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 fullfact.org, 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.

British Celanese Motor Club Driving Tests – June 1960

Earlier on today I came across a number of photographs taken on the afternoon of Sunday June 26th 1960 at the British Celanese Motor Club Driving Tests event. Thanks to my late father’s meticulous record keeping I can also provide the context to the event, as well as the photographs.

Driving Tests Entry Form

The entry form for the event.

Instructions for each of the six tests

Instructions for each of the six tests. If anyone would like a copy of the complete booklet containing the descriptions of all of the tests, just let me know!

Test 1 in progress

The first test in progress. The Moon Hotel (now known as The Canal Turn) is in the background.  According to the DVLA’s vehicle enquiry service, the white Austin Healey, 434 HNU, is still taxed. If the current owner would like to contact me, I have a number of other photographs of the car along with records from the BCMC to show that it was competing in their events from soon after first registration in July 1958.

First test in progress

A small but enthusiastic crowd of spectators look on.

First test in progress

Did he touch the back of the garage? It looks like a close-run thing to me.

And finally, the results.

The resultsThe Austin Healey finished fourth. This was one place behind my future Godfather in third, with my future father finishing first.

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

Colour pictures of Derwent Dams in the drought of 1959

In 2017 I drove up to the Derwent Dams for the first time in several years. This afternoon as I was going through more boxes of slides that my father left, I came across these ones of the dams. They were taken during 1959, when a severe drought affected Central, Eastern and North-East England between February and November.

Ladybower Reservoir 1959

An almost empty Ladybower Reservoir, looking towards the Snake Pass.

Salvage

It looks as if this group may be attempting to salvage building materials that were exposed by the drought.

Village remains

The remains of one of the villages submerged to make way for the reservoirs.

Graffiti

Graffiti was clearly a thing in 1959. I wonder who Julie was?

Winifred graffiti

… and for that matter, who was Winifred?

Derwent Reservoir

A rather empty Derwent Reservoir.

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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