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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 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.
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 dow 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
I'm supposed to be on a holiday from treatment for 3 weeks, so should be feeling great. But is it last week's chemo? I'm more tired than ever, I'd be happy to stay in bed all day. But needs must, there's accordion practice to do, clay to be thrown. At least it's pouring with rain, so I can't go out trycling.
06-Jun-2024
Chemo today. A nurse from the OutReach team at Nottingham City Hospital comes round, this time Stuart. These are currently 4-weekly jabs, except that complications last week which caused this one to be delayed by 2 weeks. The Daratumumab jab for 20ml of liquid injected over a 10 minute period, no problem as long as it's done slowly, but can be painful if the nurse is too quick. Then a 15 minute wait before they leave to check for no side effects.
03-Jun-2024
Monthly visit to the hospital for blood test and to see the consultant. I always prepare a list of comments and questions, otherwise I forget some important points. For my back pain she offered for me to see to spinal unit to discuss fusing vertebrae together. And did I want to go to the gastro department to discuss the diarrhoea? I said "Please can I had a treatment holiday", she agreed.
21-May-2024
Cheerful phone call at 9am. "Is that Eric?" "Yes" "Can you pack your holiday bags quickly". I thought I'd won a free holiday to the Bahamas or some such. But no, "Come into hospital immediately..." Not what I expected! Luckily we had a visitor with a car, so in I went. They must have found something in my blood test yesterday. Lots of tests, and a long drip over days to rehydrate me. They found I'd put on weight. Well, they'd put 2 or 3 litres of water into me, so no wonder I'd put on 2 kilos.
01-Sep-2023
We flew over to family in Germany. The doctors shuffled my chemo dates around to give us a three week window for travel. I ticked the box on the Lufthansa Airline booking that said "Need assistance" and we were brilliantly looked after at the airports.
Don't be ashamed of looking for help, accept it happily! They wheeled us past all the queues for the X-ray machines (but we still went through X-ray) and bought us food in the departure lounge. Not quite so good at Frankfurt Airport when we returned.
09-Feb-2023
Additional drip by cannula, still at home, of Zometa (Zoledronic acid = bisphosphonate). All to do with bones.
When I heard I needed a drip, I presumed it would mean reverting to hospital visits. But "no", the OutReach bring the complete tripod home and do it all here, just great. About now we switched to 4-weekly visits instead of weekly. The days of feeling good or bad or high or low became much more random, not just following the jab.
20-Apr-2022
Restarted chemo, this time by injection.
Main Drugs to be Daratumumab = "Darzalex", Bortezomib = "Velcade", Dexamethasone, combination, nicknamed "DVD lite". Why "lite"? After a few weekly visits to hospital for the jabs, there were no nasty side effects, so then a nurse from the "OutReach" team came home to do it. Lovely, so much better at home from every point of view, travel, parking, waiting, environment. And we do live near a hospital, but not the one I go to! Weekly visits seemed to cause two bad days and then 3 good ones. I can live with that!
10-Nov-2021
Doctor said I'll be on Dexamethasone morning pill; Lenalidomide (Revlimid) evening pill; Biphosphonate morning pill; and Inhixa daily injections which I can do myself. He said accordion playing won't be affected.
Get the important things sorted! But something (Revlimid?) caused all sorts of aches and pains and bad throat. I "chose" Revlimid because pills seemed easier than chemo jabs, you can take them at home or if you go away. About now I had a real nasty turn, phoned my magic number, "We'll have a bed in 15 minutes, get someone to bring you in." They are wonderful. They stopped the chemo treatment 2 months later.
12-Jul-2019
Meeting called at haematology department of City Hospital.
I've got (from blood tests) possibly myeloma, but definitely MGUS (monoclonal gammopathy of unknown significance). I love the phrase "unknown significance", there MUST be something significant about it! If you ask the doc to explain some of the words, the explanation is far too complicated to understand! The doc was so pleased to find something nasty, they'd been looking for ages, you could tell he was happy! They took bone marrow samples, a bit outchy, but I could hold Joy's hand for the hip bone ones. But when it came to the spine one, it had to be under X-ray, so Joy couldn't be there. Jenna immediately when she heard offered me a teddy to hold, lovely gesture!
08-Oct-2012 - bowel cancer
We were both called to hospital for a chat to the cancer consultant and have various blood tests. Two weeks later another meeting. I heard the words "cancer" and "terminal" in the same sentence. And "may have spread to liver and lungs". Eek! Even if ther might have been the word "not" in there, I never heard it. We went home, sat in the kitchen and didn't know what to do. We'd never dreamed of those two words together. Do we phone the kids? Do we draw the curtains, a totally daft thought but there it was? It seemed like the end. We'd never thought of dying, we were immortal. They said it was OK to go for a weekend in Paris with Catherine, good to raise the soul, which we did! Then followed chemo every week (usually the same people in the waiting room, Joy got them all doing crosswords) interrupted over New Year by daily radio therapy for 5 weeks, very intrusive of life.
The surgeon said later that the chemo had worked wonders, the radio hadn't done anything. Surgery was 20 May 2013, Then I lived with a stoma bag for a year, another provider of exciting experiences. Go to the loo when you want, just empty the bag. But don't drink home made beer that keep on fizzing in the bag. You don't want it to burst!
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