April May improvements?

Sadly, CC is still not okay, but there is some good news! As April draws to a close and we head into May, CC is not as bad as she was in February. What happened? Well it's hard to say and even harder to find the time to go into details; a reality with which many carers/caregivers will be familiar.

And here's another thing to which every carer/caregiver can relate: an apology for not following up on a commitment. For example, in my prior post I said would update the site to share details of what went on in February. I still think some people might benefit from reading an account of CC 's horrendous hospital experience: the five hours sitting in an ambulance parked outside the entrance to A&E (ER), and the eight-hour wait after that to be seen by a doctor.

Not to mention the 36 hours I had to stay awake to make sure CC got as much appropriate care as I could muster from the massively overworked doctors and nurses. And the deeply unsatisfactory patient discharge process. 

Off-road buggy being rebuilt
by CC (2000)

The result is that we still don't know what caused CC's acute delirium. She She did get an MRI of her head in March but we won't be given the results until May. Thankfully, through sheer grit and courage, plus increasing doses of sunshine, CC has managed to cope with her fluctuating levels of cognitive ability. 

I've thrown in a couple of images that reflect CC's personality and character. While stationed in the middle of Australia safeguarding a massive top secret network centre, she bought a dune buggy that had crashed in a gruelling off-road race out in the desert. For fun, she rebuilt it and raced it, in that same race. 

Five years later, after writing two very technical books, her health was in decline. Over the next 20 years, CC endured a growing loss of abilities that has occured in waves. 

Off-road buggy ready to be raced
by CC (2000)

Now she has survived yet another round of expectation downgrade, that incredibly tough to accept realization that even more things in life one once thought possible not longer are.

Both CC and I still believe that the founding principles of the NHS are the way that all nations should handle healthcare. It should be comprehensive (covering the whole population), universal (available to all), and free at the point of delivery, funded through collective taxation. In other words, care based on clinical need rather than the ability to pay.

However, we both agree that the current state of the NHS in many parts of the nation of England is now beyond broken. We live in one of those parts. That means CC is increasingly reliant on a personally funded GP. And we have turned to a personally funded gastroenterologist for help with a recurrent issue, periods of daily nausea and weekly vomiting. 

On the other hand, CC just got a call from an NHS doctor who specializes in chronic pain and injection therapy. He is a recognized expert in his field and all three of us connected over our shared experiences
as published authors. We are hoping this will lead to some much needed pain relief for CC.