…so whilst pottering and titivating (my new pastime)…I received a phone call from the Eye Hospital. Back in January I had an appointment where retinal photos were taken and I was told that an appointment to discuss with the doctor would be arranged. At the time I remember thinking that it was a not so subtle way of reducing their waiting list, as leaving human contact in the hospital without an appointment is very dangerous, trying to contact the Eye Hospital by phone is not for the faint hearted.
Anyway a very nervous doctor (possibly only started on 1 August) started his call by saying that he had been trying to contact me all week….really? He needed me to come in to clinic “tomorrow” and so we arranged it…then he rang to change the time…then rang again to change it again…so the “right” doctor can see me…So, my phone is obviously working.
…and what can I expect from this hastily arranged appointment…
- that someone has only just looked at January’s photos and there is something wrong
- that someone has realised I hadn’t been sent a follow-up appointment so was trying to fit me into a cancellation
- or perhaps this is how appointments are now managed
All in all rather odd (good job I am still taking the tablets) but I will go and sit and wait (part of the Eye Hospital experience) and “see” what happens whilst I also wait for confirmation of herceptin treatment on Monday. Reality is that I am more worried about the fact that I am being so compliant rather than what they might tell me, non-compliance seems to be my new modus operandi!
You might have thought that I would be knee deep in boxes and wondering where to put things… However, instead I am exploring previously unknown foodie websites and discovering ingredients and kitchen equipment that looks pretty essential for my new home…
At the top of (yet another) wishlist are: a risotto paddle (how have I ever dared to make risotto without one of these?); a universal food baller and, the piece de resistance – a vegetable sculpture knife set (and possibly a course to go with it!). Then on the spice front – who could resist Virgin Islands Spiced Salt, Australian Murray River Salt, hot mole paste, liquorice powder….and I could go on…
Herceptin given in my own home too…and multiple hospital letters delivered to my new address as well..so it looks like I am in business
Meantime back at the coal face I am amazed that I have managed to construct some flat pack furniture…it was slow but the miracle is that I took my time and was patient, not one of the qualities I am known for. Even better than the sense of achievement I felt…the furniture is still standing! As if that wasn’t enough I have also fitted a wireless doorbell, all on my own. Laugh if you like but neither of these tasks are anything I would have had any confidence in doing myself before last week.
..and, oh yes..I have won a prize from the Delia Smith website
…and ain’t that the truth…
The week has grown more and more stressful – my varying problems combining to make me forget (until I was called to be reminded) about my Herceptin treatment on Monday. Maybe forgetting is good…normalising the abnormal…?
I am (despite daily glitches, delays, arguments, cage rattling and professional incompetence) on the cusp of divorce and house move whilst continuing to deal with life threatening illness, bereavement all exacerbated by insomnia…and the answer is…? Well..my version of events involves trying to forget how I feature on the list of top life stressors of which I only seem to be missing “death of spouse” and “imprisonment” hmmmm.. are they related? Will safely “park” the former in the non- applicable spot and ignore the other (for the time being!) Instead I indulge in the age old female remedies of retail therapy (window shopping anyway!), supping chilled wine in the sunshine whilst putting the world to rights with friends and of course, my own particular default setting – burrowing myself away into a good book. All done, of course, whilst taking the maximum anti-depressant dose.
Something I read the other week rang a bell whilst working my way through this mire…I can’t remember the exact words..but something along the lines of
“I’m not actually dead, I’m dormant”
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”!
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”!
Today I have been examined, checked up on and booked in for more scans, several more…and more appointments but it appears that physically (at least) I am on an even keel. Bloods being “unremarkable” is a good thing, however I seem not to have had all the required tests so back for some more despite black, grey, blue and yellow arm. Whilst the nursing team think I may be starting to experience clotting problems…the doctors just raise eyebrows when I mention this! Phew…that’s another test I can duck out of….Mentally, I remain scrambled but that can’t be dealt with in anything evidence-based.
The good news is that I am moving from Herceptin infusions to Herceptin being delivered subcutaneously ie injected (in my thigh I believe). I had heard of this but understood that I still needed to be “observed” for 2 hours post-injection (so, no great advantage) by the visiting nurse BUT it appears not…evidence (gawd love it!) has shown this to be unnecessary. So…next treatment may not (perhaps) involve worrying about my conversational appeal to the nurse who visits, it may (or may not) be a quicker in and out…Of course nursing protocols often vary from doctors protocols so I have to wait and see…Roll on 2 March.
I was lucky enough to have the “perfect” nurse this week…who was more than happy for me to read my book and duck out. We passed the time of day along with the requisite medical information, but no more and she got on with her paperwork (which isn’t “paper” of course but admin on her i-pad..which is always entertaining to sign-off at the end of the treatment!) and drank her licorice and cinnamon tea whilst I did my own thing – so far as I could whilst being hooked up to a drip with a needle in my arm – “my own thing” is just so far from what it used to be that this is somehow my new normal.
I understand (from those who know how this works) that the NHS pays less for her to travel all the way from Somerset to treat me (for 2 and a half hours) than it would cost for me to go to the hospital a mile away for half an hour. I worked within the NHS long enough to know that I should not find this extraordinary but my instinct was to question this modus operandi, but not for long…I now just go with the flow. There is a “training day” for all the Healthcare at Home nurses next week in Burton-on-Trent (where HQ is to be found) so guess I will find out what has been taught on my next visit. I suspect that it won’t be as streamlined as I am led to believe but am prepared to be open-minded and, dare I say, optimistic? (What choice do I have?)
