God, yesterday was the shittest day I think I have ever had in this crappy chemo-schmemo world – what a total crock of bollocks it all added up to be, not to put it too finely.
I'll try not to waffle (anger and annoyance do tend to make me bang on) but in a nutshell (my nutshells are also not very little I know) here's the scoop:
- got to Parkside at 10.15am only to be told my Prof appt was at 11.30 – well thanks for letting me know, always a great start to an undesirable Monday hey
- felt utterly exhausted, worn out, worried and below par – pretty obvious that a bit of 'extra help/kindness' might be needed – not entirely forthcoming
- had to wait 45 mins for bloods to be taken – which effectively adds 45 mins to the time you're there as it takes about 2 hours for the bloods to come back and then the authorisation for Velcade to be given – so always annoying when you sit waiting for ages and no-one is in the bloody bloods room anyway, not like there was a queue, just disorganisation, the word for the day
- Warned the lovely Jane Beaton by email that it was a bad day for me – bless her, she tipped up with crisps, cherries (nice call!) and various other tea-reducing ideas – good girl
- Tried to find a private space so I could shamelessly cry and let it all out – none to be found, so had to say 'we'll be in my car in the car park – it's the big grey one- if by any chance my Velcade is ready, do please come and get us from there' – didn't feel quite like the 'private hospital experience' but hey ho
- Went back in to sit in the chemo lounge and was told 'someone will be with you in a minute' – well, quite a few (aka many) minutes later, they weren't. I'd been there since 10.15am and was hungry (1.15pm by now), Jane is diabetic and needs feeding (I so love having her as the excuse to feed my own hanging open gob) – and all the other patients seemed to have sardines or even a jacket potato (the old woman with this was dozing and it was a real effort not to nip across and swipe it from her while it was still hot..) So as no=one seemed to give a toss, we left and went for a tuna potato at the good old Cafe 377, near our house – they are getting a fair bit of business from em right now, but its just about walkable, is very quick, good value and has a range of comfort food, so ticks quite a few boxes (excluding the usually desirable 'great cocktails' one, but that's a tad off the menu for now, even for me..
- I let Jane go – she's been brilliant – and hoofed myself back up to PS for the Velcade. Given to me (in the gut, trousers partly down) in full sight of several other chemo losers, which also felt wrong but I was too shagged to say anything
- Then a long wait for the drugs bag to be given to me by Pharmacy. Yes, I had been there for 5 hours by this point, and yes this was the first day of cycle 2 so they are meant to hand over all the drugs needed for the next 3 weeks. Was it bloody ready? Was it cobblers.
- Drugs bag arrives – I spotted something was missing. Not a critical item so will pick that up on Thursday. Then spotted another item missing – the syringes for the Revlimid boiling fiasco, very much needed – you'd think after 5 bloody hours they might have had time to check it and get it right, but no, I sat there a bit longer.
- Then Prof catches me – apologises for how shit the day has been – and sends me for a surprise scan of my giant tree trunk legs and ankles to make sure nothing sinister causing their buttress-root impressions. Just what I needed at the end of the long day. And – guess what??!! – nothing at all to be seen, so a waste of time.
I think the learning is also that the delay in getting the drugs throws you back off the cliff of emotion again. Cycle 2 was meant to start last Thursday, but had to wait for the shoulder op on Fri. Then it couldn't be Fri due to the infection chances post-op. So waiting till Mon late afternoon/Tues morning (some of the drugs were too late to be had on Mon) is a very good example of how an overly long gap is a nightmare. You are SO impacted on by the drugs, its easy to forget that they actually have a job to perform (because I look at them entirely functionally, just have to be shoved in mouth on the right day at the right time) – and when they aren;t taken, they can;t do their job and then fuck you up in spaces! Definite note to self – avoid any delays and get each Cycle running smoothly into the next one, as Monday truly was a horror.
Only little bit of good news – the Paraprotein has gone down again from 4 to 3 now – but again, is a bit 'yay…….' – good to have as it might mean only 1 or 2 more cycles (yes please) but this week is all about getting some proper news from the big tests and I am v much hoping something will come my way x