Wednesday 9 November 2016


You're here, and you're mine. I haven't seen you in a long time
Longtime - EMF

Check up ... KFLC = 376 ...

I went to my most recent clinic appointment in a little trepidation. I have been getting an increasing amount of pain in my ribs, and I wondered if this would be the month when, against all my instincts, my blood counts jumped abruptly in the wrong direction. Fortunately, it was not. Things continue on their steady course. Worse, but only in line with expectations <like>.

If only the rest of the world were the same. Sometimes, the world’s problems seem greater than mine <sad>.

DialM has not seemed much of a priority, of late. However, I owe you and update. I have realised that, assuming the numbers don’t give me away, my doctor’s perception of my health, and so my need of treatment, will come down to how much I complain. I find myeloma pain difficult to describe. Actually my ribs are more uncomfortable and annoying than actually hurting. How bad is it, really? But if one frames the question as “Is it bad enough to make you want chemo?” then the answer is clearer. No. It is not. I did consider, therefore, telling the doc that everything is fine.
But honesty won out, and the net result is that another full body MRI is now booked in, and I have another clinic appointment in 6 weeks, rather than the 8 weeks I’ve been operating on recently.

I went to the Science Museum with Gyles the other day. There’s a great new area of hands-on stuff. We had fun with a display consisting of a rope tied between two revolving wheels. As the wheels spin at different speeds (which you can control) the rope between them forms into standing waves. I wonder if my experience forms into emotional waves – highs post-clinic, lows pre-clinic with clinic appointments serving as nodes. Certainly I felt better after this appointment than before. Though my ribs still cause me trouble, which suggests that is an “objective” sensation (there is of course no such thing) rather than purely psychosomatic. Let’s see what the MRI says. From a patient’s point of view, one can’t really have too many MRIs.


And of course, I am lucky that I have had well over 3½ years treatment-free. One of my mm friends (I won’t credit her here by name because she is a more modest soul than me, but this is her metaphor not mine) recently described myeloma as an awful night hike, where you’re feeling your way, hands outstretched in the dark, negotiating rocks and ravines, carrying a massive backpack. In front in the blackness, you can hear comforting voices “I stood on a snake, but I’m OK”, “I just had a fight with a grizzly bear”. I think that captures the experience very well indeed. I am grateful to those on the path in front of me, for their candour and support <love>.

And also happy that my walking has been uneventful for such a long time <laughing>.


Those of you connected to me on facebook will know that mostly right now I just bang on about politics. This is not the place for that, save to say 2 things. Firstly I had the odd experience of posting something the other day which “went viral” <wow>.

A comment on a newspaper website, backed up with a rude joke, amused more people than I could possibly have anticipated. It rapidly appeared all over facebook and twitter, garnering tens of thousands of shares and retweets. For 24 hours my phone buzzed and beeped as my own comment bounced around in cyber space. I think I just had my 15 minutes of fame. So at least I can cross that off the bucket list.

Secondly, and a lot more seriously, people say many stupid, na├»ve and reckless things these days, stated as though they are facts, and as though they have extra gravitas for the specific reason that the person talking doesn’t have any experience or evidence to back themselves up. One of the claims is that the UK is going to grow more doctors, and be able to boot out all those horrid foreign ones. My consultant is Hungarian. I don’t know how long he has been training to get to where he is, but I’m guessing it's basically been his whole career and he’s as old as I am. I value him very much. I don’t want to live in a country governed by such stupidity that we’d make people like him feel unwelcome. The NHS will be poorer, and people will die, because of brexit. I’m sure there are already medics who have decided to leave, or not to come here, since June, and we can’t simply replace them because their skills are the product of many years of work <angry>.