Fourth chemotherapy cycle complete

I had my fourth chemotherapy cycle (one infusion of Rituximab, followed by 4 infusions of high-dose Cytarabine 12 hours apart) as an in-patient at the end of last week. This time I was in a bay with four other patients rather than in a side room, so it felt rather less isolating than cycle 2.

I was fortunate to end up with a window view. It might not look much (I suppose it isn’t, really), but the birds landing in front of it (mainly pigeons) kept me entertained.

The view from my hospital bed

The view from my hospital bed

The first four infusions of this cycle were straightforward. It’s sometimes been a struggle for nurses to get a cannula into me (my veins are deceptive) but this time it was a painless, first time experience. Just before I thought I was about to have my final infusion (Friday lunchtime) I took this photograph and announced to the world that I was nearly finished. I really shouldn’t have boasted – as a few minutes later I found out that my cannula had become slightly dislodged overnight, so a new one was going to be required.

The selfie king!

The selfie king – still with great eyebrows!

Despite the valiant efforts of no less than four members of staff, putting another cannula into me proved unsuccessful. At this point, the decision was made to give a picc line instead. I was always going to need one for the stem cell transplant later on in the year, so this incident just brought it forward a few weeks. Having the picc line delayed treatment by a few hours, as it involves putting a fine flexible tube into a vein in the arm under local anaesthetic followed by a chest x-ray to make sure that it was in the right place. Mine needed a bit of adjustment, so a second x-ray was required to double-check.

My picc line is 42 cm long and terminates somewhere below my neck, above my chest. The whole process was painless and the good news is that I will need no more cannulas during treatment. It also makes taking blood samples much simpler, as it can be used for those too. No more needles! Hurrah! The downside is that I need it flushed and the dressing changed on it every week. A district nurse will be visitng to do this for me.

I’m feeling much better at this point in time than the equivalent after either cycle 2 or 3, but I am extremely tired. I’m hoping that a few days of good sleep will help. But feeling tired is much better than not feeling like eating or drinking as I did after cycle 3. I’m hopeful that I may be able to enjoy some of the better weather that’s been forecast here for the next couple of weeks as a consequence. I have a little yellow friend sitting in the garage who’s desparate for another run out soon …

Is it playtime yet?

Is it playtime yet?

The light at the end of the tunnel

Hello again! *furiously dusts the cobwebs off the blog and its readers*

The last time I felt able to sit down and write was almost a month ago while I was recovering from my second chemotherapy cycle. In the end, I had around four days of relative normality after that treatment. During that time I managed a short trip out from home in my now sadly neglected Caterham.

C7 GNU in Dale Abbey

C7 GNU visits Dale Abbey

Then I went in to hospital for the third cycle a day or so before I was expecting to go in. And … the next two weeks are a blur.

I feel as if I’ve been swimming underwater in a dirty swamp, unable to see where I am, not really knowing which way is up or down. At times I’ve found it difficult to sleep, eat, drink or move. I certainly haven’t been able to concentrate on anything that requires even a modicum of brain power. Homes Under the Hammer, Tipping Point and Star Trek re-runs have exercised my mental capacities (such as they have been) to the maximum. At my nadir, I was obviously feeling really sorry for myself.

I found this photograph of myself having cycle 3 that I have no memory of taking. It’s dreadful, but it shows that my eyebrows remain intact. It also illustrates the best investment I’ve made so far to get me through this process – a pair of Bose noise cancelling headphones. The sights and sounds of a chemotherapy day clinic can be overwhelming, so the ability to shut out the world for short periods of time has helped me to stay sane (well, sane-ish).

Me - Chemo cycle 3

My eyebrows are my best feature!

The light at the end of the tunnel

However, in the last 48 hours I’ve started to feel human again. I’ve been eating and drinking normally. I even enjoyed a beer for the first time in weeks last night (and this lunchtime too – but don’t tell my consultant). I’ve started to put back on some of the 8kg that I’ve lost since cycle 3.

The lumps that were so prominent on my neck two months ago have gone. This means that the treatment is working. I had a CT scan last Sunday and I’ll have the results of this when I see my consultant next week. I’m hoping fervently that it shows no evidence of disease elsewhere. All being well I’ll have cycle 4 next week too. There’s no rest for a lymphomanic on this treatment protocol!

The tunnel coming up in August

Somewhere in the middle of all of this I saw my prospective stem cell surgeon. He rates the Nordic chemotherapy protocol as a 6 or 7 on a difficulty of coping scale. He rates a stem cell transplant, the preparatory chemotherapy that goes with it and the extended recovery time as a 10.

I really hope that he’s exaggerating, as I’m now pencilled in for this at the beginning of August.

Race for Life – Team Holyoake III: Revenge of the Sith-ters

I’ve had a pretty soggy week recovering from chemotherapy cycle 2. Mantle Cell Lymphoma, although treatable, still needs more research before a cure can be declared. That’s why I’m so proud of both of my daughters for deciding to run in Cancer Research’s Race for Life – again – this summer.

