Home for a Wonderful Christmas

My Allograft 2018/19 – 4. Wednesday 2^nd January 2019

By Andy Burrows, 2 January 2019

Happy New Year!

Happy New Year everyone! I just thought I’d do a little update.

I have to say, last time I updated you I was still a little shell-shocked at the change of plan, and a little cautious thinking about what Christmas at home was going to be like.

But spending Christmas at home has been great – so much better than it would have been in hospital. It’s turned out that I’ve kept well enough to see family, and partake of Christmas meals and celebrations, almost as normal. And that has been so incredibly fantastic. Praise God!

I actually deliberately left it until this point to do an update, because chemo takes a while to wash through its full effects, and I wanted to see how it all was going.

Some new side-effects

I had the first lot of the new top-up chemo on Monday 17^th December, and the second lot a few days ago on New Year’s Eve.

 I was quite nervous, because they’d warned of a couple of new side effects I haven’t had to worry about in the past.

And, I guess since I’m at the stage where they are prescribing fairly bespoke treatment, this chemo doesn’t seem to have a standard acronym to go with it.

The drugs were:

• Rituximab
• Oxaliplatin
• Gemcitabine

The last two are ones I’ve never had before. But Rituximab is something I’ve had almost every time since 2010.

The one thing I was not looking forward to was the possibility of what they call a “laryngeal spasm”. That’s a potential side effect of Oxaliplatin. And the nurses are actually really careful in helping to avoid it. The reason for that is that, even though it only affects a minority of patients, it’s very scary when it happens. It feels like you can’t breathe. So, they tell you to bring a scarf to wear over your mouth when you go home, and bring a flask for a hot drink to sip as you leave the hospital. That’s because the spasm is usually brought on by moving into cooler atmosphere. I was also not allowed to leave the hospital without an escort, even though I live so close that I can be home in seven minutes!

So, I followed their instructions, even though it feels like you look a bit stupid. And thankfully, I didn’t get to experience a laryngeal spasm!

What I have had to contend with is something they call “peripheral neuropathy” – big time!

It’s something that you can get with almost any chemo – numbness, cramp and ‘pins and needles’ in fingertips particularly. And I’ve had cramps and mild numbness before.

This time it’s been painful and weird, just for a few days after each cycle. And it’s all related to the impact on nerve endings.

Every time I go into cooler air, or touch a cold door handle, or use cool water to wash my hands, I get really painful ‘pins and needles’ that lasts anything up to a few minutes. Outdoors it subsides after about 15-20 minutes, but wearing gloves doesn’t seem to make a difference.

When I have a drink that isn’t at least warm, I get the same ‘pins and needles’ sensation in my mouth and throat. It feels like drinking a pint of a really fizzy drink fast, but 10 times worse!

Related, I guess, because it’s similarly nerve-related, are the stars in my eyes. We all occasionally get that when we stand up too quickly. I tend to get it worse when I’m anaemic. But in this case, it can happen almost any time and last for a minute or two, such that I can hardly see.

And finally, whenever I eat, I get bad shooting pain in my salivary glands between my jaw and my ears – literally every time I put something in my mouth. It last a minute or so and then I’m fine.

All these things subside after 3-4 days, so they’re receding now after the second cycle. But they’re not pleasant!

And some familiar ones

Once those first few days are out of the way, the next thing to contend with has been fatigue. Nothing major, but a noticeable lowering of energy when I’ve been on dog walks. And I guess that’s going to be worse after this second cycle. But we shall see.

And as far as blood counts, and risk of infection, has been concerned, it’s a bit complicated. Don’t worry if this makes no sense to you!

Basically, whereas normally they would get me having GCSF injections to make sure my neutrophil count stays up to fend off infection, they haven’t this time. That’s because GCSF can also suppress your platelet count, and a) my platelets have dropped badly in each recent chemo cycle, and b) I needed my platelets to recover before the second cycle otherwise they have to reduce the dose or defer the treatment.

And as it turned out, the latter is what happened. I had to have a blood test first thing in the morning on the day of the second cycle, and my platelets had only bounced back from 43 (last Friday) to 63 (on Monday), whereas they needed to be 100. The doctor commented that my platelet count has rarely been over 100 during treatment. But he’d discussed with the pharmacist and they reckoned they could go ahead, but with a 25% reduction in the dose of Gemcitabine.

And I’ve stayed pretty healthy, apart from the cold I had last week. I reckon I caught that from a hospital visit, rather than any lack of care at home! But with what I’m going through, it’s always a risk. Fortunately, the timing was just right and it didn’t throw us off schedule, and thankfully it didn’t turn into anything nasty that might have involved a hospital admission.

Oh, and by the way, my hair seems to have avoided falling out again so far – could still happen, but we shall see!

So, what steps next?

So, the next things I have to look forward to are:

• Another PET CT scan in a couple of weeks, to check that the residual hot spot has well and truly gone now;
• Re-tests of lung function, kidney function and heart;
• A catch up in the transplant clinic.

If all goes to plan, I’ll be admitted for the transplant, I think, sometime after 21 January.

And finally

Finally, I was struck by a couple of quotables…

The first is from a line from the recent Mel Gibson film, Blood Father. I was watching it the other day with Heidi.

This made sense to me, since I feel I owe my life to so many people – doctors, nurses, family, friends… and in a major and profound way, my precious donor…

“When you owe your life to someone, you better live it.”

And I think there’s probably an even more profound sense that we all, no matter what our trials, no matter how easy our lives are – we all owe our life to someone.

So, let’s go and live it!

As Ben Fogle says in his book, Up, “Add life to your days not days to your life!”

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.)