27. Negative splits

Mile 24 – Flat and easy.

A negative split is when you run faster in the second half of a race than in the first. It’s not easy to achieve. It helps that your body is properly warmed up after the first half, and, if you manage it, there is a great feeling of empowerment when you finish the race strongly.

Hopefully, I’m about halfway through my initial treatments, counting from the initial diagnosis to the ‘end point’ where I can start maintenance. The first half was mainly chemotherapy, and it has had a big, positive effect on the pain I had been experiencing, while the main event in the second half will be the stem cell transplant (SCT), followed by more chemotherapy. Here’s for a strong finish. 

My Clinical Nurse Specialist at UCLH called to rearrange the introductory consultation about the SCT, so it will now take place this coming week, the same day that I was due to go there for tests, thus saving us a trip to London. As a result, I’ve nothing to report to you on our lists of questions about what is to come. This next visit looks as if it will be a busy one: I’ll start with a bone marrow biopsy, then blood tests, learn how to inject the G-CSF that I told you about last week, and in the afternoon we will meet the consultant. I will pick up the G-CSF (hopefully in a refrigerated pack) and take it home, to administer myself (or Sue might have a go, if she’s not too busy in the pond), before I go there again at the end of August for the harvesting (or ‘apheresis’).

I have seen that some more appointments have been made for me: in early September for scans of my heart and kidneys; then in mid-September for the main event, stages 2 and 3 of the process:

1. Collect some of my stem cells.
2. Zap me with high dose chemotherapy, killing off the cancerous blood and bone marrow cells, but also the good ones, and wiping out my immune system.
3. Re-introduce the harvested cells, known as day zero.
4. Avoid infection for 100 days while my immune system regrows itself.

The high dose chemotherapy involves a drug called Melphalan.

I have been given lists of possible side effects that seem to cover every ailment known to man. I’m trying not to become too hung up on that. I have heard nothing but good reports of UCLH, and I know the team deals with SCTs every day, so I trust they will know what they are doing, and whatever comes up, they will have seen it before. It is important to keep an eye on the goal: to reduce the myeloma cells down to next to nothing, for a long remission period in the future.

The first day of my treatment (High Dose Chemotherapy – aka Melphalan) will be in the middle of September, followed a day or two later by the transplant and the return of my stem cells, so by the end of the month I hope to be on the road to recovery, but it can typically take from two to four weeks. It is helped by my receiving my own stem cells, making this an autologous SCT. Some people need to receive cells from a donor, known as an allogeneic SCT, and they will have a much longer recovery period, since they need to deal with the body’s reaction to foreign immune cells attacking the host (graft-versus-host disease).

This diagram gives an idea of how I can expect to be feeling.

Rather than staying in the hospital room every day from the start, it looks as if I will be offered ambulatory care, which means I can stay at the hospital’s own hotel across the road in the early days, going in daily for tests and treatment. As soon as I start to feel ill, I can move into the hospital, any time, day or night. Sue can stay at the hotel too, while I am there, so there will be some normality, at least for a while.

—oOo—

I have had some good news regarding my blood test results. If you remember, the consultant said that the result in April was “phenomenal”. The results from the blood test in July have come through – they have taken a month to process – and the levels have fallen further. I have definitely achieved the target of reducing my paraprotein by 90% for a “Very Good Partial Response”, which was the criterion for going ahead with the STC. 

—oOo—

I can’t believe I forgot to tell you about my visit to the Macmillan Horizon Centre in Brighton for Reflexology last week. They offer lots of free treatments and courses, and it seems rude not to sign up to some of them. It was my first time, but Jacqui massaged my feet gently, and cared for every bone and tendon. I was asleep by the time she began to work on the second foot. I’m not showing any signs of peripheral neuropathy, a common side effect of chemotherapy, where your toes or fingers go numb. While we were chatting, she told me about a friend of hers, a runner, who had a stem cell transplant as a cancer treatment a few years ago, and who now frequently swims between the piers in Brighton, sometimes on to the marina. It’s so encouraging to hear about other people who have been through the same process and are now leading active lives. It gives me a boost and raises my hopes.

—oOo—

Everyone says that being in good shape going into the treatment gives you an advantage, and so I’m continuing with my daily ‘Pilates’ type exercises, strengthening my hips and core in particular, as well as cycling and walking. I am literally going up a gear on the bike in the garage, working with more resistance and feeling stronger. On Thursday I woke up early and I was in the mood for a challenge, so I set off for a walk up Wolstonbury Hill (14,000 steps).

When I arrived home, Chris called and asked if we fancied a walk, so I said yes and joined him and his dog Lyra to climb Devil’s Dyke (another 8,000). I still felt great after finishing the ‘Twin Peaks’, nor did I seize up on the following days.

I ended the week with another Sunday morning cycle ride, this time 54km (34 miles), which took me two and a half hours, and burned off nearly 2,000 calories. I’m noticing it in my shoulders. I suppose I don’t work them so hard on the turbo trainer in the garage, and they really hurt now.

However, my cake consumption may be an obstacle to my overall fitness. I have thoroughly enjoyed my visit to friends in the village (a lovely Victoria sponge with strawberry filling); seeing another friend in Horsham (‘Rabarberkaka’, a rhubarb cake with custard at the Swedish café in Horsham); then my son Chris turning up with a gooey chocolate brownie on Friday night. I think the company counterbalances the calories by far. 

We also ate out all weekend: a lovely lunch with friends in Slinfold, most of which was fresh and healthy home grown produce, including tomatillos, which were new to me; then a family Sunday lunch at Chris’s house.

I found another second-hand book shop, The Book Den in Burgess Hill, not your usual charity shop. It raises funds for the Burgess Hill District Lions Club. I popped in to see a friend who volunteers there, and who made sure I didn’t leave without buying something. It is set out like a bookshop, and if you can’t find what you are looking for, they have plenty more out the back.

—oOo—

I have had a lot of maintenance work carried out this week, spending as much on myself as I have on the car’s service and MOT. It started with an eye test, and I ordered new lenses – my old specs are a bit scratched. The tests the optician carried out on the backs of my eyeballs showed them to be nice and healthy. 

Then I had three trips to the dentist, for a filling, to replace the crown that fell out, and to see the hygienist, who had trained at a university associated with UCLH, and had further good things to say about it. 

Lastly, a few weeks ago I made a bid in the silent auction at the local ‘Pants to Leukaemia’ charity event. I won the voucher for a haircut, so I am now nice and presentable.

—oOo—

I rather glossed over the scans of my heart and kidneys, both involving the Institute of Nuclear Medicine at UCLH. They will inject me with a radioactive material before running an Estimated Glomerular Filtration Rate test (eGFR) at hourly intervals to see how well my kidneys are working. Then they will inject me again for a multigated acquisition scan (MUGA), which creates a video of the blood pumping through the lower chambers, or ventricles, of the heart. This shows whether there are problems with the way the heart is pumping and blood flow.

That will be two more scans ticked off on Scan Bingo, although I still don’t have a line yet. You can play this at home: complete a row, column or diagonal, and you can write ‘BINGO!’ in the comments below. No need to attach your medical records as proof, I’ll believe you, and I should point out there isn’t a prize. Those of you who are in the medical profession can try an alternative game – tick off the scans you have administered. Good luck!

Thanks for reading and take care.