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Background

As it’s my first bash at any type of blog I thought I’d start with a little
bit of background about who I am, what I’m blogging about, why I’m putting you through reading this and when it all started.

Who?

I’m Alex, a 31 year old from Leeds, Yorkshire. I have a wife, Sarah. A
daughter, Sophie, who’s 2 and a baby boy on the way.

I’d say I’m slightly above average across the board, emphasis on slightly,
cue my friends making phallic based jokes. I own a recruitment
business and I’m relatively fit and healthy.

I’m from a privileged background and have been lucky enough to grow up in a
nice house with excellent parents and had a good education. I’ve been given
lots of handouts throughout my life but wouldn’t class myself as entitled as I’ve
worked hard in my career and pushed myself.

Why?

The reason I’m writing this blog, and sorry if you’re learning this for the
first time via a blog (but you should have kept in touch more to be honest) I
have a big filthy, dirty brain tumour who I have nicknamed, Timmy.  I was given a book, Pear Shaped by my best friend and recent best man, Sav, that gave me the idea of jotting down my thoughts and
giving people a better insight to my state of mind, provide me with an outlet
while not working rather than just galloping around on a virtual horse on a PS4
game but importantly, help others in a similar situation learn about my experiences. 

What?

I’m going to be writing about all aspects of my own experiences of having a
tumour from diagnosis to what I hope is full recovery, warts and all.  Now, think of this like a disclaimer. I’m
from Yorkshire so it’ll be to the point, I’ll be honest about my feelings about
what happens and finally I’ll probably throw a few dark jokes about pretty
serious shit, so if you’re easily offended I’d look elsewhere for your morning read
on your commute to work.

When?

I was diagnosed with a brain tumour on the 29th January 2020 but
if you haven’t been bored senseless and want to read on I’m going to get more
into Timmy in future posts. However, to reiterate it will not be all cutesy and
they’re will be fucks, shits, and wanks (verbal not graphic details on my sex
life and bowl movements).

See you soon, Alex & Timmy

Life is a Roller Coaster

6 months have passed since my last blog, don’t worry I’m still fighting the good fight, crazy to think it’s been 6 months since you’ve had the opportunity to read my literary genius, but as Craig David said let me “fill you in”.

The start of the year was tough going mentally, chemotherapy was exhausting and the chemo along with simultaneous seizures made it even harder.  The seizures were still the same as I have previously mentioned in the blog. They feel like a rush of fear and panic where I freeze and struggle to communicate and the feeling seems to slowly release from my body.  Doesn’t sound too bad, eh. However, these were getting to the point of having 8-12 per day, and it’s difficult to just get on with your life.  Mentally it was hard going, the best analogy I can use is like the matador versus the bull. The seizures and cancer are the bull constantly charging at me, the matador, dodging, subduing, or trying to immobilise the bulls attempts at destroying my mental health.

Going through lockdown during this was also tiring, even though I have felt healthy enough to get out walking, it’s a bit tiring not really being able to do much.  I started doing some work again, but have found motivation hard, especially with energy levels being so low.

On a work note and something I thought about a lot through lockdown.  I’ve heard a lot of people say “I can’t wait until we can go back to normal”, for me, I wanted to come out of lockdown changed for the better.  Early on in the year I decided to start looking for a career change and I delved into something I’ve wanted to do for a long time now and have taken the jump into teaching and will start this September.  At the start the only things I was anxious about were, what happens if I’m not one of the 11% who make it past the 5 year mark, however, having seen some people get to between 20-30 years of survival I thought, why not.  To be fair, the way I look at it now, anyone (yes you) could be hit by a bus tomorrow, at the moment that’s the same as me, just I spend a bit more time walking in bus lanes.

Through Chemo, I’ve experienced quite a few side effects. Tiredness and the general feeling of being sick, although other than the first cycle, I havn’t actually been sick. We bought a new sofa in March, a lovely, new ‘L shaped’ sofa with luscious soft cushions. We’d put it off a while as we’ve got a young family and didn’t want their general bodily fluids ruining it. Cards on the table…..I shit myself while perching on the L part.

