An inspiration...

Results update - Saturday October 2nd 2010

Well I said I would write more this weekend so here goes. This is probably the most difficult post I have ever written, it seems to be usual for me of late, there's been a lot of difficult things for me to do and times for me
to endure over the past month, I have got through each of them in no small part due to the love and support of those around me which includes those friends Mark, (Bobbie Dazzler) and I have online, some we have never met and others we rarely see.

If you've been following you will know I was admitted to hospital 8th September following the discovery of a growth behind my left eye. On 15th Sept I was diagnosed with a brain tumor and on 22nd I underwent major brain surgery to have it removed. Following removal the diseased tissue has been analysed and I was invited to the hospital this week to learn the results on Weds 29th Sept.

The anticipation of Wednesdays result has been very stressful for both Mark and I, the uncertainty, the fear and the simple "what if" when your mind thinks of what this could be.

On Wednesday my worst fears came true. I have been diagnosed with a fairly rare form of Brain Tumor, a Glioblastoma Multiforme (GBM) or Grade 4 brain Tumor. It's malignant and very aggressive, there is no cure and my condition is terminal. The prognosis is not good. I can't begin to explain how this has shattered our world and that of those around us.

Many of you will have seen facebook updates from Mark (Bobbie Dazzler) advising we have now retired from stage, with just a few exceptions we have been overwhelmed by messages of support and good wishes. This post will probably explain those posts more clearly.

We have not posted this before as My parents have been abroad and were not aware of my condition, I wanted to see them and tell them personally before they found out from those around us and them.

I will receive treatment which will commence within 3 or 4 weeks, I will receive radiotherapy and chemotherapy on a daily basis, this cannot cure me but may help extend the time I have by fighting off the disease a little
longer.

I am sorry that this may make uncomfortable reading, it's not nice to write either but, I don't want people to make their own assumptions or guesses and don't need an outpouring of pity, I want to enjoy the time I have. In saying that I am really encouraged and touched by the messages received for both Me and Mark, they really mean a lot.

I will update more in the next few days, please keep reading, it's nice knowing you're out there.
Xxx Steve - Enid Whiplash

Mark Says...

It's difficult looking back as it is so true and honest that it brings back all those emotions that we felt back then.

When we got the results we were numb. We walked the short distance home and what would usually take a few minutes seemed to take hours.

After sobbing uncontrolably at home in each others arms for half an hour or so Steve, being ever practical, got on with thevacuuming that he had started before he left for the hospital.

Keeping it all a 'secret' from his Mum and Dad who were away on holiday for a further three days was incredibly difficult but, it gave us a few days to adjust to the news.

Sitting in front of Steve's parents and explaining how their little boy had been given 12 to 18 months to live was the most difficult thing I had ever done in my life up to that point.

That diagnosis marked the start of a new chapter in my relationship with Steve. We became even closer than we had already been and I became his right hand man, standing up for him and supporting him whenever he needed me.

Sunshine - Monday 4th October 2010

Somebody somewhere is smiling on me. I decided yesterday that today was going to be the first day of the rest of my life.

If I think I want to do that I am going to do it, if I want to buy and wear a big floppy hat, then that's what I am going to do.

Today I woke up to a nice frosty morning with clear blue skies. Something I love.

There is only one way from here and that's onwards and upwards.

Right Walking boots on, we got places to go, people to see, and mischief to cause along the way, who's coming with me, the more the merrier.

Steve x

Mark Says...

When I got home that afternoon from work Steve was SO excited. Since we had been together he had never known where his brith certificate was but, he knew it was somewhere safe.

That day, sorting through some old papers he found his birth certificate, he took it as a sign, a sign that Monday 4th October was indeed the start or birth of the rest of his life.

Just 9 months on he passed away, significant or a coincidence? Who knows.

Back to normal - Thursday 20th January 2011

Well today was my return to the office world in a normal state.

I managed to work in the office 9.30am till 4, I will admit I was tired, but I loved every minute of it. Its the biggest step I have taken in the last couple of months to getting some kind of normality and structure back in my life. Yes I have been normal at home and such but returning to work is a big change for me, as working from home doesn't appear too have made much of an impact, just serving to occupy my mind whilst at home.

It was great to be back in the office and immediately fall into the role that I left over 4 months ago, and the whole team just carried on as normal, they even pestered me to do little bits, which is just like old times.....

I had the discussion with my boss about returning and the are happy for meto do it as and how I can.

My hair is still trying to grow back slowly but surely and everyone that strokes my head says its bristly and definitely some re-growth there, its thicker on the right and back than on the left where I had the Radio
therapy, but its at least a start, let's just hope that it doesn't grow back ginger or curly, otherwise it will be funky hair colours, head shaving etc for me going forward.

Anyway, I'm off to bed my legs are aching today, something I haven't seen for a couple of days, it comes and goes but something I have to put up with. Its probably the fact I have been continuously sat at my desk today and I haven't been walking round, will have to ensure that when I do go to the office I walk around etc to keep my legs going, it works at home so it should work in the office.

Night all

Steve x

PS someone again said today that I am an inspiration, all I will say is I'm no more special that anyone, I'm just a normal person that has had some really crappy news, and has taken one of the only two decisions I had, sit back and let this illness consume me or stand up and fight and see where it gets me. I chose to stand and fight, stay positive and keep on going. If I can encourage other people in the same situation to do the same then that's brilliant.

Positivity, love and a bloody stubborn determination to keep going is my new philosophy, if anyone else wants to share it then its free for the taking, I hope it stands you in as much good stead as it appears to be doing me

Mark Says...

It seems odd, and many people would not understand but Steve was SO excited about going back to work . It wasn't the work particularly but the feeling of being with friends and having a 'normal' life.

Throughout Steve's journey he has appreciated being treated 'as normal' and I had to fight his corner for him on many an occasion when people told him he can't or shouldn't do something.

I would ask him what HE wanted and, not just give in to him like a spoilt child but I would discuss with him as an adult the parameters of his abilities as opposed to his desires.

We would reach a compromise, for example with work, I wasn't comfortable with him pushing himself to full time straight away, he pushed his luck initially though but, after this first day he realised and accepted that my suggestion to work 10.00am - 3.00pm was much more achievable and realistic and only for one or two days a week.

I backed him in front of friends and family who thought he might over-do it. I trusted him to know his limits and stood up for him, he was grateful of the support and the chance to be 'normal' again and he continued to be honest with me about how he was coping as he knew I would be there to support him and HIS decisions.