20. Reducing waste

Mile 17 – Getting back on track.

Going back a few years, Lucozade (or other sports drink sponsors) would turn up with mountains of bottles of flavoured energy juice at the Brighton marathon. If I picked one up as a runner, I would keep hold of it until I had finished it all, but the majority of people didn’t want a whole bottle: they would take a sip and throw most of it on the ground. This adhesive, sticky mess would be on your trainers, and you could hear the squelching for the next few miles. Come to think of it, it was a good tactic for slowing down those behind you.

More recently the trend has been to reduce all that waste, with many races suggesting you take a collapsible cup with you that you can fill up at the water stations.

There seem to be lots of waste products involved in chemotherapy, but when you look at the packaging it is efficiently designed. Medication is in sealed plastic/foil containers to keep it fresh and clearly identified. The boxes contain the instruction leaflet with warnings about the side effects, and, on the outside, the expiry date. It’s hard to see what could possibly be replaced with a potato starch compostable wrapping. Fortunately, our local council accepts the plastic/foil tablet containers that I generate in huge quantities each week, for collection in their recycling bins.

At this time of year I’m usually busy helping to organise the fun run at our village fair but, as you can imagine, have had to hand that over. Back in January I had invited the rest of the team to a kick off planning meeting, but then I had my diagnosis of multiple myeloma the week before we met. I broke the news, and the rest of the team were really supportive. This year’s race director has thrown himself into it. I have helped out behind the scenes where I can, in this case arranging the medals for the finishers, which brings us back to the subject of waste. These ones are made of plywood, and, if we have some left over, the ribbons can be replaced for next year. It may not be too late for you to enter!

Last week I told you about the rash that appeared on my body, arms and legs. This week, with the help of some more medication, it has been subsiding as quickly as it appeared, leaving me now with itchy patches inside the elbow and knee joints, around my ears and on my neck. My face still looks as if I have been sitting in the sun for too long. I hope it clears up soon, it’s just another impediment to my future swimsuit modelling career.

We went to see the dermatologist on Thursday. She said that while I still have urticaria from the neck up, the rest seems to be the result of leakage from damaged blood vessels in the skin. I’ll have another blood test next week to check that there is no evidence of leaking vessels internally, which could be more serious. It’s hard to tell why this has come about, it may or may not be due to the medications. I’m to carry on taking the Fexofenadine antihistamine, and she also prescribed some creams and ointments for me – Mometasone for the body, Hydrocortisone for the face – as well as compression socks for the legs.

I had already started applying an emollient cream, Diprobase, to my body earlier in the week, making me even more slippery than usual. Think back to when you last tried to stick masking tape to a wet bar of soap (without cheating and using Lucozade). Well, the nurse at the hospital came a cropper as she tried to take my bloods on Wednesday, when the tape holding the needle in my arm didn’t grip and the red stuff began to flow all over the place. She was only half way through the first tube full. She’ll be avoiding me in future.

I have still been walking around the house in my pants to avoid contact with clothes, and now I can complete the look with the compression socks. Our friends caught us out with a surprise visit last weekend. I had to dash upstairs and find something to wear while they were waiting, longer than usual, for the door to open. No permanent damage was done.

This week I started cycle five, so hopefully I only have one more month of side effects to go. On looking at my rash, my consultant decided to drop Thalidomide for this month, leaving me just on the Bortezomib and Daratumumab, plus the supporting meds. He said that my response to the treatment has already produced results that are good enough for me to be referred for stem cell treatment. Here is an update on where I am on the journey.

It was a long visit to the hospital this week, we were there for seven and a half hours, mostly waiting for the consultant to finish his clinics before he could see me. Still, it was a good excuse to eat out on the way home rather than cook late in the evening.

It’s been a year now since I noticed my first signs of myeloma, when Sue and I went for a walk and a muscle seized up in my glutes. I can feel that I am on the mend now. My daily exercises and cycling in the garage are helping me regain some fitness, and my tracking app can demonstrate how I’m doing. I’ll try to do some more walking, but recently it has been a bit hot for going out.

This was a better week for socialising. We managed a Tuesday morning breakfast at the local garden centre, although I felt very tired after that, but I was well enough for a long lazy lunch on Friday with an ex-work colleague, followed by a birthday take away with my son Chris. I feel it’s important for me to keep smiling, and make the most of these opportunities when I am up to them.

One last thing to tell you about – my trip to Tesco on Friday. I put it down to ‘chemo-brain’. I came to pay and realised the bill was over the £100 contactless limit so I couldn’t pay with my phone: I had to revert to my credit card and use the PIN. It’s been a while since I used that, and after three failed attempts I had to ask for help. The assistant took a few things out of the bag to bring me under the limit so I could pay for most of it, then I went to pay for the rest at a different till, which I thought had worked until the lady had to come after me because it turned out it hadn’t. I went back and sorted that out, then on the way through the exit the alarms went off. I had a security tag that needed to be removed, by the same lady again. She will be avoiding me, too. I wonder if she knows the nurse.

Thanks for reading and take care.