The Latest 48 Hours

So much sums to happen in such a short space of time in this weird old medical world that I traipse hopelessly and haplessly round. So – things to report are:

Firstly, I had the right heart catheterisation yesterday. A pain in the neck in every sense of the word! Most notable features were that the 2 local anaesthetics (no, still not enough to get rid of the pain of a mad Irish man slashing wildly into your neck and then inserting what feels like a giant biro lid into the cut which he then threads an enormous coiled catheter into, round your lungs and heart and back out again.) Here is the lovely plaster cover up and my red face – one of the many side effects of the steroids – what a total looker I have become (and from a low starting base!) 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It was also much nearer the centre of my throat than expected so did feel a bit like my windpipe was about to be cut and his softening words of 'the local anaesthetics will just feel like bee stings' I thought needed to be updated to two large stingray bites, but hey ho. It was done – and he immediately agreed that pulmonary hypertension is at play. So I am now on tablets 3 times a day that do have a neutral official name – but are basically bloody blue Viagra pills! You just couldn't make this shit up… Bit embarrassing when I just rang the local pharmacy to see if the next month's supply is ready to pick up yet and couldn't remember the technical name, so just had to ask for 'well, they are kind of viagra,. but they are for my lungs, really' in a rather pathetic, 'I have trouble getting it up' kind of voice.

Also say Ray and Charlotte the chest lady today and their latest thoughts are:

• to see some woman on Fri eve who pulls together weird disparate diseases (such as my odd combination of inflammatory things, the joint pains, the breathing/heart/lung issues and of course good old Myeloma) – none of which on paper seem to 'go together' but apparently there is some natty term (which I've already forgotten) for things that can actually sit under one umbrella. This would be amazing to find out as while I can get treated for things like pulmonary hypertension, they are not a diagnosis in themselves, just the manifestation of something else – which still remains entirely elusive. It could be more than one thing or just one umbrella thing – and she is about the 20th lucky person in line whose job it has become to try and make up a credible story for my falling-apart poor old bod
• to clarify that the sternum tumour wasn't the sort of tumour (as I had in my mind) that is an unwanted mass that you shoot radiotherapy at, in the hope that it will disperse and 'be gone'. Instead it seems to be more of a hairline fracture that the treatment tries to stop widening or becoming worse – weird again, but some much of this shit is. Mind fuck!
• to clarify that someone has looked at the shoulder biopsy but they want them to go to the next level of explanation (i.e. it was a load of generic toss that we already knew and they have to 'try harder' – should know more next week on this. There is a lot of 'next week, no, no, the one after…' in this game.
• to monitor whether the myeloma treatment (chemo/steoids) continues to lessen the inflammatory stuff/joint pain, which at the moment it sort of seems to, as the pain under my right arm is diminishing (always a bit embarrassing when you make a fuss about something, thinking it might be another bloody tumour and then is starts to bugger off of its own accord – although that is definitely a good thing too!) – it does seem that I am moving slightly less painfully than a month ago, which could be down to the treatment – although he heart/lung/breathlessness thing gets worse in ym book rather than better – and that is the primary one to sort, before; as Charlotte pointed out', my 'entire fitness disappears' – and she has a point.
• and on a lesser front, to buy flight socks and elevate my legs more often to try and get rid of my sexy cankles

Oh, the only other downer was that as I gleefully said to Charlotte, well the good thing about the neck slashing yesterday is that it is done and dusted and I won't ever be doing that again – then saw the sad little glint in her eye when she had to admit that I might well have to go again some time in the future to re-measure the internal pressures and whatever else the crazy (but nice) Irish chappy was up to in my innards. Poo pants – spoke too soon there!

But overall, I feel pretty positive an upbeat today which is always nice – albeit am running out of steam a tad now. Had a temp cleaner over this morning as ours is having a medical procedure herself, and as soon as I'd explained the run of our grubby house to her, the lovely Moonie appeared with bacon and eggs for a good old natter and catch up over breakfast – lovely start to the day! She suggested that I get my blog published, which I have vaguely thought about in the past.. biggest stumbling block is how to export it (and importantly, the photos) from this funny Tyoepad forum into a package where I could edit it. If anyone knows anyone more tech than me who could (for payment!) do this, then do let me know. I have half an idea to self-publish it and see if I could raise a few quid for Myeloma UK by selling it. Friends – beware!

Also got a fair few chores nailed – which is always satisfying for a Scotty. From asking BUPA why they are billing me £415 for the pleasure of a CT scan that they had authorised (yep, lots of this crud also gets added to an average day, to sending some thrilling answers to my accountant about my VAT – please god let that be the last interaction I need on that front, just hate bleeds VAT and all that sails with it.

And hurrah hurrah – the last piece of Curly's birthday present finally showed up today – just in time to deliver it to her tomorrow morning. Ordered 3 weeks ago so that was a bit close to the wire! Just a shame my best wrapping skills are pretty turdy – I so got absolutely none of the feminine wrapping skills when those were handed out, but it's the effort that counts – right??!

Right – last couple of chores, then it is raised legs on the sofa with a Diet Coke. My, what a wild chick I am these days. Then we are having supper with J&R – requested a retro spaghetti bolognaise as its been years and my taste buds seem to be travelling back in time. Must be that Angel Delight I had the other night – lovely..

Laters peeps – Mr H is about to drive home in his new car (exactly the same grey BMW 'dog carrying' car as the current one, but with seat memory and a sun roof – can you believe how wild we've gone with it all?) Must get to the front gate, ready to pipe him in and greet the new metal hunk.

Love to you all.

S x