Tag Archives: ICU

Offload mode

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?

 

 

Nul desperandum

Trying to get myself up and running (take “running” with a pinch of salt)…and back to reclaim my gym bunny status. First obstacle was preparation: how to hold the hand weights, I assumed that you carried them like you would a handbag. What other way is there? But no…you grip them and point them horizontal? vertical?…and what is the velcro for? I watched several YouTube videos on “how to do it” and set off. Success. Then I gave myself a few gym challenges and did the return trip. I felt great. I had cracked it and was back in the driving seat.

Today is another story. Phoenix back in the ashes. Unless I am hallucinating still, I think that some “kind” soul has been laying into me with aforementioned weights and pummelled me down to ground zero. Not only does every part of me ache but I feel like Rip van Winkle to boot. I can barely put one foot in front of another and ashen doesn’t even begin to cover my wan appearance, despite multiple coats of tinted moisturiser (all major brands!) .

If whatever force it is out there, is making yet another onslaught of tactics to lay me low again, they can forget it…I will take it slowly but I am not going to be defeated by this despite endless hospital testing, two holiday cancellations and no driving licence. Maybe I need a couple of days off the gym but I’m not giving up…

Meantime I have a 10 hour date with “Making a Murderer” – part of my latest online course, Forensic Psychology…I am assuming this is not a “how-to” documentary rather a psychological profile but who knows.

 

 

Pear shaped

Just when I thought I may have honed recent “happenings” to something heart function related, my echo results show a marked improvement. My percentage (of what, I neither know nor care) has now risen from getting too low, even for a herceptin patient, to a normal range (I obviously use “normal” with caution). So from where I am – it looks like stroke, meningitis and heart function were not the cause of my “death”.

My next planned activities are oncology and R-Test Event Cardiac Monitor Clinic, then more CT scans and…just for an added bonus a mammogram. Party on…

I am severely drifting off course with  what is “being happened to me” (I have even had to create my own descriptions). I did not want to drift into more and more diagnostic testing and spending my remaining life in hospital waiting rooms. However without a diagnosis there is absolute zero chance of either long haul travel or driving. So, how to deal with being fenced in?

I could, of course, make friends with myself again, adapt and accept that my ICU jolly has shrunk my horizons (as well as eating up a huge amount of the local NHS budget). And, given time, I’m sure I will, but I’m not there yet and am still keening for the relentless hand of brutality being dealt to me. Life seems to be sending me more than my fair share (surely?) of curved balls. And I am not going to respond in any kind of positive way, if anyone starts up about troubles only being sent to those strong enough to stand it…ENOUGH ALREADY!

Next stop – I need to try and claim money back via my travel insurance and try to organise this bus pass. I say “try” because I have very low expectations of achieving my goal. Another day of expect the worst, hope for the best

..but I have: hair; cold-brew coffee; a lovely place to call my home; books from Baileys Womens Prize and Wellcome Book Prize to read; Tom in the raspberry Ocado van coming my way and plenty more besides.

Cutoffs

THE ICU experience lingers, always on my mind, awake and asleep. Unsurprising I imagine, but it is curious to have so much time blotted out, when so much was happening to me without any level of awareness whatsoever. Maybe it will mosey around in my head forever.

The latest knot I am unpicking is that my clothes were cut off me. Imagine coma-ing my way through that, imagine? I thought that only happened in telly dramas. Thankfully I had felt warm that evening and had taken off my very old cosy (aka manky) black cashmere hoodie which remained on the sofa until I got home…and I was, of course, wearing clean knickers, because I listened to my mum’s advice about clean knickers and never knowing what may happen! Turns out you do indeed never know what may happen but I also may never know where those particular knickers have gone.

I can’t believe that after a lifetime of watching and re-watching ER  with its constant  reprise of  “call the crash team…chest drain…central line…Chem 7” that I missed my own surprise party. I was never sure, back in the day, who was being instructed to follow these oblique commands, but followed they were. I am convinced that us Brits are less voluble (and I do always watch 24 Hours in A&E as vicarious learning) but I don’t think I have ever “witnessed” clothes being cut off.

It may be farewell lovely dress, but the sofa has no forensic evidence of what it witnessed…and oh yeah..I’m alive!

Gudrun dress

There’s no place like home….

