Monday 13 March 2023


Yes I've been black, but when I come back you'll know
Rehab - Amy Winehouse

The pace of my recovery is increasing

Three weeks at home, and I'm making remarkable progress. The one upside of this episode is that when I set myself goals, I mostly find I get there quicker than I anticipate. It's only seven weeks ago I could do no more than waggle my index finger. Now I can climb the stairs. As a consequence domestic life is getting easier. I am sleeping in my own bed. I can use the shower instead of just having a flannel wash. I can eat at the dinner table with my family. Meaningful milestones.

Being a hospital veteran, I also start each day by taking my own 'obs': temperature, blood pressure and oxygen saturation. The last of these being particularly important if I'm going to get an early warning of any future respiratory problems. And I promised myself, when I was stuck in ICU, that I would create space in my life for a little more self love. So, I'm enjoying adding moisturiser and fragrance to my morning routine. It all contributes to improving my life, and family life, Here's a mugshot to show the moisturiser routine is paying dividends...

I feel I know the NHS better than most. As well as being a regular in the haematology department and the clinical trials unit, over the years I’ve seen urologists, pulmonologists, cardiologists, orthopaedists, and several types of neurologist. I’ve had chemotherapy and radiotherapy. I've had stem cell harvests and stem cell transplants. I’ve had day surgery and in-patient surgery, and had ambulatory care as well. I’ve had planned hospital stays and unplanned hospital stays. I’ve spent many weeks in ICU. In total I've slept in 6 different wards at Kings College Hospital (and a few more, as you'll be aware, somewhat further afield). I’ve had umpteen MRIs, CTs, PET scans, X-rays, bone scans, biopsies and blood tests.

Most of my care has been in hospital, and most of it is top class. The admin can be frustrating, and it often involves too much waiting, but mostly it works ... However ... The process of discharge into community care has been a new experience for me. Verdict? Appalling. Disorganised. Unreliable. Palmed off from one contact point to another. Put on one waiting list, and on reaching the top, finding myself referred on to someone else, who simply puts me on another waiting list. Kafka-esque. Through-The-Looking-Glass-esque. It has really dented my opinion of the NHS. Since I came home, I’ve pretty much had to fend for myself. It took over a week to get a district nurse to visit, despite them agreeing my pressure sores need to be seen by a nurse every second day. And I'm still yet to see either a physio or an occupational therapist.

In fact the structure of the physio teams seems to demonstrate all the worst aspects of the NHS. We all know the NHS is stretched but this is about structure as much as resource. Each ICU ward in Kings has a team of four physiotherapists, but the four haematology wards share one physiotherapist between them. Out here in the community, I've been directed to no less than three different physio teams (all with cryptic names) none of which seem capable of actually turning up at all. So as one moves from ICU -> ward -> home, the physiotherapy service simply withers away. I'm having to make up a physio routine of my own.

As part of my personal routine, having conquered the stairs, the next logical step (boom boom) is to venture outside. I had a hospital appointment on Friday, which was my first time out of the house and since then I've been on two walks to the park. I don't get much further than the park gate, so far, but merely being outside is a thrill. I've barely seen the outside world in almost three months.

The hospital update is that my consultant thinks I should restart wonder drug treatment next month. Which raised the issue of ongoing side effects and ongoing infection vulnerability. I'll find out, soon enough what side effects I'm left with, now that I'm infection free, and without all the other complications I was dealing with in the autumn (e.g. radiotherapy). Maybe it won't be so bad. Fingers crossed. And they're proposing to put me on monthly immunoglobulin infusions - donated antibodies, basically - which might reduce the infection risk a bit. Hopefully, the warmer weather will help too. Ultimately, the Dr thinks I'll relapse if we don't continue to treat - and whatever problems I might have, they'd all be worse if my myeloma was active. For now it continues undetectable. Hurrah!

It has been lovely catching up with so many people I hadn't seen for ages. Thanks for the visits. I hope to be capable of "going out" relatively soon now. And special thanks to the team of people who have been cooking food for us - it's one sure-fire way to really help.


Anonymous said...

Al, you are absolutely incredible! I’m so very proud of you and in awe of your tenacity and passion for life x Love you so much x Keep fighting, the worlds a better place with you in it ❤️❤️❤️😘😘😘 xxxx

Edsaykay said...

You've been through the wringer, to put it very mildly. I am still full of hope and optimism for you. You've said it before but with myeloma, the longer you live, the longer you live. Keep going.