I’ve not blogged for a while as there hasn’t been a great deal happening from a SCT point of view, which is a positive sign that medically things are stable. A speedy SCT update; I still suffer with GvHD in my mouth and this is being managed using formulas. I’m aware of my mouth feeling ‘different’ however it’s not painful, annoying more than anything else as mucoceles (blisters) pop up in my mouth when I am hungry or when I’m about to eat. Due to the GvHD the wean off cyclosporine continues to be slow in an attempt to reduce the likelihood of GvHD popping up elsewhere and to prevent the current GvHD from getting worse. I have embarked on a programme of vaccines which is normally administered to babies i.e. tetanus, meningitis etc. in order to provide immunity which was lost as part of the SCT, I’m now roughly half way through the list. The regular blood tests are all consistent and the cell counts sitting nicely in the normal ranges, there has been mention of carrying out a bone marrow aspiration but I’m doing my utmost to avoid that test and as all my other results are perfectly normal I will be challenging it, if / when mentioned again. Ignoring all the above tests, for me the bottom line is that I well extremely well and that isn’t’ taking into account all I have been through. If I take into account what my body has endured over the last two years than I’m ridiculously well.
As this is my final blog it seems a good time to express my gratitude to an abundance of people and organisations. From the first time I went to the GP, I was taken seriously, I’ve heard so many horror stories of patients not having their concerns taken seriously enough to warrant a simple blood test so I am extremely grateful to the GP who ordered that initial test. After the initial test of was referred to the local hospital where additional bloods and a bone marrow biopsy were taken, once again those staff were supportive, kind and acted with urgency which potentially saved my life. Then onto Barts in London, words will never express my gratitude to the wonderful staff from my consultants to the person who changed my bedsheets, each and every one got me through h*ll mentally and gave me a second chance at life. Heather Oakervee, my main consultant and my Clinical Nurse Sam were beyond fantastic. In short the NHS were bl**dy amazing and to this day remain so with all the after care. Naturally, leading on from the NHS I simply have to say how grateful I am to Anthony Nolan. Anthony Nolan don’t just have a bone marrow donor register, they provide so much support to patients and families in a variety of ways, before, during and post treatment. They campaign hard for the good of all the patients who have had transplant and for those poor souls who will one day find themselves in that terrifying position. Of course they provided me with two lots of stem cells so without the hard work of all the staff and volunteers I may not have been so fortunate. Finally but by no means least, a huge thank you to everyone who supported me through the last two years whether it was a kind email or bringing boxsets into the hospital for me to watch, all your support made a difference.
I didn’t thank my donor in the above because I’ve thanked as best I can in a letter. In twelve months I will have the opportunity to ask to make contact with him, some days I think I will and others I’m not so sure it’s a good idea. Neither words nor actions can explain to a person how it feels that your life is simply down to them and when it’s a stranger who doesn’t know a thing about you, it’s overwhelming. I hope every day that he is blessed with a good life, as free from life’s troubles as is possible. He will be with me forever, his blood runs through my veins and to mark this I recently got a tattoo, a mark of survival but a reminder to myself that I owe my life to another.
I could write a number of blogs about how AML and a SCT have altered me, opening my eyes to many things in life I had never previously had experience of and in many cases wasn’t even aware of. It goes without saying if I could turn back the clock and find a way to avoid AML I would but I am, I believe, a better person for all I have endured. One thing I have learnt is that there is kindness in bucket loads it’s just rather sad that you have to go to some very dark places to find that kindness. With each day I take up the reins of life more and more, in doing this there are times when doing that is all consuming, I try my best not to become to self-involved and to carry out my promise to myself and my donor, to pay forward his kindness when I can.
5th February 2017 was my rebirth day, I racked my brains what to do in order to mark the occasion. As it’s a first birthday the idea of playing pass the parcel and stuffing myself silly with jelly and ice cream was very appealing but I felt it wasn’t momentous enough so I decided to do a ‘first’ on my first birthday. I organised for myself and a few friends to go to a safari park and feed lions, then release them into their reserve. After which we went for lunch with some other friends, which was obviously finished off with a ‘rebirthday’ cake.
Now I have hit the twelve month milestone I feel I can move forward with AML and the transplant as a part of my life rather than consuming my life, as it has so often felt during the last two years which is why I have decided to make this my final blog. My life in the Cotswolds is beginning to fall into place, I have recently put in an offer on a property and have everything crossed that by spring time Aster, Khan and I will be settled in our new home. I’ve recently been skiing, which was my first holiday in two years and it was amazing, many times I had to catch myself from having a teary moment as I looked out the spectacular scenery, enjoyed the adrenalin rush of bombing down the mountain and having a cheeky hot chocolate / gluhwein pit stop or three was the icing on the cake.
If I could pass on any wisdom, I would say to anyone facing a life challenge; you are stronger than you ever imagined, have faith in your in mind and body to carry you through this time. For those days when you aren’t facing a life challenge; be kind, give when you can, be it blood, a cup of tea to a homeless person, a helping hand to a friend moving house because kindness makes a lot of things easier and should anyone you love need the kindness of a stranger you’d move heaven and earth to make it happen so lead by example and hopefully people will be inspired to follow suit.