A Bump in the Road

I am now 20 months into my transplant journey. Up till now it has been one of steady progress: a stem cell transplant from my sister that took hold; ever improving blood results; manageable Graft vs Host Disease; and energy returning, leading to more activity.

But in the last 4 months I have hit a complication: increasing stiffness, making physical exercise difficult. Rather than getting stronger since April, as I'd hoped, through more physical training, I have done less and got weaker.

The reason for this was confirmed yesterday at my consultation at Bart's. I am experiencing a secondary stage of Graft vs Host disease (as systems in my body react to Caroline's blood cells) that is causing my skin to thicken and tighten. It is like scleroderma. It is a common later Graft vs Host Disease symptom that the doctors look out for. Doing my morning exercises is now painful rather than a pleasure; but the doctor says I've got to keep going, and do as much as possible; especially to extend the tendons of my fingers.

Thankfully it is August, so I can enjoy swimming in the sea most days; it feels good - both the gentle exercise, and the cool of the sea water.

You will remember that my first phase of Graft vs Host Disease gave me a very sore mouth, making it hard to eat and to take hot drinks. I wanted custard, yoghurt and ice cream. Then I couldn't tolerate fruit with its acid, and all spices were off the menu. Thankfully, this has now 95% gone, and I can enjoy curry and all foods once again. This second phase is also not uncommon, and with the right treatment, it too may pass. The treatment is to increase my Ciclosporin again, and then to supplement that with other drugs, if necessary.

But all this is disappointing, as I had hoped to get off all the immunosuppressants by the end of the year. They had been dramatically reduced since Autumn last year, and I am completely off steroids, but now they have increased again. So, this is a bump in the road.

It may be that I have to stay on them for the rest of my life. I have two friends who have had kidney transplants, and they are both still on immunosuppressants and steroids, and they manage all right. So, we shall see. I would hope to be content whatever happens.

At the moment, my main prayer and my main aim, is to get full mobility back; so I am grateful for a clear diagnosis, and for today's drugs. Please pray that they work for me.

THANKFULNESS. Despite this setback, we have had a good 4 months since April:

We are enjoying settling into our new home.

I am loving preaching again, at St Paul's Clacton, and preached a series of 5 in a row on Paul's letter to the Philippian Christians in May-June. You may remember that I learned the letter by heart, and thought about his words a lot in hospital. Paul learned contentment, even in a Roman prison. So it was good to be able to write out and then share my thoughts through preaching.

I had a great week of golfing in Scotland with 5 friends.

Finally, we had the Family Road Trip of a LIFETIME in California, in July. Our 3 family units in England flew over to join Jo and Vince's family in San Francisco Bay, and we hired 4 campervans to tour around California for 17 days, mainly down the coast. We had a lot of fun and made a lot of memories, with many highlights: Vineyards, Blue Whales, Milo taking his first steps (he's just one - hats off to Mark and Alice for the way they managed), and Raphael's baptism in the ocean at Santa Barbara. We had nightly barbecues round the fire pit, enjoyed my California playlist, and watching the cousins playing together; and one evening we were all dancing round the fire, under the stars.

A dream come true

I first thought of doing this before going into hospital. If I survived I wanted all the family to see where Jo and Vince live, and for the cousins to be together. In hospital I started to think about a route. I am so thankful to have been given life and strength to do all this; and for a wonderful family who all pulled together to make it work! God has been good to us.

Now Mary and I face a quieter season, in which we hope to be healthy, and to settle into our new life, making friends in Frinton, playing golf, and serving the church here and in Clacton.

Thank you for walking with me on my recent journey, for your concern and prayers; and thank you too to those of you who wrote back with things that we could pray for you. It has been a privilege to do so. Keep those messages coming.

We are blessed to have so many good friends.