Hi,
My blog has been relocated to;
https://whatdoicallmybraintumourblog.wordpress.com
I want to thank Blogger for getting me started and giving me the initial platform to get my story out
This MRI of my brain was taken 10/4/14
The white area is odema (a build up of fluid in the body that causes swelling) caused by my tumour.
The brain has no pain receptors and feels no pain. The Meninges (brains protective layer) do have pain receptors and I was having brutal headaches as the swelling was pressing the Meninges agains the inside of my skull.
If swelling of the brain isn't addressed it can have very negative connotations, my worsening headaches was my body telling me to seek some help.
I was helping my eldest daughter clean her teeth before bedtime and without warning felt as though someone had stabbed me through the top of my head with a red hot poker, I don't have a point of reference for this, but it is the only way I can describe the pain I felt. I had to reach for the sink to stop myself collapsing on the floor and my vision was terrible for a few seconds, I righted myself assured my daughter I was ok, grabbed an handful of paracetamol tucked her in to bed and turned myself in as well.
I had a persistent dull headache and was getting through the day on a Paracetamol/Ibruprofen cocktail. My GP was convinced I was having migraines, the relief medication was making no difference. My surgeon was surprised she missed the swelling behind my eyes (I'm not kicking the NHS they have saved my life twice).
In defence of my GP she cannot send every otherwise healthy 36 year old male who is having debilitating headaches for a CT scan.
My surgeon was genuinely angry and so am I with the optician who examined me. I am the only member of my immediate family who doesn't wear glasses, so I figured the headaches could be my eyesight failing and took myself for an eye test. I was prescribed glasses for long sightless in my left eye. A thorough eye examination would have identified the swelling and the optician should have referred me to A&E. I was subsequently refunded the cost of the glasses but not the cost of the consultation.
This post is getting quite long, so I'll try and wrap it up. I had been traveling with work, I felt nauseas at the gate and when I boarded the orange no frills plane was imedialey sick in the forward toilet putting it out of service. The stewardess who came to help me could have thrown me off the plane, but helped clean me up and let me take my seat (I feel for the passenger sat next to me sorry for 1.5hours of stinking hell).
The stewardess keep bring me napkins all of ice for my headache and told me to go see my GP when I got home. The water from the ice ran down my back and collected in the seat of my trousers, when I left the plane and was stumbling through arrivals I must have looked a pretty sight
Home, shower, bed. My wife found me in the foetal position crying and called 111, they advised my local minor injuries unit so she drove me over.
I got out of the car and stumbled around like a drunk, by now I couldn't speak and was vomiting everywhere, I can remember being shouted at for throwing up in the foyer. Fair enough they probably thought I was a daytime lush. I passed out and woke up in Frenchay hospital A&E.
Thank you EasyJet for getting me home, I'd have been in an excellent Swiss hospital, stranded from my family.
More to follow. I'll be back next weekend.
Last Tuesday I finished round two of my Chemo Chameleon, sounds much less daunting than Chemo Therapy. I have a friend who is fighting this evil disease and he has helped me to ridicule my cancer, laughing at this evil shit helps with the Fuck You Cancer attitude. We've both finished courses of Radio Gaga this year.
Cancer, the big leveller, the evil bastard doesn't care about ethnic origin, gender, religious beliefs, age (4,000 children and young people diagnosed every year in the UK, you evil fuck)
Chemo Chameleon brings some perspective to the problem, you know things aren't going so well when you have the Chemo discussion and sign the consent form.
To quote my cousin (who gave me the confidence to begin this blog)
'Chemo is brutal and horrid. I hope you're one of those people who just sails through.'
I'm doing ok, so far side effects haven't fully kicked in.
Fortunately my Chemo is tablet based so I don't need to go to the hospital for my treatment, much better for the life, work, cancer balance.
The Chemo Chameleon regime isn't so complicated;
05:30 alarm
Anti-emetic to make sure I don't thrown the Chemo up before it's been absorbed into my blood stream.
Doze for 30mins
06:00
350mg temozolomide. The tablets are in little foil
packets like this one;
I have to cut it open carefully and drop the tablet into a pot. You can't touch the tablets, its like changing a halogen light bulb, until you tip it in your mouth and swallow (kids don't eat light bulbs it's not so bright).
I was taking two tablets 250mg and 100mg.
I can't eat for an hour.
Repeat for 5 days and then 23 days off for good behaviour and go again. Four 28 day cycles to go.....
Epilepsy: my bonus brain tumour extra!
A dose of Partial Epilepsy is a nice side effect to growing a brain tumour.
Lucky boy, could have been generalised
epilepsy. Partial seizures (a minute or so) where I
remain conscious and can continue functioning vs
Generalised (Tonic-clonic) seizures that impair
consciousness, think 'epileptic fit'.
I've had one tonic-clonic scared the shit out of my wife.
More details another day.
Alongside my Chemo Chameleon, I have to take anti-seizure meds everyday. Much simpler regime, less likely to fuck this one up.
Yes I have screwed my Chemo up once, a 10% failure rate, great work Steve not like this shit is really important...
