191. Plus ça change encore une fois

I hope my A level French has survived correctly. Regardless, I’m stuck in a gigantic hamster wheel and peddling as fast as my legs will go and getting precisely nowhere.

1. My joint and bone pain is getting worse. I have to be constantly on the move to ensure something doesn’t seize up. But  catch 22 - I don't have the energy to be constantly on the move. Catch 23 - I don't have the energy because of the muscle pain. Answers please on a postcard.... No, don’t bother. I know the answer.

2. My GP thinks Rheumatology is dealing with it. Oncology thinks either my GP or Rheumatology is dealing with it. Rheumatology thinks either Oncology or my GP is dealing with it. Between them, they have created my hamster wheel.

3. I received a summary from Oncology to my GP. Lovely Dr E wrote: ‘Janet has undergone a rheumatology phone assessment and we are appreciative of this. Janet is now utilising Voltarol for her joint discomfort, this hasn’t immediately provided relief however she wishes to persist with this over the next few weeks.’ (Her punctuation). Wtf. Am I meant to bathe in the stuff? Which joint do I focus on for the prescribed daily use of Voltarol? My fingers get a free dose when I’m massaging my knees but there are a lot of joints left without this ineffective treatment.

She then goes on to say that, if it gets worse, ‘we will discuss further with rheumatology whether a steroid injection would be appropriate.’ Another wtf?? Which joint has the dubious privilege because it can be bloody painful. Maybe I’ll get one in each finger joint. 28 joints plus my wrists. To see in writing that the solution to all this seems to be a tube of Voltarol doesn’t quite capture the severity of the problem and I’m back to thinking maybe I’m being a bit of a wuss. Try telling my swellings that.

4. Meantime I do my exercises. I have even planned on going for a swim and have 4 M&S costumes to choose from. I’d forgotten how badly M&S swimsuits are designed, cut up the thighs to elongate the legs and slip neatly between your buttocks. Ugh. That’s two ruled out immediately. That leaves me with the post-surgery swimsuit that’s actually quite nice and cut respectably across the thighs. Do I go for the size 12 I can just about squeeze into and risk my weight creeping up further so I can’t get it off OR do I buy the size 14 that is marginally easier to get off but is too loose around the boobs (or boob - if I had two, I might manage to anchor it but it’s impossible with only one and an aqua knitted knocker).

I have reservations about swimming as it will be only the second thing I do straight out of shielding. Is it safe? Equally important, how do I get out of the pool after I’ve swum a mighty single length (if I’m lucky)? The steps are vertical and you need to rely on hand and arm strength to haul yourself out.  What if I can’t get out lol??




5. Quite early on I promised myself I wouldn’t slip into pity parties. That did not go down well with my therapist! Anyway, this is my pity party so - sorry but tough! As the late and great Lesley Gore sang: ‘It’s my party; I can cry if I want to...’ Where that came from when I can barely remember the title of the last book I read is a mystery but I think Dennis would approve. It was Murder on the River Usk and it was pretty bad; not recommended.

190. The comfort of chocolate

As the 10 stone mark creeps ever closer, AND I have just ordered a new swimsuit online in size 14 as there is no chance of getting my size 8 cossie over one thigh, I decided to fill my time with investigating suitable exercises that might flatten a tummy. Armed with a Cadbury’s Time Out (I thought the name appropriate) and having been instructed to put aside any ‘sodas’ or ‘fries’ but not chocolate (I like this lady, or am I missing her point?) I watched, slightly appalled at what might be expected of me. The exercises involving pressure on the hands are out. The exercises involving bending the feet are out. Anything lying on a mat is out - I shan’t be able to get up again. She completely lost me when she described pain as “motivating.” To what? Reach for the Voltarol? Anyway, I have concluded there is one twisting exercise I can do standing up. You are meant to keep your feet together but I’d topple so I can stand feet apart and, arms stretched out at shoulder height, twist sideways repeatedly.

