Bad News

I have been sending emails and posting blogs containing pretty bad news for the last couple of years, but I never thought I’d have to send one this extreme. Some of you know all of this already, so I apologise for the repetition. On Wednesday we went to see my Neurologist for a tumour grading and were informed that I have a Glioblastoma Multiforme (GBM) in my spine. A quick Google check will show you that it is the worst and most aggressive type of tumour. There is no cure for it but I will undergo radiotherapy and chemotherapy next week for six weeks and take it from there. The average life expectancy is around 12 months. GBM’s are primarily brain tumours but I am one of a handful of people who have it in my spine which makes it harder to treat as they can’t excise something that is so big in the spinal cord. Given that I have lived with this tumour for so long it is assumed that it was a lower grade tumour that has since upgraded itself recently.  It is the first upgrade I have ever got but not one I really want. I will be treated at the Royal Marsden Hospital in Sutton. We were really impressed with them and I had brought a lot of information with me about new treatments and my consultant was aware of all of them and talked me through the best course of action. There is alternative immunotherapy treatment available in Belgium that I am looking into and my family found out about a Swiss doctor, Stupp, who has dealt with thousands of glioblastomas. My consultant says that the Stupp treatment has improved life expectancy and the Stupp Protocol is what I will be following where Radio and Chemo drugs are administered at the same time. So the next six weeks will determine how this pans out. I have a huge amount of testing and MRI and CT scans to undergo before I start the treatment on the 25th so that is keeping me busy. Some of you have been sending me information about weird and wonderful treatments as well as a bit of snake oil salesman information, but hey I have nothing to lose. So I will try the magical Ecuadorian crystals, salamander sweat rub and deranged Sangomas in due course. I will see how the treatment goes and if it doesn’t affect me too much I will try and go back to work to get my mind off things but at the moment I am recovering from the surgery. Removing the stitches was fun, took over an hour and the nurse looked like she needed a holiday afterwards. Otherwise we are keeping positive and trying to get our heads around this. Jay is really helping hugely and we are both pretty resilient people and will give it a good fight,

The human zip lock bag

This is the human version of a back pack. Once this has healed up a bit then I can crack on with therapy.

It is a lot bigger than the biopsy before in 2008.

You'd think they'd be able to identify a tumour if it takes up half of my back but anyway.

Is it a plane? Is it superman? No it's a tumour...Do'h

Hi everyone,   If you have already received all of this sorry. I can't keep up with the amount of texts and facebook messages I have been sending out and receiving.   Anyway I have been having some medical issues that culuminated in me having surgery on the 28/02/2011 to biopsy whatever is growing in my spine. I was then told on 5/03/2011 that I have a spinal tumour that needs some kind of radiotherapy treatment.   They don't know what grade of tumour I have. They are graded from 1 through to 4. Because mine is growing it is more than a 1 and because I am still breathing probably not a 4 but that is as much as I know. So at least they have made a diagnosis, which is more than was achieved over the last 2 and a half years.   I left hospital last night to come home - I am ok apart from the wound on my back that looks like something from a horror movie. I am pretty exhausted but am a lot more comfortable at home.   Once the wound has healed a bit, the stitches have come out and I am feeling a bit better then I will start undergoing radiotherapy for six weeks. This is to try and reduce the size of the tumour and stop it from causing further damage or growing. The treatment will be 5 times a week and I haven't met with the oncologists yet so I don't the exact details of where and when this will take place.   So basically we are still not completely sure of the situation until the radiotherapy treatment has started. Hopefully it will zap the little bugger and that will be the end of it. Now if that doesn't work then they may have to excise the whole thing which would be risky given the size of it. So basically the next couple of months will define how this all ends up for us.   Thanks again for all of your support and messages as always. You are always know who your mates are when things are tough. I think I am going to have a 24 hour nap now...