33. Thank the marshals

Mile 30 – Some of the biggest hills so far, then a quiet spell, waiting to see what is around the corner.

Long distance races generally require a great deal of organisational manpower: setting out the course direction arrows, handing out food and water, directing runners to go the right way, and cheering them on. Even the biggest races rely on volunteers for these jobs. So, as you make your way round, be polite and say thank you, even when you are feeling at your worst. Without the marshals, the race couldn’t go ahead.

I hope I don’t cause offence with this analogy: healthcare workers are highly trained professionals while marshals might be given just a quick instruction to make sure the runners turn left at a gate. However, both deserve our thanks and respect, whilst the array of posters on hospital walls indicates that NHS staff don’t always receive it.

I’ll start with my big thank you to the doctors, nursing and support staff at UCLH. They are so dedicated, caring and skilled in what they do. They are not volunteers, but they all seem prepared to work the unpaid overtime needed to keep everything on track.

—oOo—

Here it is at last, the week of the stem cell transplant that I have been anticipating for so long. We arrived at the Cotton Rooms hotel, linked to University College London Hospital (UCLH), on Sunday afternoon and settled into our room. The air conditioning was not working, but we could open the balcony window. Actually it was more of a rooftop than a balcony, fortunately overlooking the quiet courtyard of Mortimer Market which provides ambulance access to the MacMillan Cancer Centre. It might have been a lot noisier if our room had been on the other side of the corridor facing Tottenham Court Road, where the ambulances pass more loudly on their way to A&E. Otherwise, the room is tidy but quite small. I guess that had I gone private we might now be in a Junior Suite rather than a Standard Twin.

On our first night, we found the Franco Manca sour dough pizza restaurant, just across Tottenham Court Road from the hotel, that made delicious pizzas, and followed that with a walk through the very peaceful Fitzroy Square, then two McFlurries.

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On Monday morning we were up early for breakfast, then off around the corner at 08:30 to the Ambulatory Care Unit, for a busy first day. The idea of this ambulatory approach is that I can remain an outpatient for as long as possible, free to go in for procedures and then daily tests, then go out for a walk and a meal, rather than being confined to a hospital room. My first day (Day -1) started with staff taking my bloods, height and weight, then COVID swabs for both Sue and me, and it was soon time for my peripherally inserted central catheter (PICC line) to be fitted. This involved turning the hospital room into a full-on surgical theatre environment, the nurse putting on a gown, hat and gloves and covering me in disposable sheets.

Because I will be having so many blood tests and infusions, this PICC line will save the nurses from inserting catheters every time, thus preserving my juicy veins.

The nurse used ultrasound on my upper arm to look for a suitable vein.

The PICC line was cut to the right length (measured with a low tech paper tape measure) and inserted into my upper arm to follow a vein to a point close to my heart.

The nurse distracted me with chat, then informed me that the line had already been inserted – so I didn’t feel a thing except for the local anaesthetic at the start. After the first attempt took a wrong turn near my shoulder, they found my heart and checked the line position using an ECG.

My bloods showed high creatinine, a measure of my kidney function. The previous eGFR test, a couple of weeks ago indicated that my kidneys were working well, so the nurse explained that this might just have been a sign of dehydration (perhaps after Sunday’s Steak and Eggs breakfast, followed by spicy pizza) and not drinking the usual copious amounts of water while we were travelling here. I was given a litre of saline through my new PICC line (which took two hours) just as a precaution, before the main course, which was the Melphalan high dose chemotherapy, also referred to as ‘conditioning therapy’. As I explained a few weeks back in blog 27. Negative Splits, it works by stopping cells from dividing. 

“Almost everyone who has had a transplant will experience changes in their mouths and/or gut.

This happens because the chemotherapy drugs that are used attack and damage cells that divide quickly. This includes cancer cells, but also bone marrow cells, hair cells and those cells that line the mouth and the gut. This damage usually begins a couple of days after your transplant but can start earlier. These changes to your mouth and gut are called mucositis and are caused by your conditioning therapy.”

Blood stem cell and bone marrow transplants: the seven steps booklet and download

You know they are ready to start when they take the ice lollies out of the freezer. In order to protect the mouth, the patient sucks on these to cool and reduce the blood flow in the mouth, so the Melphalan can do less damage in that area.

