Monthly Archives: April 2016

The Ant-Man Cometh

I appear to have slumped back into my “Plagues of Egypt” period. Ants are attempting a pincer movement in my kitchen (worktops, cupboards, floor, bin) and my counter-offensive is proving useless. I have called for backup but apparently that can only be provided once the ants are identified…only garden ants or pharaoh ants can be “resolved” by pest control.

Whilst I was struggling with identification issues a friend knowledgeably remarked that the pharaoh variety sported headresses and sandals. I don’t have them. However the ant-man cometh and I am relying on the fact that:

  • he has better eyesight than me
  • I have the common or garden variety of ant
  • he has better seek and destroy know-how than I do.

Identification is the buzz word of the week here. Identifying my medical “problem” and identifying myself. It appears that the hospital departments I contact do not have any record of me. I am wondering if this works like unsolved crimes. If I don’t exist then I do not need diagnosis or possible expensive treatment or monitoring and hospital “success rates” improve. My ECG results are..who knows where? My neurology results (from my hospital stay) are…who knows where?…and my echo results seem to exist only when I am physically in that hospital department. The chink of light is that my full set of CT scans are clear (I say clear in the sense that nothing new has popped up and that what is there is being kept at a standstill by the herceptin).

I am trying to see this as positive. If I don’t exist then I don’t have any medical problems, therefore travel insurance and driving need not be an issue. But it is never going to be that simple.

 

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Whip Crack Away

I have detached my 5 day ECG and returned it (as instructed) to an empty Reception area. I will have to assume that it will be picked up, read and reported on. Meantime I am left with the mark of Zorro on my chest. Another procedure, another memento.

2016-04-17 09.32.54

I await the next round of prodding and poking, but have a hospital-free week (at present), which I am filling/have filled with a selection of birthday treats. Given I rose from my bed and survived an over-long blue lip experience, two things (of the shallow variety) sprang to mind.

  • that every birthday should be a “big” birthday
  • that lips should always be red (Viva la Diva red today!)

I have been made-over by a wonderful lady-boy, acquired crimson talons on my fingers , cockail-ed and dined, shopped until I dropped (and even used an uber cab – not my app, not my idea but I am happy to hang on to hipper coat-tails than mine). The next highlight is to singalong with Calamity Jane (Doris Day & Howard Keel).

This may not exactly suggest a range of activities that includes something for everyone but I care, not a jot…I can place my cowgirl neckerchief over my tender spot and get back to those black Dakota hills…

Calamity Jane teaser

 

 

 

Poppers

Electronic tagging has been done and I have been discharged back into the community for 5 days. ECG monitor is attached with a popper (the press stud variety) and hung from a particularly funky NHS “necklace”…not! Unsure why belts and pockets were mentioned. I have a diagram of how to remove/replace for showering but it has been copied so many times, all I can see is a torso outline – no positioning guide no anatomical indicators.

I have to leave the ECG plus questionnaire plus medication lists at hospital Reception on Sunday and not to worry if nobody there…just leave it. I am sure I heard this correctly but am not computing this instruction well.

I will not get results unless there is something major wrong with me when I will get a letter and an appointment. No timeframe for this. I can’t chase up because I don’t know which department referred me. The nurse fitting the monitor said it was a Dr Light-tower, but couldn’t tell me her department.

I couldn’t make this up…

How do I get an all-clear if (there is even an outside chance) I am all-clear?

As I sit here missing my big adventure, I have started looking at trips again as my travel insurance is paying out for those I had to cancel…Maybe, after all, I can…

Wearing my heart on my sleeve

Tomorrow is the day for my 5 day ECG fitting aka R Test Event Cardiac Monitoring. I remain bemused about attaching the monitor to my belt or keep in my pocket.Even if I choose suitable clothes, what happens at bedtime? Or, if monitor is put in a back pocket, does that mean I can’t sit down for 5 daytimes? I am hoping the mysteries will demystify tomorrow. However this all works (or doesn’t) I imagine the cats will derail it. Then there is the issue of what an R test event actually is,  R for repetitive? random? ridiculous? recreational drug? red wine?

In the meantime I have been sent a reminder “to wear something comfortable”. On which part of my anatomy is comfort “something comfortable” required, I wonder.

…and just to add to the “fun” my arm seems to have developed a curious reaction to the adhesive (?) that held my cannula in place for my #FridaynightCTscans. Unless, of course, an elliptical rash, is a portent of something “other”

 

Jack-in-the-box

Maureen Lipman in the 1980s has to be my role model in so far as counting my success in my own particular “ologies”… and here she is.

This week I have had letters from: neurology, radiology, oncology and cardiology. I am assuming that this is part of continuing quest to discover which box they are going to try and put me in. I thought we had agreed that neurology had been struck off, but it appears not. No idea where the referral has come from or for what, but  says in the letter, the ominous “expect to be in the department for some time”.

I imagine that there is no line of communication between the “ologies” and wonder what happens after whatever tests/findings are completed. Think I will need some sort of co-ordinator or one of these new NHS “navigators” (but suspect their role, whatever it is, will not cover what I need).

Suffice it to say I am neither planning to be put in a box (of any kind…) nor visit all 4 departments routinely. Not how I intend to spend my time BUT I am going through the motions insofar as required for any possibility of future travel insurance and driving.

Back in my virtual world

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?