An excellent 5 minute video from the Lymphoma Association on watch and wait. It explains why not being treated immediately for some non-Hodgkin lymphomas is a good idea. The speaker is Professor Simon Rule, one of UK’s leading experts on Mantle Cell Lymphoma.
This year (or should that read last year), I was fortunate to have one of the longest Christmas and New Year breaks that I’ve ever taken from work. We had Christmas at home, followed by seeing in the New Year at the wonderful Tithe Barn in Ashburton. I finally got back to work yesterday. The only downside of taking such a long break from work is that it gave me yet more time to worry about my lumps. Having lymphoma gives you an ever-present anxiety about what the future holds, but I find it harder to cope with when I’m not being distracted by the craziness that working in software pre-sales provides on a daily basis.
Anyway, the lumps on the left-hand side of my neck are definitely getting bigger (as my new blog photo demonstrates) and I can now easily feel some lumps on the right hand side for the first time. The right-hand side lumps haven’t come as too much of a shock, as some activity was present on my last PET/CT scan. But I wasn’t able to really feel very much in the way of lumps there in October. However I can definitely feel the enlarged lymph nodes now. General tiredness is becoming more of an issue as well.
Fortunately I’ve got a busy couple of weeks at work and at home to keep me suitably distracted until my next appointment with the consultant. That’s a good thing, as at this time of year my other main distraction lives almost permanently in the garage. He hates salty roads and darkness – or rather, his owner hates what salty roads might do to him and is becoming increasingly unwilling to drive very far in the dark.
So that’s where I find myself at the start of 2018. Glad to be back into the daily distractions that work brings, but rather nervous that the time for starting chemotherapy is drawing ever nearer.
One final thing – my eldest daughter criticised my July to December photographs for not including something from the ‘Wedding of the Year™’. I admit that she makes a very good point. So here’s the complete photograph that my new lumpy-face blog image comes from, to partially assuage the guilt I’ve been feeling ever since I hit ‘publish’ on that post.
I love the adoring look I’m getting as I’m making my speech!
I went for a PET/CT scan a few days ago to see how my lymphoma was progressing. I’m used to the process now, as it’s the fourth time I’ve had one since my diagnosis in 2014.
After I’d checked in and the formalities were over, I was given an injection of a radiotracer. This contains glucose, and as cancerous cells use sugar more quickly than normal cells the radiotracer concentrates in them, enabling the scanner to detect abnormalities. The scan takes place an hour after the injection and I enjoy saying that being scanned is like being on a slowly moving photocopier.
PET/CT scanners work by detecting the radiotracer at multiple levels (slices) through the body, which are then combined into a false colour 3D image. Affected lymph nodes show up in a lurid green colour. It looks a little bit like the colour of Spiderman’s blood.
Afterwards, you remain slightly radioactive for a few hours. I was glad that I didn’t turn into Spiderman (I hate heights), but I was disappointed that the process didn’t confer me with crime-fighting superpowers.
Today was results day. The scan showed that while the disease has progressed over the last year – more lymph nodes in my neck are abnormal and the ones that were already affected have become larger – everything else is remaining stable enough for me to stay on watch and wait until the New Year at the very least. Which is excellent news.
My consultant tells me that I’m in the bottom 10 percent when it comes to progression speed for MCL.
I’ve spent my whole life trying to be in the top 10 percent of things – and preferably, as Brian Clough once put it, being in the top 1.
But for MCL I’ll happily make an exception. I’ve never been so pleased to be told that I’m in the bottom 10 percent for anything.
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.
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.
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
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.
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.
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.
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.
… 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.
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.