Let there be light (therapy)

Despite Belumosudil, my new chemo drug, and my desire to be restored to the full vigour of a 68 year old, my skin continues to thicken. It restricts movement, and that leads to muscle weakening and losing balance.

But on the positive side, I have begun the NHS Couch to 5k running programme. I always loved running. It’s great thinking time, and I feel free. I have a life goal of still running at Seventy, but over the last 9 years I have lapsed. I am now on week 3 of the 9 week programme, with Steve Cram as my coach. I love the Geordie accent! It lasts 30 minutes, and at this stage I am still doing more walking than running. I run/walk on the beach, when the tide is out, and the sand is flat and firm, but with just a little give. Yes, we are blessed to live here. 

So, I’m not too bad, and the Prof thinks he can stop this GvHD, so he is sending me for ECP at Guy’s hospital, in the fabulous new Cancer Centre by the Shard.

ECP is Extra Corporeal Photophoresis. You lie on a bed for 90 minutes, with a needle in a vein in each arm. They take blood out of one arm, put it in a centrifuge to separate out the white cells, add a chemical, shine UV light on them, and return them back into the other arm. I have my first treatment on Wednesday. You have it for two days in a row, once a fortnight. So, the main challenge is the time commitment and travelling. Thankfully, I am getting a free bed for the night. It is likely to go on for 6 months, or even up to a year. If it works, it works slowly. So, it's back to being a patient patient.

I am adjusting to life at 80% of energy and time. I am very thankful for the health and energy I do have. I am preaching monthly, and after Easter teaching at a Church weekend away. I also help to run the Bible Course (it’s a brilliant Bible overview, available from the Bible Society for free, check it out). I have started a once a month online bible study with 2 friends, one in China and the other in South Korea; and I was asked to be a Spiritual Director for a trainee curate in Vienna. All this is stimulating for the mind and soul, and it feels like ‘fruitful labour’. St Paul's Church in Clacton is making exciting progress, with new faces and lots of enthusiasm - they are full of questions and keen to attend the courses the Vicar runs. Sunday morning is a highlight of the week. Golf is a wash out at the moment, but hopefully spring is coming soon.

Edward is having a hard time. He is half-way through 3 months of chemotherapy, and it is tough going. It is such a long haul - 6 months now since diagnosis, and another 4 months of treatment, and surgery ahead. Ed misses his work and school community tremendously. Please pray that he will recover from it all, and get back to work full time at Reading Bluecoat in the new school year in September. It is hard for Ed and Kate to stay positive, and keep fighting, week after week - but they do! They are amazing. 

We enjoy taking it in turns to go over and stay with them during the week; it is good to have time with them all, and to give a bit of help. We get to see form plays, Freddie’s rugby matches, and Izzy’s netball. They are playing chess now, so that is waking up 'zee little grey cells'. All this extra time with the family is a real bonus.

So, we are hanging on and being held up. Thank you for your friendship and support, and the news you send. It really helps to feel part of a larger family, so keep it coming. Hospitals are interesting places, and the new treatments amazing - but it is good to hear from beyond the world of cancer and the NHS - all the joys and challenges that you go through.

May we all know the God of love with us, Jonathan