HEALTH UPDATE: BRAIN TUMOUR/CANCER DIAGNOSIS / MEDULLOBLASTOMA

So,

Yet another roller-coaster in the life of Gari.

As some may be aware, I presented at A&E on Wednesday 9 April having been suffering for two weeks with intense head pain which that very same week 4 health professionals had all diagnosed as migraines The pain was a lot more restrictive too my daily life than you knew people would tolerate at home so I felt compelled to push it further.

SO glad that I did though, the A&E department quickly booked me in for a CT Scan and based on the results of that (they could see an enlarged ventricle in my brain where CSF fluid was not draining properly) they kept me in over night so that I could have a MR scan first thing next morning. Next thing that I knew I’d woken up and some burly gruff porter was wheel chairing me to the scan room – I wasn’t even permitted to walk

First MR scan wasn’t quite so bad, despite the alarming noises that the machine makes.

More alarming was that by the time I got back to my origin there was a senior anaesthetist waiting for me to say ‘you may or may not need a major operation in which we will be doing this that and this other scary sounding thing to you’ – you quickly got the impression that it was happening as you wouldn’t have such a frank/moot conversation over breakfast normally (I’d already been marked as nil by mouth the night before in anticipation).

I went for a shower and next thing I knew, I had opened the door and three brain surgeons plus entourage were all standing there, not one of them looked me in the eye/shook my hand properly. I knew that it wasn’t a good sign. Literally they explained that I needed a left posterior fossa craniotomy and that it would be impossible to remove the whole tumour without causing significant brain damage.

I was very quickly told to ring my family and next of kin and to pass on the details of my neurosurgeon (who it turns outs runs the neurosurgery department) so that they could be in direct contact. I didn’t even get to go back to my bed, it was wheeled up to the nurses station,  and I was told to jump on right there and off we went to the operating theatre.

11 hours later I’m told (after what was planned to be a 5 hour op) I was eventually and mainly de-brain tumoured. We’d already discussed that it was going to be impossible to get all of it (he promised that I’d probably be ‘worse off’ (his words) after the operation owing to the location) but what I later learned was that I was fully expected not even to live through it.

My understanding is that the whole team looking after me did a phenomenal job and that I absolutely owe my life to them. I’m humbled at the resource and dedication that people put in to helping me out.

Once I’d recovered for a few hours in a high dependancy unit, I was transferred down to Ward B7, a recovery unit for spinal and neuro patients.

I spent a good week sat on the ward watching my CSF (spinal fluid) draining out of my head in something called an EVD (it was wonderfully medieval/humours balances) ha! Needless to say, I was VERY pleased to finally have it removed.

MASSIVE THANKS  to everyone who had chance to come visit and let me gross them out!

Hopefully most people will appreciate the need for me not to be so ‘public’ during this time – it’s very much been a private/testing time for me, my family and close friends, and it’s not a topic that you just drop in to conversation online nonchalantly / without causing some worry – I was very mindful of this…

Given that I was ‘promised’ to be made worse – so far the only issue that I have is with walking (I now have a stick) and coordinating my left hand. REMARKABLE!!! Both should settle down after some Occupational Therapy and in time.

Worth noting that I am at home and doing all this just TEN DAYS after such a major operation – I am very proud of this and see it as a measurable achievement.

UPDATE: THURSDAY:

Just back from an appointment to review the tumour that they took out – we didn’t learn much other than a name to be honest.

Medulloblastoma

(click the link if you want more info)

Next steps – I start at The Christie for a fair amount of radiation therapy next week (I am in tomorrow for my initial visit), and today I ended up having a surprise lumbar puncture after my meeting (FUCKING OUCH!!!)  so that we can make sure that the tumour is primary to the  brain / hasn’t picked up cells from elsewhere.  We’re hoping to avoid chemotherapy.

Be warned – there is SO much admin involved in getting a cancer diagnosis ha!

Nothing to be bitter about, a lot more answers next week hopefully, and I have no pain etc – just trying to get over the challenges of brain surgery at this point.

May I thank you ALL for your support – please understand that as much as I’d love to be able to keep everyone personally updated, it takes a lot of energy that I’ve absolutely been robbed of, and my, hopefully temporary, lack of co-ordination means I’ve lost a typing hand and my steady eyesight haha!!! You’re all superstars for caring about some random kid from the internet who just happens to keep a website and have met such a lovely bunch of like-minded people via social media.

Max and his family have been sensational – the only thing I ask is that people check in with him frequently and make sure he’s coping well – he’s done SO much stuff for me – I love him SO much!!!!!

 

** UPDATED POST 20 AUGUST (CLICK ME) **

 

**please forgive any typos – it’s taken 28 hours to compile this – it’s not easy when your brain physically doesn’t want  you to do owt in sequence*

About Gari

Thirty-Two year old northern lad; living out in the Peak District and rediscovering life after having had a brain tumour.

22 Responses

  1. You won’t remember me from Twitter a few years ago, but I stumbled on this via a mutual acquaintance’s timeline. So sorry to hear this has happened to you and wishing you well. x

    Like

  2. Just Me

    You won’t remember me from Twitter a few years ago but I stumbled over this via a mutual acquaintance’s timeline. So sorry this has happened to you and wishing you well. x

    Paul

    Like

  3. Jodi

    Omg I have just started following you and after reading what’s happened to you I feel silly sending you a message about citalopram!
    Just wanted to say you sound very brave and good luck x

    Like

  4. Shocked to read this and amazed at how strong you sound. It must have been an awful time for you and Max especially being thrown such news out of nowhere. Doing my best to avoid silly comments and cliches here, but I really hope you feel well soon and back in the groove.

    Like

  5. Garytomwilliams

    I’m so, so sorry to read your diagnosis. I know I only know you and Max through twitter, but its been a good few years now and so no surprise that I do ‘actually’ care. I don’t know if there is any practical assistance I can offer, what with being in London and all, but if I can be of any help please do let me know. Good luck, and hugs to both of you.

    Like

  6. Sorry to hear all this news Gari, but incredibly impressed (yet again) at your courage and strength. Your bravery and fortitude are inspiring and humbling, so thank you for taking the time and effort to share your story.
    Best wishes for your continuing recovery. Think of all those great musicals waiting to be watched!
    Simon xx

    Like

  7. JoergDE

    I hope you feel well and your recovery is fast. You are a strong person!

    I was very sad when I heard about your health problems.

    Hugs for you!

    Like

  8. Oh dear. I hadn’t realised.
    I’m truly happy things are looking up.
    I did pop onto your insta last week and wondered where you’d got to

    I hope you’re well

    Like

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s