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!
Today’s wanderings around Devon took me to Buckfast Abbey. It’s very quiet at this time of year, so there’s plenty of opportunity for reflection and generally poking around the site.
Buckfast Abbey. The current Abbey (left) was completed in 1937. The monastery is the grey building to the right. The last tower on the right is the oldest part of the complex, dating from the 11th century.
The Benedictine abbey celebrates its millennium this year. However, Dissolution meant that for around 340 years (until 1882) there was no monastic community present at Buckfast.
The Methodist Chapel standing in the middle of the current Abbey site was erected in 1881. It may now look rather incongruous in its surroundings, but it stood by the main road when it was built.
Buckfast Methodist Church. A joint Methodist-Anglican service is held at 3pm on Sundays.
After lunch in The Grange Restaurant it was a short walk into Buckfastleigh. It’s a well-kept, albeit a rather sleepy place – there was almost no-one around this afternoon with many of the shops closed.
Fore Street, Buckfastleigh
However excitement may be on its way. I see from the Town Council notice board that a by-election is in the offing if the current vacancy for a Councillor is contested.