Our NHS charter: Come in sick and leave sicker

Hello people

I hope this finds you all well. Thanks for all the messages while I was in hospital.

When I last left you we were in the middle of our trip to Scotland. The doctors had just told me that my disease progression had accelerated and I needed immediate chemotherapy. We had already booked a holiday and were told it would be a good idea to just go on our trip, as the future was a bit murky.

So after a quick 10 hour drive we spent 10 wonderful days in Edinburgh, Lochgilphead and Stirling. It was well worth the trip, but was very painful and uncomfortable. I started my therapy the the day after we returned and was pretty sick from the begining and was suffering from severe sweats and pain throughout.

Unfortunately all of these symptoms culminated in a trip to A&E at St. Georges Hospital for 3 days with a suspected infection and severe vomiting. They scanned me and thought the IV antibioics were causing the technicolour yawns so kept changing them. They discharged me and I came home and promptly got worse the next day. I couldn't speak and was totally disorientated and was rushed to hospital, where CT scans showed there was pressure on my brain. This is called hydrocephalus and isnt't a good sign. Google it, if you have the energy.

This pressure is caused by excess spinal fluid which is a result of the tumour growth, which in turn was causing the sickness and temporary madness.

I can just about cope with the pain and constant discomfort, but when your brain goes, then you start to worry. It is very strange knowing what you want to say, but being unable to say it coherently. They gave me a huge course of steroids to reduce the swelling and booked me in for a range of MRI scans.

The problem was that when I was admitted the second time, I was left on an A&E trolley for 12 hours during which I was in and out of conciousness. Because of this time spent on a flat hard surface and because I was on an MRI trolley for 3 hours a few day later, I now have pressure sores on my sacrum and I am now totally bedbound as the skin and flesh has broken down.

I spent nearly a year and a half stuck in bed with a Grade 4 pressure sore and managed to recover. We are so careful at home and on holiday,  but after a couple of days in hospital I now have a debalitating pressure sore. Being stuck in bed for that long last time was a form of mental disintergration I don't know if I can repeat, I am happy that it is already showing good signs of improvement thanks to the efforts of my darling pressure sore-whisperer wife. What a job, eh?

We are obviously upset and p**sed with us and the hospital for letting it happen, because I have to lie on my side to take pressure off my butt, which hurts a lot with this tumour. It also means I cannot get up and go anywhere or do anything for longer than a few hours. I also have to change position every few hours and this means Jay cannot get a break or even sleep properly.

On Monday we met up with the oncologists and they told us what the scans have shown.

There is now significant damage to the top of my spine and neck, as the disease has progressed considerably from the scan of 3/8 till the last one on 29/9.

I am now onto the last resort in terms of treatment. I have started Etoposide chemotherapy and we will see if that makes a difference. Side effects are bone marrow loss, hair loss and the usual infections, but I have no choice but to take my poison and hope for the best.

We have always known that this would come eventually, but it doesn't make it any easier. You have to roll with the punches and take each day as it comes. I meet the oncologists next Monday and I'll have a better idea whether the treatment is doing anything positive by then. My mom and sister are out here from Australia visiting us which is great and I am slowly getting my pain medication working for me, as I am have been so uncomfortable recently.

Thanks for all the messages as always and take care.