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.

Whetstone FORTRAN benchmark: Raspberry Pi 3B+

Following the launch on 14th March, a shiny new Raspberry Pi 3B+ landed on my doormat yesterday. I purchased it from The Pi Hut for the princely sum of £32 + £2.50pp. I was delighted that it arrived the day after I ordered it, despite not having paid extra to guarantee delivery.

Naturally(+) the first thing I did after setting it up (and deciding on the somewhat unoriginal hostname of ‘custard’) was to install a copy of gfortran to compile and run the Whetstone double precision FORTRAN benchmark(*).

When I was a young programmer in the 1980s, the Whetstone benchmarks were acknowledged as being the standard for assessing general computing performance. I believe that they first appeared in the early 1970s, written in ALGOL. This was way before multi-core processors became the norm, so the benchmark doesn’t give a true reflection of the total computing power available on the Pi 3B+. It’s easy enough to multiply by four to get an estimate, of course, so I’m sticking with it!

Running on a single core, the Pi 3B+ performs the benchmark approximately 33% faster than the Pi 3B (an average over 10 runs of 530,348 KIPS vs 399,858 KIPS). Compared with the original (single core) Raspberry Pi (150,962 KIPS), the improvement in speed is around 3.5x (i.e. 14x, if it had been possible for this benchmark to use all four cores on the Pi 3B+).

Custard running the Whetstone double precision FORTRAN benchmark

Whetstone double precision benchmarks - Raspberry Pi 3B+ and predecessors

Comparing Raspberry Pi models using the Whetstone double precision benchmark (single core performance)



(+) Naturally for me, that is.

(*) My previous posts about this benchmark and the results on earlier Raspberry Pi models are here:

Raspberry Pi 3, Raspberry Pi 2, Raspberry Pi Zero and the original Raspberry Pi.

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!


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

Pills, small steps and chocolate

I’m on the final day of my first cycle of chemotherapy, so the pill load will come down tomorrow. I’ve always hated swallowing pills and I’ve swallowed more of them in the last five days than I have in the last ten years (*).

So far I’ve felt rather wiped out and haven’t been sleeping particularly well, but I am making small steps.

Today I’ve managed my first walk outside, to the post box and back. I’ve put the black bin away. Most importantly, Gnu now knows that it’s March as I’ve turned the garage calendar over.

Not much I admit, but it’s been a positive whirl of activity compared with what I was able to manage over the weekend.

Side effects have been limited so far. The anti-nausea drugs work quickly, meaning that I haven’t been close to being sick, thank goodness. I’ve had a little bit of peripheral neuropathy – a pins and needles sensation – in the ends of my fingers on the left hand, but that seems to be easing now.

The most disconcerting changes have been in my sense of smell and taste. I’ve gone right off coffee and disappointingly, edamame beans. I think that’s possibly because they have a similar size and texture, if not colour, to the pills I’ve been taking. The thought of beer or wine revolts me. It’s also taken me two days to eat six small slices of Galaxy milk chocolate …

I’m hoping to make further small steps over the next few days. Even though this is only my third day off work, I’m missing it. I’m hoping to be feeling well enough to be able to do something from home soon – there’s only so much “Homes under the hammer” I can take.



(*) That may be a slight exaggeration, but not much of one. Hayfever antihistamine tablets don’t count as they’re too small.

Maxi-CHOP ed

A short update to let you know that I survived my first cycle of chemo – Maxi-CHOP – yesterday. In the style of Oscar winners, I’d like to thank my wife for braving the ice and snow to get me there and back safely. Without her love and support, none of this could have happened yesterday. Thanks to the gritting crews for ensuring the main roads in Derby were passable. And also to the people responsible for ensuring that the hospital grounds were safe .

I’d especially like to thank the staff in the combined day unit for their care and skill. The whole process took around 2 hours – I think I was probably the last patient out at 7pm. The snow meant that they were a few nurses down so I really didn’t mind the wait to be seen. What I hadn’t realised is that two of the chemicals – Cyclophosphamide and Doxorubicin – have to be administered through a syringe rather than an automated drip. There were a lot of syringes too – eight or nine I think. My nurse definitely needed (and had) a steady hand.

I didn’t sleep particularly well last night, because for some reason I developed hiccups. I’m hoping for a less interrupted sleep tonight. Other than fatigue, I seem to be functioning normally at the moment. Normally for me, that is.

One cycle down, five to go. The next will be an in-patient stay for high dose Cytarabine and the first administration of Rituximab. Rituximab places a marker onto the cancerous cells, meaning that your own immune system can see them and kill them off. That should really help to shrink the lymph nodes. It’s too soon to tell, but I think that the first treatment cycle is already starting to have a small effect on them. My neck feels less stiff today than it has done all year, even if there’s no noticeable change in the size of the nodes.

Pauline Latham MP on the impact of leaving Euratom and the EMA

As I mentioned in my last post, I recently wrote to Pauline Latham, MP for Mid-Derbyshire, to ask about the impact of leaving Euratom and the EMA on lymphoma patients (*).

My first question was:

I understand that your government intends to withdraw from Euratom as part of our exit from the European Union. Could you advise me what the impact of this decision will be on the availability of medical radioisotopes used in the treatment of my condition, for example, during a PET/CT scan.

The substantive response to this question came in the 5th paragraph of her letter to me.

