7. Nutrition

Mile 4 carbo loading and feed stations

Let’s say the human body can store about 2,000 calories. When running you use up about 100 calories per mile, so when you get to 20 miles you have burned all the stores, you are running on empty and that’s when you hit the wall. You get through it by a combination of taking on more calories at the feed stations around the course and sheer willpower but it is important to make sure your stores are full before you start by carbo loading in preparation for the race.

Cycle 1 day 22, the last week of the first cycle and I have been getting advice from my dietician, from my peer buddy and from a friend of a friend (thanks Andy).

Forewarned is forearmed, and I’m aware that the biggest challenge won’t be the chemotherapy cycles that I’m going through at the moment but the autologous stem cell transplant (ASCT) that is still to come. After the current chemo cycles have brought the number of cancer cells right down, ASCT will involve a high dose of powerful chemo drugs that will wipe out the remaining cancerous stem cells as well as most of the healthy ones. I’ll be in hospital where they will be ready to isolate me in a room if I need protection from infection and I’m expected to be there somewhere between 2 and 4 weeks, until my immune system has regrown itself from some healthy stem cells that will have been harvested from me beforehand.

My peer buddy lost 10% of his body weight when he went through this, so I am preparing for the same. And if I’m going to lose 10%, then it would be a good idea to put an extra 10% on beforehand. What I need is extra muscle, both to replace what I have lost in the last six months and to give me some extra. I have a few months to work on it and if my back pain continues to improve I’ll be able to do a bit more exercise to help with this too.

While the marathon runners are eating pasta and carbohydrates, I need to be more like a body builder and concentrate on extra protein and calories. I already like to have a big breakfast of porridge with a banana and raisins. My dietician has given some suggestions to tweak this a bit: use full fat milk and mix in a spoonful of peanut butter.

I like my dietician. Basically she says I can eat all the foods that are normally considered bad for you. On savoury meals she suggested adding extra toppings, like cheese and nuts as well as some berries (as a small concession to healthy food). Double cream in mashed potatoes and in soup. She suggests lots of snacking so I’m trying Skyr Icelandic protein yoghurt, roasted mixed nuts, cheese and biscuits. My son Tim pointed out that pork scratchings are nearly 50% protein so I’ve had some of those. I can have protein shakes, or better still, make them smoothies with some full fat milk, fruit and ice cream as well as the protein powder. And I’m not to hold back on the puddings. You understand, I’m just following the expert advice.

This mile’s medication is Daratumumab (Darzalex®). The drugs all have a generic name and a brand name.

It is classified as a targeted monoclonal antibody. Myeloma cells produce a protein, CD38, on the cell surface. Dara attaches to CD38 and flags it to the immune system which targets and destroys it. How clever is that! It was only approved by NICE for use in the UK in February 2022 (I found the minutes of the meetings on the NICE site), so is one of the latest treatments available in the anti myeloma arsenal, to be used in combination with Bortezomib, Thalidomide and Dexamethasone. (My treatment plan is to use Lenalidomide rather than Thalidomide, as a further enhancement.)

But what you will be interested in is that it comes in a comedy supersize syringe.

Really, it doesn’t hurt at all. My nurses are all brilliant, have steady hands, and although I prefer to look the other way, can deliver even these big injections without discomfort on my part. In order to make the drug release slowly into the body, it is injected into the subcutaneous fat in my abdomen, alternate sides each week. Luckily my diet leaves me with plenty of subcutaneous fat to aim at. This one takes three to five minutes to slowly inject. It isn’t possible to push harder to make it go in quicker, even with the strong thumb of an expert nurse.

It has been a good week for socialising, having met up with friends from work and running club as well as getting out to the camera club for an evening. It’s good to talk about the normal world and catch up with what friends are doing.

When cancer does come up in conversation, it is amazing how many people have been touched by it in their lives, either personally or through family and loved ones. As a newcomer to the scene – it’s only two months since my diagnosis – I’m learning such a lot about how positive the response can be and how strong people have been to cope.

My daily exercise routine includes mainly stretches and movement exercises and I have been aiming to walk 7,000 steps most days which is my limit at the moment, I tend to be limping again after that. On Saturday I tried riding my bike on a turbo trainer in the garage for twenty minutes, but that completely wiped me out for the rest of the day. Still, more about that next week.

Thanks for reading and take care.