My beloved friend still hangs on – alternately crying and laughing down the phone but we keep talking. She likes me to be disrespectful of her “condition”. It remains an impossible situation every day but “we” keep going. She is determined I don’t go to pieces on her and so I don’t…yet. She has always been stubborn and I guess she will go when she is ready. I will never be ready, never.
Try to imagine housework being done in the style of – a mix of Cher in Mermaids and Mickey Mouse in The Sorcerer’s Apprentice – and you have me this morning…mopping the floors to Tell Him….
Whilst I really don’t want to be thinking about HIS kiss…and where he was/is planting it – just too sordid, it was an hour or so’s light relief. It gave the cats (and me) an excuse for some exercise – theirs (suffice it to say) involved tearing out of the house at top whack. And the bonus is..I now have very well polished wooden floors and a sparkly house.
So, I am “ready” for next stage of medical intervention. Monday kicks off with a “new” nurse visiting to treat me. Will she be chatty? Will I want to chat? What will be her particular “observation” style? Will I be able to read my book? Will I be here? (I do often ponder going AWOL). And in my current mindset, I feel I should probably launch into a rendition of Que Sera Sera.!
My inner arm is already extensively bruised (from elbow to wrist) in charming shades of purple and yellow (not quite the 50 shades of grey!) resulting from 6 vials of blood tests the other day (6? I know…seems excessive and I have no idea why so many and have got past bothering to ask!). Then Tuesday is back to see oncology consultant…I have not had scans recently so I don’t expect there will be anything to report other than booking my next gamut of tests, so I don’t go with too heavy a heart this time. I suspect that I may be rather tempting fate but surely (surely…) it must be someone else’s turn for the wicked fairy.
I always thought myself quite literate so have been surprised, when trying to read the newspaper, of all manner of new (?) vocabulary that seems to have crept in, when I wasn’t looking. Maybe everybody else knows what a mocktail is, but I didn’t…same goes for hidalgo…scanxiety (which, if you already know or have looked-up, you would have thought I should have heard of) cortado, MAMIL and many more oddities I encountered in the very first page I attempted. Am I really so disconnected from “real” life? I feel like Rip van Winkle but I feel sure I was awake yesterday. I’m sure I was…
Pushing that worrying distraction to one side, onto the ever increasing stressy pile, I prepare for more treatment this week. Whilst I know the Herceptin infusion is keeping me alive, it can’t help but prompt a reminder of my diagnosis and whatever buoyancy I have managed to capture seems to evaporate (for a while anyway). I want to dispense with this 3 weekly ritual and just let nature take its course (I feel relatively well after all) but I suspect that I am not going to be allowed to do that. So I prepare, again, for a half day with a Healthcare at Home nurse…I think the nurse who will be treating me is the one who is scared of cats, so no furry ball of warm comfort in my lap tomorrow afternoon. Then I am scheduled back at both Eye Hospital and Dermatology in the next week…and blood tests…Whoo-hoo…the fun just goes on and on!
I am expecting 3 packages today, all of which are marked as “out for delivery” on the tracking systems. This inevitably involves a day at home. Not so bad on a drizzly, cold winter’s day but there is something about having to stay home that makes me find really urgent errands that must be done today…Why is that?
Two of these packages are being delivered by Parcelforce 24 – one has arrived – the other hasn’t. Why? Why have 2 packages from same supplier for the same address been “loaded onto the van” at the same depot but not in the same van? My assumption – rightly or wrongly – is that the second package, also being a next-day delivery will actually arrive today…I could of course be wrong and I will have to repeat today tomorrow…and/or Monday because Saturday may not be considered a “working day”.
Whilst confined to barracks another random question has been bothering me, after impaling myself on something in the garden. Why are plasters wrapped in such human-proof sealed units to make opening them, with a bleeding injury, so impossible? Have we not evolved enough to make them fit for purpose?
OK…so that about fixes where I am at today – truly sweating the small stuff which keeps me preoccupied enough so that I am not thinking about the bigger stuff…life expectancy, scan results, blood results, more treatment, retirement and, of course what to “chat” about on Monday with the Healthcare at Home nurse…
The gravadlax was lovingly prepared by me and my sous-chef…I am not sure it requires two people to assemble (there was no mention of it in the Swedish instructions but perhaps it was lost in translation…?) but it was more fun that way! There were waves of deliberation about how to arrange it best to fester marinate and in what dish and for how long at room temperature and how long in the fridge…but it worked! Unfortunately I can’t remember what we decided so will be unable to repeat it in the same way again BUT a culinary triumph even if the thin slicing left a lot to be desired. Suspect a sharp knife may be the key.
This provided the perfect diversion (Swedish and Jewish culture collide and salivate together) between being scanned and waiting for the results…That said, I still have another week to wait for the results so maybe I should experiment further but maybe with something I can do as a single portion!
As I was “carving” the salmon, I did think that at least this will be something new to “discuss” with the Healthcare at Home nurse next Monday, when I have my next dose of Herceptin. I wonder if this unnatural situation of being watched by a nurse as the drug infuses and “chatting” will get any easier…or how many times I will have to sit through it…or what else I might have to sit through..or what those scans have found or not found…My nails are turning purple – is this a sign?