This isn’t the update you were expecting

My Allograft 2018/19 – 2. Tuesday 11^th December 2018

By Andy Burrows, 11 December 2018

The bit where things were going to plan

I’ll start with the part where things were going to plan. But feel free to skip to the next section. I would if I were you. It’s much more interesting and important!

Yesterday was another busy day, trying to get everything done before going away for six weeks.

It started with an early dog walk with Heidi. I’ve been doing this 4.5 mile walk with Heidi in the woodland near our home almost every day, even when I’ve been anaemic and really struggling.

And then as soon as I got back home, I had to get in the car and drive to Southampton (45 minutes) for the “consent form” meeting with consultant (the donor transplant director) at the hospital. I was in there more than an hour, and then came home.

Then there was no let-up – tidying up, filing, bits of correspondence, phone calls, going to the supermarket with Heidi… and then finishing off the day sitting watching Home Alone 2 with Tom and Anna.

This morning, Tom and Anna had taken time off college and school to see me on my last day at home for a while. We went together on the dog walk. And then I came home and started packing.

I phoned the transplant ward in Southampton Hospital to check what time they wanted me to arrive – between 5 and 6pm, I was told.

It made me think – and I reflected on this during my previous transplant (the autograft) – I’m going to put myself through the most intensive treatment of my life, and intentionally face all the risks, the infections, the sickness, the soreness, etc… and yet I’m pretty healthy right now going in.

The transplant team would tell me that that’s the point. I need to be healthy going in. I need to be in complete remission, or it won’t work. And I have to be strong enough to tolerate the process.

And even though the R-ICE chemo that I had in the summer was tougher chemo than I’ve had in my three previous cancer battles, after 2-3 months I’m not feeling too bad. Still fighting fatigue a bit. And it takes me much longer than it should to get rid of aches and pains after exertion (such as putting up Christmas decorations). But I’m basically fine. My hair has even started reappearing.

And the weirdness is even worse this time because the road ahead feels so long. From feeling fine now to a long period of either feeling rubbish, being at risk of serious illness, or having to live an abnormal cut-off lifestyle.

Why would I put myself through that?

And the answer is because this stem cell transplant is currently the only viable treatment that has a chance of curing me and getting rid of this thing that has blighted almost a decade of my life. Without it there would be another relapse, more chemo, more relapses, until a time when chemo stops working…

It’s just that it takes a lot of trust and faith that the doctors and experts know what they’re talking about – that being ill isn’t necessarily the same as feeling ill.

The part that I wasn’t expecting

I was expecting to be posting this update from my room in the BMT ward in Southampton Hospital this evening, having unpacked and settled in.

But I got a phone call from the transplant consultant around 3pm which changed the plan. So, I’m still sat at home as I upload these words to the internet.

The PET CT scan that I had last Friday apparently shows one spot of abnormal activity in my liver, and, after big discussions involving the specialist radiologist and lymphoma specialists, the consensus is that this is a return of high-grade lymphoma.

All my other test results were perfect yesterday when I met the consultant. This scan result was the only one they had been still waiting for, because the scan was so close to the meeting. This was acknowledged yesterday, but she hadn’t expected any problems with it.

So, this is unexpected, and it means that it wouldn’t be right to go ahead with the transplant right now.

Cutting a long story short, Heidi and I then got in the car and drove (without my suitcase) down to Southampton where the consultant and transplant coordinator met with us and talked it through in more detail.

The good news is that they have identified a new chemotherapy regimen that they are fairly confident will get me into remission, and then I can go on and do the stem cell transplant in about two months’ time.

So, I will be waiting for a call from Basingstoke Hospital tomorrow (I guess) to discuss the rearrangements for the next chemo. This new chemo sounds similar to R-ICE in its intensity, and I believe it’s similar in terms of being inpatient treatment, similar impact on blood counts, and similar side effects. And it sounds like I’ll have two cycles, another PET CT scan, and then some “holding chemo” depending on the date they can rebook the transplant. But I’ll be able to say more once I’ve spoken to the doctors in more detail about it.

Those are the basic outline facts.

In terms of how I’m feeling about it – just picture me with my jaw slightly dropped staring blankly into the middle distance! I’m not quite sure what to think or how to feel!

Mainly I’m thinking, “darn, I have to unpack my suitcase without going anywhere!”

Then I’m thinking, “what should I do tomorrow, and the next day, and the day after that? I thought I was going to be connected to a drip, having pre-transplant treatment in hospital. Now I have to find something else to do!”

And then, “oh dear, that means that if the transplant is two months later, that means my recovery will be two months later, and I’m definitely not going to be back in circulation until 2020!”

And that leads to more mulling over, wondering how that potentially will change my life. Sure, it will hopefully rid me of lymphoma. But will it change the direction of my career, because of the length of time being sidelined? Lots of time for reflection – when to get back in the saddle, and which saddle, and which horse to get on!

But, for now, I’m going to stop writing. I need to give my brain a break. One step at a time. Today’s step turned into something unforeseen. Tomorrow’s step is now different. But the aim and objective, and the hope, is still the same.

Don’t miss my future blog posts

I’m not going to post on LinkedIn with a link to every update. I will on Facebook. However, you may have noticed that Facebook and LinkedIn, and other social media, don’t always show you everything from all your friends or connections. So, if you don’t want to miss any of these blog posts, then I have got a mailing list that will automatically notify all subscribers of new blog posts. So, if you definitely want to see everything I post, subscribe on the mailing list.

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

God bless!

Becoming a stem cell donor

By the way, if you want to find out more about being a stem cell donor, 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.)