Firstly a quick few minutes summary about me and my secret life, (before the fund raiser please):
As some of you know I had a 6x3x3.5cm Grades 2 & 3 brain tumour of the frontal lobe extracted in 2005. Which was followed up by extensive radiotherapy and my going down with an extreme case of a very rare, potentially life threatening and excruciatingly painful illness whilst in recovery.
And in 2017 I was diagnosed with a new small and benign meningioma, (brain tumour) where latest scans showed it was 1.5cm at its peak. Along with mild osteopenia, (a weakness of the bones). Basically, like osteoporosis but the much smaller, lightweight version.
For those of you that know me, but didn’t know this… … Surprise!!
And for those that like and care about me... Don’t be sad, it’s okay! Well it’s not okay. But you know what I mean. Life goes on... I’m a big boy not a wet flannel lol.
Anyway, the original brain tumour was in the part of the brain that processes things like personality, memory, thinking, concentration, visual imagery etc.
So to give you an idea; I'm pretty much brain dead... lol ... :( :( :(
In that I know what apples and oranges are, who my friends, families, pets and loved ones are but I can’t picture them in my head.
I have no memories or visual images I can call upon; of growing up, holidays, school trips, walks on the beach, nights out with friends. Friends and family no longer with us, my first or last kiss or my dogs Gizmo, Teddy and Wilbur as puppies or growing up! All memories are gone!!
I love TV shows like Game of Thrones, Fear The Walking Dead, Friends, Scrubs, The 100, True Blood. And movies like Inception, The Matrix, Lord of the Rings, 50 First Dates, Dumb and Dumber etc. But after watching, I have little to no real recollection of them.
In fact I often watch TV shows then forget all about them. Only to see them on the TV again 2 or 3 seasons later and think OMG I loved that show and forgot all about it! Happens to me all the time!!
I love my books and stories to! Corrrrrr thank God for Kindle!! Love my kindle!!! Even though I can't picture the characters, the story, the adventure or what not. I still manage to really get into some of them. Lyndsay Buroker, David Gemmell, David Arenson etc. awesome authors for me even with my condition/disability!
And if you ask me about a show, movie or even a book. IF I remember watching or reading it, I’ll be able to tell you whether I liked or disliked it. Maybe some vague and distant reference to it a scene or a character and a very basic concept of what it was about. But that’s about it, the rest is a blank :(
I love my music as well, but like with the TV shows, movies and books. I hear a song then I completely forget about it, until I hear it again, be it days, weeks, months or years later. I couldn’t tell you what a fraction of my favourite songs of all time are. Heck most days I couldn’t name one song I heard on the radio when I drive to or from work, yet I know that I normally always like at least a couple!!
As a teenager I knew the lyrics to loads of songs that I loved off by heart. But nowadays I’d struggle to get any one of their songs chorus’ right! And that with my being seriously tone deaf I’m probably the worst karaoke singer ever lol.
All joking aside I lost my oldest brother Stuart after originally writing this and my Uncle Joe shortly before. And I have no memories of them! Or my grandparents, my cousin Tim and some close friends that are no longer with us.
My condition doesn’t discriminate all memories of them, along with everything else are gone, gone, gone :(
And I wasn't sure whether or not to share my tribute to my brother, but after months and months mulling it over I decided to. As it gives a really profound insight into my condition and how deeply my brother’s loss affected me. (So I've pinned a Facebook link to it at the bottom for anyone interested).
And his loss still does affect me, as all this time on and all I have as memories of my brother, are a few photos. It's still a very sad and emotional subject for me and my family.
And I also brought it up as my parents are in their seventies, our family dog Wilbur is over ninety in human years and my beautiful baby Gizmo is going grey. They won’t be around forever and I am very conscious of that!
And when they are gone, they are gone. There will be no turning the clock back and I will have nothing left but a few photos to remember them by. And the prospect of that scares the heck out of me!
