Another decision making hiatus, another step forward, and, as a bonus, another new word. I am a “neophyte” that is. if I have understood the word correctly – converting to my own lay medical approach of dealing with metastatic cancer. I have stopped treatment.
Life is short and I am going to go my own way (not sure why this is all starting to sound a bit Fleetwood Mac) through it and quit being medicalised. I have reached a point, at last, when I feel my judgement is sound and I am not being controlled. I no longer want to be a slave to the hospital, all its sub-text and endless testing (not forgetting the permanent incumbent worry). I have decided to consider myself “better” and plan to “live” accordingly.
- Yes…I have thought about it…(fancy…)
- Yes…I know what I am doing
- Yes…I have discussed with my oncologist
- Yes…I have discussed with my family
- and no…I don’t need further advice
I have now got the hang of this going solo lark. I make my own choices based on what I consider to be important. Finally I am finding out what I do consider to be important; what makes me happy and what catalysts make me spiral downwards. So…that’s the plan.
Just over 5 days without an internet connection has proved challenging, irritating, expensive and a reminder of how life was, not that long ago. But, as my invidious disease, former “friends” and ex-husband have taught me…there is no looking back. Eyes forward and get on with it (at least I knew this communication issue was finite and I could always find a wi-fi or 4G spot if needed!)
In the meantime the hospital letters have been pouring in after a brief hiatus. Herceptin is continuing after an obstacle race with my echo results. Next week I embark on my 5 day ECG. I am still unclear how this works. I understand that a mechanism the size of a mobile phone will be fitted and can be attached to my belt or go in my pocket I have neither but am ignoring that for the time being. Just imagining that I might be offered a Guantanamo one size jumpsuit with pockets and belt for the experience but expect I will have to work it out for myself (gym will be interesting!). On day 5 of this, I have been called for a mega-set of CT scans. I imagine I can’t do this with the ECG stuff in place. (It says 5 day ECG but clinic is every Tuesday so either it is a 7 day ECG or it will stop working on day 5 in which case, problem solved). Suspect (given the weight of experience) that problem is not solved, and, after waiting a month for these “urgent” tests one of them needs changing…but which one?
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.
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?
After a rather protracted trough I think I am now being dosed with a large enough dose of anti-depressants to make me feel normal, or abnormal – depending on perspective!
I spent yesterday afternoon being dosed with Herceptin at home. It is a curious situation being treated at home. The nurse has to observe you, as the drug infuses over a couple of hours and, as we are both sitting on armchairs in the living room, it feels like the only option is to talk to each other. I think it would seem very rude to pull out my book to read. This enforced intimacy is rather bizarre and, I imagine, rather like the confessional…This was the second time this nurse had visited so I “know” her now!
I learned about the tomato varieties she grew this year, how the housework is shared in her house, the unpredictability of cancer…and more…She learned about the novel I talk a lot about writing and the emotional fallout of the divorce process. We had a long discussion on hair loss from chemo. She told me that I was in the majority (of “her” ladies) who suffered far more from loss of their hair than from the loss of a breast. How soon, I wonder until we look back on chemotherapy and wonder how patients possibly subjected themselves to its brutality? The two hours flew by! Next time we plan to discuss assisted dying/refusing treatment and Dignitas!
Scans and echocardiogram now loom…