I’m republishing what they’ve said on their appeal pages because they’re both brilliant pieces of writing.

Emily’s Race for Life

Team Holyoake III - The revenge of the sith-tersMy dad, Tim, was diagnosed with mantle cell lymphoma a few years back. This year he’ll be undergoing treatment.

After Dad’s diagnosis, my sister Jess and I signed up for Race for Life 2015 to do our first 10ks. Unfortunately, that year I ended up needing emergency surgery a couple of weeks before the race, so Jess ran it alone. But in 2016 we completed it together.

Last year was the first year we didn’t sign up, mostly because I became preoccupied with the small issue of getting married. Dad walked me down the aisle and gave a suitably embarrassing speech. And he’s going to do the same when it’s Jess’s turn (partner TBC).

So to that aim – this year Team Holyoake optimistically strides forward for the third time. Jess is a lot fitter these days (since she’s planning to become a personal trainer like some sort of healthy, motivated person) but if anything I have become even more attached to my sofa and my knitting. So please give as generously as you can.

(By the way: we’re running this in Exeter, even though I’ll have moved Oop North by the time it gets to the race itself. I’m strongly considering signing up for another 10k in the Midlands if I meet my first target of £200, just in case that motivates you…)

Emily’s Race for Life donation page is here if you’d like to make some encouraging noises.

Jessica’s Race for Life

Emily and Jessica as kidsWe’re baaaaaack! After a year’s hiatus, me and Emily are taking part in another 10k Race for Life!

In 2015, we signed up for our first 10k, which unfortunately I had to do alone because Emily was rushed into hospital for emergency surgery. Talk about going to the extremes to get out of running. In 2016, at my most unfit, we ran the 10k together. Last year’s hiatus was mainly down to planning for Emily’s wedding and general life and work conflicts, but 2018 is the year of the comeback. Plus I’ve got fancy new trainers so I’m raring to go.

As a lot of you know, our dad was diagnosed with Mantle Cell Lymphoma in 2014, and in January 2018 it was finally decided he needed treatment. It’s going to be a tough year, but we’re determined to kick Cancer’s ass from all angles.

If you know me, you’ll know that I’m training to be a Personal Trainer this year. And if you know me you’ll also know that I HATE cardio, and I run a bit like I imagine a badger would. Emily, on the other hand, seems to be uncharacteristically graceful when she runs. SO THIS’LL BE FUN.

So dig deep. Cough up. Donate. It’s important, and it’s changing and saving lives.

Jessica’s Race for Life donation page is here if you’d like to make some encouraging noises.

Why donate today?

If simply loving me and my fellow lymphomaniacs isn’t enough, today is the last day of the 2017/18 tax year. If you are a taxpayer, it means that you will help to increase the amount of money Cancer Research can claim back from the government in 2018. Also, if you’re fortunate enough to be a higher rate taxpayer, you can personally claim back an extra 20% relief on your contribution through your tax return this year, rather than waiting until next year.

Thank you to everyone who has already donated. And thank you if the Sith-ters have encouraged you to do so now!

Institutionalised

I’m not someone who becomes rapidly institutionalised. Or so I thought, until I experienced my first-ever hospital in-patient stay just before Easter.

After the minor setback of having too low a neutrophil count the previous week, I returned to clinic last Tuesday to see if the G-CSF injections had succeeded in raising it. They had – the count was nicely in the middle of the ‘normal’ range. However, they’d also noticed an anomaly with my liver function. This meant that although I was admitted onto the ward that day, I had an anxious 24 hour wait involving ultrasound scans and further blood tests to make sure that I was fit enough to receive treatment. Fortunately, everything, in the end, was fine.

The slight pause in treatment gave me the opportunity to observe the ward routine without the chemo fog. It runs like a well-oiled machine. You can definitely set your watch by refreshment and meal times, ward rounds, observations … everything is very predictable. Predictability is good – essential – in such a complex environment. I estimate that I became thoroughly institutionalised by around early evening on my first day. I’m not exaggerating when I say that one of my proudest achievements in the four days I spent there was organising my own medicine cabinet and being trusted to self-administer. Little things like that help you to keep some sort of control – even if, fundamentally, the institution wants you to take this responsibility on!

Cycle 2 supporting chemo drugs

Unopened stock on the left; ‘as required’ medicines next, morning only medicines, followed by ones used both morning and evening.

The second chemotherapy cycle started with 5 hours of Rituximab on the second afternoon. This was followed by four infusions of high-dose cytarabine over 3 hours, given 12 hours apart. By the time the fourth dose had finished, on Good Friday, I was more than ready to come home. The evening cytarabine sessions were the hardest to cope with, as these started at 10pm and so finished around 1.30am. That left only around 4 hours for sleep before being woken up for observations …

Unsurprisingly I’ve spent this weekend doing very little and trying to get some strength back. It’s returning slowly, but I am noticeably more lethargic than after the first cycle a few weeks ago. I think that’s due to lack of sleep during the in-patient experience than anything more sinister.