Not something that I dwell on, but they will happen, so I mention it :(
Anyway Sorry! Sorry, sorry, sorry. I got a bit emotional and went off on a tangent there. How unlike me lol.
With the original tumour, along with losing my memories, confidence, personality, self - esteem, identity etc. I endured years of constant, excruciatingly painful headaches. (All of which whilst working full time and commuting 4 hours + a day).
Where not only enduring work was brutal, but all I wanted to do when I got home from work was sneak off to my bedroom and pull my duvet over my head. To drown out the world and everyone and everything in it. The headaches were so brutal that they often left me wanting to rip off the top of my head and for the ground to literally open up and swallow me.
Sometimes the headaches felt like I had a mole or a giant worm burrowing around in my brain. Sometimes like I was being stabbed in the top of my brain by a screw driver. And sometimes like part of my brain was being pulled tight like an archers bow. Horrible, absolutely EXCRUCIATINGLY painful and horrible!! Work and life in general were a right nightmare to say the least!!
Nowadays, I still get terrible headaches that are more than headaches. But of a different kind. Along with a whole host of other serious medical conditions that I have to contend with in and out of work. Yeah I know, lucky me, ladies and gents we’ve got a winner here lol.
As for my personality, although I don’t show it on the outside and I always smile and tell people I’m good or okay and try to come across all chipper and chirpy. Truth is and not easy for me to admit is that behind that smile, I suffer from severe mental health problems.
Not the evil, nasty, eat your babies or flip someone the finger when they’re not looking, hit them over the head with a wet fish then do a runner, type. Well not yet anyway! I’m to unfit and slow at the moment! Maybe in time...
But the severe depression of what I’ve lost and the stress and anxiety of trying to cope in society with this lobotomised and shadow of my former self me. This get my sorry ass up early of a morning to go work and try my best to do a good job type.
In that I’m now the polar opposite of the person that I once was and truth is that I'm broken on so many levels. And who wouldn’t be?
I’ve gone from being a happy go lucky extrovert that was invited here, there and everywhere, who was out almost every night. To an almost total recluse whose phone barely ever rings. And when it does and people ask me what I’ve been up to… eh... nothing. Nothing, nothing, nothing! Well that’s a lie, I go to work, do the food shopping, walk my dogs and go to the occasional pug meet, that’s my life now.
I used to love meeting new people, weddings, days and nights out, stag dos, parties, business networks, meetings etc. and be in my element. But now interacting with people takes me well out of my comfort zone and fills me with stress, anxiety and dread.
I want to enjoy them and more than anything, I want to reverse the clock, be like the old me, The Original Svenster, (complete with sun glasses, super hero cape n all), and make a great impression. The Svenster that fit in, The Svenster most people loved.
But that part of the brain was eaten by cancer, irreversibly damaged and is never coming back. And I can't handle crowds, public events or interaction anymore.
To give you an idea to the extent they affect me, I didn’t make it to my best mate’s stag do or on my dad’s 70th birthday coach trip with the rest of his close friends and our family. That’s how bad my anxiety is! It doesn't just hamper me at work or in public, it even affects me with family, friends and people that I've known all my life :(
Working full time was taking a real toll on both my physical and mental health. So in February last year, (and I’ve been ill and working full time since at least 1999 with a short break in 2005 for treatment with the other, original tumour), I bit the bullet, took a pay cut and reduced the number of days a week to 4. I had to!
That’s a big hit for a single earner with a mortgage and bills to pay. But the headaches which were getting more frequent and significantly worse. Along with a whole host of other serious/major medical problems were just too much for me to handle anymore. And they’re still there and bloody brutal at times, but thankfully with the mid - week break they and work are more manageable now!
I've also been noticing minor problems with my balance and co-ordination for a while. Slight leg buckles, catching myself on doors, door handles, door frames, cupboards, small side tables etc. They're only slight and nothing serious at the moment, but I have definitely noticed them happening more frequently of late...