It’s a start. The gym opens next week and I don’t want to give up my membership. So long as I can drive and it’s safe to hobble to the pool. Maybe I can go swimming a few times a week. Maybe....

I survived Monday intact. Just a bump on the back of my hand where attempt #1 failed to cannulate me. The hospital wasn’t buzzing but it wasn’t much less busy than pre-pandemic. Everyone was masked though I saw no signs to instruct us, In fact, I did see one young woman sitting maskless but no one was going anywhere near her - maybe that was her purpose. Things were marked out clearly and there were signs not to enter particular spaces and I watched staff in the corridors step aside to allow people to pass without encroaching on these areas (mostly round the reception areas and nurses’ stations).

Emma drove me there, a somewhat circuitous route but she knew what she was doing so I kept quiet. What did I care? I’d taken my lorazepam lol. Only 1 this time. The 30 minute treatment took 70 minutes but that was the nurses faffing around. They are lovely and I would never dream of criticising them but timekeeping isn’t a strength.

The sandwich lady appeared, followed by a tea lady who made my first drinkable St James’s tea. Challenge: how to consume either when masked. I tried lifting my mask above my nose but was blinded by that so I resorted to hooking it under my chin. As a result, much of the interaction with the nurse was with me mask-free But I reckon she was confident I was a safe bet as I’ve been shielding.The other problem was how to reach my ‘lunch’ when it was on my right and I mustn’t move my right hand. Hmm.

And here it is. A little bag of pure acid dripping into my veins. I wonder if it would strip the floor tiles. When it goes in, you can feel it flowing through the lower arm because it’s cold, but not beyond the elbow. Maybe it’s warmed up by then.

Tuesday I felt fine. Wednesday I just wanted to sleep. Thursday I noticed my joints are much worse, especially my hands. I hope it’s not back to square 1. I’ll be cross. However, to compensate, the sun came out so I sat in a windy garden, plugged into my iPod but still plagued by construction noise. It’s hardly surprising when they are this close, maybe 10 metres away on two sides. Big sigh..

Their weeds. Ours aren’t quite so high.

Rapid progress. They seem to be an awful lot closer as they gain a bit of height!

However, with the gym open, and after 1 August, at least I’ll be free to get away from the noise for part of the time. Roll on August. Why August 1? It makes no sense. 6 July for the country. 1 August for the shielded. Are they leaving nearly 4 weeks to make sure all those people flocking out of their homes don’t infect themselves again? I decided I’d break ranks and I’ve booked a hair appointment for the 27th! Oooh, what a rebel.

189. Hospital looming

I think regularity and familiarity don’t breed contempt so much as a sense of resignation - ‘ok, I did it last week, I can do it again.’ Have a 6 month break and things change. Having struggled my way through chemo and sundry other treatments off the oncology menu, I face my 4th zometa infusion on Monday and I feel a bit like I’m starting all over again: hollow feeling at the pit of my stomach, surges of anxiety, a sense of dread. The only thing I don’t have is the accompanying loosening of the bowel. Living in a state of perpetual constipation, that’s one symptom I’d fairly happily put up with.

Thinking ahead and wishing to reduce my time in the hospital to the minimum, I’ve been to my medical centre for my blood test. I made sure I got the paperwork 6 months ago after that disastrous effort to get blood out of me that involved almost 4 hours for a 30 minute treatment. Not again. This will run smooth as clockwork. Blood results on screen, no delay in setting up treatment, in with the cannula and away we go. Out in 40 minutes. That’s the theory. Let’s see what happens.

Martin Mucklowe in creepy character

In the meantime, I got a delightful shock on Friday to receive a personal message from Martin Mucklowe. If you’re a fan of the brilliantly-understated comedy “This Country,” you’ll recognise the name - the appalling father Kerry adores and makes excuses for. He comes out of prison and she has such dreams of a life with him; but he just gets her into trouble and lets her down. Not a nice character. He’s played by ‘Kerry’ the writer’s real father, Paul Cooper, and Trina follows all of the Coopers on Instagram.

