26. Visualise success

Mile 23 – Another easy mile, with the wind behind me.

Before starting a marathon, picture yourself achieving a successful result: you have bettered your target time, and you can still walk. Then think about everything that must come together for you to have got there. That would include the hydration and nutrition on the way round, so that you feel good at the end. You might also have an eye on the target times at mile markers on your way round.

This applies to everything you do: when you go to the supermarket, make sure you have your bags, shopping list and money with you. I suppose bank robbers have the same approach in their line of work.

You’ve been in the chilly sea for a swim, then dried off, stopped shivering, and you are warming up nicely on the beach wrapped in towels. Someone suggests going in once more, but you really don’t fancy the discomfort of getting cold again.

That’s how I feel at the moment. Today I’m at a stage where I am quite comfortable: I’m going out for exercise, and for coffee with friends. Without analysing my blood, you wouldn’t really know anything was wrong with me. So I’m not really looking forward to starting the next stage of treatment, with its attendant side effects. But, it’s got to be done if I am to achieve my goal of a long period of remission.

I’m trying to visualise all the steps in the next phase, the stem cell transplant, but it is a bit scary. It’s usually best to not think of it all at once, so I’ll concentrate on the first of the four stages that I mentioned last week, collecting some of my stem cells, and tell you about that. It is becoming very real now that I have appointment dates, not just for the initial meeting with the team at UCLH this coming week, but also for an “HAEM/ONC Procedure” the week after, and for “Stem Cell Apheresis Day 1” 12 days after that. I had a call from my new Clinical Nurse Specialist at UCLH, who sounds really nice. She sent me a huge pack of reading material, so I think I can work out what will happen on those days.

If you were new to this, you might think they would break into my thigh bone and scoop out some bone marrow with a spoon, but it’s obviously not like that. For a start, the iliac crest or pelvis would be a much bigger and better bone to collect from, but, no, they use a much gentler method. There is a naturally occurring protein called G-CSF (granulocyte-colony stimulating factor) which can also be made as a drug. It stimulates the bone marrow to make blood cells, but in the quantities that I will be receiving, it will make the stem cells themselves move (or mobilise) from the bone into the bloodstream, from where the medical team will filter them out.

It seems likely that the “HEAM/ONC Procedure” visit will be to start me off on the G-CSF injections. I expect that they will administer another chemotherapy drug, Cyclophosphamide, on that day too, to kill off some more cancer cells. Then they will show me how to inject myself with G-CSF, and send me home with enough jabs to last me the 12 days. Sue seems eager to stick needles in me, so she might be allowed to have a go, as a special treat.

There will be blood tests during this time to see when I will be ‘ripe’ for harvesting, but I’m not sure how they will be managed. Hopefully I don’t have to travel up to London every day for them, since that would be a couple of hours each way, and involve sitting on busy trains.

Apheresis means collection, so that appointment will be the one where they filter the stem cells from my blood. They will put a needle in each arm, and connect me to a ‘cell separator’ machine which will take up to 200 ml of blood cells from me, enough for two transplants. That machine filters out only healthy stem cells, so when they are given back to me later, they should be as close as possible to cancer free. The stem cells will be frozen and stored until I need them after the high dose chemotherapy a few weeks down the line. If they can’t collect enough on the first day, I will stay at the hospital overnight for another attempt the following day.

You may have noticed Oliver Day’s comment on last week’s post mentioning his son’s stem cell donation, and finding out that the recipient (with a similar condition to mine) was just 100ft from where he worked. I expect he will have gone through just this procedure.

If you fancy becoming a donor too, it’s easy to sign up.

—oOo—

To prepare for this next stage, I had a dental check-up. That revealed I need a filling, plus a hygienist visit, both of which I can fit in before the treatment starts. However, on the weekend I lost a cap from another tooth, so I’ll have to see if that can be replaced too. My teeth are nothing but trouble.

I have had lots of coffee mornings this week. We sat outside the Aroma cafe in Keymer with friends on Tuesday, where I picked up a new photographic tripod. You can never have enough tripods. Then later in the week I went to Pitfield Barn for a chat about my helping with the camera club website. It will be good to keep involved in some way whilst I go through treatment that will probably prevent me from attending club nights. As well as coffee, their main business is cut flowers, and all the cakes were decorated with petals.

We met up with my sister Liz, and Alan, again at Trading Boundaries, a furniture store with a sideline as a concert venue. I have been to see lots of progressive rock bands there, and they have a permanent exhibition of Roger Dean’s artwork. If you are old enough, you might recognise lots of album covers on the walls, going back to the 1970s.

Then on Saturday I braved the heavy rain with a few hardy souls from the camera club to visit Brighton Pride. The highlight was when a lady approached me and a similarly bearded clubmate, asking if we were the drag act. She showed us a picture of the pair she was looking for, who had made a frankly half-hearted attempt, wearing nothing but tutus, beards and smiles. We sent her on her way. 

I set off for an early bike ride on Sunday, happily going a little further than last time, nearly 25 miles this week. It was great to cycle along the bottom of the Downs, through Poynings and Fulking.

Pondweed Barbie in last week’s post prompted a lot of comments. My favourite was Dave’s about Sue becoming a pinup in Fisherman’s Weekly. She might not live that down.

Well, time to go.

Thanks for reading and take care.