And the unfortunate reality is that there’s no fix, no miracle cure, no bionic brain implant or time machine, for what I’ve been through, am going through and will go through for the rest of my life. And as many of my problems are progressive, things are only going to get worse. Especially the more tired, burnt out and stressed I am. But I’ll cross that bridge when I get there #FLEX
So as much as I love my job and the people I work with, (clients, colleagues and business associates), I don’t work 4 days a week through choice. But because I have a mortgage, bills to pay, mouths to feed and the system doesn’t work for me. At least not that I’m aware of!?!?!
And I hope that if my story does make it to the right person or people, something can be done to help me and people like me. Because we only get one life and as such I really don’t want to work so much anymore. 1 or 2 days a week fine, but not the 4 days a week I am now, or the 5 days I had been up until last year.
Instead I want to be doing things I like and enjoy when I want while I'm still able, while I still can. Things that make me happy, things that I look forward to, things that help take the headaches away and make me want to get up of a morning.
Such as spend more times with my dogs and give them the time, love and attention they give me. Watch my favourite TV shows, play my computer games etc. when I’m not too tired, mentally and physically burnt out after a hard day or weeks work to properly enjoy them.
Anyway that’s enough for now, I think you get the gist.
I don't want sympathy, I don't want a hug (unless you're Cheryl Cole... then awhhhh okay, go on then). I just want people to know, for people that right me off and have written me off to understand. Why I am who I am and how I became who I am. (Same I'm sure goes for most people battling serious illness and/or mental health problems)!!
That, and I really, really, REALLY want for something good to come out of something bad. For all the years of suffering and pain I’ve been through, past, present and FUTURE to have a purpose, to mean something and go to a cause I believe in. So I really hope this fundraiser’s a huge success.
And if there is a way for people like me with mortgages and serious illness(es) to work less, cover our bills, have some me money to buy the odd things we want and not worry about losing our house. I hope my story can make it to the relevant people or body to step in and help asap.
Anyway enough of my waffle... I'm such a diva lol...
The Fund Raiser:
As I’m sure you’ve gathered by now, I don’t have the strength or energy to run 5 miles, climb a mountain wrestle a giant alligator or a big grizzly bear. Heck I barely have the energy to get out of bed lol
So I’ve taken one for the team, grown my hair, to shave for charity.
That being Muffin Pug Rescue (MPR).
I’m doing this because two pugs Wilbur and Gizmo have gotten me through the darkest days of my life and mean the world to me. (As does the new addition to my family, another pug called Teddy, even if he is a right little pain in the backside at times… most the time lol).
And it really saddens me seeing the sorry states some of the pugs are in that MPR take in and care for.
We’re talking puppy farms where the breeders have left wounds to fester, eyes popped out and just left dangling there left untreated for God knows how long and the like. Pugs that can’t walk properly because of abuse they’ve suffered. Pugs that have had their eyes burnt out by cigarettes and/or are covered in cigarette burns. Pugs that have survived after being used as bait dogs etc.
Muffin Pug Rescue take these pugs in, they need money to raise for the pugs treatment and give them a chance. They find foster homes and fairy pug mothers for these pugs in need. And they vet, check and find kind loving forever homes for these sweet, loving dogs.
And here is a prime example of the charity that I want to raise funds for (Caution Graphic) https://www.facebook.com/MuffinPugRescue/posts/2183982645163713
absolutely heart breaking some of the cases they deal with :( And they need help!!
So please donate if you can, give these little guys and girls a chance! It doesn’t matter how big or small, something’s better than nothing. And believe me, it really is for a great cause!!
Thank you for reading. And a special big thank you for those of you that are always there for me when I need you,
Link to my lost brother Stuart's tribute that still affects me massively to this day for anyone that's interested https://www.facebook.com/sven.imber/media_set?set=a.10156367777373974.1073741834.655258973&type=3
Loved and miss you heaps bro :(