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!


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.

Itching – an infuriating symptom of lymphoma

So far my lymphoma symptoms have been relatively easy to deal with. Yes, I’m now developing lumps on my neck of a size that make small children cry and their parents cross the street to avoid me. Well, at least that’s what I imagine. I get tired easily too. The one symptom that might just be a little bit more positive for me – weight loss – is nowhere to be seen. With a BMI of around 27 I’d welcome some easy weight loss, but I’m still piling on the kilogrammes. I suppose that I should be happy my fashion choices seem to conceal my ever-expanding stomach rather well.

Instead, over the last few days, I’ve started itching. I even woke up in the middle of last night for a scratch. It’s not really the sort of itch you can scratch to make it go away, although that fact hasn’t stopped me from trying. It’s an itch that feels as if it’s just below the surface of my skin, but nothing I do seems to make it stop. The location of the itch might as well be at the Earth’s core – it would be just as accessible to my fingers.

Anyway, the real point of this post wasn’t to moan, but to point out that unexpected, constant itching is a known lymphoma symptom. Nearly four years ago, the only sign I had lymphoma was a tiny pea-sized lump on my neck. All of the other common symptoms are shown on the graphic below.

If you’re suffering from any of these, please don’t delay – go and see your doctor. Tell them Tim sent you.

Itching - an infuriating symptom of lymphoma

Lymphoma Symptoms

The beast is awake

Wednesday wasn’t supposed to turn out like it did. I’d already made work commitments and personal plans for 2018. A few days driving around the Border 500. A trip to the Edinburgh Fringe. A holiday in Cyprus. Theatre trips. A little bit of politics. It’s all going to have to wait for 2019 instead.

While the lumps on the left hand side of my neck still look much like they did at the end of last year, the right hand side has really caught up. There was nothing very visible in November even though there was clearly some activity on the PET/CT scan. Today the right hand side of my neck has lymph nodes that rival the left hand side for size. The left hand side took nearly four years to get there. The right hand side has taken just a few weeks. The beast is awake.

What’s next is more tests, more scans – and a go / no go decision for chemotherapy to be made on February 14th. But I know that it will be go, unless something very unusual happens.

I’ll be working my way through the cocktail of drugs for treating Mantle Cell Lymphoma known as the Nordic Protocol. Six cycles of chemotherapy three weeks apart to start with, probably followed by a stem cell transplant.

It’s said that knowledge is power. I know what’s about to come next. I know what the statistics say (I have a 97% chance of responding to treatment. I have a 100% chance of losing my hair during the process). I know people who have lived well for many years after treatment for MCL. But I also know that there is no cure (yet) for this type of lymphoma. I know all these things, but I haven’t experienced them yet. I think that experience gives you power, not knowledge.

I’m trying to balance optimism with realism – hoping for the best but making some prudent contingency plans. It feels tough, I’m concerned about what’s going to happen, I’m worried about my family and friends, but I don’t feel helpless or terrified.

Today’s been a beautiful, sunny, cold day in Derbyshire. I took the beast for a drive in my beast. I laughed at his terror as I drove along the road underneath the Carsington Dam.

Gnu at Carsington Reservoir January 2018

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