One hundred days

FREEDOM !

We are back home in Frinton-on-Sea. This photo was taken December 22nd, the day I was released. I was well wrapped up.

To be back for Christmas was wonderful. To see Mark and Alice, and then Ed and Kate and Izzy and Freddie, was a tremendous blessing (they isolated for 10 days over Christmas in order to come and see us). It was a chill time with Mark and Alice, and then more noisy with the Grandchildren. They have discovered Monopoly (Pokémon version), and yes, there were tears! Mary had to learn not to bargain so hard, or to partner with Izzy!

It is 4 weeks since I last posted, back on December 16th. I was waiting for my neutrophils to start going up so I could go home. Well, they did! On Tuesday 19th December they suddenly started shooting up, from 0.0 to 0.5, then Wednesday 0.6, Thursday 0.7 and the Doctor said I could go home. They are now up to 3.6 at the last count. So, thanks to Caroline's cells, and God's healing, I am making progress.

We are into a new routine of isolating at home, to conserve energy and avoid crowds. We go shopping when it is quiet. We make the weekly trip up to Bart's on Wednesdays for blood tests, to see the Consultant, have transfusions, and collect drugs. It is a long day, because it's a 2 hour journey, and because of all the waiting involved in a busy hospital. But so far the trains have been reliable, and because my neutrophils are high the doctor is happy for us to come by train, but not at not rush hour.

So, my neutrophils, which protect against infections, are doing well; but my platelets (that prevent bruising and bleeding), and haemoglobin (energy) need to go up. So I will need transfusions for a while, but the Consultant is not concerned, he says I am doing well. And we are at home.

Sometimes I get tests and transfusions locally (Clacton and Colchester), and friends have been tremendous in offering to drive, because I am not fit to be let out on my own. I can suddenly feel sick, or faint and weak. So Mary, or someone, has to travel with me.

To build strength I do an exercise routine each day, and go out for a walk to the beach (5 mins away) if it is dry and the temperature is not arctic. Otherwise I walk round the house, and up the stairs, listening to podcasts or books.

The phase we are in now is like a long slow 100-day march. Once we get to around day +100 (I am now +40 from my transplant), the Consultant will hope to start dropping my Ciclosporin, the immunosuppressant. Then I will be into a new phase, with the next challenge (GraftVersusHostDisease, if my sisters cells are strong, as we hope they will be). In this stage our hope is for Caroline's cells to completely take over my bone marrow, and produce healthy blood, in all its complex parts.

From Mary's and my point of view, it is very slow going, and all the days seem the same. Hospital was intense, and super exciting as every day I met dozens of people and enjoyed chatting, and watching them doing their jobs. Now it is quiet, and we're just not used to it.

It is like the long slow bit of a hike, when the scenery all looks the same, or there is no visibility, and it's just a slow drag up hill. For those who know it, it's like the ascent from Ingleton up Ingleborough in the Yorkshire dales. Not the most exciting walk, and it feels endless! It is a different challenge when our 40 years together have been so full and busy. You will think, 'make the most of it, it's a gift!' And yes, it is, of course it is: time to read, to catch up with the films and dramas we missed, and to watch every Liverpool match!

But as people who like to be active and make a difference, we often feel that life is passing us by. So, pray that Mary doesn't die of boredom, or better, that the golf course dries out and she can get back out there. It has not been helped by that fact that I have been off my food, feeling nauseous, and unable to eat anything interesting - no spicy food, no strong flavours, no wine.

Of course, our faith can get us through. As St Paul wrote, 'I can do ALL THINGS in Him who strengthens me'. In prison, his days awaiting trial in Rome will have felt very long and featureless; his food will have been very ordinary; but he kept himself busy praying for all his friends in dozens of communities around the world, and writing to them.

That's what I am doing today! Thank you for sharing the journey, and we do pray that in your busy lives, God protects and blesses you all,

with our love, Jonathan and Mary

PS This is my new hairstyle!

So usually I wear a hat to keep warm.

And to show off my allegiance!