Unscathed?- I think not…My bright shiny appearance belies what is going on underneath. Today (a day comprising another visit to my ever swelling but fading friend) is a prime example…I spilled 4 cups of coffee in Cafe Nero – yes…4…and they even offered me a 5th, but I felt too embarrassed, despite the fact that customers kept pouring (?) in, undoubtedly thinking I was today’s “entertainment”.
Then dropped my handbag whilst getting on a central London bus…
Tonight, have just dropped not one, but two glasses of wine over my desk, laptop, carpet, chair….inevitably the second was after having cleared up the first…Room smells like a pub, booze-drenched clothes make me feel and shuffle like an alcoholic and computer screen resembles a Jackson Pollock.
I blame it all on today’s wild, haunting and destructive wind…
Time to move rooms…better go and watch the football…surely nothing can happen whilst involved in a seated “activity”….
Back to hospital on Thursday
I have now had my 2nd herceptin injection, or treatment 11 or cycle 25 depending on who is counting what. Each time I am asked if that number is correct…but I am well past the counting stage and am “happy” to trust the record books (which, I assume is what they are for…). Then we had the “echo” conversation (heart function). Apparently alarm bells ring when there is a 10% drop or more from one result to the next, but mine was 9.5% – so that’s all right then…apparently!
The injection itself…a mighty (the only appropriate word I can conjure up!) needle is prepared (but…a needle holds no fear for a type 1 diabetic…so that’s all right as well). Then the injection is given slowly (over 5+ minutes). This week a lump formed (a very large lump) at the injection site – a herceptin hillock, I suggested. However, during the time I was being observed, the good poison dispersed from its landing stage around my body. So…another 3 weeks until 3rd injection…treatment 12…cycle 26…
The nurses who visit are just great (now I have got used to these visits), they are so kind and really caring BUT there is still that layer of euphemistic language that I struggle with. I was asked if I was completing my treatment after number 14. Apparently that is the standard. Standard? me? – n’ah I know I am not standard so said that I was continuing the treatment – until it stopped working…The exchange of course then shifted up a gear and I seemed to morph into one of those “ladies with a poorer prognosis” – yep..that’s me…OK but maybe not a “lady”!
“…Halfway up the stairs
And it isn’t down.”
I thought I was in bed when I opened my eyes last night…but instead found myself lying head-first halfway down the stairs with my cat staring me in the face, making a loud noise as she attempted (vainly) to nudge me back to the top. I had gone upstairs (what appears to be a couple of hours earlier), put on my pyjamas and, so far as I can recall was on my way to the bathroom when whatever happened, happened…I dusted myself down, picked myself up and started all over again….going to bed (by a more direct route!) having decided that the trip to the bathroom was non-essential…I went to sleep and all’s well today…
How much can a person take? Isn’t there some biblical “thing” where “we” are promised not to be given more than we can handle? I am now really wondering how that works. I suspect that as a non-bible basher the above does not apply. That is the only way I can interpret what’s going on in my world.
Whilst I am treasuring the short bursts of time I am spending with my friend it is unutterably sad to watch her dying in front of me whilst she simultaneously tries to bear the pain of everybody around her. I have defined my own role as being the strong one…to keep talking about regular stuff…to make her laugh…make her remember…to touch her whilst I can. It is a supreme effort in mindfulness as we cannot think beyond the here and now…although we have been known to stray into wondering whether she will be able to warm a spot for me!
My medical stuff, emotional turmoil and practical arrangements assume little importance whilst I try and deal with this.
“…And other strains of woe which now see woe Compared with loss of thee will not seem so”
Life feels very tenuous at present. I am having to do lots of out of the box thinking and will probably have to follow up with some out of the box living, which, currently, is not where I want to be. I feel uncomfortable and teary and just want to crawl back in the box (any box!) and hibernate. I am not being allowed to do this because I am having to make decisions, endless painful difficult decisions that my brain feels incapable of computing or making. I hate being in this place and want to leave it behind with great haste.
On the plus front is the fact that I have the most perfect distraction. The Baileys Prize long list of books has been announced. (This was the Orange Prize and is for female novelists). 20 books populate the list and I have only read 4 of them so 16 to read, if I can, before the winner is announced on 3 June. (Can’t believe I will have read them by the time of the short list on 13 April!)
…and another positive note…Craig in the strawberry van (from Ocado) will be pitching up this afternoon…then the fridge will be filled and I can at least breathe again…
For the past months the pictures spiralling around my head have had me metamorphosed (is that the correct word?) into a raging crucible. I have just about been withstanding the heat that has been thrown and followed up with vigorous fanning…but I am starting to crack. Maybe cracks are good, I force myself to think. They could mean that I have moved off constant simmer or maybe it could mean that one person can only take so much, and my capacity has been overloaded. Big decisions to be made this week and maybe it’s that thought that has simultaneously taken me off the boil and made me seemingly incapable of carrying the load any more.
My signature competent multi-tasking has been gradually downgrading itself to very poor uni-tasking (is that a word?). The list of things I start each day and totally forget about (often within seconds) lengthens week by week. If I write stuff on calendar and in diary and on computer there is a good chance I will remember…but I often lose focus when performing this task and, if not in at least 2 of the 3 places…then it is hopeless. Misplacing my diary is of course a daily inevitability (and then forgetting what I am looking for…or why I wanted it). Still, the upside is that sometimes I forget (briefly) what I am actually stressed about…and sometimes the cats almost get fed twice!
Had my first Herceptin injection today. As predicted, nursing protocols ain’t the same as doctor protocols, so, after administering the injection, the nurse sat “with me” for 2 hours in case of side effects – which I understand to be aching muscles. Really? I didn’t even bother to ask what would be done if I reported aching muscles, I just curled up in front of The Legacy and semi-detached myself and…er….”chilled”!