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.

Off balance

I’m feeling a little off balance at the moment. Last Wednesday I was busy telling the ARIS and webMethods user groups that “numbers don’t speak for themselves”. I was talking about the creating business cases, but I believe the statement to be true more generally. Numbers only make sense if you can relate them to a specific context. Furthermore, the numbers used must report or measure something meaningful, otherwise there’s no point in collecting the data. (You can find my detailed explanations rants on both of theses topic here and here if you’re interested).

Anyway, this was me in action at the event. It looks a little as if I’m conducting an auction and that the chandelier is about to bring it all to a messy end.

ARIS user group meeting 1st March 2017I’d had an active week up to that point, and although I spent Thursday in the office, that day was busy too. Here’s my steps chart for the first part of the week …

Mon-Thu 27/2 - 2/3 steps… 43,611 in all. I should have been feeling great! Nicely (but not stupidly) over the 10,000 steps a day average we’re supposed to achieve, according to the NHS and others. But having wittered on about context, you should already know that I’m about to tell you what happened next.

Full week 27/2 - 5/3An average of under 1,700 steps a day for Friday to Sunday. Monday to Thursday wiped me out, so I’ve spent most of the time asleep or moping around on the sofa. I haven’t been eating (much) either.

I feel that given my opening salvo I should now provide some context to these numbers. After all, you could just assume that I’ve been really lazy for the last three days. I wish that was true!

My best case hypothesis is that I picked up a bug (or mild food poisoning) early last week. As I was rather ‘poorly’ on Thursday evening that explanation could make sense. My worst case hypothesis is that the lymphoma has started to put on a bit of a sprint. I’ve been feeling increasingly fatigued for some weeks now, with even the most sanguine of the consultants that I’ve been seeing starting to suggest that chemo might be needed ‘soon’. Having spent 2.5 years on watch and wait, I’m not sure if ‘soon’ means weeks or months or a year or more … sometimes I don’t want to know the numbers at all.

Anyway, the next few days should help me figure out which of the hypotheses is right. I’m starting to get a bit of energy back today, so I’m hopeful that the bug explanation proves to be the right context for last week’s steps chart.

Lymphoma: facing change

Last night I was on a flight from Rome to London. A couple of hours into the flight I was bored and distractedly looking at photographs on my tablet. I came across a selfie I’d taken in May 2015. I’ve no idea why I took it (I suspect that I hadn’t realised that I’d taken it), but it reminded me how much the left side of my face and neck has changed since my lymphoma diagnosis.

Here’s the photograph I found from May 2015 …

May 2015 selfie… and here’s the one I took last night somewhere over the English Channel.

January 2017 selfieI’m pleased to see that my eyebrows remain as wild and as out of control as ever. But those lumps. Crumbs. That’s some progression. It’s a good job I’ve never been vain about my astoundingly handsome looks. (I did however have to put the camera into ‘beauty face’ mode, so as not to scare the young and impressionable).

The good news is that chemotherapy will reduce the size of the lumps if it’s successful. The bad news is, well, chemotherapy. At the moment I’m happier without it given the general outcomes for MCL treatment, as the longer I can safely put treatment off the longer I’m likely to live.

I’d still got my tablet out as we were coming into land and was treated to some lovely views over London as the night was clear. I was over the wing, so my view was restricted, but here’s the most in-focus shot I managed, to distract you from gazing on my lovely countenance. Canary Wharf is in the centre, with the Millennium Dome (or whatever it’s called now) on the right. London is so much more attractive from 4,000m than at ground level.

London from the air, 14-01-2017

Inspired by the 48th post40bloggers writing prompt: Sit in front of a mirror and write about your face.

10,000 steps a day – days 19 & 20 – work

Sometimes reaching 10,000 steps a day is a significant challenge if work means I’m writing a document or presentation. Monday was like that – by mid afternoon I was still below 2,000 steps for the day. I eventually reached the target by some judicious gardening and taking the long route to the shops. Other days, like yesterday, work makes reaching the target very easy. Well, easy, apart from lugging around the case that I had with me for my overnight stay. Wrestling it on and off the underground at peak times is never easy for anyone …

After yesterday’s exertions, I spent the evening in a hotel in Hammersmith. I was on the 13th floor – so great for clocking up extra steps up and down the stairwell. And the view was, well, of Hammersmith.

HammersmithThis morning, I’ve been ranting at the Independent’s headline writers on twitter. They’re misreporting an initiative by Microsoft by suggesting that software will ‘solve’ cancer in the next decade. If they read their own article, they’d see that’s not what’s being claimed. For rare cancers, like MCL, the issue isn’t sifting through lots of research of course, it’s getting the research funded in the first place.

 

If you’d like to sponsor me to walk all over cancer during September, my donations page is here. Thank you!

10,000 steps a day – day 12 – why I’ve gone purple

This may come as a surprise. It may even be a shock to some of my friends who are aware of my lifelong political views, but I’ve decided to go purple. It’s taken a lot of heart searching to come to this decision as you might expect. I’ve spent hours agonising over this move. I hope that none of you think any the less of me because of it. However, given my desire to truly change things for the better in the UK, the purple option is the only course of action that I believe is open to me.

