blood and bones

I was in at UCLH this morning, today was the big day, I would be receiving the stem cells collected back following  a high dose of melphalan – another mustard gas derivative that is nasty and evil enough to kill of lots of the remaining myeloma cells.

I cant describe to you the psychological import of this, I’d been working toward this point since I was diagnosed in November last year, and the last couple of days had been particularly difficult, anticipation, fear, sleeplessness.

I had the usual round of blood tests and waited for the doctor to drop by to sanction the chemo; I was called into a side room and waited. Unusually, the duty doctor was accompanied by the esteemed professor; something was wrong here. So what transpires is this, the lab had used the wrong preservative on the stem cells they’d collected last week. All 8.7 million of them were tainted and I will have to go through the stem cell mobilisation and collection process all over again. For some sense of the horror of this read here, here, here and here.

In addition my latest MRI results are ambiguous to my interpretation anyhow and I’ve asked for some analysis back. Some of the lesions appear to have stopped developing but others have appeared.

This is very distressing.

Here’s the data:

For detailed description of parameters see the Data Methods part of this website

Stoicism: I don’t want to talk about it: 1

Mood: very low ≈ 2

Control: No control at all = 0

Discomfort: moderate = 4

I was discharged from UCLH at 17.00 hours. It was sobering, I received excellent care, but the psychological impact of being in the tower was quite significant. I have an incurable cancer, it’s quite likely that at some point in the future (hopefully many, many years into the future, possibly never), I’ll die here.

Leaving the Haemo ward I was stopped by a patient at the lifts who asked if I was off, he was also hooked to a drip on a portable stand and had obviously been off for a toddle about the wards for some exercise.  I was I replied. “Do you know anything about stem cell transplants?” he asked, before going on to explain that he had leukaemia, it had relapsed and he was in preparation for a donor transplant. Now all this sounds very innocuous and it’s the kind of routine conversation that you’ll find between any cancer patient anywhere. I replied that I believed that stem cell transplants for leukaemia were to all accounts practically a cure.

I should at this stage mention a few odd things about the person I was talking to, I noticed that hovering a few feet away from him was a policeman, he was also accompanied by a lanky friend. There was a strong smell of beer and cigarettes. He spoke quickly and in an overexcited way. My inner urban danger detector went off the scale….

“What’s the matter with you” he asked, I told him I had myeloma and was due a stem cell transplant too. His lanky friend at this point chipped in, “myeloma’s incurable even with a stem cell transplant”, which is true. At this stage my new friend said “oh you’re going to die then”, before turning round and continuing down the corridor. The policeman shook his head and followed after him, with his lanky friend. It wasn’t quite the departure I would have planned for, and in fact totally freaked me out compounding my fragile mood.

Here’s the data:

For detailed description of parameters see the Data Methods part of this website

Stoicism: I don’t want to talk about it: 1

Mood: very low ≈ 2

Control: No control at all = 1

Discomfort: moderate = 4

After a long discussion with my medical team, preceded by multiple blood tests, we decided to proceed with the stem cell collection; a huge relief, as I was also feeling a lot better. The Haemo team think I suffered a strong reaction to the GSCF injections, which would account for nausea and high temperature rather than an infection. This is good, even though the entire process had been extremely unpleasant.

UCLH as you’d expect from a university hospital is a campus spread throughout, Gower, University and other streets. What I didn’t realise is that the different centres are connected up by underground tunnels. It’s all terribly symbolic, wheeled into the underworld by the hospital porter we crossed the Acheron (river of woe), Cocytus (river of lamentation), Phlegethon (river of fire), Styx (river of unbreakable oath), and the Lethe (river of forgetfulness)….well not really we passed under University Street and Huntley Street all very interesting nevertheless.

Surfacing at the Mac (Macmillan centre), I was wheeled into the apheresis ward and prepped for my stem cell collection. Without wishing to get to technical, they hook you up to a large noisy apheresis machine which collects and processes your blood, removing the stem cells and then returning it to you. It took around 3 hours and the minimum collection target is 2 million stem cells. I managed 8.7 million, which is a lot apparently and everyone seemed jolly impressed. The actual process isn’t at all painful but I did suffer a bit of nausea toward the end. The collected stem cells are now stored in the fridge and they’ll be returned to me next Tuesday. Yes momentous news, I have received confirmation that the actual transplant would take place the following week. This is a bit sooner than I expected…I found my stoicism wavering. UCLH also decided to keep me in overnight, just to make sure. I took some paracetamol and managed to get a good nights kip. Here’s the data:

For detailed description of parameters see the Data Methods part of this website

Stoicism: Stiff upper lip: 4

Mood: sad/tearful ≈ 3

Control: No control at all = 1

Discomfort: moderate = 5