16. Early bird entries

Mile 13 – Undulating.

Once you finish a marathon, the organisers are keen to sign you up for next year with a discount deal. I have often forgotten the pain surprisingly quickly and been tempted by the thought of signing up straightaway to do it all again next year, and to save £10. I had coffee with a friend from the running club: a couple of weeks ago she and another member of the club completed The Lap, a 49 mile race around Lake Windermere, complete with steep climbs and ‘technical’ rocky descents. She had been finding that marathons were not enough of a challenge. Even though she missed the early bird spots, she has signed up again for next year, just a few days afterwards.

My discount dilemma concerns the next stage of the process, the autologous stem cell transplant (ASCT). I am due to go to University College London Hospital (UCLH) and I have a choice between going private or using the NHS. Vitality have been paying for my private care throughout and they have offered to give me £7,500 if I choose to use the NHS, thereby saving them, no doubt, tens of thousands.

I consulted the Facebook UK Myeloma support group and learnt a lot from several patients who have been treated at the same hospital. They all recommended taking the money; the NHS treatment option seems to be first class.

As mentioned in an earlier post, during ASCT I will be given high dose chemotherapy to kill off any remaining cancerous stem cells, unfortunately along with the rest of my immune system. During the few days before the treatment takes effect, I am likely to be able to go outside. My myeloma buddy told me he went out for a meal with his family at that stage. The NHS at UCLH offer the option of ambulatory care during those early days. They recognise that it is expensive to keep someone in a hospital bed during that time so have built their own 4 star hotel next door called The Cotton Rooms where patients and their carers can stay. There is an emergency button in each room directly linked to the medical team, who remain in constant touch, and Sue could have a few days in London as part of the deal.

On the other hand, the private hospital rooms at UCLH are like luxury hotel rooms and may have better food and wi-fi, so I could just spoil myself. I’ll let you know what I decide.

I have not had space to tell you about my medications in the last couple of posts. The meds for this mile are the supporters, the ones dealing with the side effects from the main chemotherapy drugs, and I take most of them with breakfast. You can see there are quite a few.

I start with Lansoprazole, thirty minutes before food, which provides stomach protection on the two days when I am taking Dexamethasone. This week I have been told to take it every day, since I am taking Prednisolone on the remaining days. The pharmacist pointed out that I am on lots of steroids, something I tend to forget about as I’m just muddling through. I hope there is a plan to help wean me off them at the end of the induction treatment.

Twice a day I take Apixaban to minimise the risk of blood clots. Although this gives my blood the consistency of paraffin, I haven’t noticed any problems when I have cut myself shaving. My platelet count is currently 280 x 109/L well within the 150 – 440 normal range, and they are working well to heal any scratches.

I also take Acyclovir twice a day, to minimise the risk of viral infection while my immune system is compromised.

Since starting Zoledronic Acid during cycle 2 back in March, I have been taking Adcal, calcium tablets. Zoledronic Acid inhibits the action of the osteoclasts as they destroy old bone, and a side effect is a reduction in the amount of calcium in the blood. These (big) tablets are to replenish the calcium. They are chewable and taste a bit lemony.

Vitamin D. These weren’t specifically prescribed by the pharmacist but the medical staff at the hospital recommended that everyone should have them. They help make up for not going out in the sunshine enough.

I haven’t had to take many Metoclopramide but they are anti-sickness tablets, there in case I have trouble with the other tablets. Also in the gastro-intestinal department, I have an arsenal of Molaxole (laxative) and Immodium (anti-diarrhoea) to keep the plumbing in order.

Piriteze, an antihistamine, is there to help with the urticaria rash around my neck and face, and I have already told you about Fexofenadine in blog 12, a much stronger version should I need it. I still sport a red neck and face which make it look as if I have been out in the sun, even though I haven’t. Well, perhaps I have, a bit, in this good weather.

Lastly, when I need some pain relief, I have Paracetamol and Co-codamol. I’m not to take Ibuprofen because it is toxic to the kidneys and my kidneys are busy enough, thank you.

This last week started well and for the first couple of days I felt invincible, doing my stretches, exercises and cycling. Sure enough, by Wednesday I had overdone the upper body exercises and pulled a muscle in my back, making it hard to turn over in bed and to stand up from the sofa. I seem to be recovering now, nearly a week later. It hasn’t stopped me from doing things altogether: I can still drive, and I have managed a trip to the beach, and some longer walks in place of cycling. However, it has interrupted my keep fit regime.

My medical team ask me to report any side effects and I feel I have become something of a hypochondriac, worrying about every little ache and niggle. My left foot is a little swollen on the top, perhaps as a result of the longer walks. A particularly nasty common side effect is Peripheral Neuropathy, where the hands and feet feel tingly, like pins and needles, with a loss of feeling, resulting in permanent nerve damage. Having not had it, I’m not sure just what it would feel like, and so I find myself worrying about my foot. I’ll discuss it with the team this week.

Sue has been to visit her mum over the weekend, travelling up to Shropshire. She hadn’t been there since November, thanks to my rash and viral infection interrupting her planned visit at Easter. I like to think I have given her a good foundation in the caring profession, so she was able to help out while she was there.

My son Chris came to help me with some gardening while Sue was away, and brought his dog Lyra along to help. We were preparing for a BBQ to celebrate my sister Liz’s retirement. Congratulations, Liz, enjoy your 7 day weekends.

Also this week I enjoyed a technical challenge, digitising a friend’s old Super 8 movies. I have my parents’ projector and screen. The projector has a small dial to control the speed, with a range of 17 to 22 frames per second (fps). I tried using my Canon DSLR camera which records video at 25 fps, but the synchronisation was out and I ended up with a black bar slowly moving up the screen. After trying a few other cameras, I found the best solution was the camera on my phone that records at 30 fps and doesn’t flicker too much. That should keep me occupied for a while, working through his thirty-odd reels.

I completed the same exercise last year, recording my parents’ old films. So, to finish off, here is Liz as a baby in Sweden in 1955, along with my mum and dad, and mum’s family. Some of my Swedish relatives might recognise themselves as children. Enjoy your retirement, Liz!

Thanks for reading and take care.