Have you seen your dad Cry….

SO !!!!!!! its been a while since I wrote a blog , but it has been full on crazy since my re diagnosis of a grade 4 Glioblastoma Multiforme (GBM4) Tumour. (The terminator as its known in the medical worlds.)

So what has prompted me to write ……… This morning at 06.30 on Friday 15th January 2016 my Children found me in the dark downstairs……head in hands, crying.
I was mortified when I realised they were with me. You don’t see your parents cry. They are your rocks , your stability, that beacon of hope super heros  or should be.
I have only seen my dad cry once in my life, when I was probably Josh’s age 10ish . That time I can recall, with the up most clarity and detail. It is still a strong memory in my mind.
This is not a memory I wanted my children to have of me. Weak , vulnerable , powerless in my fight against cancer.
Both Joshua and Halle sat there in the dark , I could feel there gaze on me with worry, as I tried to hold in my tears. But this made me worse and I couldn’t hold it , tears streamed down my face ,as It just came out. I began to sob. I could hear Josh whispering to the dogs to leave me alone, as both jumped up at me. I looked up drying my eyes . Both looked at me horrified as though “WHAT’S HAPPENED TO MY DAD”
I quickly scooped them both up and hugged them telling them, how much i love them and that  I was fine, not to worry. Sometimes I just fed up of being ill. I composed myself and told them i was just being silly . After this both ran up stairs to sam. What I didn’t realise was, that both of them were crying now.
Sam’s first reaction, she told me was “WHY HAVE YOU BEEN TOLD OFF”

So what lead me to be sat in the dark head in hands , sobbing the world away.

Well 2 days ago I finished cycle 3 of 6, on my chemotherapy, a lot of you will know the struggles I have had with chemotherapy via my Facebook page. If not…….

Following my second Brain surgery at only 34years (yes you are all jealous). Which lead to the diagnosis that Terry had transformed into The Terminator (GBM 4).

I was left with a decision to make .

One I categorically said I would not undertake .

Usually I want to know everything, life prognosis the lot, but not that day. But if I’m being honest, I already new. I research everything
Now this may shock some people but…My diagnosis had left me staring down the barrel of 3 months to live without the standard ‘GOLD TREATMENT’ as it was explained to me. Which in the western world is chemo and radiotherapy.

Even with this I was looking at 12 months!!!!!! But lets be clear of something very quickly….thats something I DO NOT ACCEPT OR BELIEVE.

I was once told I’d never walk again back in 2004 and I went on to become a world kickboxing champion in ITALY for GB at the worlds in 2009. So I tend not to follow the trend or be the average statistic.
As I have alluded to in my last blog , during the scan results of the new presentation of Terry the terminator, I ranted at my amazing Walton Team, that I will not have chemotherapy and radio……..Well guess what??? until you are in that position, starring at that prognosis, with a young family, YOU!!!! have no idea what you will do and I wasn’t prepared to gamble on the natural route.
I’ve had many people say “THAT TREATMENT WILL KILL YOU, I WOULD NEVER HAVE IT” If only life was so black and white ……..hey.
Sorry I’ve gone off on a tangent.

I made the choice to engage in the ‘GOLD STANDARD’ western medicine to give me time, to then implement other changes and eventually rely on the natural route.
So I started 6 weeks of duel concurrent treatment of Radiotherapy and Chemotherapy. Lasting for 6 weeks. This was at the Brilliant Clatterbridge cancer centre (CCC).
I had 150mg of Temozolomide (chemo) every single day, usually 20mins before my radiotherapy which was Monday-Friday.

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I hated radiotherapy.

I am so glad I can never have it again. But in my last week, I became unwell and I suppose ….…… ‘MELTED DOWN’ . Im not sure many people know this.

I wont go into it to much, but it involved me stood in my close, spinning around shouting all sorts of rubbish to the sky (I can laugh at it know and I’d of sectioned myself if I was a police officer turning up. not knowing the circumstances lol)

But jokes aside, I scared sam and brought back the original day this whole Journey started on1st may 2014. Something I still feel guilty for and probably always will.

I spent a couple of days on a day ward in Arrowe Park hospital. I was treated dreadful and made to feel insane by some staff (won’t go into it now). But!!!!! there were 2 rays of light. Allan a neuro-oncology nurse part of the CCC, but based at Arrowe and a health care assistant called Luv(not sure how you spell her name). They were a real comfort and if it wasn’t for them, I wouldn’t of got out of there as i began to doubt my own sanity.

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I was released to my mums for total bed rest. The episode was put down to being on medical steroids for to long , dehydration, fatigue, radiation and extreme exhaustion.
I still completed all the treatment though. #ItsWhatIdo
After a 4 week break it was back to Chemotherapy.

Cycle 1-300mg of Temozolomide with Ondansetron/ Cyclozine, which are both Anti sickness. All was well until the day after I finished my 5 days of Chemo. I began to be sick about 9pm. Unfortunately this continued every 20-30mins, till I gave up at 0930am the next day Took  advice from CCC I was admitted into Hospital for fluids , bloods and intravenous anti sickness, which worked instantly.

