Who knew what a minefield I was walking into and the reactions I have had since my first mention of dirndl-wearing ? Anyway to set all anxieties to rest, a friend has sent me this article click here…finding Jewish meaning in unexpected places…is it kitsch? is it political?…or as originally planned, is it just about being daft?
Being daft surely has to be top of the agenda when cancer keeps trying to nudge it off the top-spot. But I keep sweeping it away and indulging the silliness…and this time (with a vengeance) in a dirndl!
Should I stay or should I go?
So…I approach the moment of truth..hospital doctors say yes, travel insurers say perhaps…Consequently yet another clinician has to be involved as it seems everything balances on what is said in my medical notes and how that compares to what I need it to say. All this in order to get insured to kick-start anything on the scale of a vagabond lifestyle…
Not only do I now need to attend multiple regular medical tests (to keep them “happy”, makes me neither happy nor re-assured) but also these appointments to see how I have been coded by the GP from the spider’s web of data she is getting from multiple departments. Fngers crossed that it matches what the insurers have strongly hinted is required.
I am now 2 weeks off having to pay the balance for the big adventure I have planned for later in the year, with yet more uncertainty seeping into the mix. Insurance aside, am I actually strong enough now to cope with such a big trip, perhaps I’m not? Whilst uncertainty seems to be a way of life for me…it would be so great to have some fixed points.
So I have made one. I could completely drown in this medical madness but instead have taken some diversionary steps. I am going to do something I have long hankered after and have booked a trip (with friends) to Salzburg for 3 full days of Sound of Music immersion (and accompanying kitsch). Something, I imagine, everyone hankers after..?
I was depressed to find that whilst I could flounce around the city singing and wearing curtains, I would not be able to hide behind the gravestones in the convent with Rolf’s torch flickering over me before my escape. Alas this set was man-made and dwells in Hollywood. The rest, however is there to discover…But first a visit to Oxfordshire Drama Wardrobe to select the right “costume” even though there is a “rent a dirndl” option with the tour (good for backup)…
Fast forwarding through dentist, diabetic checks, scans, herceptin, numerous telephone consultations and a fabulous double dose of both Simon Schama & my American family… I have been fully immersed in The Quest for the Cures – fascinating stuff (albeit 9 hours of it on YouTube). It looks at our lifestyle and eating habits, sugar and acids particularly, and their role in the proliferation of cancer. This is examined along with the effects of the treatments were are being offered.
To put this in context, I am strongly in the evidence-based medicine corner…almost nailed to it. However amid this (rather jarring) American proselytising documentary I am feeling that there is something to hear and heed seriously about our heavy handed treatment of cancer. Instead of bombing the immune system with chemotherapy and radiotherapy, maybe we should be boosting the immune system and de-toxing. There are (inevitably glossy, shiny, white-toothed smiley American) people demonstrating how changing their habits have”cured” them. I take this with a winnebego-load of salt but something is resonating loudly here.
I have already done the bombing with chemo and surgery so am unsure how I can or could go with the programme. But, whilst I have already long pondered the decision of refusing mammograms and further chemotherapy I continue to look at the options.
I now have 6 hours of Cancer: The Emperor of All Maladies to watch (it is available free online in US and DVD in UK)…As “they” say knowledge is power
A few of my favourite things…well…so far as a day in neurology goes
- Parking space
- Appointment on time
- The sun shone – literally and figuratively
- ECG clear
- EEG clear
- Brain “normal”
- Not dissociative seizures
- Not epilepsy
- Not meningitis
- Can reapply for driving licence in 3 months (neurology says yes!)
- Can travel
- Can ride bike
- and, it appears I can touch my nose with both left and right index fingers with my eyes closed – this is obviously the most comforting thing to discover!
- Can’t swim in deep waters (haven’t I been doing this for past 3 years?)
- Can’t go up ladders (but then I never could)
Tomorrow, another day, another hospital
So…two months after “The Big Nap” I finally reach my last (current last) harbour on the checklist for diagnosis. The brain guys. Neurology. Wednesday.
Given that I (apparently) had the relevant neurology tests when in ICU, and they were “clear“, I am unsure if this appointment is to give me an outcome of some sort, further investigations or is just the place of last resort!
I still don’t have ECG results. I would like to think that this indicates they were “clear“, but have far too much experience of NHS administration to really believe this. I anticipate more phonecalls are required and wonder which area of the hospital I should bother next.
I have been reading assiduously around the subject and the latest volume “It’s All in Your Head” by Suzanne O’Sullivan (recent winner of the Wellcome Book Prize) has convinced me that my diagnosis could well be – disocciative seizures. Despite the fact that this is a label that doctors are reluctant to use. This condition is most commonly brought on by trauma, which also fits. The only fly in the ointment is that I suffered cardiac arrest as well which does not seem to slot into place with the other symptoms, but everything else is there. If this is the endpoint for the recurrent collapses then it helps neither with driving nor travel nor, possibly, life expectancy BUT may decrease hospital appointments…LOL!
Cloud, silver lining? Silver lining, cloud?