28. 100 Marathon Club

Mile 25 – gentle hills.

My one marathon a year in the past isn’t a lot compared to many people. Some that I know have run a marathon each weekend, others have run a hundred or more. Once you get the bug, I guess it’s hard to stop.

Putting my treatment ‘marathon’ plan in perspective, I’ll remind you that Multiple Myeloma is not curable, but it is treatable. The ‘finish (for now)’ marker in the plan I have been sharing in previous weeks indicates that I will hopefully get a period of remission before, inevitably, my myeloma stops responding (known as being ‘refractory’) to the treatment, and I then have to go through another round, perhaps with a different combination of drugs, known as another ‘line’ of treatment.

This week we met the team at UCLH, including one of the consultants, and I asked him about the length of remission I can expect. The average is two and a half to three years, but there is a great deal of variation in that, between just 12 months for some, and five years or more for others. There is always the hope that in the remission years, new, more effective treatments may become available.

We travelled up by train, and walked the short distance to the hospital from St Pancras Station. As we walked in, me holding my appointment paperwork, Sue had trouble with the hand steriliser pump, so I tried to fix it with my free hand. It resulted in my dropping the bottle, and emptying most of it on the floor. Still, I like to make an entrance, and we all had sterile shoes from then on.

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Anyone who is squeamish may prefer to scroll down to the ‘lunchtime’ pictures. You should be safe reading downwards from there.

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We arrived with two appointments. My first stop was a ‘bone marrow aspiration and biopsy’, for which we were promptly admitted to a room. I said hello, then pulled my trousers down, as you do in these places. I lay on my side looking out of the window at the clouds, my knees up to my chest, giving the nurse access to my hip bone. This is the best diagram I could find to show what was going on.

I was given two anaesthetic injections, one for the skin and the other for the deeper soft tissues, but there is no anaesthetic for the bone – they just tell you it is going to hurt. The nurse used the green corkscrew device to drill into the cortical bone, then inserted a needle through the hollow centre of the drill to extract some of the bone marrow fluid. After that, she did the same again with a larger drill to cut off a tiny piece of bone. Sue was allowed in to watch, and everyone seemed to expect me to yelp, but I didn’t find it too bad: there was just a dull ache as the nurse applied pressure to the bone, a bit like a toothache but in a different place. Still, it’s only pain, and it didn’t last long.

Of course, I asked whether I could take some pictures for my blog and the nurse kindly showed us all the kit involved.

The nurse carries out six of these procedures per day, and she seemed pleased to chat about it. Perhaps not all her patients are as inquisitive.

It was a long time until my next appointment – with the consultant in the afternoon – and I knew I was supposed to give blood samples at some point, so, after some confusion at the reception desk, the same nurse volunteered to deal with the bloods, since her next appointment had been cancelled. She was complimentary about the big veins in my arms, and revealed that sometimes as she sits on the tube on the way home, she finds herself checking out her fellow passengers’ veins. I suppose it takes all sorts.

While I still had some blood and bones left, we went out for lunch.

We returned to meet my Clinical Nurse Specialist, and to grill her with our long list of questions, mostly about the Stem Cell Transplant (SCT). We will be booked into the hospital’s hotel, The Cotton Rooms, for ambulatory care (where we can leave the hospital between visits), but since the treatment starts at 8:00am on the first day, we might want to book ourselves a room somewhere for the night before. I should be very careful not to catch anything, both before and after these treatments, and so must stick much more rigidly with COVID style isolation. As she put it, she doesn’t want to catch me in Lidl at 5pm. (No more waders for Sue, then.)

Back in the waiting room, we were called for an unexpected appointment with the physio, where we had a long chat about my current level of exercise, and she explained that she is putting together a similar programme to those offered by Vitality / ALVIE that I have been following to improve my core strength. After that, she gave me a couple of challenges / assessments: a sit to stand test, getting up from the chair as many times as I could in one minute (27 – you can try to beat that at home); then a test to see how far I could walk up and down the corridor in six minutes — you can imagine my delight when I was told that I had beaten the previous bloke by 30 metres. I can join her for an exercise class twice a week via Teams, which I will try out next week.

In last week’s blog I explained that the next stage is stem cell harvesting: taking G-CSF to mobilise my stem cells from the bone into the blood, then filtering them with an apheresis machine. We went to visit the apheresis department and meet Artemis. 

Here I met another nurse with an interest in my veins, this lady’s job being to assess them officially. If the veins in my arms were not big enough, the team would need to use some in my legs, which would complicate the process. All those positive comments earlier were right: my arms should be up to the job.

When we go for the apheresis day, again I need to report for duty at 8:00am. The process will take 6 hours or so, then I won’t know for another hour whether enough stem cells have been collected. If not, I need to return for a second day. We have booked a hotel nearby for the nights before and after.

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My consultant had prescribed the G-CSF injections, so our last job was to go and fetch them from the pharmacy. We were given some instructions, and referred to the YouTube videos regarding the administration. I’ll be starting those at the end of the coming week, so I’ll tell you more about the practicalities next time. One nice touch that said a lot about the hospital was the staff member who, on his way home, spotted us waiting at the pharmacy. He came over to check what we needed, and to pester the pharmacist on our behalf. It was very kind of him.

We asked about the best way to travel home after the SCT, and the CSN admitted that, since there are no ambulances for this purpose, despite the fact that I’m likely to be feeling very unwell at that point, my only options are to take the train or ask a friend to pick me up. A friend has already offered to help me out with transport, but I’m sure the difficult part will be predicting which day I will be discharged. We have another meeting booked at UCLH to discuss the SCT, so we will find out more then.

As we returned to St Pancras, we spotted another transport option.

We eventually arrived home after 10pm, which was a long day out for us. I was very tired on Friday, and I found that lazing about the house left me thinking about the treatments to come, and starting to worry about them. 

On Saturday it was good to go and see friends at parkrun, where I helped out as a timekeeper. That lifted my spirits, as did my cycle ride on Sunday. Now, instead of worrying whether the side effects of G-CSF will leave me incapacitated, I’m wondering if it might help me get a PB on a Strava segment.

Next week looks as if it will involve more socialising (with suitable distancing), with a break from hospital visits, which will be nice, before I start using my abdomen as a dartboard for the G-CSF.

Thanks for reading and take care.