Paul Cooper, normal human being

She’d asked if they’d send me a message to buck up my spirits before Monday’s treatment - and they did!! I got a 2-minute video from Martin Mucklowe, the first minute wishing me well and boosting my morale, the second minute slipping into the salacious which was very funny but a bit creepy. Once I’d got my jaw back from the sudden drop, I laughed so much. Then he and Daisy-May were on Celebrity Gogglebox last night and it was just such a relief to hear his well-educated voice with its distinct West Country accent rather than the seedy Martin voice! I’d love to post it here but the language is a bit iffy to say the least but here’s the proof of his kindness:

Some people remain unaffected by celebrity culture and are normal and generous human beings. I absolutely loved it. Thank you Paul and thank you yet again, Trina. How you work these little miracles is beyond me.

Visiting the medical centre was my first time actually entering any premises since mid-March. Apart from the fact that the car wouldn’t start in the car park, it all ran smoothly. But it struck me that those of us who have been shielded have missed out on one essential - we don’t instinctively maintain that social distance. I entered the entrance to the centre where a woman was on the only seat, playing with her phone. I started to read the large notices about what to do but there was nothing about reporting arrival so we struck up a conversation. I asked about masks (yes, they were required) at which point the woman raised her mask and I put mine on but wherever I stood, I set off the bloody alarms again or opened the automatic doors. It was like a comedy. I should have just stood outside but it was cold. When the nurse came for me I was at the car, ringing the garage to find out why the car wouldn’t start (I had it in Drive, not Park - I was mortified but I am so out of practice). So I shot back in and after that just followed. Mask on, hands gelled, no touching any doors, three attempts to find a vein and three lots of blood taken, then follow the nurse out, again not touching any doors. If a GP practice is like that, what will the hospital be like??

I am doing my exercises when I remember, but it usually works out at twice a day, as instructed. What I don’t manage is the anti-inflammatory gel three times a day, possibly because it feels like I’m using way too much. Even at twice a day, I went through a whole tube in under a week. I’m overdosing on Voltarol! However, I have noticed that it’s taking less time to get my fingers into working mode in the mornings so something is improving.

Last Sunday, I opened Cafe le Brun and entertained Marilyn and Kiera inside my double garage. It was bloody freezing and, once it started raining, it became way too cold. I must dig out an electric heater for my next entertainment. It was great to meet up with friends, more for the different faces than anything, and very strange not to hug. We dutifully maintained social distance over Jamaican ginger cake (thanks to Marilyn) and hot drinks but, when we were admiring photographs, we just forgot about the 2 metre rule! I think the problem is just not having these things built into our social behaviour by months of practice. It’s certainly not a cavalier attitude. We’re way too old to flout the rules lol.

Speaking of ginger cake, my weight creeps ever closer to 10 stone. Two years ago, I would never have dreamt this would be possible. I’m three and a half stone heavier than I was during chemotherapy! So this week, I faced with heavy heart the need to order SIZE FOURTEEN jeans!!!! There’s no escaping the fact that I am distinctly matronly now. I ordered 12 and 14 and I could just do the button up with the side 12. They weren’t uncomfortable but I wouldn't be able to sit unaware of my tight jeans. The 14 was a bit loose but, if my weight continues to creep up, I will grow into them so - I’ve decided I’d better keep both pairs. My first ever size 14 clothes, apart from pjs when I always order a 14 as I don’t like feeling constricted by nightwear. Dear lord. I’ll have to buy 16 in pjs next! Another first for me. WeightWatchers here I come. The problem is, I simply don’t understand or care about calories. I’ve never had to. Lucky, wasn’t I. Or maybe not. If I’d had some fat to lose, I might not have ended up with this mess of joint and muscle pain. Heigh ho. Swings and roundabouts.

188. Oh dear...

I am slightly mortified to have to say that today I received my first Government Support Package. Dennis had strict instructions to thank the deliverer and ask them to take it back but he forgot till it was too late.

