Treatment Update 21 October 2018

By Andy Burrows, 21 October 2018

I thought, rather than anything too deep, it’s probably time for a news update and a look back over my chemo experience.

I have now arrived at Base Camp, using my Everest-climb analogy!

I had three cycles of R-ICE chemo, which meant three 4/5-day stints staying in Basingstoke Hospital. That’s because a couple of the drugs have to be infused over a long time – one was a 24-hour infusion (with a short break in the middle to change the bag of fluid), another was an 8-hour infusion. And because of the timing of them, these would normally finish sometime in the early hours of the morning.

In all cases, care on the Wessex Ward, which is the inpatient cancer ward, was top notch in every way from everybody – from the consultants and doctors, to the nurses, healthcare assistants and domestic assistants. I couldn’t fault it. It was like going to stay with family… almost!

I can remember posting a video on LinkedIn about the weirdness of chemo just after the first cycle – weird because I was in hospital one day and walking the dogs in the forest the next. If I can, I’ll include that video on the blog page here, so that you can see the contrast.

The contrast strikes me looking back at that, because I remember having the energy to do that walk and feeling pretty normal a few days after the first cycle (once the nausea had passed).

(By the way, you can also tell the video was after the first cycle because I’ve still got hair! Two weeks after that video, it all fell out! Now, when I walk in the forest, I am self-conscious about my baldness, because it’s so obviously chemo-baldness!)

But I’d forgotten (not sure why) that the effects of chemo are cumulative and slightly delayed.

So, with each cycle the sickness and fatigue were worse, and the impact on my blood counts was worse.

The third cycle finished on 22 September. And following that, I had to inject GCSF for ten consecutive days to try and boost my neutrophil count (to help me fight infection)… but each blood test barely registered above zero during that time.

I was also off my food for most of the first week after chemo finished (and the last couple of days in hospital), because just the sight of it made me feel sick.

On two occasions after that last cycle, my haemoglobin was so low that I had to go into hospital for blood transfusions. That also meant I was even more weak and breathless than ever. I still went with Heidi to walk the dogs, but I didn’t find it easy. Even on the flat, let alone the slight incline, I was getting breathless and the heart rate monitor on my Watch was showing more than 150bpm!

But I kept going on the basis that I knew it was good for me, and I was fairly sure I wasn’t doing any damage by overdoing it.

Then I also had three days or so in hospital with an infection. A week after I finished chemo, I started feeling achy all over, and so I kept an eye on my temperature. Once that got up to 37.7C, I phoned the 24-hour helpline and they said that it sounded like I had an infection and they wanted to have me in hospital for some IV antibiotics.

They put me in an isolation room for this stay, because I was neutropenic (no neutrophils). So, there were full infection-control procedures in place – everyone (nurses, doctors, cleaners, visitors) had to wear a plastic apron, gloves and a mask to come into the room!

And while I was in hospital with the infection, I had to have a platelet transfusion too!

So, it’s just a bit shocking the way that the side effects got worse and worse. The autograft was still worse (in 2015), but only by a little bit!

However, things have settled down now. I’m eating properly, and the walks are less tiring, and my neutrophils are back to normal. And since I don’t have any more chemo planned, that means I can ease off the infection avoidance measures – care in diet and in being around lots of people. So, I’m allowing myself trips to shops and cafes.

I have to recharge with a nap very often during the day, and go to the hospital once a week to have my PICC line flushed and redressed. But apart from that, I’m trying to make the most of not having my life ruled by hospital appointments, tests and phone calls (I reckon I’ve spent about 75% of the days in August, September and the first part of October, in hospital for something – either as an inpatient or outpatient).

So, that means I’m in that transition period now, between the chemo and the allograft.

The gateway – the last part of the chemo treatment and the first part of the allograft – is a scan, a PET CT scan. (I’ve written before about what that’s like, so I won’t repeat here.)

A PET CT is like a colour version of an ordinary CT scan (which is monochrome or greyscale) – the colour in a PET scan represents levels of “activity”. So, the doctors can tell not only where there are abnormal lumps and swelling, but also whether there is abnormal cell growth activity in those areas, which would be indicative of malignancy (cancer/lymphoma).

Lymphoma (although not the type) seems fairly straightforward to see on a CT scan before any treatment. But after treatment, there is a chance that chemo may have shrunk the lymph nodes back to normal size and then it’s hard to tell. So, the PET scan highlights whether the activity within the otherwise ordinary-looking lymph nodes is abnormal or not.

At least that’s my understanding!

When I was first diagnosed, I was told that this scan has to show perfect remission in order to move on to the allograft. However, my haematologist has since admitted that he expects to see a few specks of residual lymphoma, and that they are likely to still go ahead with the allograft even so.

Typically, Heidi asked me on the morning of the scan (Thursday 18^th) if I was nervous. And I looked puzzled. “What? Of having a scan? No! It doesn’t hurt or anything!”

“No, I mean because having a scan means you have to wait for results.”

“Yeah, but that’s not until next week! Today is the today to worry about whether I can avoid the traffic and get to Guildford on time, and find a parking space. Next week is when to think about the results!…

“And even then I’m not worried, because the last scan was so positive,” I added. (When I mentioned the last scan, I meant the CT scan I had after the second lot of chemo, on 5 September. That showed, “an excellent response in all known places where disease was present,” according to the reporting radiologist.)

So, we’ll have the results in the next couple of days. And I am starting to think ahead to the mountain climb. I guess it would just be useful to know when it’s all going to happen.

What I know so far about the transplant is that none of my siblings can be donors, because they have been tested, and they’re not a match for my blood and tissue types.

And just like 2015, it’s looking like there’s a chance of me being in hospital over Christmas. But further details of the plan will become clearer in the next 2-3 weeks or so once a donor has been found.

Until then, I get some peace and quiet to recharge before the real tough stuff starts.