June 2013
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Day June 13, 2013

Daily affect data 13th June 2013

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

Stoicism: Stiff upper lip: 4

Mood: felt calm ≈ 6

Control: A little control = 4

Discomfort: Moderate = 6

Daily affect data 12th June 2013

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

Stoicism: Wobbly lip: 2

Mood: sad/tearful ≈ 3

Control: A little control = 3

Discomfort: Moderate = 5

Things happen 4, June 1th 2013

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

Things happen 3, June 11th 2013

Apheresis machine UCLH

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

Things happen 2, June 10th 2013

uclh, view from the tower

On Sunday morning I came round without pain but running a high temperature and feeling very sick. To cut a long story short I was admitted to the haematology unit at UCLH, put in an isolation room, pumped full of antibiotics and put under surveillance. On Monday I was scheduled to have my stem cells collected, a process, which was now under threat. You can’t have your stem cells collected if you’re carrying an infection as you store it with the stem cells (SC); when you get the SCs back, you get the infection back. I sweated (literally and metaphorically) through Sunday and into the early hours of Monday morning, was administered more antibiotics and slept intermittently. The only upside to admission was I got to check out the isolation accommodation that I will soon be inhabiting once they return the SCs. The rooms are really nice, new build, well appointed with great views as you are up in the tower of UCLH. The above picture shows the view toward the city of London.

Some levity: things doctors say no.1

I was woken at midnight for some blood tests by the on-duty haematologist a nice young chap who asked me the usual questions about how I felt and ran through the litany of disease and treatment I had endured in the recent past: “any serious medical issues then?”

I took it stoically.

Here’s the data.

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

Stoicism: Grin and bare it 6

Mood: felt subdued 5

Control: No control at all = 1

Discomfort: severe = 8

Hat Index 9th – 13th June, 2013

Beenie Grey

Image

Things happen 1, June 9th 2013

I haven’t updated for nearly a week because it’s been quite a significant one all things considered. I’ll do this retrospectively but by date. Last weekend I had a high-dose of the mustard gas derived Cyclophosphamide, and in the following days a daily injection of G-SCF – a growth factor that stimulates your stem cells and mobilises them outside of your bone marrow to enable collection. By Friday I had successfully self-administered 6 of these stomach-based injections without drama of any sort. I had been briefed by the CNS (clinical, nurse, specialist) at the Mac (Macmillan Cancer Centre) to expect ‘giving birth levels of pain’ by day 7 as the stem cells were forced out of the bone marrow. In my minds eye, I imagined a collective fist-pump from womankind. Saturday came, and so did the pain as waves of pulsating agony radiating from my lower back. I resorted to codeine, hot water bottles and Hail Marys. I survived but it was quite excruciating. I also realised at this point that my discomfort and control indexes were totally inadequate to capture the levels of pain I experienced. I might have to invent a new one. Anyhow here’s the data from Saturday.

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

Stoicism: Grin and bare it 6

Mood: Low spirits 4

Control: No control at all = 1

Discomfort: 10 = worst possible