It’s Lymphatic Cancer Awareness Week 2017

This week (11-17 September 2017) is Lymphatic Cancer Awareness Week – and there’s lots you can do to get involved. In the UK, someone is diagnosed with lymphoma every 28 minutes. It’s the fifth most common cancer type, but one of the least well understood. The graphic shows five common symptoms of lymphoma. If you are worried, please make an appointment to talk to your doctor. I’m glad that I did three years ago and happy to still be here to ask others to do the same if they feel at all concerned.

Lymphatic Cancer Awareness Week 2017

Five common symptoms of Lymphoma

Yes, we are all individuals!

Josh Friedman’s recent article for Time, “It’s Okay to Be a Coward About Cancer“, is an interesting piece about the language that surrounds the disease. It’s written from the perspective of someone who has experienced cancer for himself. In it, he takes issue with the dominant interpretative repertoires (*) of “fighting” and “surviving” the disease.

When I was first diagnosed with MCL, I initially adopted positions from the “fighting” repertoire. After all, it seems the logical thing to do. No-one wants to die from cancer – and not many people want to die,  ever! “Fighting” is how I perceived that the majority of people were talking about the disease, and I started to talk about it in that way too.

However, over time, I started to think of myself as being more of a survivor than fighter. This was because I found it difficult to declare war on my own body, regardless of its faults. But even that phase didn’t last long. These days, given my current non-treatment status, I feel more comfortable with the idea that I’m “living” with the condition rather than fighting or surviving it. My twitter and facebook biographies have reflected this progression over the last three years since my diagnosis.

While understanding and respecting Josh’s position, I think that rejecting the dominant fighting and surviving repertoires as cowardice undersells his own strength. Coming to terms with cancer by rejecting the culturally dominant discourses is definitely not cowardice. Taking a position against what the majority believe to be commonsense is always hard.

I wish him and all other cancer patients well, regardless of their approach to coming to terms with the disease and their own mortality. After all, in the words of Brian, “You are all individuals, you don’t need to follow anybody!”

 

(*) For those of you who aren’t discursive psychologists, interpretative repertoires provide commonsense and relatively coherent ways of talking about a topic, providing a basis for shared understandings to be reached. They are culturally and historically situated – for example, it is unlikely that a Victorian would have talked about cancer in the same way as a citizen of the 21st century.

Good news – and looking forward to playtime!

Hurrah! The good news on Wednesday morning was that my white blood cell (neutrophil) count was just above the minimum for “normal” adults for the first time in three tests. This would suggest that my bone marrow is hanging on in there after all. I’m therefore back on the watch and wait routine until September, assuming that nothing out of the ordinary happens.

My medical team remains of the opinion that I’m in the luckier 15% of people with MCL as it’s still behaving indolently rather than aggressively three years after diagnosis. There’s still no evidence to suggest that my survival prospects would be improved by taking the chemotherapy option sooner rather than later. I’m happy with that – but there’s a little voice nagging in my head telling me that if we really knew how to treat MCL, it wouldn’t be so. Some lifestyle changes – not taking on too much physically and mentally – also seem to be helping with the tiredness I sometimes feel.

This weekend marks the 60th anniversary of the Lotus 7 and the owner’s club have a celebration weekend at Donington Park. I’m going as it’s nearby and I’m looking forward to it. Something tells me the gnu is also looking forward to the event – you can see the gleam in his eyes headlamps.

Is it playtime yet?

Is it playtime yet?

Little darlings: Dealing with watch and wait anxiety

I’m three days away from my regular watch and wait appointment at the hospital, and I’m panicking again. Last time my white blood cell count was low, so I was “promised” another bone marrow biopsy if it hadn’t moved back closer to normal this time. They’re not fun. I can feel myself coming over all unnecessary as I contemplate the prospect. To try to distract myself, I’ve therefore spent the day doing two things I’ve really enjoyed.

This morning I took the gnu (or he took me, not quite sure which!) out along the roads to Carsington Reservoir and back. I even had time to pull into the visitor centre for coffee. That was just after he’d found an impressive turn of speed to overtake a couple of vehicles alongside the dam. There’s clearly nothing wrong with his fuel and exhaust system, unlike that of his driver. He’s a little darling.

Carsington Reservoir

Carsington Reservoir, as seen from the coffee shop

The gnu at Carsington

The gnu, as seen in the car park

The second was being taken on a date to see “Despicable Me 3” this afternoon. Like Mark Kermode I think that the minions can do no wrong. They’re little darlings. Watching them perform the Major-General’s song from The Pirates of Penzance was definitely the highlight of the movie for me. But I admit that I also found the fart gag before the film even started funny. Is that wrong? I even managed to put up with a little shit darling constantly kicking the back of my seat with something approaching good grace. If you were sat in Derby’s Intu Showcase, screen 2, row F, seat 5 for the 1700 screening, it’s you that I’m talking about. Don’t do it again. Ever. The next person you do it to might not be as reasonable as I was. Or enjoying the film as much. Or both.

That was my Sunday. Only three more sleeps until the watch and wait anxiety dissipates again.

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!

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