Joy and Eric's website

Cancer blog updated 07-Dec-2024

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.

07-Dec-2024

Oh dear, more visits to the GP yesterday for wound dressing by a nurse (they all knoiw me, I'm such a frequent visitor) and a doctor. The latter was to discuss my medications, in particular my strong opiate. He said, contrary to earlier advice, that I could have some alcohol while I'm on opium. So I tried a little last night and my head exploded, sorry, no more 3% drink from now on, back to the zero regime. It's great that there are so many zeros available in the shops nowadays. Yet another day of tests and consultants on Monday, there's no end to the NHS looking after me!

25-Nov-2024

There's a lot of talk about "assisted dying" in the news because it's up in parliament later this week. I just see very few comments from those who might be involved.

On another topic, Joy has removed the plasters from my back leaving the stitches exposed. I shall try playing accordion for the cloggies tonight with extra padding under where the straps go. As long as I don't damage the stitches (they're not coming out till next Friday) the satisfaction will be therapeutic. The real test will be playing at the Nottingham Christmas Market at the Castle next Sunday.

21-Nov-2024

Two days ago I went to the local hospital for surgery to remove two suspect "rodent ulcers" from my back. They were discovered only a week ago, the NHS service here is so quick! So two long wounds on my back (11cm and 8cm), we're told to remove the outer plaster later today, and go to our GP for stitches removal in 2 weeks. Being who I am, the concern is that I shouldn't play the accordion for a while - the supporting straps go over the shoulder and back in just the wrong place. But I did try briefly yesterday, it seemed not too bad, but became incredibly painful a few hours later. I hope I haven't damaged any of the stitches!

18-Nov-2024

Two reasons for this entry! Firstly the Guardian newspaper has just phoned up to say that they'll publish my letter on "assisted dying", one of the current news topics, I said to use my actual name. And secondly there's just been a programme on BBC4 radio about the dangers of opioid drugs and addiction, and in particular oxycodone which I have. I really must beware and not get addicted, and fight the drug-induced tiredness and pain more.

Letter to the Guardian:

15-Nov-2024

Well, the new 12-hour painkiller works as such, but I wake up so tired and aching. This morning's trike ride I had to stop for breath even on the easy bits - but it gives you time to chat to unsuspecting passers-by. I am permitted to "top up" the pain killing with some of the previous 4-hour liquid, but so far have avoided that. It's the tiredness, not the pain, that's the problem.

11-Nov-2024

Four-weekly session with the consultant, all test results are good. She was surprised I'd been in hospital. And my opiate painkiller lasts only 4 hours, which means I don't get a good night's sleep. Or get up for a dose at 3am! So she'll prescribe some 12 hour instead. I'll set alarm/reminders for 10am and 10pm.

05-Nov-2024

Oh dear, I'm bad ad blogging. That was one hospital trip described below. But after I'd been out for a week they invited me back in! And I always accept their kind invitation, home is lovely and wonderful but hospital is comforting if you feel seriously rotten. This time they thought I was infectious (they confused my long-standing diarrhoea with gastroenteritis) and put me in a solitary cell instead of a ward. I thought it might be more peaceful than a ward. But no, an IV drip needed regular checking (they dripped 3 litres of water into me, I must have put on weight) and then there were the regular blood pressure and so on tests. Not a peaceful time! But it makes me appreciate home.

Today as well as a shopping trip on the trike I glazed a number of pots and started a glost firing, the first potting for ages. But after that I just couldn't stop crying - don't know why - so went to bed to cry it off. Is it because I know I should do better, but brain and body between then just don't want to?

16-Oct-2024

On Monday's 4-weekly "see the consultant" she didn't seem too interested in my complaints about back pain and general knackeredness. Wednesday 10am phone call "Come into hospital NOW to sort out your pain". So off I go (Jenny was coming round anyway, she gave me a lift in) and eventually got out after four days. 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
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 team 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. That makes life more difficult, I can suddenly change how I feel, and burst into tears (embarrassing when you are in a shop) or suddenly decline Joy's wonderfully cooked meal.

20-Apr-2022
Restarted chemo, this time by injection. The doctor showed me a graph, the cancer had decreased while I was on Revlamid but returned fast when I stopped. Main Drugs to be Daratumumab = "Darzalex" (jab), Bortezomib = "Velcade" (jab), Dexamethasone (pills), 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 every week. 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
I was offered chemo jabs or pills, I chose pills because it seems easier if we ant to go away. Doctor said I'll be on daily Dexamethasone morning pills; 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. 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. Granddaughter Jenna immediately when she heard offered me a teddy to hold, lovely gesture! So it's in the bone marrow in the spine this time, vertebra L3. But the word "cancer" doesn't frighten us like it did seven years ago. And it's definitely terminal, that's now a positive for me..

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 there 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 radio therapy every day for 5 weeks, very intrusive of life. The surgeon who operated later said that the chemo had worked wonders, the radio hadn't done anything. Surgery was 20 May 2013, Thereafter I lived with a stoma bag for a year, another provider of exciting experiences, not all bad. Go to the loo when you want, just empty the bag. But don't drink home made beer that keeps on fizzing in the bag. You don't want it to burst! Stoma bag reversal 17 March 2014.

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Website at chezfred.org.uk

Page updated 07-Dec-2024

Comments and corrections on the website welcome by Eric Foxley