Spinal Viral: Bad News

Wednesday 16 March 2011

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 25^th 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,

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Time Line

January 2015 Finally Out of bed after over a year with a pressure sore
25th October 2013 Finally able to come home. Pressure sore at the top of my thigh is healing slowly but still need to stay in bed full time. Hopefully out of bed by Christmas!
10th October 2013 Return to the Hospice. Temperature goes up again the next day so start another dose of IV antibiotics for 7 days at the Hospice
3rd October Temperature goes up again so sent back to St Georges and re-admitted to the Accute Care ward for another week. Different antibiotics used and more tests done to diagnose infection
2nd October 2013 Discharged from ICU and go back to stay at the Hospice
23rd September 2013 Develop a sever temperature. Go into septic shock and admitted into ICU for a week. Infection treated but doctors are not sure what caused it.
September 2013 Maggot dressings used for about two weeks - most of the necrotic tissue is cleared. Start using vacuum dressing to promote tissue growth
4th August 2013 Have to stay in bed full time to keep pressure off the sore. Wound has to be dressed daily to clear out necrotic tissue
2nd August 2013 As thigh was so swollen I develop a massive pressure sore at the top of my left thigh
July/August 2013 My mom and sister, Ali and Kim come and visit from Australia for three weeks
22nd July 2013 MRI results again show no change to the tumour size so only need to be scanned in 6 months time
15th July 2013 Dermatologist finally figures out that I have developed Psoriasis and Psoriatic arthritis which has been causing all the skin issues and arm pain
June 2013 Chest and arms red and peeling and arm pain continues
6th June 2013 Stay in A&E for the night as my left thigh was very swollen. They find a blood clot so I begin daily blood thinner injections.
May 2013 My face begins peeling and continues to peel for the whole month. Unbearable.
April 2013 Steriods reduced to 0.5mg
15th April 2013 MRI shows no new tumour growth so good news in that regard again
28th March 2013 Visit to A&E for sever wrist pain. Xray came back clear so not sure what is causing the pain
March 2013 Sheared skin off the back of my legs and sacrum due to arm weakness when transferring. More sores to dress...
15th February 2013 Vacuum dressing put onto my ankle wound
February 2013 Steriods reduced to 1.5mg
January 2013 Skin itching and face rash continues
December 2012 The wound on my ankle is still not healing. Started using compression bandages to try and help
November 2012 Incessant itching of skin begins and the redness makes me look like Dr.Zoidberg.
October 2012 Steriods reduced to 2.5mg
October 2012 Good news is that MRI shows the tumour has remained the same
22nd August 2012 one less nut on my person. Surgery at St.Georges
4th - 5th August 2012 my mother undertakes a 135km ride in the blistering heat of Queensland. Thanks for everything team Rowell.
5th August 2012 365 days still alive and twitching, so much for predictions,,,,
22nd July 2012 back in the UK
5th May Steroids reduced to 6mg. My head still hasn't exploded
30th March - 14th April 2012. Quick little 2000km trip from Mooi River to Harare via Bulawayo and back.
13th April 2012 Granny Jon passes away.
21st March 2012 Steroids to 8mg.
12th June 2012 One Year Wedding Anniversary
11th November 2011 eventually take my next round of chemo about 6 weeks late, after much drama trying to source it in Bots
11th August 2011 second line PCV chemotherapy started. 10 day treatment, every six weeks
5th August 2011 MRI scan showed tumour progression and told the first type of chemo is not working
May - August 2011 Ongoing Chemo treatment every four weeks
March - May 2011 Radiotherapy and Chemotherapy at Royal Marseden, Sutton
16th February 2011 diagnosed with Glioblastoma
February 2011 after increased spinal pain back in hospital and biopsy performed
June 2009 - February 2011 back to work and study
January 2009 discharged from hospital still undiagnosed
November 2008 back to Stanmore
October 2008 admitted Queens Square for further testing
21st August 2008 admitted Stanmore Rehabilitation Unit
18th July 2008 biopsy performed without a diagnosis.
12th July 2008 admitted St. Georges

Why bother with a blog?

Firstly, this is my attempt to give people news without having to respond to hundreds of emails.

Secondly, I am a grumpy sod and in the spirit of Peter Griffin I need to tell the world what really grinds my gears and get things off my chest.

And finally, the most telling reason is this: I was working full time and studying before the shit hit the fan in February. Now I have a few months until I go back to work and I can't watch daytime TV or risk further damaging my fingers playing excessive amounts of PlayStation.

Please support my cousins

My cousins Ross and George are running half-marathons and marathons to raise money for two charities that are pretty close to my heart. Like most friends and family, they felt helpless about my predicament. They decided that the best thing to was raise money for the wonderful charities that exist to help people who need it the most. Ross and George are young guys in their twenties who should be spending their weekends getting up to no good, but instead are pounding the pavement.

Aspire is a charity that supports people with spinal cord injuries. Over 1,200 people are paralysed each year and are faced with the mental and physical challenge of becoming full time wheelchair users. Not everyone is lucky enough to have a wife, family and friends like I do. Some people are discharged from Spinal Units across the country with no support, no money and become homeless. One guy in hospital was discharged back to his mother's flat, which was a flat on the third floor. He was carried up the stairs and didn't come down for a few months. Hospital transport would refuse to carry him down the steps so he had to crawl down the stairs just to leave the house. His independence was compromised in a way that is hard to imagine. Unfortunately, having had the misfortune to share a hospital ward with him for a few months I can confirm he was an arsehole of epic proprtions but no-one deserves treatment like that. So Aspire heard about him and he was provided with temporarty accommodation until he found somewhere suitable to live. See www.aspire.org.uk

The second charity they are raising funds for is Macmillan Cancer Support. The irrefutable truth about cancer is that we all know of people who have died from cancer, are currently suffering from cancer or are currently undergoing treatment. Macmillan Cancer Support not only provides support for sufferers but also their family and supporters. I met a woman who was caring for her sick husband and hadn't had the opportunity to go for a coffee or a walk for 3 years. Macmillan now provides a carer for her to have 3 hours off to do what she wants and more importantly, give her some time for herself. So as well as practical support they also provide medical, and financial support. See www.macmillan.org.uk for more info.

So to cut a long story short, if you feel like doing something positive have a look at what Ross and George are doing and please contribute if you can, or if you see one of those perpetually stoned, long haired charity vultures raising money outside your local shopping centre please give them some change.

Spinal Viral

Wednesday 16 March 2011

Bad News

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