21. Managing the details

Mile 18 – Easy downhill slope.

As well as preparing your body for the run, you need to be on top of all the ‘admin’ details if you want to enjoy your race. You will need your four lucky safety pins for your race number, and a change of clothes for afterwards (packed in the regulation bag for storage if you want to make use of the bag drop and find your things at the end). No one else is going to manage this for you.

One of the ladies at the running club contacted me to say that her husband had been diagnosed with a similar blood cancer at the same time as me, and we met them on Tuesday for what turned out to be a very long and enjoyable coffee morning. His cancer has resulted in too many platelets in the blood, with an associated risk of clotting.

One thing that stayed with me was the discussion about managing your treatment and making sure all the actions are followed through. Rather than visiting the hospital each week, his chemotherapy drugs are delivered to his home, but sometimes the delivery firm will call and ask if it’s okay for them to be a week late. Well, obviously not! There isn’t a GP with time to watch over our cases and chase up anything that has been missed. We wondered what happens to people who are more vulnerable, perhaps don’t have such good support, who can’t check the actions that are inevitably forgotten by the busy medical teams. Unless they have an exceptionally good carer, they must surely be in trouble.

For myself, I keep detailed notes about what to expect next in the treatment plan, and, with Sue sitting in on any appointments with the medical team as a second pair of ears, I don’t think much escapes us. Currently I’m making sure that the oncology and dermatology teams at the hospital are sharing my test results, not something they would normally do as they are quite independent departments. Also, I have to chase up the referral to UCLH, as I’ve not heard from them yet regarding the stem cell transplant.

As a lover of lists, I use Google Keep as the app where I can keep reminders of my questions for the medical team.

This week’s hospital visit was the quickest so far. We started with a blood test for the dermatologist, to check that last week’s rash was not accompanied by internal bleeding from blood vessels, but since the rash has long since disappeared, that may be redundant. Other than that, it just involved taking the Dexamethasone and being injected with Bortezomib, then we were on our way before lunch.

All the strength exercises and cycling that I have been doing are paying off now. I’ve no aches and pains to complain about at the moment, I feel I’m a different person to six months ago. I still feel light headed at times when walking (anaemia caused by the chemotherapy drugs), but even that seems to be improving. As a result, I have been out and about a whole lot more.

Saying hello to the running club on Wednesday evening, as they were meeting locally to set out for a recce of the village fair’s fun run route, was a real treat. It was so nice to see them after being away from the group for such a long time.

I enjoyed coffee with a running club friend on Thursday, having a good chat about fishing and pension funds, at a cafe that I hadn’t tried, one that was not part of a garden centre. We touched on financial advisors, so I can share two bits of advice (apologies if I have told you these before, or if you told them to me originally):

1. Travel first class or your children will.
2. Make the last cheque bounce.

On Friday I was much more active than I have been for ages. We had a day trip with friends to Alfriston to visit the Clergy House (the first ever National Trust house), followed by a short walk along the Cuckmere River, then, after lunch, a visit to the remarkable Much Ado bookshop.

We were told this carved oak leaf in one of the upper beams of the main house was the inspiration for the National Trust’s logo.

We headed out on a stretch of the footpath that hadn’t been cleared of nettles for a while, and since we were all in short sleeved shirts, we were forced to walk in a defensive posture, arms aloft. It was only when someone on the other bank called out to see if we were okay that we realised, it looked as if I had a weapon trained on them from the back.

After lunch at the pub we went to Much Ado Books. It doesn’t look special from the outside, with a tiny little entrance, but when you go inside the shop continues upstairs, into the garden, and is laid out beautifully with a range of both new and second hand books. Since we are all book lovers we spent a happy hour browsing.

That day out was the first time I have coped with anything like a normal level of activity since this all began, so it was an exciting landmark for me.

Saturday saw the village fair. I’ve mentioned before that usually I am involved in the organisation of the fun run. This time I could enjoy it as a spectator, and it was another special day, just wandering around and catching up with lots of friends and neighbours. Again, I was delighted to find I had the energy to spend the afternoon there.

Let’s see what next week brings. I’m hoping it will be as good as the last one.

Thanks for reading and take care.