Cycle 2 – 380mg of Temozolomide a 30% increase in dose. I didn’t think much to it until the pharmacist said , “THATS ONE HELL OF A DOSE YOU ARE ON” Thanks !!!!
This time I couldn’t complete the treatment and after day four’s dose, I began vomiting. I refused to go to hospital and rode the next few days out . CCC told me not to take the final days dose.

This eventually brings me up to to Cycle 3, the one I have just completed .
This was dose was back to 300mg, but as we discussed things in the meeting, I became slightly annoyed, as they had put me back on 8mg Steroids (DEX) again,Bloody 8mg from none. I melted down off 4mg. this was in a bid to stop me being sick this time.
As I argued that I would rather be sick, than go back on them. 
Dr Husband explained that I need to go on them only for 5 days of chemothearpy, then I can come straight off them. This is because they work in conjunction, with a new anti sickness I was being put on, APREPITANT.
Apparently this is the strongest stuff you can have and not given to patients who have tablet form Chemo (Temozolomide) like myself.
He then gave a parting shot of…. “THIS SHOULD BE INTERESTING I’VE NEVER GIVEN THIS TO SOMEONE ON YOUR CHEMOTHERAPY , LETS SEE WHAT HAPPENS” Great I’m a guinea pig again.

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Days 1-3 were fine days 4 -5 I felt drained , no energy, or get up and go. Positive Dave had started to be suppressed.
Day 6 no chemotherapy , but those who are unlucky enough to go through this, know you don’t suddenly feel better. It stays working in your system. I actually felt worse the day after. But this time I had no Nausea or vomitting .
Que this morning!!!!!!! Day 7 I thought I would have woke up feeling much better, but instead I bolted out of bed and raced to the toilet. As I began to wretch, sweat poured from my head “NOOOOOOOOOOOOOOOO NOT NAUSEA” I thought. As I began to panic, I realised I was making myself worse. I managed not to be sick and went down stairs . I put my iPod and headphones on to take my mind off my stomach. A song came on that I identify with so much “EVERYWHERE I GO” by Lissie , which I had stumbled across in my hospital bed at Walton. For me its such a haunting song ,listening to the words, which I just relate to.
As I sat there feeling sorry for myself, because as I still wasn’t well, I began to reflect on the passed 2 years and everything that had happened.
I’d had enough , its been relentless , certainly since July 15 , my thoughts moved to my children’s childhood. Their up bringing is, MY ILLNESS!!! being sat in  hospitals, passed from pillar to post. Thats why I was sat there in the dark, sobbing at 0630 this morning.
So to wrap up (sorry it wasn’t supposed to be this long ) as I’ve sat here writing my feelings and thoughts down , headphones on.
I realise Its been a rough few years. But I maybe unlucky at the moment in health but I am truly lucky with the family, friends and support network I have. There are people out there going through similar situations with no one …..

I have also had a great 2 years and embarked and seen many things,met and forge great friendships that I wouldn’t of, if I hadn’t been diagnosed with this disgusting disease.

My children have a great life and have experienced so much that others don’t.

Although this has been a testing , hard, horrific year!!!!
There have been many Highs for me and my family, a Holiday in Egypt, a trip to Portugal, and a stag doo blow out in Amsterdam.
I retired from the Police as a Sergeant, after 14years enjoyable service.
Qualified as a Professional strength and Conditioning coach and as I do with most things excelled.
One of my best mates got married to his amazing wife and had their first child a girl Emily ( they refused to call her davina) My sister (rock) became pregnant again with her 3rd, Sam and I were VIP guests of Underarmour, to the Rugby world cup, where I met Kevin Plank the owner, with a net worth 4 billion. Such a nice guy and he gave me the keys to the door to his company, thanks to him but more importantly Tony.Awesome weekend that will never be forgotten. I also had the annual lads weekend to the 6 Nations, to see ENG v FRA , what a day and game . The amazing circus of Pull Ups To Paris and opening my friends Gym at The Underground Training station.
I struggled with guilt at the beginning of all this. Guilt for getting gifts and experiences, but I now choose to help people who had helped me with them. Especially when I was able to give a once in a lifetime weekend to a close friend and his wonderful family.
I bought a Campervan. Even though I will never probably be able to drive again.
We gained 2 new family members in the forms of miniature Dachshunds . Roxy & Oreo!!!!

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My son getting wirral’s RFU U10s rugby player last season.
My daughter started rugby at wirral where she takes after her dad and brother, as she is a try scoring machine. Both go to Free running at the brilliant Airborne Academy .
But most of all…… I’m here with them. As I’ve said before, I used to work 12- 16hr days and missed so much .
Not anymore, time to sit back and enjoy my Retirement.
And on that much happier note, I feel great and off to watch the new film “CREED” with my mate nick.
xx Behind every dark cloud the sun still shines Bright xx

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One response

  1. Your bravery and honesty is impressive. What a cruel disease this is and you are battling it so well. I personally feel it’s good to share your feelings and nightmare experiences with others,it’s like you’re offloading your grief,frustration,anger and every other emotion that comes to mind. Keep fighting xx Kathy Rae

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