32. Pre-race nerves

Mile 29 – Nice smooth downhill, but I seemed to find it rather unstable.

It’s normal to wake up early on race day, to worry over your kit bag, to make sure your phone and watch are charged. The nerves can be with you right up to the start line, and, who knows, perhaps the adrenaline helps a runner’s performance.

Monday morning and what might be my last decent bike ride for a while; a chatty visit to The Cabin at Berrett’s Farm in Henfield, with its splendid view. I was a tad nervous before setting out, worried about my low red blood cell count and whether it would leave me too light-headed, but once I left the house, I felt fine, and the chocolate tiffin was enough to power me all the way back. The trip was 37km all round, so not a bad effort. Thanks Oli!

There were no medical procedures this week, just a consultation with my consultant to sign the consent forms for the stem cell transplant to go ahead at UCLH next week. So plenty of time to prepare and to fret about it.

I have felt the stress recently. Even while going through my physio routines every morning, I feel anxious about them — am I doing them properly? It’s both natural and nonsense, of course. I have prepared as well as I possibly could.

Another concern is that Sue might be on her own in the coming weeks unable to do the man jobs that are usually my domain, such as turning on the TV using the remote controls in the right order. Then, on Tuesday, our phone line and broadband stopped working, all adding to the anxiety. 

The BT man came within a couple of days, connected an oscillator (below), then went to check the cabinet half a mile away on South Avenue. Sorry, I know I don’t need to tell you all this, but I can’t stop myself reporting on these gadgets. If he had asked to fit it to my juicy vein, I would have held my arm out.

He reported back that someone had accidentally pulled our plug out by mistake, so it was quick to fix, but this had given Sue two broadband free days to hone her IT skills and find an alternative way to pick up emails using her mobile phone as a hot spot. Her pièce de résistance was to print an email to the printer on our network, but since you can’t connect the PC to the network and the mobile hotspot simultaneously, it turned into one of those puzzles like crossing the river with a fox, a chicken and a bag of grain: connect to hotspot to download the email; disconnect from hotspot then connect to network. She passed with flying colours and can even turn the TV off without supervision.

—oOo—

UCLH provide an app called ‘MyCare’ to communicate with me, and it has a few quirks. It gives me a couple of notifications daily, usually they’re reminders of appointments in a week’s time. In addition to test results and an appointment diary, there are three types of messages:

• ‘conversations’ which are reminders that you have had some care (not conversations); 
• ‘appointments’ for new or changed appointments; and 
• ‘automated messages’ which are appointment reminders. 

There were some questionnaires for my upcoming appointment, and the links to find them were hidden away in the ‘automated messages’. I wonder whether many people find them.

The questionnaires have names like EORTC QLQ-C30 and EQ-5D5L but are generally all asking how I feel at the moment. When faced with “I have trouble starting things because I am tired”, I couldn’t help but think, “now you mention it…” So I left the questionnaire until later, and went for a five mile walk over Wolstonbury Hill. After that (and a short nap) I had a lot more strength to answer those energy sapping questions.

—oOo—

We visited UCLH again, starting with an afternoon meeting with the physio, who was very helpful, as always. She did emphasise that although I have a few nasty weeks ahead, I have done very well to build up my strength in preparation. She repeated the sit to stand and walking tests that she had me do last time we met, and I achieved PBs in both (30 sit to stands in a minute, and 650m walking in six minutes). I’ll have to buy some running spikes ready for next time if I’m going to better that, and other users of the ‘walking test’ corridor must expect to be shoved violently out of the way.

This positive news was reinforced by the subsequent visit to the consultant, who confirmed that my recent heart, kidney and blood tests showed good results. My haemoglobin was fine (so I had been worrying for nothing about the red blood cells). He reviewed my vital statistics, and everything that needed to had successfully reduced significantly (paraproteins from 16.2 g/l to 1 g/l; lambda light chains from 486 mg/l to 9.2 mg/l; clonal plasma cells from 70-80% to less than 5%), and reassured me that I had already responded extremely well to the induction chemotherapy.

It was the first time we had met, and he is very nice. The signing of the consent forms is something of an art among the consultants, whether it’s for this, chemotherapy, or Thalidomide. They don’t want to wait while you read it – we would have been there all night, and it was nearly 6pm already. He looked me firmly in the eye and talked through all the risks I might face (including risk of death 1-2%), then a quick “sign here!”. He had, already, answered all our questions, so I’m not saying that we were rushed, but the important business from his point of view was clearly for me to make my mark on the paper.

I’m unlikely to escape sickness, diarrhoea, anaemia and the associated fatigue, sore mouth, and infection. My hair is likely to fall out when I am discharged.

We discovered that only enough stem cells for one transplant had been harvested, not for two. Although we were a bit disappointed – I had called to check on that point, just after the apheresis – we were assured that I could harvest again if a second attempt was required further down the line, although other treatment options are likely to mean I would never need to do this again. There seemed to be no concern on the consultant’s part that this attempt at the ASCT might be unsuccessful, causing me to need more stem cells as a backup.

We had strict instructions to avoid busy places (although there’s not much choice when returning on the train), so, for us, it’s back to the face masks that the rest of you have thrown away by now. I have just started a new pack of masks, for which the manufacturer has economised on the elastic, so they tear my ears off. Sue must join in too – there’s no point in me being careful if she picks up the new strain of COVID and passes it on.

As regards timing, it seems almost certain that I’ll pick up an infection of some sort at +5 days or so (remember, day 0 is when the stem cells are returned to me). Sue will likely go home at some point and we can chat using WhatsApp, with the occasional visit to bring me fresh clothes. I won’t need an extensive wardrobe with me, as after the first week I’m unlikely to go outside. Although some people manage to stay in the hotel rooms throughout the process, they tend to have other complications, so they receive a reduced dose of Melphalan. I will be given the ‘full fat’ version. 

The record shortest stay seems to be about 16 days.

—oOo—

We met two of my team-mates, who are due to have their stem cell transplants in the same week, recognising them from the online ‘prehabiliation’ exercise classes and/or the apheresis session. We will soon be chatting more and sharing tips on good places to eat. There is apparently a nice vegetarian restaurant that’s open during the daytime at the Quaker Meeting House. We later tried out the Leon branch on Tottenham Court Road, but probably won’t recommend that.

One of my new team-mates had read my blog and said he liked my sense of humour. Rather than explain his treatment to his sister himself, he has suggested that she read my blog because he is going through the same process as me. I’m always happy to provide a public information service.

—oOo—

We enjoyed a last breakfast with our boys before it all starts, gave them instructions for looking after the house while we are away, then set off for the Cotton Rooms, where we have paid for an extra night before I visit the hospital early in the morning.

So, not much in the way of medical procedures this week, which is a good reminder. Cancer isn’t always about the treatment, it’s also about trying to keep your nerve, and carrying on with life.

It is all made much more bearable by the many messages of support from my family and friends. It’s great to know there are so many people behind me, so thanks to you all.

Watch out for the next post but don’t worry if it’s a bit late. I might not be up to much next weekend, but rest assured, I’ll be in safe hands.

Thanks for reading and take care.