17. Familiarise yourself with the course profile

Mile 14 – Undulating again.

It may be useful to know what to expect in terms of hills along the course so you are not surprised by a steep one just at the end.

The Edinburgh marathon starts with a lovely long and steep descent but bear in mind that it might not show the whole story. This didn’t warn about the gale force headwinds for the last ten miles, which went on to blow the roof off of Edinburgh Airport and lead to cancellation of the planes home.

Familiarisation with the weekly routine helps me plan what I am going to do. This diagram below is something of an exaggeration but it gives you an idea of what I usually expect. I tend not to book anything on Saturdays, although I am going to break with that tradition in a few weeks time and try going out for lunch with some friends. Fingers crossed, I hope can get away with that.

The Saturday hangover seemed to start on Friday afternoon this week, and I was feeling washed out for most of the weekend. It is not just a physical thing, it left me feeling quite grumpy too. I had been enjoying the exercise a couple of weeks ago, but since then I have had more aches in my back and I’ve not been able to do as much. There are ups and downs each week through this treatment.

I hope you all enjoyed the Bank Holiday last week. We had a BBQ with the family, ate too much and fed off leftover burgers and puddings for the rest of the week. My immune system has survived it, so far.

Let me tell you about lucky Tuesday and why I now smell like freshly sawn timber. We went to see the Macmillan Horizon Centre in Brighton a couple of months ago, and I had wanted to make use of their support services, regularly checking through their programme of upcoming events. Over the weekend I wrote to them to ask if I could book one of their complimentary complementary therapies, perhaps reflexology or something else that I had not tried before. I had a call back on Tuesday morning telling me they had a cancellation in the afternoon, so I was able to take advantage of an aromatherapy massage session. I spent about an hour and a half there, first dealing with the form filling, then learning about essential oils, and still time for a forty minute back and shoulder massage. Sweet marjoram, bergamot, and cedarwood all mixed as a 1% solution of sweet almond oil to give me a relaxing and strengthening blend.

I took my t-shirt off and, much to my horror, discovered I had a blister on my back, which promptly burst, catching the aromatherapist in the eye. Yuck! Well done to her for staying so calm. In her position I might have screamed and kicked me out, but she fetched the first aider – the centre manager – and applied a dressing. She managed to work around it, I had the most relaxing massage, and now I smell lovely (and a bit like freshly sawn timber) and I’m ready to face the world. To round it all off, the car park barrier was broken so parking was free as well. So, Lucky Tuesday, except for the back blister. That went onto my list of ailments for the hospital on Wednesday.

The hospital visit should have been a quickie this week, just the Dexamethasone and Bortezomib, two hours tops. However, I told them about my various symptoms, and the team was worried about the swelling on the top of my left foot. I had put it down to having strained something whilst doing more walking, although I had also been concerned that it might be a sign of peripheral neuropathy, as mentioned in my last post. They ruled that out but were concerned it might be a sign of a blood clot, which led to a new avenue of investigation.

It started with a D-Dimer blood test, looking for a protein fragment that is released when a blood clot dissolves. This is one of the few tests that the hospital’s haematology department can’t do themselves, so a courier was arranged for the blood sample to be taken to the Royal Sussex County Hospital for urgent analysis. The result was just outside the normal range but not conclusive in itself.

Next I was sent to the scanning department for a Doppler test, a type of ultrasound, checking the blood flow. The doctor checked three places on my leg: the groin, inner thigh and behind my knee. On each one he started with a view of the artery and vein then pressed to check that they compressed when he applied pressure. Then there was a colourful view showing the blood flow, for which I had to cough, which looked like fireworks. Lastly he turned the sound on, producing a sound like “errr”, which changed to “eeee” when I lifted my foot, causing my calf muscle to restrict the blood flow. I was declared all clear, told to keep up the walking, and it was the most fun I had had all day. We were at the hospital for five and a half hours, so we both made good progress through our reading books, leaving just in time for traffic-o’clock coming out of Brighton.

I had an interesting medical conversation this week with a person who I can only refer to as my ‘unnamed source’, discussing latest advances in myeloma treatments and research. It helps if you understand a bit about one of the new treatments called CAR-T, which essentially modifies a type of white blood cell called a T-cell, part of the immune system, so that it can better recognise cancerous cells and kill them. I can’t improve on this very good video from MyelomaUK which explains how it works in more detail.

The treatment is very complicated, in particular the lab work to modify the T-cells and to grow large enough numbers of them to give to the patient. In March this year the pharmaceutical company Janssen decided not to progress its CAR-T treatment for myeloma patients, although they had been seeking approval from the National Institute for Clinical Excellence (NICE), because they (Janssen) believed it would not be possible to produce the supply needed to roll out across the UK. (See MyelomaUK article below.) It was a disappointment to myeloma patients, after clinical trials had shown the treatment to be successful and to produce long remission periods after treatment.

Pharmaceutical company halts access to CAR-T cell treatment for UK myeloma patients

The good news, however, is that research continues, with numerous medical companies looking for opportunities to apply their talents. A firm already dealing with mass producing human cells for purposes such as medical research is looking at ways to mass produce T-cells for myeloma treatment, hopefully making the treatment option viable in the future. There will be issues to deal with such as making sure the T-cells won’t be rejected if they are not sourced originally from the host. It was an interesting conversation and made me realise how much more there is to learn about the subject.

I’ve nearly finished the project I told you about, converting my friend’s super 8 films to digital format, but after reel 29 of 30 the projector bulb blew. I’m not surprised, I had often fiddled with the bulb’s socket to get it to make contact (sometimes with a few sparks), but now the bulb was black. It turns out that new replacement bulbs have slightly narrower connector pins and so I’ll have to do something about the socket too. I have done the obvious thing and taken the whole projector apart. I’ll let you know if I can work out how to put it all back together again.

Thanks for reading and take care.