Its early when I take my meds, we'd been away for a funeral and everyone (except the dog, he stayed with my Mother In Law) is sharing the same hotel room, the beautiful 2.5 year old didn't sleep. I managed the 05:30 anti-emetic, but at 06:00 I took two 250mg tablets, as punishment I felt really awful most of the day.
Monday morning I realise I don't have a 250mg for Tuesday only two 100mg, massive panic on my part, call the hospital to explain my fuck up, my Oncologist tells me it'll be ok (he's been quite seriously wrong in the past for another day) as the dose for the cycle will be competed.
Managed to inadvertently fumble rather than drop the ball, won one!
Daily Lamotrigine regime for seizure control;
07:00
Lamotrigine 175mg
19:00
175mg Lamotrigine.
A twice daily reminder 365 days a year that I'm really sick :)
For 5 days of every month if you shake me I rattle like a pill bottle
F.E.A.R.
So we know I'm Steve, I've got a family, 1 wife (beautiful, considerate, patient), 2 kids (awesome) dog (springer spaniel, mad as a box of frogs), great job.
Fear;
- An unpleasant emotion caused by the threat of danger, pain, or harm
- A feeling of anxiety concerning the outcome of something
My life should be as good as it gets, unfortunatley the Fly in the
ointment is I grew mysElf a brAin tumouR.
My brain tumour was discovered April 2014 (details to follow at a later date), it didn't sCare me until 25th JAnuary 2017 when my NeurosurgeoN Called mE at 21:00 and used the woRd 'inoperable'. That was the first time this shit became real.
I didn't fear my tumour in April '14 I don't fear it now in June '17. I'm Fucking pissed off with it, damm thIng will sTop me seeing my girls grow up and more importantly won't allow me to guide my girls and support them as they grow and develop into young women.
While they are young I'll do my best superman impression, the braIn tumour will wiN, it'll get very dark and there iS no happy ending. I want to inspire them to battle though dark times in their own lives, because when they were little their dad gave it everything he could for them and his family.
FANTASTIC
Everyday I get to spend with my family and friends
while I'm still as good as I am today.
(21st June 2017 at time of writing)
Fuck You Cancer!
My FYC attitude is in pretty good shape at the moment.
Expectation;
- A belief that something will happen or be the case
I exPect my brain tumOur to win the war, with the help of the NHS, friends and family, I'll win battles along the way. I'll do iT all wIth a smile on my face, liVing my lifE as normally as I can for as long as I can.
I expected to grow old and grEy with the most amazing womaN I have ever met, I'm really fucking pissEd with my tumouR for takinG this awaY from us.
June '14 my oncologist told me tHey Expected to get a good 10-20 years out of me. Giving me a mean Life exPectancy of around 15 yearS, with a likely intervention between 8 -10 years.
We are intervening within 3 years so my expectation of circa 15 years is likely dashed.
Bit of a blow :)
There is a lot of guesswork. How long this runs for will be effected by how I respond to treatments and which treatments they can offer me.
You also have to factor in some luck, if the original prognosis had been 15-20 months we wouldn't be having this conversation.
My heart goes out to those patients and families whose prognosis is given in months and not years.
Anger;
- A powerful feeling of annoyance, displeasure, or hostility.
Acceptance;
- Recognising a condition without attempting to change it or protest it.
I know there is only 1 A in FEAR, I needed 2 and it's my story
Why me? What did I do? What didn’t I do? What could I have done differently to prevent this?
Are likely common questions for anyone with a chronic illness and in particular anyone suffering from any form of cancer.
I guess I have 2 options;
- I could shut myself away, Pause my life, close the cuRtains and get very upset, the world would keep turning And life would Go on leaving me behind.
- I could go outside screaM at the world And pound the floor Till my fIstS bleed. (think Charlton Heston at the end of the origInal (1968) Planet of the Apes Movie).
Neither of the above would help me, I pulled the ticket so I’ve got to deal with it.
Fuck You Cancer!
Resilience;
- The ability to accept emotional emergencies with the adeptness to accept what comes at you with flexibility. To bend like bamboo in a hurricane rather than break
If asked to say positive things about me most people I know would tell you that I'm a pragmatic and resilient guy, who will find a positive from any situation.
If the brown paper envelope is fat enough they may also tell you that I'm gregarious, generous, enjoy a joke with a terrible sense of humour and am passionate (sometimes to a fault) about what I do and the things I am involved in.
My initial diagnosis actually brought me a sense of relief (this isn’t a typo), there was an answer to why I had debilitating headaches that finally resulted in an emergency hospital admission, there was a problem and the NHS (the best healthcare system in the world and free at the point of entry to all) would find a solution.
Right now resilience, pragmatism and trying to maintain a positive mental attitude/outlook is keeping me on the front foot and allowing me to try and take this on with a smile on my face.
By telling my story I hope to clear my head during the dark times and remain resilient as my hurricane intensifies.
I’ll continue to clear my head with the story of my initial diagnosis, subsequent diagnosis and my journey though my treatments.
I’m scared shitless, not for me but for the three most important people in my world 2 of whom I am unlikely to see grow up and who won't have me there to guide them through their own hurricanes.
'The hardest part of this is leaving you' Cancer - My Chemical Romance - 2006
Thanks for reading. I'll post again soon.
