30. Bananas at the finish line

Mile 27 – There were some hills, but I seemed to have the wind behind me.

There are usually some goodie bags waiting for you at the finish line of a race. Some of the best I’ve known had chocolate bars, but by far the worst was what I thought was chocolate, but turned out to be soap. Bananas are a staple, you always get those, I suppose you might need to replace some potassium.

Last week I left you with a couple of cliffhangers – how would the G-CSF injections leave me feeling, and how would I cope with apheresis?

The G-CSF instructions came with a long list of side effects to watch out for: some mild, such as headache and bone pain (as the stem cells burst out of the bones and into my bloodstream), to be treated with Paracetamol; others such as allergic reaction or enlargement of the spleen, requiring an immediate trip to A&E. Having followed the UCLH Pre-habilitation Circuit Training physio routine religiously on Sunday and Monday mornings, I was aching so much from the exercise that I barely noticed my bones hurting, and, I’m glad to say, nothing worse bothered me.

Sue and I shared the treat of poking needles into my abdomen, taking turns, and I should point out that Sue was the first to draw blood. By the end of the four days, we were becoming quite good at it, and it looked as if a shotgun had been fired around my belly button.

The syringes needed to be refrigerated until just before we used them, but we were allowed to keep them out of the fridge for a few hours while transporting them. On Monday we travelled up to London to stay at a Premier Inn, ready for the 8 am start on Tuesday, only to discover that we didn’t have access to a fridge. It wasn’t a problem for Monday night’s jabs, but we had two extras for use on Tuesday night, in case the apheresis (the stem cell collection) was not successful, and we needed another go the next day. Those extra syringes had to be kept cool, so I called UCLH, and they quickly solved the problem — I could drop them off at the hospital and keep them in their fridge, next to the milk, I guess.

We spent the rest of the afternoon walking around the Tottenham Court Road, up to Oxford Street, and around the side roads, familiarising ourselves with what will be our second home during the stem cell transplant in a few weeks’ time. So now we have some idea of where to find restaurants with outside seating, and where to buy ready meals and snacks. We were struck by how quiet the roads were, both in terms of free parking spaces, and the silence of the electric vehicles. Both of us were exhausted when we returned to our room in the early evening, and we fell asleep way before the end of “No Time to Die” on the TV.

—oOo—

Tuesday morning, and after a restless night, I was up before 6 am, Sue following quickly behind me into the shower. We were first to breakfast, and I made a point of having a milky meal, with both cereals and a glass of semi-skimmed, to boost my calcium levels for the day ahead. We picked up the G-CSF from the hospital’s fridge with no trouble — we had both suspected we would never be able to find it, or prove it was mine — then checked in at the Apheresis Department. While waiting to sign in, I was first to work out the pattern on the floor in reception. (Answer at the end.)

There were the usual blood tests to check my ‘blood count’ was high enough to go ahead. I scored 20 (I’m not sure out of what), while the minimum threshold was 12, so I was okay, but two other patients who came along at the same time were rejected. They both had to return at 6 pm to have further G-CSF jabs as well as Plerixafor, a powerful injection given by the nurses to boost the stem cell production. Apparently, that costs thousands of pounds, to the extent that, for at least one of the patients, the hospital had been in touch with his own GP to confirm that his surgery would pay. That’s why they give us the G-CSF to inject at home: it’s cheaper! They were both going back for another attempt on Wednesday.

I didn’t mention last time that I have lost two and a bit inches in height. I’m now 5 ft 8 inches, when I always used to claim to be 5 ft 10 and a half. I guess that is a side effect of Myeloma, or maybe we just become shorter with age.

Past the first hurdle, I paid one more visit to the WC, before being paired up with my Cell Separator apheresis machine, “Lev”, with whom I would share my blood for the next four hours.

A couple of weeks ago, some of you reported feeling queasy after my detailed description of the bone marrow biopsy. Sorry, that was not my intention, I just find that if I treat this process as if I am merely a reporter, I can forget that it is all happening to me. This time the description shouldn’t be too bad for you.

We met another sister with a thing about veins. She almost swooned at the one in my left arm, described it as “juicy”, and said that would be ideal for the larger, metal needle for withdrawing my blood, especially as it was not my dominant arm. Because it was metal, it was vital to keep the arm straight: a lot of damage could be done if I scratched my ear with that hand, plus it would interrupt the flow of blood. That arm was placed on a pillow, and I had to be vigilant (even when I fell asleep). To allow me some movement, the smaller ‘return’ cannula was inserted into my right forearm, four inches above the wrist where there was no risk of bending.