I do not believe that leaving Euratom will have any adverse effect on the supply of medical radio-isotopes. Contrary to what has been in some reports, medical radio-isotopes are not classed as special fissile material and are not subject to nuclear safeguards. Therefore, the UK’s ability to import medical isotopes from Europe and the rest of the world will not be affected.

This is a clear response – albeit one that is at odds with independent fact checkers, who state that this belief

[…] isn’t certain, and will depend on what future arrangements are negotiated. The UK may find it harder to guarantee a supply after leaving.

That my MP is happy to be held accountable for any interruption in supply of medical radioisotopes caused by an exit from Euratom and the EU is therefore commendable.

My second question was:

Furthermore, I also understand that the European Medicines Agency (EMA) has decided to relocate from London and that as part of our exit from the European Union, alternative arrangements to approve medicines will need to be made. Could you reassure me that plans have been enacted to ensure that approvals will not be disrupted after our exit, and that there will be no additional waiting time for new treatments to be approved compared to citizens of the other 27 European Union countries?

Her response to this concern was rather less clear-cut.

The UK is fully committed to continuing the close working relationship with our European partners, and as part of the negotiations the Government will discuss with the EU and Member States how best to continue cooperation in the field of medicines regulation (including with the European Medicines Agency).


Our aim is to ensure that patients in the UK and across the EU continue to be able to access the best and most innovative medicines, and be assured that their safety is protected through the strongest regulatory framework and sharing of data.

We’re 13 months away from our EU exit. Hope is not a strategy. There’s no obvious plan here as far as I can work out and her answer worries me a lot. Especially when you hear Leslie Galloway, the chair of the Ethical Medicines Industry Group, talk about the issue. He provides a cogent argument that the consequences of leaving the EU will be that new medicines will be delayed by up to two years. For mantle cell lymphoma patients, such a delay could be the literal difference between life and death.


I start my first cycle of chemotherapy on Thursday. Many people currently seem to think that Brexit is purely about what kind of trade deals we can strike. It quite clearly isn’t. We need to remember that, and make sure that our MPs remain accountable for all of their decisions on this matter.



(*) A copy of my letter is available here and the reply is here.

March 1st: chemotherapy cycle one

The PET/CT scan results came back on 14th February. The comparison with November was startling. It means I’ll be having my first cycle of six chemotherapy sessions on March 1st. Before then I’ll be going back for a talk with one of the specialist nurses to go through the process once more. I’m also due to go back in to see the consultant to sign the consent forms for treatment. Then, a couple of days later, I’ll be punting off into the unknown. A heady cocktail of Cyclophosphamide, Doxorubicin, Vincristine and Prednisolone will be used. In later treatment cycles these will be joined by Rituximab. On the even-numbered cycles I’ll be having high dose Cytarabine, which means a hospital stay of a few days. I’ve never been hospitalised before.

When I heard the news, my overriding emotion was one of … excitement. Which quickly felt wrong, but as I’m new to all of this perhaps it was excusable. Being on watch and wait for nearly four years has been great. I’ve been able to do lots of things that I otherwise wouldn’t have done, but it has sometimes been difficult to cope with the waiting. Moving on to a phase where I’ll actually be doing something to address the lymphoma rather than waiting for it to get worse did, initially, seem exciting.

I’m anticipating that it will seem rather less exciting once the side effects of treatment kick in. Perhaps in much the same way that some people who voted to leave the EU are finding the prospect of blue passports exciting now, but will eventually come to realise that our time in the EU was infinitely preferable. (And didn’t actually stop us from having a blue, pink, green or polka dot patterned passport either).

Carrying on in a political vein, I’ve recently written to my MP. I’ve asked her what her government is doing to mitigate the impact of leaving Euratom for patients who, like me, rely on medical radioisotopes for diagnostics.

I’ve also asked her what her government is doing to mitigate the impact of leaving the EMA when it comes to the approval of new lymphoma treatments. As there’s no cure for MCL at present, but it appears that one may be on the horizon, delays in approvals of even a few months could be fatal. I’ve promised to publish her response here should she choose to make one, as it should be of interest to anyone in a similar position.

Lord Digby Jones is right – we should never give in to bullies

I find myself intrigued by Lord Digby Jones’ recent tweet.

Lord Digby Jones tweet 11-02-2018Grammatical errors aside, if we have such a strong negotiating position with the EU, as Lord Jones believed would be the case before the referendum, then no amount of talking down by supposed ‘enemies within’ should matter. That he now thinks that it does matter suggests he may have been wrong about the strength of the UK’s position. Now, call me naive if you wish, but I find it unlikely that a distinguished Lord would have deliberately lied to us. The only alternative explanation is that he was skillfully conned by the leave campaign. He doesn’t need to apologise for that – many good people including my MP were seduced by their siren call. There’s no disgrace in being wrong, provided that you attempt to repair any damage you may have inadvertently caused through your misjudgment.

If enough people who, like Lord Jones, were duped by the leave campaign tell their MPs that they’ve changed their minds, then there is still just enough time to put things right. An exit from Brexit is possible. After all, as David Davis once pointed out, if a democracy cannot change its mind, it ceases to be a democracy.

I do, however, want to agree with Lord Jones on one specific matter. We should never give in to bullies. For example, people who use the term “Remoaner” in an attempt to belittle their opponents and shut down democratic debate.

So perhaps, on balance, Lord Jones would like to apologise after all.

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