I've been ill

 I wrote this after I was discharged from hospital last year in 2022. But it's been in draft form ever since.

I noticed it this evening, scrolling through my blog posts and realised I had posted nothing about what's happened to us.

So it's been a year since my right knee was amputated. But this whole thing probably started at least 3 years ago now in 2020.

But my memory is shot.

I wouldn't trust it if I were you.

But this account is as close as I can come to what happened to me.

Over the next few months I'm intending to edit this post, add some photographs and write a second account following on from this one.

All I've got is a series of events but I can't be sure the the order of them.

I've got to lay them down quickly before they disappear completely.

At Home

In 2020, I was  given a new prosthetist. She made a new above knee leg for me. Despite being considered a specialist above knee prosthetist, I developed a sore and slowly it developed into an ulcer. The ulcer developed along the line where my above knee leg is sealed onto the prosthesis. Secretly, I blamed my prosthetist and the long line of prosthetists I saw during that period for the ulcer, who tried to mend it. I went back to Queen Mary's hospital regularly - at times almost every week to have the problem fixed. Every prosthetist I saw, including my own prosthetist, tried to put it right, but they all concluded that the leg fitted well, and they could see no reason why the prosthetic leg should create the ulcer.

This went on for quite a while. I cleaned and dressed the small ulcer. It wasn't growing or getting smaller. It wasn't infected. But it wasn't right. It became painful. I only walked when I had to walk.  Whenever I got home from teaching or going out I transferred into my wheelchair.

The ulcer was dressed regularly and I just carried on. As you do.

At the same time as the ulcer was developing on my left above knee amputated leg I began to feel fatigued.
Everyday it was the same. I woke feeling that lead weights were attached to me, trying to hold me down. It went on like this all day till I went to bed.
I'd wake the next day and it was the same. It didn't get any worse or any better. I carried on working. I didn't connect the ulcer to the fatigue.  

The GP Surgery, hospital appointments and work

Until February / March 2022 the G.P surgery phoned with the results of my regular 3 monthly blood tests. The GP said, my results showed high levels of inflammation. He'd contacted Doctor Kiely - the doctor who managed my recovery from Polyarteritis back in 2004.  He was based at St George's hospital. The GP wanted to inform Doctor Kiely of the situation and ask him to call me in for an appointment.

An appointment came to see Prof Kiely. In the consultation Prof Kiely said confidently that I didn't have a resurgence of Polyarteritis - an autoimmune disease I'd developed when I was 17. He was confident that something else was causing the high inflammatory markers, the anaemia and low red cell blood count. I think he put all my symptoms down to a virus.

So we went back to our local G.P surgery with one question.

"If this isn't Polyarteritis, then what is this?" The GP said she'd send me off for tests.

She was one of the surgery's GP team. I'd never seen her before. She seemed in her 20's. I was pissed off and didn't expect this consultation to lead anywhere at all.

About the same time [as we were seeing the GP] in March 2022, I experienced fatigue. I remember teaching, but feeling the whole time as if I was being weighted down by a huge stone hanging over a long drop. Other symptoms developed, these included sleeplessness, loss of appetite and  sudden short fevers. I assumed it was a virus. It would pass.

A couple of weeks passed. I continued to teach. 

But then I went off sick.

The GP we'd seen who recommended tests, referred me to have three scans under three different medical teams, these were, heart, lungs and kidneys. The appointments came fairly quickly. Scans were either CT scans or MRI scans. 

Katy went to the Bologna Book Fair on 23 March. I had been officially sick for 8 days when she left.

At home I went ON GUARD!

I started spending the night sitting up in an armchair in the sitting room. I was on guard twenty four hours a day. Seven days a week. On guard against an unseen enemy. I was a body knotted in anxiety and stress. I couldn't relax for one moment. And yet the invisible enemy was upon me. Destroying whatever it could of me. It was absolutely awful. I was defenceless! I was powerless!