I’m now the proud possessor of enough shower gel for 2 showers, a toilet roll, enough carrots for 6 months and various canned goods, including Baxter’s Chicken Broth which I’m tempted to try. It’s not a very healthy diet. Down the bottom, I discovered a Fray Bentos tinned pie but it’s cheese and onion - ugh. I’d forgotten all about these staples of my student days and, had it been a steak pie, I might well have given that a try just to reminisce.

It’s impossible to stop the parcels unless I reregister (third time) on the government website and tick the box saying I am able to access food. But if I do that, I lose my priority slot with Sainsbury’s. I’ve rung the council coronavirus helpline and they say it will be ok but it was their email that instructed shielded people to go back and reregister to make sure we retained our place on the vulnerable people list the supermarkets use. Huge sigh. Meantime, I’m trying to get someone local to pick it up for the Otley Food Bank, though I might keep the soup!

I had a lengthy consultation at last with Dr W, a consultant Rheumatologist at Chapel Allerton Hospital. I think the oncologist must have given them a prod and she was very reassuring and pretty certain of her diagnosis, after loads of questions. She said that most people my age have a level of osteoarthritis which is disguised by their general level of fitness but that chemotherapy will have taken its toll on my body, particularly because of my very low weight. Ok, it did go down to 6 stone 3 but she said I am “a tiny little thing” and had little enough muscle mass before chemo started. Basically, I’ve lost something or other in my tendons (some kind of -poenia) which has left my joints overly exposed and that’s why I’m suffering. I can’t tell you what a relief it was to know it is REAL. It’s a vestige of my childhood. I can hear my mum saying things about me ‘putting it on’ and, deep down, I still feel like a performer, a whinger or a hypochondriac if I express any pain or mention my symptoms. So I kind of feel vindicated - I’m not putting it on when I say there are times in the day when I cannot use my fingers, when my knees will give way etc etc.

I can safely have my next zometa infusion, which is a relief because it’s a treatment I really need to prevent any cancer spreading to my bone marrow. That’s Monday 13th and I’ve already checked - I have some lorazepam left! It will be strange being on my own and, even worse, I must wear a mask at all times. I’ve practised and 1. My glasses steamed up every time I exhaled and 2. I feel claustrophobic and a bit panicky. However 3. I shall have taken a lorazepam so I shan’t care :)

Back to Dr W. Once the hospitals lift their lockdown, I shall need to see a physiotherapist and an occupational therapist (that was one career I seriously considered at one point at school lol. Me!!). Meantime, I have to douse my feet, knees and hands in anti-inflammatory gel three times a day. If I don’t notice an improvement in 2-3 weeks, I need to try a different type until I find the one that suits me and she ‘promised’ I will find one. I also have hand exercises for 3 times a day and leg exercises which are very gentle but leave me utterly exhausted and with back ache! I am laughing as I type this, by the way. Oh, it won’t go away completely so I won’t recover my former level of fitness (A few people might laugh at that idea) but I should be able to get back to tai chi. Just no marathons from now on. Shame :)

Yesterday, I very slightly infringed regulations by entertaining Anne to a cuppa and cake socially distanced in my empty garage (the car’s not back from the repair shop yet). It was drizzling and windy, plus quite noisy so impossible to sit outside. On Sunday, the day before I’m allowed, I shall be entertaining the three Cake Eaters socially distanced in my garden (or in my garage again) so my head will be spinning with all this social contact.

Talking of noise, I was a bit taken aback to look in a different direction out of the bedroom window and see how close the building is now. This young man is building at the back of my neighbour’s garden, the houses being about 7 metres from her fence so this is the tree outside our bedroom and then the conifer which is part of our boundary - there’s no sense of perspective but he’s about 16 metres from us. Convert him into bedroom windows and it’s so bloody depressing. Then I look the other way and see this: a roof has gone up on one of the houses further away. They will get closer and closer. Aaaargh!