Coming out of the clouds

My Allograft 2018/19 – 15. 22^nd February 2019

By Andy Burrows, 22 February 2019

Progress measures

Things are continuing in the right direction, I’m pleased to report.

Yesterday, I tried to eat something, but after two spoonfuls of Rice Krispies I couldn’t take any more. It was bland, and my stomach was complaining.

I tried again this morning and managed one whole Weetabix, but was still almost sick on the last mouthful.

At least I tried! And at least I wasn’t actually sick!

So, I’ve stuck with Fortisips and Fortijuces. I even tried a Forticreme (a kind of high energy mousse) which, to be honest, was really hard work.

And I’ve now had two whole nights where I haven’t had to run to the toilet several times! Hopefully not too long until I’ve seen the back of the diarrhoea!

Isn’t it bizarre the measures I have to use to gauge progress?!

Here are some more small signs…

The nutrition team decided to free me from the “feed” bag in the middle of yesterday. I sensed reluctance, because I’m not properly eating yet. But they conceded that I was trying, and I am at least having some calories via the Fortijuces.

And although my mouth and throat haven’t really suffered from soreness and ulcers (which are common), they had been feeling really dry. But now I can feel them healing up and getting back towards normal. So, I said to the doctors that I can take whatever pills they want me to.

And those two things (the removal of the “feed” bag and having medication in tablet form rather than IV) have practically freed me from the constant connection to the IV drip.

And as it happens, one of the criteria for being allowed home is being able to tolerate Cyclosporine in tablet form (rather than having to have 4-5 hours of IV). They make a thing of this because the tablets are so big and difficult to swallow. And I’m going to be on those tablets for a few months as an essential part of managing the transplant engraftment.

So, my drip stand is empty. But I had a little pot full of pills instead – and I managed them ok.

The other connection to my line, which I need to get rid of in due time, is the syringe driver pump which delivers my constant flow of anti-sickness medication. I agreed with the doctor to reduce the dosage gradually before removing it later if I feel ok. The last thing I need is to be feeling sick if I don’t have to. But it shouldn’t be long until I’m back onto pills, and say goodbye to the pump. And then I really will be free!

So, I’m trying not to rush things, but take positive steps as I feel ready and confident.

The last push

And once all my drips had been disconnected yesterday, the nurse brought a set of clippers in and shaved the remaining hair off my head. And then I had a shower.

So, now I’m a proper baldy (again)!

The consultant came to see me on her rounds yesterday afternoon, and for the first time mentioned the words, “go home”. She reckoned that if everything continues to go smoothly, I could probably go home in 7-10 days.

It’s great to feel like I’m entering the last part of my Everest climb.

But on the other hand, I don’t want to get my hopes up too high. I know that GvHD (graft vs host disease) and any infections are still a risk. Apparently about 50% of allograft patients are readmitted to hospital with some complication or even after going home.

So, I know that this recovery is unlikely to be linear! There will probably be setbacks.

Which makes me all the more grateful for the days that do move me any amount in the right direction.

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Thanks for being interested in my journey. And always feel free to interact and let me know your thoughts.

God bless!

What is a stem cell transplant?

If you want to get more insight into what a stem cell transplant is and how it works, the Anthony Nolan Trust has some really good information in its website. You can find that here: https://www.anthonynolan.org/patients-and-families/understanding-stem-cell-transplants

My 2015 transplant was an autologous stem cell transplant (a.k.a. an autograft). In 2019 I’m having an allogeneic VUD (voluntary unrelated donor) stem cell transplant (a.k.a. an allograft).

Becoming a stem cell donor

By the way, if you want to find out more about being a stem cell donor (please!), here are a few links (UK-based mainly):

Anthony Nolan donor register

British Bone Marrow Registry

DKMS

(Stem cell and bone marrow donors are amazingly kind people who offer to sacrifice their time and endure some mild discomfort to help save the lives of people like me who have a type of blood cancer – lymphoma or leukaemia.)