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.
I find myself intrigued by Lord Digby Jones’ recent tweet.
Grammatical errors aside, if we have such a strong negotiating position with the EU, as Lord Jones believed would be the case before the referendum, then no amount of talking down by supposed ‘enemies within’ should matter. That he now thinks that it does matter suggests he may have been wrong about the strength of the UK’s position. Now, call me naive if you wish, but I find it unlikely that a distinguished Lord would have deliberately lied to us. The only alternative explanation is that he was skillfully conned by the leave campaign. He doesn’t need to apologise for that – many good people including my MP were seduced by their siren call. There’s no disgrace in being wrong, provided that you attempt to repair any damage you may have inadvertently caused through your misjudgment.
If enough people who, like Lord Jones, were duped by the leave campaign tell their MPs that they’ve changed their minds, then there is still just enough time to put things right. An exit from Brexit is possible. After all, as David Davis once pointed out, if a democracy cannot change its mind, it ceases to be a democracy.
I do, however, want to agree with Lord Jones on one specific matter. We should never give in to bullies. For example, people who use the term “Remoaner” in an attempt to belittle their opponents and shut down democratic debate.
So perhaps, on balance, Lord Jones would like to apologise after all.
Earlier on today I came across a number of photographs taken on the afternoon of Sunday June 26th 1960 at the British Celanese Motor Club Driving Tests event. Thanks to my late father’s meticulous record keeping I can also provide the context to the event, as well as the photographs.
The entry form for the event.
Instructions for each of the six tests. If anyone would like a copy of the complete booklet containing the descriptions of all of the tests, just let me know!
The first test in progress. The Moon Hotel (now known as The Canal Turn) is in the background. According to the DVLA’s vehicle enquiry service, the white Austin Healey, 434 HNU, is still taxed. If the current owner would like to contact me, I have a number of other photographs of the car along with records from the BCMC to show that it was competing in their events from soon after first registration in July 1958.
A small but enthusiastic crowd of spectators look on.
Did he touch the back of the garage? It looks like a close-run thing to me.
And finally, the results.
The Austin Healey finished fourth. This was one place behind my future Godfather in third, with my future father finishing first.
So far my lymphoma symptoms have been relatively easy to deal with. Yes, I’m now developing lumps on my neck of a size that make small children cry and their parents cross the street to avoid me. Well, at least that’s what I imagine. I get tired easily too. The one symptom that might just be a little bit more positive for me – weight loss – is nowhere to be seen. With a BMI of around 27 I’d welcome some easy weight loss, but I’m still piling on the kilogrammes. I suppose that I should be happy my fashion choices seem to conceal my ever-expanding stomach rather well.
Instead, over the last few days, I’ve started itching. I even woke up in the middle of last night for a scratch. It’s not really the sort of itch you can scratch to make it go away, although that fact hasn’t stopped me from trying. It’s an itch that feels as if it’s just below the surface of my skin, but nothing I do seems to make it stop. The location of the itch might as well be at the Earth’s core – it would be just as accessible to my fingers.
Anyway, the real point of this post wasn’t to moan, but to point out that unexpected, constant itching is a known lymphoma symptom. Nearly four years ago, the only sign I had lymphoma was a tiny pea-sized lump on my neck. All of the other common symptoms are shown on the graphic below.
If you’re suffering from any of these, please don’t delay – go and see your doctor. Tell them Tim sent you.
In 2017 I drove up to the Derwent Dams for the first time in several years. This afternoon as I was going through more boxes of slides that my father left, I came across these ones of the dams. They were taken during 1959, when a severe drought affected Central, Eastern and North-East England between February and November.
An almost empty Ladybower Reservoir, looking towards the Snake Pass.
It looks as if this group may be attempting to salvage building materials that were exposed by the drought.
The remains of one of the villages submerged to make way for the reservoirs.
Graffiti was clearly a thing in 1959. I wonder who Julie was?
Wednesday wasn’t supposed to turn out like it did. I’d already made work commitments and personal plans for 2018. A few days driving around the Border 500. A trip to the Edinburgh Fringe. A holiday in Cyprus. Theatre trips. A little bit of politics. It’s all going to have to wait for 2019 instead.
While the lumps on the left hand side of my neck still look much like they did at the end of last year, the right hand side has really caught up. There was nothing very visible in November even though there was clearly some activity on the PET/CT scan. Today the right hand side of my neck has lymph nodes that rival the left hand side for size. The left hand side took nearly four years to get there. The right hand side has taken just a few weeks. The beast is awake.
What’s next is more tests, more scans – and a go / no go decision for chemotherapy to be made on February 14th. But I know that it will be go, unless something very unusual happens.
I’ll be working my way through the cocktail of drugs for treating Mantle Cell Lymphoma known as the Nordic Protocol. Six cycles of chemotherapy three weeks apart to start with, probably followed by a stem cell transplant.
It’s said that knowledge is power. I know what’s about to come next. I know what the statistics say (I have a 97% chance of responding to treatment. I have a 100% chance of losing my hair during the process). I know people who have lived well for many years after treatment for MCL. But I also know that there is no cure (yet) for this type of lymphoma. I know all these things, but I haven’t experienced them yet. I think that experience gives you power, not knowledge.
I’m trying to balance optimism with realism – hoping for the best but making some prudent contingency plans. It feels tough, I’m concerned about what’s going to happen, I’m worried about my family and friends, but I don’t feel helpless or terrified.
Today’s been a beautiful, sunny, cold day in Derbyshire. I took the beast for a drive in my beast. I laughed at his terror as I drove along the road underneath the Carsington Dam.
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.
Today’s first release of HESA’s official student enrolment data for 2016/17 shows a further decline in part-timers. This is against a background of slightly rising numbers in higher education overall. As I’ve tracked the Open University figures since the publication of the 2008/09 data set, I’ve updated my graph. It excludes the (currently 225) students who live outside of the UK for consistency with previous years. The graph demonstrates that the institution and its students are by far the biggest loser from the changes in university funding made over the last decade.
The headline figures:
Overall student enrolments down 5,225 from 2015/16 – a fall of 4.1%
Undergraduate students down 5,830 from 2015/16 – a fall of 4.9%
Postgraduate students up 645 from 2015/16 – an increase of 8.6%
Open University enrolment figures for 2008/09 to 2016/17
HESA have also provided some additional detail in the data set this year. Of the 113,285 undergraduate enrolments, 98,740 represent students working towards their first degree, representing 87% of the cohort. The remaining 13% are classed as ‘other undergraduates’ – presumably people studying for a new undergraduate qualification. Although the data isn’t there to interrogate, I suspect that this is a very different split to that during my own Open University experience some years ago.
If you want to explore the data for yourself, HESA have thoughtfully provided an interactive mechanism for doing so this year. You can get to it by clicking on the image below.
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.
Emily and me (Lucy James Photography)
I love the adoring look I’m getting as I’m making my speech!