I can’t speak highly enough of the care that I’m receiving from the Royal Derby Hospital so far. Everyone on the haematology ward, from the cleaners to the registrar, was professional, cheerful and thorough.

Chemotherapy is definitely the toughest thing that I’ve ever had to experience, but I seem to be in excellent hands. Here’s to the benefits of being institutionalised.

Neutropenia

This morning I went to hospital to see my consultant for blood test results. I was expecting to get the go ahead to start my second chemotherapy cycle on Wednesday. My white blood cells (neutrophils) had other ideas. For treatment to continue as scheduled, they needed to be above 1,000 per millilitre (2,000+ is considered normal). Unfortunately my count was only 610, indicating neutropenia (*).

This means that my second cycle of chemotherapy has been put on hold for a week. Rats. However, everything else seems all right and my consultant was impressed that my lymph nodes have shrunk considerably.

I’ve been given a course of three G-CSF injections – a blood cell growth factor – to help the count recover. I gave myself the first injection under nurse supervision while I was at the hospital. It was much more straightforward than I feared (you ought to have seen my face when the consultant told me they were self-administered). You simply pinch some stomach fat (I have plenty), stick a very small needle into it and gently squeeze the syringe plunger until it clicks. It didn’t hurt at all thank goodness.

I’m now also the proud owner of my very own sharps bin to go with my ever-growing pill collection.

Sharps bin

(*) The Lymphoma Association provides an excellent explanation of neutropenia and the risk of infection on their website.

Hair today, gone tomorrow (probably)

The inevitable is happening. Just over two weeks after my first chemo cycle and I’ve started to lose my hair. Nicely in time for the ‘mini beast from the east’, which is raging outside the study window as I write. I’m pleased to report that my eyebrows are still holding their own, but the thatch on top is now falling away in ever-increasing quantities. It’s taking longer to unblock the shower plughole with every day that passes. I’m a bit like one of those moulting, long-haired “carpet dogs” – a human golden retriever (but grey).

Hair and eyebrows 17-03-2018

I intend to let my hair fall out naturally, rather than shave it off (unless it gets too irritating). I expect I’d feel differently if I spent more time (and money) on it. Like Noel Fielding obviously does, for example (*). I’m treating its disappearance as another signal that the treatment is working. While the lymphoma is not welcome, I’m determined that I’m not going to make any special concessions to it. It’s not the lymphoma that’s making my hair fall out – it’s the treatment, and it’s great that it seems to be working.

Note – never run a poll about your hair / eyebrows on a family messenger session. Democracy doesn’t work under such circumstances.

Poll which proves that democracy doesn't work in families.

 

 

(*) I don’t have anything against Noel Fielding. He’s way better than those blasted singing cakes, for example. But his latest hairstyle has been causing considerable angst in one member of the Holyoake family this afternoon.

Ever so slightly concerned …

… that I may have a bit of a fight on my hands when I eventually return to my desk at work. Perhaps I shouldn’t have left sugar mice in my drawer. Or maybe I’m hallucinating. I swear that’s an owl on my chair …

Large owl on my desk chair

Thank you to my excellent colleague, Jonathan, for giving me the best laugh I’ve had today. If you could mop the poop up afterwards I’d really appreciate it. I promise that I’ll make you a cup of tea sometime next year!

Progress

It’s 11 days since my first chemotherapy cycle and I feel as if I’m making progress. The last week has been characterised by long periods of total fatigue and feeling unwell. However, sometime around 1am on Saturday morning I woke up feeling as if I’d had a massive energy boost. I wasn’t able to get back to sleep for a few hours. I’m not sure what caused it. I guess it’s possible that my bone marrow decided to make large quantities of red blood cells in response to being temporarily shut down by the chemotherapy drugs, but I’m speculating. Something to ask the haematology consultant a week on Tuesday I think. Since that time I’ve felt almost normal, if still a little tired, most of the time.

My lumps have definitely shrunk in size. The right hand side of my neck which had swollen so rapidly after Christmas is now back to almost normal. I can now feel distinct (but still swollen) lymph nodes on the left hand side of my neck, rather than one large, angry lump. My neck has reappeared. I’m really looking forward to seeing what further damage a dose of Cytarabine and Rituximab does to the bastard beast™ in cycle two.

Having initially lost around 3-4kg, my weight appears to have stabilised around 91kg – just a little overweight. I still can’t stand the taste of coffee. The thought of green vegetables and alcohol makes me feel unwell. But everything else seems fair game food and drink-wise, which is fantastic.

Definite progress. I’m both relieved and grateful in equal measure.

 

 

If you’d like to help new research into cancer, then could I ask you to take a few minutes to look at what my ace daughters will be doing later on this year? And better still, sponsor them in their endeavour for a pound or two afterwards. Thank you.

Team Holyoake III - The revenge of the sith-ters

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