Lastly, I picked up my bag of medications, which were in line with the medication chart that the pharmacist supplied me with on Thursday last week. I had already worked out which drugs are due each mealtime and drawn up one of my tick lists (earning me the admiration of a few of the nurses, who like an old-fashioned paper chart).

The return to chemotherapy drugs brought back some of the side effects from which I have recently enjoyed a two month holiday: light headedness, sensitivity to sharp noises (such as the kitchen staff stacking plates at breakfast time), and hiccups. Nothing worse, so far, and even though the Calippos were rather strong in flavour, I recovered from that and was able to eat the hospital meals and the cooked breakfast.

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Tuesday 19^th September was my re-birthday, Day 0, when my stem cells were re-introduced. The Melphalan had finished its work, and my harvested cells could be re-introduced, without being prevented from dividing. 

So now I am Benny version 2.0, a major system upgrade, but probably with lots of the previous bugs (although hopefully not so much of the Myeloma one).

My two bags of stem cells arrived in deep freeze in a ‘shipper’, from which they were taken, one bag at a time, and thawed in a water bath to room temperature. The whole process was tightly controlled, with staff double checking that the stem cells were mine and no one else’s, and logging every step. The nursing team was great, reassuring me as I lay on the bed. The stem cells don’t go through the PICC line, they are re-introduced through a catheter, a larger size than usual to help with the volume.

It was about an hour and a half before the second stem cell bag was finally flushed with saline to make sure none had been missed, like that last baked bean in the tin.

A preservative called DMSO (dimethyl sulfoxide) is used to protect the frozen cells during storage. I was warned that I might experience some side effects or allergic-type reactions from the DMSO when the stem cells were infused, such as nausea, vomiting, a high temperature, skin flushing or feeling generally unwell. I escaped those symptoms, and we were able to go for a walk as far as Regents Park, but by the time we returned I was feeling very tired, and had lost my appetite.

Sue can’t stop thinking about the Jolly Green Giant. Once thawed, DMSO releases a strong sweetcorn-like smell, especially through the breath. It wore off after a couple of days.

And that was it for the medical procedures. We had a chance to speak with one of the consultants during a ward round, and as he said, from now on, we are all watching to see what will happen. I can expect fatigue, and I can hope to avoid infection, but it seems likely I will have some bad side effects, at which point I may be admitted to a hospital room.

We bumped into another of our teammates who was on Day +6, and he said I should make the most of my appetite and strength for the first three days. He now finds it hard work to walk the few hundred metres from the hotel to the hospital.

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Day +1 (Wednesday) and the first change I noticed was when I tried to have my usual facial shave with an electric razor: there was no growth to shave off. The hair isn’t falling out yet, but it has stopped growing.

We were allowed a lie in before blood tests at 10:30, then we were set free, and managed a walk through Fitzrovia to Regents Park to look at the Frieze exhibition.

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I was just ordering lunch at Greggs when I had a phone call with instructions to return to Ambi-care in the afternoon for more fluids. My creatinine levels have been high again, so as well as drinking the best part of three litres of water in the morning, I had another half-litre from a drip. 

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On Thursday (Day +2) my bloods were fine, so we were free to go for some long walks, and found the BBC HQ, Regents Park again, and, further east, the Brunswick Centre, snapping plenty of pictures on the way; that’s 18,500 steps for each of us. Again, I didn’t have much appetite in the evening, but I ate well during the day.

Sue, among her many talents, is a super-recogniser. As we walked by the BBC she spotted a lady sat on the steps and said “I know her”. After mulling it over all day, she looked up Doon Mackichan, the comedy actress, and confirmed that she had appeared on Women’s Hour the same day. She never misses a thing!

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Friday (Day +3) was similar, nothing to worry about in the bloods. We saw a consultant (a stand in, because there have been junior doctor and consultant strikes this week), who reassured us that I have done well so far, and to expect things to go downhill for days 5 to 10, as my neutrophils and white blood cells disappear for a while, before the stem cell engraftment when they will start to recover again. More on that next week.

We ate fish and chips at the Fitzrovia pub, then went for a good long walk around Soho, before calling it a day.

Thanks for reading and take care.