I was on guard for weeks. Always watchful. Drifting into a few moments of sleep here and there. By this time I wasn't eating.

And then one morning in mid May, my left stump was covered in purple patches. We knew exactly what this was. This was vasculitis! We'd seen it before in 2004. And I'd known it from the 1970's & early 80's. It's a symptom of Polyarteritis Nodosa.

Untreated we knew these purple patches would become ulcers and attack the stump. In 2004 vasculitis resulted in the amputation of both my legs. The left leg amputated above the knee, the right, amputated below the knee.

And of course, when we saw the purple patches, we immediately tried to contact Prof Kiely. But he was away.

Meanwhile the GP's heart scan showed an enlarged aorta. But this was normal. They'd check it again in a year or two.

We can't remember anything about the lung scan. But whatever they found they considered wasn't causing me any harm.

At Kingston Hospital

We had to wait a bit for the third scan. A kidney scan. And wait a bit longer for the results. When we did see the consultant urologist at Kingston Hospital, he said that I had kidney cancer. He said he'd need to remove the whole kidney. He said once it was removed everything would be alright. I wouldn't need any further treatment.

And then we told him about the vasculitis. 

By the time we had this consultation - with the consultant urologist -  the vasculitis was all over the left leg. It was early days. There were purple patches. No signs of ulcers yet.

He had a look at the leg and said he wouldn't operate until the vasculitis was all sorted out.

We needed to consult with Prof Kiely again.

Despite Prof Kiely being on holiday, we had the first of several phone consultations. But he didn't change his mind about his idea that the something else was causing the illness. Instead he said the cause of the vasculitis was due to the cancer. He said get rid of the cancer and the vasculitis would go away. He told us to go back to the consultant urologist and tell him to remove the kidney as soon as possible!

So with the support of one of the GP team at our local surgery and a rheumatologist at St Thomas's hospital it was decided to remove the kidney. 

By this point the ulcers were getting significantly worse. Right from the start, the ulcers were not being treated at all. This was a deliberate policy set by Prof Kiely. The medication needed to treat the vasculitis would inhibit healing the cancer. As well as this, Prof Kiely was sure that - with the cancer removed -  my body would heal the vasculitis by itself. The cancerous right kidney was eventually removed at Kingston Hospital in July. 

But the vasculitis continued.

I was ready to be discharged by the urology team at Kingston hospital but the ulcers on my legs were still progressing. We've got photographs of the progress of these ulcers from early on. I'm not going to share them with you though. The ulcers were so shocking!

Just before I left Kingston hospital, we did see a rheumatologist. He recommended a biopsy of the ulcers. But the urology team at Kingston were only interested in the cancer. And they discharged me. Eventually an appointment came for a biopsy. When we went for the biopsy the doctor at Queen Mary's hospital, Roehampton. was so shocked by the ulcers he told us to go to St George's immediately. He said St George's hospital is the place where the ulcers could be treated properly. He said the best and quickest way this could be done is if we went to A&E.

At St George's Hospital

So we drove to St George's hospital A&E. 

That was one of worst experiences we had during this time.

We arrived at around 4.00 in the afternoon and joined the queue to be seen. First by a nurse and then by a doctor. I sat in the wheelchair. Katy sat in a chair. 

We waited. We waited! And we waited! And waited!

At some point in the middle of the night we were moved to another part of the A&E department. It was quieter. There were fewer people. There were curtains. There was a bed. There was a chair. We were told we were being admitted to the hospital but were waiting for a bed to be freed up. 

We realised that wasn't going to happen for hours yet. And so we waited and were admitted onto a vascular ward later that morning.

At first I was admitted into an 8 bed bay. It was noisy. It's difficult managing 8 bored and very unwell men. So I was pleased that one day I was transferred into a single bay.

And then one day one of the rheumatology team said that the ulcers were so bad on the right leg the only way forward was to amputate the knee. 

And that is exactly what they did at St George's hospital at the end of August.