Well, it was better than it could have been but also worse in some ways.. Confused? Well join the crappy club.
On the upside, my full body skeletal survey provided the very helpful summary that I am undergoing 'stable change'. Well, is it just me or are the two words 'stable' and 'change' not mutually exclusive?? Grr, one of the many frustrations about bloody myeloma is that it's totally nonsensical.
Not massively helped by the delightful jargon that the skeletal survey and the shoulder MRI reports are full of:
– 'irregular marrow in the distal clavicle' and 'a focal cystic lesion in the biceps tubercle' (surely both musical instruments?)
– 'the acromion is consistent with myomatous deposits' (first read that as 'monotonous' – actually made better sense)
– 'focal ill-defined regions of signal change in the proximal humeral epiphyseal region' (and guesses where the hell that is?)
– also a 'focal region of endosteal scalloping medially' (fish appetiser anyone?)
But at least it's partially answered the 'why does my shoulder hurt' question as apparently I have 'lowgrade supraspinatus tendinopathy' although they're now checking with the Parkside shoulder doc in case it might be anything with more letters in its name.
And the only new thing seems to be a 'new lytic lesion' in my right forearm. Which is basically a holein the bone, one of myeloma's great party tricks. And which is ironically one of the few parts of my body that doesn't actually hurt in the slightest, so there's extra weirdness for you.
Annoyingly, Prof has also decided that while I can still come for appointments only every 3 months, he now wants a monthly blood test to monitor me more closely as the scores are going up. irritating as I hate going there and it takes me a while to shake off every visit, but hey ho, no choice.
Although talking of choice, he did ask me if I 'would like to go back on treatment'! Ummmmm – NOOOOOOOOOOOOOOO springs rather resoundingly to mind. Apparently some people get so wound up by waiting for th ebest to attack that they take the first step and go bite its ass first by going back on treatment before they strictly have to. Much as it is a continual mindfuck, no, I don't think I'll be biting his hand off for a course of Revlimid and shitty steroids just yet…
So there you go – in a nutshell things are pretty much ok still, but the eggtimer is up-ended.
Next joyous visit is Wed 14th May – one day after Hawksey's and my trip to Alderney for our 3rd wedding anniversary and the day before I then bugger off to Miami for the annual shopping-and-bars-a-thon with Janine. Let him just try to shit on that nice double rainbow… x
Comments
5 responses
blimey that’s a lot for you (and us!) to take in…
glad you are just keeping on with having great times we are all jealous of inbetween all this shittiness. speaking of which, date soon m’lady?
hugs and loadsa love
xxx
Do they give you a degree at some stage during this process Scotty? Impenetrable language… Fancy a weekend in Winchester some time, with dog? Or I can pop up.. Would love to see you. Had a good catch up with Janine recently It’s been too long and you seem to have travelled the entire world in the meantime! Seriously inspired by what Nicky and Sophie are achieving. LOTS of love from the sticks (and us!) xxx
Time for a VAG or two me thinks?!
Especially as you missed out on the AGM by being in the BVI. ;o) x
Definitely time for a VAG. Good call Swighty. We’re all thinking of you Scotty.
Does the man ever talk in English? How irritating… guess the best response is to go out and play in the sunshine. Lots of love from Clogland, including from a little girl who lost her first tooth yesterday and had a visit from the eurozone tooth fairy last night. After demonstrating the appropriate degree of surprise, Mama suggested that the initial €2 was just for the first tooth, and that the tooth fairy normally goes down to €1 after that, i.e. half. Response from Lily Rose: “or €4”. Bless. She’ll be a whizz at maths. BS xxx