Cloudy. The sky is grey and white and cloudy. Sometimes I think it’s hanging down on meCloudy – Simon & GarfunkelA follow up on the path ahead, and my state of mindI thought I’d share a few excerpts from my most recent take home reading m…
Hey sunshine, I haven’t seen you in a long time. Why don’t you show your face and bend my mind?Cloudy – Simon & GarfunkelCheckup … KFLC = 641 … κ/λ = 95 … Hb = 11.2 …I’ve hesitated to post this. It’s 2 weeks now since my last appo…
How many times can we put ourselves through this war, like all the lovers that have been here before? How many times can we watch this fade into nothing?Fade to nothing – Rag’n’Bone ManCheckup … KFLC = 679 … κ/λ = 92 … Hb = 10.4 …Anot…
Think of all the roads; think of all their crossings. Taking steps is easy; standing still is hard. Remember all their faces; remember all their voices. Everything is different, the second time around.You’ve Got Time – Regina Spektor (theme from …
“Has anyone seen my brain? It ran off flailing and screaming about being overwhelmed this morning. I’d really like it back.” – Unknown This week I’m dog sitting nearby at someone’s home (not my usual, they usually stay at my house). Anyway, it’s a good quiet time for me to ponder all the […]
I used to be afraid of many things. Several things in fact, despite having a pride in being able to manage a spider or any such creepy crawly, I was quite the scaredy cat. It is for that reason that my knowledge of horror films is so distinctly lacking. My worst nightmare would once to […]
By early winter, walking in our town became difficult. Cold snow fell for several days. Sidewalks were clogged with dry powder higher than my boot tops. So, I walked in […]
Longtime – EMF
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, naïve 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>.
Forgive me. Seriously, in the words of Bryan Adams ‘please forgive me, I know not what I do’. Every time somebody has asked me recently if I was done with my blog, it strengthened my resolve to complete a blog. I am far from finished with the blog; that was clear. What was not clear, […]
Every year I write this post…..and I make no apologies. This is an amazing day for me to remember as it is the 5 year anniversary of when I had my Stem Cell Transplant…the point at which my myeloma was … Continue reading →