Today, September 12th 2016, marks the start of Lymphatic Cancer Awareness Week. I’ve temporarily turned the border on my blog purple to show my support. Shame on you if you thought I was talking about joining UKIP by the way. I’ve never been so insulted in my life! However, if the words at the beginning of this post drove you to read this, then that’s a good thing. And the Lymphoma Association has achieved many good things, so please keep reading.

For anyone who isn’t aware, Lymphoma is the UK’s fifth most common cancer, with someone being given the diagnosis every 40 minutes. I received mine in August 2104 and I still vividly remember the shock of that day. However, not everyone knows about the signs. The Lymphoma Association published this handy card a few years ago, so I’m reproducing it again here.

Lymphoma symptomsOnce I was given my diagnosis, I found the information on their website about treatments, ‘watch and wait’ and other support services invaluable, as did my family and friends. As part of their activities this week, the Lymphoma Association are also launching the Types Matter initiative. Lymphoma is complex, with more than 60 distinct types and sub-types identified so far. Different treatments are required for each one, so knowing your type is crucial if you’re to get the right treatment.

I’m also naturally carrying on with my 10,000 steps a day challenge for Cancer Research this week. If my purple confession has made you smile, perhaps you could donate a couple of pounds to this really important cause.

 

If you’d like to sponsor me to walk all over cancer during September, my donations page is here. Thank you!

10,000 steps a day – day 9 – why am I doing this?

I was diagnosed with a particularly nasty form of lymphoma in August 2014. Mantle Cell Lymphoma (MCL) is treatable, but is not (yet) considered curable. Cancer Research UK’s website paints a tough picture for those of us who have it.

NHL one and five year survival ratesSource: Cancer Research UK, http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/non-hodgkin-lymphoma/survival#heading-Zero, Accessed September 2016.

However, the good news is that progress towards better treatments for MCL is being made. Recent advances in drugs that directly target and kill the cancerous cells, like Ibrutinib, are showing promising results. This, and similar drugs, may even prove to be effective for people who haven’t yet had chemotherapy. The future looks a lot more optimistic that it did five years ago when these statistics were published.

I’m taking part in this challenge because every pound raised helps newer, kinder and more effective treatments for all cancers – not just MCL – to be developed. I know how harsh some current treatments can be, so I’m particularly keen on the idea of kinder treatments! I’m also taking part because, despite the diagnosis, I’ve been lucky so far. I’m still perfectly capable of walking 10,000 steps a day, but other cancer sufferers aren’t so fortunate.

 

If you’d like to sponsor me to walk all over cancer during September, my donations page is here. Thank you!

Nervous

I’ve just got home from my watch and wait appointment at the hospital. I’m feeling somewhat nervous, as they’ve asked me to go for a PET/CT scan due to the visible increase in size of the lumps in my neck since the last time I was there. My blood tests are still ok even though I’ve felt increasingly more tired over the last few weeks (hayfever?) and I’ve also found it harder to concentrate for long periods (also hayfever?).

I’m under no illusions about how tough the Nordic Protocol (pdf) chemotherapy regime is. There are lots of reasons that I’d like the news from the scan to be that I don’t have to start on it soon – and preferably not for at least another year.

Fingers crossed!

Caterham highs and lymphoma lows

I’ve had a strange week. Last Friday started well enough. I went over to the Caterham dealer at Donnington Park and test drove a 270 SV. I was grinning like an idiot all the way around the route. It was definitely the most enjoyable road car that I’ve ever driven. I was hooked. I sat down in the showroom. I drank coffee. I ignored the nagging voice in my head that was telling me a car price list with paint, windscreen, doors and assembly on it as optional extras can’t possibly be a good thing. I ordered one. My flexible friend has never had to be quite so flexible.

For the avoidance of doubt, I feel that I ought to add that I’ve bought a full-sized Caterham 7, not the toy version illustrated above. Although it looks very cool too. My car will be a similar colour though, once the optional paint has been applied of course. Fortunately “Brum” (as my newly ordered car has already been named by my beauty blogger daughter) won’t be arriving until I’ve just about finished my MSc, so it won’t be distracting me from the many hours of transcription and analysis I need to do for my dissertation, not to mention writing it all up between now and mid-September. The other good thing that’s happened this week was getting a good mark on my final module assignment, so if I’m not motivated to finish the MSc now I suppose I never will be.

However, the lymphoma beast seems to be rearing its ugly little head. I’ve never felt so physically tired as I have done this past week and the enlarged lymph nodes in my neck are throbbing constantly. Unusually for me I felt so out of sorts this morning that I decided to work from home. It’s probably a good thing that I did as I needed to sleep for a little while this afternoon to get through the day. Blergh.

I make that two highs to one low this week (even if the lymphoma low has hung around since Sunday), so I’m still winning on points.

Nothing to report = good news!

For mantle cell lymphoma patients like me who are on watch and wait, having nothing to report is good news.

Having gone for blood tests last Friday and then to see the haematology team in Derby on Wednesday, it’s clear that my lymphoma is still behaving indolently. The amount of progression over the last year remains small and I can’t help but feel optimistic when I hear that kind news. Especially when promising developments, such as those in T-cell therapies, are being reported in journals as well as in the press.

So nothing to report means that watch and wait continues – good news!

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