Mr H had the very good idea of making the most of the two days in between chemo sessions this week, so off we tootled on Tuesday down to Janine and Ross's cottage for a couple of nights. They were very, very busy in London, introducing their new scrap of super cute Flossy the Labradoodle fur to a world of new experiences including Mojo the cat (total lack of interest, had clearly never seen a moggy before), To Scrumpy (lots of sheeplike gambolling and polar bear double paw pouncing) to the tube, the bus and the outside world as seen from the warm safety of Ross's puffa jacket.
Headed into Brighton for a dog run on the beach, a middle aged wander round Cookshop and a very nice seafood lunch. Great mixed seafood platter followed by mountain of razor clams in broth and some squid with chilli and chorizo. Sun coming through the window, and only the bulldozers on the beach slightly tainting the seaside vibe and view. Only downside was that I now have so little energy in my legs, it's very hard to walk, so I'm shuffling and my lower back is sore, pretty miserabla having to walk behind H with my hands in his back pockets so he can drag me forwards. Like the blind leading the blind, with extra panting.
Didn't manage a kip so pretty pooped last night, with the lovely coot fire roaring away, so all tucked up in bed after a 'low fat' (not) pork belly by 9.30pm. Need to get a grip on the food front as between comfort eating and the impact of the steroids I can hardly get up, bend down, move… My Pilates days are long gone and getting my own shoes on remains a daily challenge. I have already been to PS in my slippers like an old trout just to avoid having to put shoes on..
Today was all about 'getting back on the treatment trail' so up at 5.30am to be out of coot (slowly..) and drive up to 8.45am appt at PS with Nina Agarwal, her first chance as a rheumatology guru to put an overarching reason to my pains. Lightning whip through my history from childhood to twenties thirties and today. She thinks is all myeloma, and that there is no 'other / over-arching' cause, which in some ways is good as it means I don't have to contend with yet another big thing. But is also an 'eggs all in one basket' diagnosis as it means I have to rely on the myeloma treatment, chemo now and right through to the Stem Cell Transplant, to knock all the bone pain and inflammation on the head.
Basically we will need to use SCT to 're-set' my immune system with a less myeloma-fuelled one that is not riddled with inflammation and pain. Now that'd be nice… But is also a long old wait with no expectation of any improvement in things like my gripey shitbag of pelvic back pain until we get to that point (and maybe not even then, but here's hoping, as ever). Interestingly she said my inflammatory condition may even be linked to the fact that my Mum has had psoriasis for much of her life – of all things – this can be a marker for inflammatory disease in descendants apparently. Mum is now homeless as a result..
Then saw Prof at 10.30. Repeated the discussion around shoulder biopsy/back – it's myeloma so no other treatment poss. The breathing issue is separate, so I need to do at least a month on the magic blue tabs and then get jugulared again, and possibly increase the dose if no breathing improvement by then. So basically 1-3 months to see if my breathing improves, and I can then try and scratch some basic fitness back again if I can breathe enough to do so. It's Catch 22 at the moment. Even pushing up out of a chair is difficult now, so frustrating. There was a mention of having physio or even hydro training to help boost my fitness – best watch out for harpoons around the edge of the swim pool, hey??
My latest PP score will not be back till next mon/tues but it had wobbled back up to 4 from 3, so hopefully might be down to maybe 2 by next week? The crappy news was that patients need an average of 5.5 – yes, five point bloody five – cycles of treatment to get them to a low enough PP to be put forward for SCT. Which was not what I wanted to hear as was hoping maybe I could do just three or four at the very most.
I am on the last Velcade injection of Cycle 2 today – please god not 5 cycles or more. Every sodding day of this is grim and it has a cumulative negative effect on me – yup, you feel crapper the longer it goes on. As well as wasting more precious months when I could be recovering and inching my way towards some very much longed for turquoise water and sunshine at the back end of the year. Maybe.
So I've ordered one of my late night Amazon purchases: a wipe off 2016 calendar onto which I can plan different scenarios, eg 4 Cycles of treatment and when this would fall, vs 5 etc.
Will fiddle with this over the weekend and see when there might be the odd chance for me and the hubby to do 1-2 little nice things, like Le Touquet for 2 nights in April and Rome for our anniversary for 3 nights in May.
Not massively helped though by me ringing to renew my annual travel insurance today and basically getting laughed off the phone by the company which has insured me the last few years. I didn't even get as far as mentioning the sternum tumour or the collapsed vertebra, just being in a state of 'waiting for tests and results' sounded their Uh-nuh gong, and the computer said a big fat hairy No. To be fair, I'm not sure I'd insure me either right now…
Right, time to unplug from this machine, which is giving me my monthly half hour infusion of Zometa, a bone strengthening substance, as its time to go see Mr Fairbanks in the main hospital, who is H's knee doctor. In a nutshell, he may need a total knee replacement this year, so we are off to discuss options, approaches and timings for that. 2016 is set fair to be the year for anyone with Hawkes as a surname to get their medical shot dealt with. Will update on that when we've seen him…. X