Whilst I love my home…I wish I could do “Dorothy’s” trick, click my heels and be transported elsewhere. Don’t get me wrong, it is very lovely not to be in hospital, but not being diagnosed brings a whole raft of new and different problems and restrictions. Whilst I knew I was never going to defy the cancer, I did really think I could duck and dive my way round diagnostic testing to enable me to follow my dreams. But no…

So, new situation new dreams…

Whilst I remain fairly fragile, lethargic, anxious, exhausted yet wakeful (fearing the hallucinations) my brain continues to process the changes and is now on a major diversionary route. The consequences are that I’m now thinking…topiary..never let it be said that my dreams have diminished in size (and of course doo-wop remains on the list of possibilities.)

topiary

…and I have a new pigeonhole to nest within. It appears that (if I have enough energy, commitment and develop a love/tolerance for phonecalls and paperwork) I can become a “Category H” disabled person and qualify for a free bus pass. But if and only if, I can provide evidence (and there’s the rub) that I am liable to sudden attacks of giddiness or fainting OR that I have “another medical condition” which means I would be a danger to the public if I drove. I think any word with “other” in has to be the category for me.

Fainting is the latest explanation I have been given for my ICU stay. I am told that fainting can be fatal. Who knew?

 

Shrinking World Maybe, Shrinking Violet Never

Looking at my “Life after discharge from Intensive Care” leaflet and finding it is “normal” to have tearfulness, depression, bad dreams and a Bermuda Triangle of a brain but that doesn’t seem to be helping make it OK on any level at all.

Not only have I lost my dreams for living but my personal independence. I will battle to my last breath in resistance to my defiance being put away in cotton wool in a shrinkwrapped box in a padded chest to be kept safe. I am not the village idiot…I understand…I understand that this experience has probably been worse for those around me than for me but, in the space of 7 days I seem to be sleepwalking into the scenario I have most feared as every part of me that makes me “me” is dissembled, piece by careful piece.

Don’t worry…I can do the platitudes and of course I am grateful for what I have, really grateful and blessed but this loss of independence cuts so rawly after every loss that I have had to shoulder because this is about my very being. I shy away from the word dependent but I am in freefall towards it.

Of course there are solutions (of a kind) to these first world problems of mine but my opportunities to go off wherever I want, whenever I want, however I want, have begun their erosion. It means somebody else always has to be aware of what I want to do and when I plan to do it and for how long, unless I am in my “safe” environment. That is the very same “safe” sitting duck environment where I collapsed.

Surrendering my driving license makes me want to bawl. Surrendering my driving license and then not being able to attend my speed awareness course (for driving at 34mph in a 30mph zone) and being given penalty points on my license makes me bawl in a different way. A bemused voice on the phone at DVLA couldn’t even tell me where I should send my license. Medical? Penalties? or hey maybe it should go to Other – of course, silly me, other – my usual destination. One way to turn bawling to laughter at least.

And…as if this wasn’t enough…whilst other people may dream they went to Manderley…last night I dreamed about cooking dessert for George Osborne at the Waterside Inn (just the two of us)! Then I woke up (really woke up… I think) came downstairs, put on the TV and found myself in another parallel universe with a Welsh language channel blaring. I am just parking those two random happenings today.

Round peg, square hole…I ain’t changing now and I will adapt and move forward, but quietly? Never.

I have, unsurprisingly, left hospital “against medical advice”. Something I can still decide for myself.

 

#HelloMyNameis

Unsure how well known this hasthtag is. Brought to life by the wonderful Dr Kate Granger – a doctor in Yorkshire turned patient by cancer. Read her book The Other Side.

I have not been silent by choice. After an infusion of acute stress last week my reaction was a near fatal collapse – blue lighted to hospital, 5 days in intensive care, when my family were gathered in the small hours to be told that I probably wouldn’t make it through the night. After being ventilated, intubated, gastro fed, catheterised, lumbar punctured, scanned, x-rayed, monitored to the nth degree and many bits too gory and hallucinatory to mention I remain undiagnosed but fit to communicate, even though fit for very little else…although I have at last been able to have a shower.

It is so comforting to know that even as paramedics cut off my clothes…my cat remained asleep next to me…Not so, my son…my rock.

So, my plans for doing the “living to death” have taken a dramatic nosedive or diversion at the very least until neurology/cardiology find a diagnosis that is compatible with travel…some hope eh…? At present a hairwash feels like living the life. The options currently range from stroke to living with type 1 diabetes and other delights. Me..I expect no definitive diagnosis.

I have lots to say about the ups and downs of this continuing experience. How dare anybody complain about our NHS and the dedication of all its staff. How dare they challenge the rightful requests of our junior doctors. I can only think they are people that sit behind desks and don’t ever see life at the true coalface.

When I did not show up for my oncology appointment because of being hospitalised in a different hospital, my wonderful consultant looked me up on the hospital system, saw what had happened and phoned me on my ward to talk with me.