9. Hydration and how not to see Elton John

Mile 6 – Off course up a huge hill

Before and during your marathon it is important to take on enough fluid to make up for what you will lose in sweat. There are feed stations every few miles and it is best to take advantage of their water, as well as electrolyte drinks that help replace the salts that you are going to be losing too. It is something to practice during the long training runs as you want to know which flavours you can stomach, plus you have to be careful not to over hydrate, which can be just as bad.

As someone who has twice ended up in the St John Ambulance tent at the end, I’m not a great expert at this part.

I was first diagnosed by the GP, who noticed hypercalcaemia, i.e. high levels of calcium, in my blood. That calcium would be putting extra strain on my kidneys as they flush it out of my blood. Then, since treatment started, there are also a lot of dead cells in my blood that need to be flushed out, so throughout this I have been advised to drink plenty, about 2-3 litres per day. I have quickly learned to drink most of it in the mornings, so I’m not up all night.

What a difference a week makes. I’ll start by telling you about this mile’s medication – Lenalidomide (Revlimid®).

To quote from the Myeloma UK information sheet:

“Lenalidomide works by affecting the body’s immune system. It helps to kill myeloma cells in a number of different ways:

1. Directly killing or stopping the growth of myeloma cells
2. Blocking the growth of new blood vessels that supply the myeloma cells with oxygen and nutrition
3. Boosting the immune response against the myeloma cells
4. Altering the production of chemical messages involved in the growth and survival of the myeloma cells
5. Preventing the myeloma cells from sticking to the bone marrow stroma (the tissue and cells not involved in blood cell production).”

This is taken as capsules every day for three weeks, then there is a week off. It is related to Thalidomide so before starting treatment I had to sign a form to say I would not be helping anyone become pregnant.

Last week, on day 1 of cycle 2, Lenalidomide was re-introduced to my treatment. During cycle 1 I took it for three days but came up in a rash so my consultant told me to stop. This time I persisted for five days but the rash turned up again, along with its friends, high temperature and total exhaustion. I don’t remember ever feeling this ill for a whole week before.

The rash was much more extensive than last time, starting around my neck, then working down my upper chest and back, my arms and up my head and face. By the end of this week there are just a few small patches on my fingers, and on my scalp. A patch will swell up, then just 12 hours later it starts to recover, and a couple of days later there is no sign of it.

My consultant and nursing team have not come across this before, so Sue has been taking pictures and sending them through. I’ll spare you, I don’t want to put you off your dinner. The first time round my dermatologist identified it as Urticaria, probably as a result of multiple myeloma, but felt I should be okay to restart the Lenalidomide. We are still in the dark as to the exact cause and why it should result in the fatigue and high temperature.

Since starting my treatment. I have been carrying a red card with me which lists warning signs to watch for and emergency contact numbers. The first warning sign is a temperature over 37.5°C and on Monday evening I was up to 38.5°, so we called the out of hours number and were advised to go to A&E. The on-call doctor recommended Worthing Hospital as it is where my consultant is based, and was more likely to be quiet than the other local hospitals. We arrived at a scene from a Casualty episode involving a major incident: 103 people in the queue (as displayed on the big sign), spilling out of the doors. Sue went up to the desk and showed the red card, whereupon we jumped to the front of the queue. Within 10 minutes I was taken in for triage and 15 minutes after that we were taken past the people in the waiting room and on beds in the corridors, through to an isolated room.

Lots of bloods were taken and by 10pm I was on an antibiotic drip. We were trying to assess how long we might be there and were given a clue when the nurse said she would try to come and check on me at hourly intervals, but they were very busy. I was okay, lying on a bed, but Sue was perched on a plastic chair all this time. It was close to 3am when the doctor came to see me. After that he gave me some antibiotics to take home and let us go. As we left there were still some of the same people from the night before in the waiting room and the corridors. They gave me conspiratorial smiles as we went past, making me feel even more guilty for queue-jumping past the lot of them. We eventually arrived home at 4.30am on Tuesday morning.

Which brings us to Elton John. For Sue’s 60th I bought tickets to see the great man at the O2 in November 2020. That was postponed to 2021 by COVID, then postponed again when he had a hip operation. It was happening, at last, on Tuesday night.

I have for some time been trying to establish guidelines on what activities I can take part in with my reduced immune system. There is nothing definitive, you just make your own decisions and establish a sensible threshold. For me, I have been allowing myself to meet friends in restaurants, to go for days out and even the odd night away, but going to the gym or a swimming pool is too risky. Needless to say, going to an Elton John concert with thousands of others and boarding crowded tubes is in the reckless category.

We had already decided this, and Sue was going up with my sister, Liz. However, now it would be with just 4 hours’ sleep the night before. In the end they had a great day out, walking around London, dining on the South Bank and thoroughly enjoying the show. Happy Birthday Sue, at last! As for me, I’ll have to wait for his next Farewell Tour.

Thanks to my son, Chris, for looking after, and feeding me, and helping me up to bed on Tuesday night, when I felt exhausted, but I wasn’t going to call Sue or A&E.

So, in summary, after last week’s exercise and socialising, this week I missed all my meet ups and spent 4 days doing little but lie in bed. I’m hopefully on the mend now, my temperature is coming down to normal levels over the Easter weekend, so let’s see how next week goes. I didn’t have my usual Wednesday treatment day at the hospital due to my condition so we will try again next week.

I’ll leave you with a new quiz feature, although I can’t promise to ever give you the answer. What does the snappy title on this sign refer to? It was in my room at the hospital in A&E on Monday night.

Thanks for reading and take care.