Category: Politics

Say Bollocks to Cancer and Bollocks to Brexit

Join me, my family and friends and say Bollocks to Cancer.

Also please use your vote tomorrow to say Bollocks to Brexit.

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The two requests are connected. The development of novel cancer therapies relies on close European and international co-operation. The vacuum left by a mad no-deal Brexit that Farage, half the Tory cabinet and their elitist chums want will kill the sick.

So vote for a genuinely pro-remain party. I recommend supporting the Liberal Democrats as they have the best chance of frustrating the Brexiters, but whatever. Just vote. Defeat the unpatriotic nationalist elites. And tell your family, friends and neighbours to do the same.

This is no time for our great country to become the twenty-first century equivalent of the GDR, isolated and poorer in an increasingly dangerous world.

Transplant +45: Gentle exercise

Since I last wrote on T+30 I’ve continued to make progress. I’m still tired much of the time and if sleeping was an Olympic sport I’d be a certainty for the gold medal. However, it feels as if some kind of normality might not be that far away.

Physical exercise

This is the easiest to measure. Since T+30:

  • I no longer need my walking stick.
  • I’ve managed to drive both the Alfa and the 7 a couple of times, although not very far.
  • I spent a couple of hours at the Donington museum.
  • I’ve walked around the woods on Oakwood (several times), Kedleston Hall and yesterday spent some time walking around the gardens at Chatsworth (when I wasn’t eating cake, naturally). My daily step count has gone up from around 1,500 to averaging 5,000 or so. Yesterday I exceeded 8,000 for the first time in two months. My resting pulse has continued to come down (73 today), although it’s still a little above my mid-sixties norm.
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Chatsworth – the view from the grotto

Mental exercise

This is a little harder to measure, but since T+30:

  • I’ve built a surveillance camera for the driveway. This was motivated by the possibly paranoid belief I hold that an intruder tried to get into the house the first night I was home from hospital. It consists of a Raspberry Pi 3B+ inside a custom case, running MotionEye on Raspbian. (I originally tried MotionEyeOS, but it proved to be unstable). So far the only intruder its spotted is a spider.

Transplant -4: Ranty Saturday

Yesterday afternoon I was rejoined at my bedside by grey Eeyore. Quite rightly, Jane decided he was a little too unhygienic to be in here at first. He’s now been through a full wash and tumble dry, so although he smells beautiful, he’s understandably a little ranty today. Even though the nurses love him.

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Ranty grey Eeyore

His mood has rubbed off on me a little this morning. It’s not nine thirty yet and I’ve already had two good rants. The first was while I was chatting to my bed makers. Nothing to do with this hospital however! I was reminded of the time I was visited on the ward in Derby by a member of their trust board. I was more than happy to speak to her, until I realised that she simply seemed to be on a fishing expedition for complaints. Let me record now, that at both Derby and Nottingham, my treatment has been exemplary and the staff, at all levels, are amazing. The only time I’ve felt secondary is when being interviewed by that Derby trust board member. I wish I’d have taken it further at the time to be honest.

So that was my first rant. My second is on twitter, so you can follow the thread if you’d like to read it. Warning – contains NHS Brexit ranting, but if you would like to re-tweet it for me it would make me very happy!

In chemo news, I’ve just finished my third bag of cytarabine. I’m about to start bags three and four of etoposide. I’m still “functional” and putting on weight. 92.5kg this morning, although that’s probably mostly due to all the liquids that I’m having pumped into me. My appetite is still OK, but it’s more of a struggle to eat than it was a couple of days ago.

I’m wearing my happy socks (thank you to the Doyles! ) – maybe I will become less ranty as Saturday progresses.

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Brilliant Mistake

EC-and-ImpsI’m listening to King of America, Elvis Costello’s 1986 album, while receiving my fourth and final dose of Cytarabine for this chemo cycle. Unlike the over-produced and rather directionless ‘Goodbye Cruel World’,  this album still works for me 32 years on as the songs and production remain coherent for the whole hour.

The first track is ‘Brilliant Mistake’, and the first verse seems to resonate when listened to against the backdrop of Trump and Brexit. I hope fervently that in a couple of years these brilliant mistakes will have been consigned to the dustbin of history. But if not, well, a few listens to ‘Suit of Lights’, also on this album, will probably make me feel a little better.

Brilliant Mistake – Declan MacManus

He thought he was the King of America

Where they pour coca-cola just like vintage wine

Now I try hard not to become hysterical

But I’m not sure if I’m laughing or crying

I wish that I could push a button

And talk in the past and not the present tense

And watch this hurting feeling disappear

Like it was common sense

It was a fine idea at the time (*)

Now it’s a brilliant mistake

 

(*) I was obviously never convinced that Trump or Brexit were fine ideas, but understand why many people thought they were. Hopefully change is coming …

 

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.

What does the general election mean for lymphoma patients?

A mantle cell lymphoma (MCL) support forum I belong to recently had a posting from someone in the US. They’d received a bill of around $70,000 for an 11 day stay in hospital. Their visit involved a single round of chemotherapy. Other people with this rare cancer recount their despair of fighting to pay medical bills. Some are unable even to afford an application for bankruptcy protection. Almost inevitably there is a regular litany of struggles with insurance companies, even for vital diagnostics including PET/CT scans. Those of us from the UK boggle at the mental and physical hardships our fellow patients in the US endure. We know, first hand, how valuable a properly funded and staffed NHS is to our survival. Mantle cell lymphoma strikes people at random and is tough to treat.

One of the many negative consequences of the Conservative and Labour desire to take us out of the EU will be the loss of the European Medicines Agency (EMA). The impact on MCL patients shows every sign of being a disaster. New, innovative treatments that are being developed for lymphoma will take longer to be approved for use in the UK post-Brexit. The experience of Canada and Australia (who approve new drugs at a national level) is that they run around 6 months behind the EU on approvals. Canada and Australia have strong economies. They are not facing the imminent catastrophe of losing EU single market membership. I can only wonder what kind of delays will be introduced into the UK approvals system.

Furthermore, the expertise of the EMA is not something that can be replicated overnight and any replacement will introduce yet more delays. A 6 month approval lag may not sound like very much, but the median survival for MCL patients post-diagnosis is just 3-5 years. As current treatments are limited in their effectiveness, every day counts. And obviously it’s not just MCL patients that will be affected, but I write about what I know.

It’s clear to me that the NHS will face continuing crises should either the Conservatives or Labour party form the next government unchecked. A Conservative victory will see further pressure on NHS budgets and an ever-creeping privatisation of the service. An insurance-backed health service that the right-wing extremists in the Conservative party long for would have a devastating impact on patients. A Labour victory won’t stop Brexit and the loss of the EMA.

Like so many issues in the 2017 general election, the first step to ensuring a successful future for the NHS and the patients who rely on it is to ensure continued EU single market membership. Ideally, we need a chance to retain our full EU membership. The Conservatives and Labour are offering neither. I know how I’m voting on 8th June.