The sister explained how the Cell Separator works. There is a centrifuge inside (as I showed you in last week’s post), spinning the blood around faster than Kylie Minogue. The red cells are heavier, so they go to the outside, while the plasma is lighter and stays in a layer on the inside. The red cells are dark red, the plasma clear. In between, in an orange layer, are the stem cells. The machine is very clever and works out roughly where the stem cells lie, but then the sister has to intervene to precisely identify the right shade of orange. Sue looked through the hole in the machine, and although the image was rather flickery, she could see what the sister meant. Once set, Lev began to extract stem cells from that orange band, and to collect them in a bag.

Lev would soon clog up if my blood was untreated, so part of the process was to introduce an ‘anti-clotting’ agent called ACD-A. It’s all very well putting that in for the benefit of the machine, but since all my blood was to pass through the machine two and a half times during the session, it would also end up in me. The side effect of ACD-A is that it absorbs the patient’s calcium, and I was told to watch out for tingling in my fingers or lips. As soon as I suspected that was happening, I was given some calcium tablets (to supplement the earlier milky breakfast).

There’s not much you can do whilst attached to the machine, so I watched a film on my iPad: “Smile”, a horror film set in a hospital. My bed was facing the nurses’ desk, so all I could see were the backs of their computer monitors. I wondered what they were watching: I’m pretty sure they were YouTube videos of bodybuilders’ arms with huge veins popping out.

At some point, it was bound to happen, I had to ask the nurse for a bottle to pee into. When you start thinking about it, you can’t think about anything else. It was a tricky process, trying to undo my shorts, hold the bottle and perform, all with one hand, while keeping the other arm absolutely straight. Once was enough for me, although the nurse said the record was nine. Impressive!

Sue went out for a walk, aiming for the nearby Petrie Museum, but, finding it closed, she had a blissful time in the biggest Waterstones she had ever seen. She returned about an hour before I was disconnected.

There were further blood tests at the end, to check I was well enough to leave, then a wait of an hour for the counting of the stem cells. I had collected 1.5 million, which I was assured was sufficient, although the target was 2 million. Apparently, it’s still enough for two transplants. After that, they put my stem cells into a freezer, ready for when I need them in a few weeks’ time.

As for the blood test, my creatinine level, that relates to kidney function, indicated that I should drink lots of water. We went for a walk around Regents Park next, with me dashing from one WC to the next.

An early, very tasty dinner at Honest Burgers should have filled us up for the day. However, to return to this week’s marathon analogy, I had an urgent phone call from the nurse to tell me that the blood test showed my potassium level was very low, so I needed three bananas that night, and another three on Wednesday. I had already eaten one during the afternoon, but since we had just returned to the hotel, and were not sure how to find so many bananas at night, and at short notice, I decided to tell my story to the young lady running the restaurant, and she very kindly supplied me with a couple more. Go on, try eating three bananas all at once yourself.

While in M&S we met one of the other patients who was returning the next day for another attempt at apheresis and stopped for a chat. He had been diagnosed at about the same time as me, with similar symptoms: back ache, but with damage to his vertebrae. Bizarrely, he and his wife already knew two other people with Myeloma, one of them a neighbour of theirs. That helped him to find out what would be involved in his treatment. We will probably see them often during the Stem Cell Treatment, they will be at the UCLH Cotton Rooms for ambulatory care at about the same time as us.

—oOo—

Sue is becoming much more tech savvy these days. She has worked out how to use her phone as a hot-spot, and managed to buy a book from her Kindle, although didn’t she have the chance in Waterstones?

—oOo—

Wednesday was a free day in London, so we visited the Wellcome Collection exhibitions on ‘Milk’ (the politics of), and ‘Being Human’. We also managed a couple of book shops (Judd Books and Skoob) before returning to the station via the British Library garden. I feel I am still fine to mix with people indoors, keeping a mask on, although I expect to be much more vigilant in the coming weeks.

The rest of the week, after we returned home, was rather a washout, rain stopping play for a cycle ride, and an outdoor lunch that we had planned, but we managed a National Trust trip to Wakehurst Place for a walk through the trees, including the Tree Trunk Trek, followed by a climb up the scaffolding surrounding the Mansion, which is mid-restoration.

Next week, we are looking forward to another trip up to town, this time to UCLH’s Institute of Nuclear Medicine for scans of my kidneys and heart. These involve radioactive injections, but only a small amount – about the same as you would receive naturally over a period of 1-5 years. Will I be able to read my book in the dark by the faint green glow? Will I stream ‘Oppenheimer’ while I am waiting? Find out next week.

Thanks for reading and take care.

Oh, and the quiz answer: the lyrics to “Chantilly Lace” by The Big Bopper (later covered by Jerry Lee Lewis), ending “Oh Baby, that’s what I like”. I think the representation of ‘N’ with a triangle was the trickiest to figure out, and the repetition along each line is a bit off putting. Well done if you figured it out.