride, gardening mowing the front lawn etc, evening playing for morris and clog) so Tuesday was absolute grot. In bed most of the day, just woke for food. Then a bad night with difficult breathing, walking the boards till 3am. Wednesday I needed therapy, so cleared the pottery and got out a bag of white stoneware. It magically turned itself into 11 assorted pots, a wonderful therapy, I then felt lots better. 11-Jul-2024 We had a weekend away with friends down south, a local friend offered to drive us there and back. We haven't been away for nearly a year, and remembering all the medical bits and pieces (pills, nappies, plasters0) I need takes time. I'm always frightened of using other toilets - the hospital gastro people have given up trying to cure my ultra diarrhoea. But all went well, it was great to have a change of scene for a couple of days. 05-Jul-2024 Monday was blood tests and consultant at City hospital, I am taken there by my wonderful taxi friend William, so wonderful to have no worries about getting to hospital. All well, I surprised the doc by saying "We have a gig in Germany in August", and they're happy to shift things around to keep it free. No Tuesday phone call fetching me into hospital. And Thursday I had Emma from Outreach at home for Daratumumab jab and Zometa IV drip with cannula. So wonderful having it all at home, even though they have to bring all the IV stuff with them. Wednesday I had a crying fit while Joy was making evening meal, she's wonderful and and getting used to my strange drug-induced behaviours. This one lasted only half an hour. 25-Jun-2024 My third week with no NHS at all. But I'm still knackered, and lots of sleeping in the day. Night sleeping interrupted by loo trips. But I try hard to achieve something every day, gives a bit of satisfaction over the tiredness. Today lots of garden pruning. The last three day have all been accordion playing for the cloggies and morris, they look after me so well and I appreciated that. 14-Jun-2024 06-Jun-2024 03-Jun-2024 21-May-2024 01-Sep-2023 09-Feb-2023 20-Apr-2022 10-Nov-2021 12-Jul-2019 08-Oct-2012 - bowel cancer | ||
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Page updated 16-Oct-2024 |
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Comments and corrections on the website welcome
by Eric Foxley |