106 Not Out

106 was my haemoglobin (Hb) score at Bart's this week. This is the highest for 16 months, since before my myelofibrosis diagnosis. My last blood transfusion was on Jan 25th. In the 8 weeks since my Hb score has steadily gone up: 73, 80, 84, 87, 89, 101, 102, 103, 106. If only Stokes, Foakes and Bairstow had had numbers like these in India, the test series would have been very different!

I am now on day +110 post transplant, from December 4th. Mary and I have climbed that long slow walk to the summit of the first peak. It is Spring! I like the way Iranians celebrate New Year on March 21st. We now have more light than darkness for the next 6 months (with due sympathy for my readers down under!).

So, thank you all for praying for my haemoglobin. It is remarkable that it has improved every single week, as blood levels normally go up and down. I am closing on my target of Hb 120. This is what the KPI chart looks like now:

The effect of all this is that I have got energy back. I feel like doing things. In the last 2 weeks I have been to the Garden Centre 3 times, bought a wheelbarrow, topsoil and sand, lawn seed and fertilizer, and have been levelling the lawn and re-seeding the bare patches. I have also renewed the garden path, and had a new concrete base and garden shed installed:

One of my targets was to be playing golf again by April. Yesterday Mary and I went out and played 8 holes. It took me 5 holes to get my first par (which is very normal). I then signed up for Frinton membership for the season, and we look forward to lots of social golf.

We have also joined the monthly Book Club run by Caxton's Bookshop. It is so good to read novels by authors you don't know, and to meet new people with very different outlooks.

2 weeks ago we went back to live church at Frinton Free, which was wonderful - singing and being with God's people, seeing friendly faces, all asking how I was. 'I'm here', I said.

MEDICAL REPORT

As you can imagine, the doctors are delighted. I usually see the Prof (Doc 1), but I also see the Consultant (Doc 2) who cared for me when I was an in-patient. On Wednesday Doc 2 gave us 30 minutes of his time, and said he is making a special study of all their Myelofibrosis patients.

Doc 1 and Doc 2 have an interesting difference of opinion about Myelofibrosis. Doc 2 thinks that the fibrosis (the cancerous fibre in the bone marrow that blocks the space - the seed bed - for making new blood) is scar tissue that will stay there permanently. I am stuck with it. I will only ever get back to a certain percentage of full blood producing capacity. He says I have already done very well, and may have reached my new potential. 'It's a good result' he says, 'you can live very well with an Hb of over 100, and remember, the main reason for doing the transplant was to prevent mutation to Leukaemia'. But Doc 1, the Prof, thinks that with a very successful transplant the scarring can be healed, and reversed, at least in part. So, we are watching closely. Who is correct? A nice bit of professional rivalry!

The Prof likes to do old school medicine. 'Let me examine your spleen', he said two weeks ago, indicating the couch. 'I'm having a job to find it,' he said, 'it's shrinking. It hasn't been this size for a long time!' This is really good news. The spleen grows when you have various blood disorders and it is having to work too hard. So, a shrinking spleen means that my blood production system really is on the mend, and my body is adapting.

To round off all the good news, Doc 2 said on Wednesday that my PICC line could came out. What is a PICC line? 'A peripherally inserted central catheter (PICC) is a long, thin tube that's inserted through a vein in your arm and passed through to the larger veins near your heart'. It made it easy for them to take regular blood tests, and give intravenous drugs and transfusions. It lived inside me for 4 months, all without causing any discomfort or problems or infections - thanks to the careful weekly cleaning by the nurses. Amazing technology and care! They took it out because I am not having any more regular transfusions. Being free of it is a relief, and makes bathing and showering a lot easier (I had to keep it dry); and it's better for the golf swing!

THE NEXT STAGES OF HEALING

You know what happens when you get to the top of the peak you were aiming at? Yes, you get there and then you see another one right in front of you! Now that I am through the first 100 days, the Prof has started to reduce my ciclosporin, the immunosuppressant that stops my body rejecting Caroline's cells. He does it gradually to see how my body reacts.

I still have some GvHD (graft versus host disease) and the main symptom is a sore and ugly mouth, lips and tongue. Eating is painful and slow. I like yoghurt, ice-cream, and cold drinks. Tea and coffee have to be drunk luke warm. So, the Prof put me on a high dose of steroids 6 weeks ago, and I do time-consuming steroid and anti-fungal mouthwashes 4 times a day.

It is not good to be on steroids long term (weakening of muscles and other side effects). So, this week Doc 2 started to reduce them, saying that GvHD usually 'burns itself out' and that the main thing it needs to heal is time.

Please pray that the GvHD does burn itself out, along with the soreness in my mouth.

A second part of the next stage is the RENEWAL of VACCINATIONS - Covid, flu, measles, mumps, chicken pox, tetanus, etc. because they were ALL WIPED OUT by the chemotherapy pre-transplant. This will take months to do, which is why I am still taking drugs to protect me against various infections and viruses. Here is my daily drugs supply:

So, I am doing well, but have a way to go. It's a 12 month process; and I will be going for check-ups for the rest of my life.

GRATITUDE

I realise that I am very blessed to be alive, and on this road to recovery. Our whole family is blessed too, because the illness and death of one person affects so many. As Paul says of his friend Epaphroditus (end of Philippians chapter 2), 'he was ill, near to death, but God had mercy on him, and not only on him, but on me also, lest I should have sorrow upon sorrow'.

So, rejoice with me! Give thanks! But even as we rejoice, we all know others for whom the battle with cancer is going the wrong way, or who face different but equally difficult personal or family challenges. Paul is very realistic when he says, 'rejoice with those who rejoice, and weep with those who weep' (Romans 12.15). We do both, all the time. We don't live in isolation. We communicate and care, and pray. We are family.

Thank you for being in my family of supporters. I am so thankful to you, and all who have cared for me, and the NHS, and to God, our healer and our ultimate home.