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 28, 29 & 30 – the end

Thank you to everyone who sponsored my 10,000 steps a day challenge for Cancer Research UK. It’s hugely appreciated and the £305 raised will really help. I completed the challenge successfully yesterday by adding another 10,127 steps – my lowest daily total of the month. I confess that I was getting rather tired of the constant nagging from the app, so my Fitbit is definitely going nowhere near my wrist in October!

The end

Thank you all again.

Tim.

10,000 steps a day – day 27 – Allestree by-election

Today’s steps were easily achieved as this evening I went out leafleting on behalf of the excellent Liberal Democrat by-election candidate for Allestree, Deena Smith.

Allestree by-electionFor those of you that don’t follow Derby politics closely, the vacancy was caused by the Conservative councillor elected in May being jailed for two months for providing a false address. I think the people of Allestree deserve better than to have their votes taken for granted by the Tory party. The by-election is on Thursday and I hope that the recent success elsewhere in Derbyshire is a good omen in what has been considered a safe Conservative ward.

If you’ve never delivered leaflets before, this is what the activity looks like to a Fitbit tracker.

Delivery WalkI was quite pleased that I didn’t have to backtrack too many times.

 

There are just three days left in my September walk all over cancer, but there’s still time to sponsor me. My donations page is here. Thank you!

10,000 steps a day – days 24, 25 & 26 – Pocahontas

A lot of gardening over the weekend and today’s visit to Gravesend has pushed me over September’s 300,000 step target. Thank you again to everyone who has sponsored me – you’ve raised a magnificent £305 for Cancer Research. I shall, of course, keep trying for 10,000 steps a day for the rest of the month. Target one has been achieved though!

300,000 upWhile waiting for my colleagues to arrive in Ebbsfleet International at stupid o’clock this morning, a plaque just inside the station terminal caught my eye. It commemorates the death of Pocahontas in Gravesend some 400 years ago. As the station is new and trains didn’t exist in 1617, it did make me (playfully) wonder if anything else of note had ever happened here. But it’s an interesting touch in a pleasant, if rather empty station.

PocahontasAnyway, not wishing to become another Gravesend celebrity death, I got on the first Javelin train out of there once my meeting had finished. I’m pleased to report that I’m now safely tucked up at home in Derby.

 

Regardless of whether you’re happy, indifferent or sad that the curse of Gravesend didn’t get me today, there’s still time to sponsor me to walk all over cancer during September. My donations page is here. Thank you!

10,000 steps a day – days 21, 22 & 23 – miscellany

I’ve been ticking along on the challenge quite nicely for the last three days. No big dramas, although I did need a short walk in the dark on the 21st to reach my target. The last three days have been busy, so this post is a bit of a miscellany.

21st – ARIS User Group, London

A really well attended and informative event, held at the Glaziers Hall. This was the view from the lunch room.

London Bridge22nd – Derby

My Fitbit tells me that mowing our lawn is worth 1,325 steps. Target achieved!

Mowing the lawn23rd – Derby again

The preparations for Derby Festé are in full swing. A number of fire-breathing dragons are currently being assembled next to Riverlights.

DragonsCancer Research have also reminded me that there’s only 7 days of this challenge left to go …

7 days to go… and finally, I was given my first new fiver today in change for a coffee. Many people are donating their first plastic fivers to charity, so that’s where mine is going, bringing my total raised so far to £305.

First plastic fiver

There’s still time to sponsor me to walk all over cancer during September. My donations page is here. Thank you!

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 18 – Hardwick Hall

Yesterday was a beautiful day in Derbyshire. So Jane and I took a quick hop up the M1 to Hardwick Hall – one of my favourite National Trust properties. You can spend a whole day here, as there’s the Hall, Old Hall, gardens, walks around the estate and the tea rooms to keep you busy. Especially the tea rooms. We decided to do the Sculpture Trail (in blue) – around 2.5 miles. While the walks are all well signposted, the free leaflet is helpful too.

Hardwick Estate MapIt’s quite steep in places and because we were taking in the views, our progress was rather sedate.

The WalkAfter all that exertion, a cream tea with lashings of ginger beer was most definitely called for.

Cream Tea

© 2016 Jane Holyoake

Followed by a walk around the Hall’s gardens.

Hardwick Hall

© 2016 Jane Holyoake

And a doze in a thoughtfully provided deckchair.

Deckchair

© 2016 Jane Holyoake

I recorded over 16,000 steps even with the deckchair interlude, not to mention a quick blat in brum gnu later.

 

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

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