Other side effects associated with Chemo like hair loss, I’ve managed to so far avoid.  Although, rather than looking like Lord Voldemort, my hair grew back in stages.

·         Stage 1 – Friar Tuck

·         Stage 2 – Margaret Thatcher

·         Stage 3 – Joe Exotic (Tiger King)

I’m not sure if this was linked to chemo, but another problem I’ve faced in the last 6 months have been pissing about 200 times a day, I’ve probably managed about 3 during writing this.

As mentioned before, my biggest problem over the last 6 months have been seizures. However, I’ve begun a new bunch of meds (Lamotrigine) which is helping to manage them and I’m hopeful of getting seizure free and being able to drive again. I mean, fuck me, if Tiger Woods is still allowed to drive, they’ve got to let me back on the road.

I always like to update you on my weight loss/gain. My diet hasn’t been great. I used to associate the term DOMs with Delayed Onset Muscle Soreness, now it’s just short for Domino’s, yes I’m a little chubby gremlin.

A quick update on fundraising too, after hitting £11,000 raised a lot earlier than expected (THANK YOU) we raised the bar to £22,000.  We are absolutely smashing it and have recently just tipped over the £20,000 mark.  If you have opportunity, which I’m sure you do as you’re reading this shit.  Get yourself on https://www.justgiving.com/fundraising/11k411k and donate.  We’ve had over 700 different supporters so far, which is incredibly generous.  But, if each one of those 705 supports donated just £2 more, we’d nearly be there…. imagine that! I’m also going to do another one of my quizzes on the 23rd of May, if you’re interested, get in touch through aldawson21@gmail.com and I’ll send you the details.

As always, thank you for reading. Finally, if you see me after lockdown restrictions, If you tell me to be positive or advise me on my diet, be prepared to be told to FUCK OFF! 

Chistmas Special

Christmas Special

Each year there’s a Christmas special, Eastenders, Gavin & Stacey, Vicar of Dibley and now, Timmy the Tumour has one.  Now, I know there’s probably a reason we don’t talk about cancer too much at Christmas, but I’ll try keep it light and I’m going to link each chapter to a Christmas theme so we stay on topic.

Firstly though, How are you? This is a question I get asked a lot, if it’s someone’s first time asking I usually get asked in a hushed tone and they lightly caress their own head where my scar is.  I was recently in a shop and a woman approached me and learnt toward me saying “Are you okay?” I was caught off guard and my first thought was is something wrong with my face, am I having a stoke?  I wasn’t, she then asked again doing the scar caress action.  My usual response is, I’m fine, but I’m not, which is true.  It’s been a gruelling 6 months since surgery, 33 sessions of radiotherapy and now I’m undergoing chemotherapy.

Like radiotherapy, I thought chemo was going to be a lot more invasive.  The Hollywood movies usually show the patient hooked up to drips with high quantities of drugs being flushed directly into their veins.  I’m taking a chemo drug called Temozolomide and it’s a tablet form of chemo (not sure if it’s available in drip format too) but I take the capsules for 5 days then have 23 days off.  This 28 day total is called a ‘cycle’.  I’m undergoing 12 cycles which is pretty brutal but not many people get to 12 as their bloods drop below the required levels.

So far, my hair has grown rather than fallen out which is a blessing and I’ve had two totally different experiences in the two cycles I’ve completed so far.  The first was horrific, I was very sick, I mean projectile vomiting.  I didn’t know you could throw up with such velocity that you didn’t even need to be in the same room as the toilet to reach it…I mean, if vomiting was an Olympic sport I’d be compared to Jonathan Edwards.  My second cycle  was much better, I was walking 5kms, much better with the kids etc…however, this cycle took me a lot longer to recover from and I’m not sure I even recovered fully before number 3 began, my siezures have become a lot more regular and I’ve been getting funny feelings about 10-15 times per day.

Anyway, enough, onto my very weak linked Christmas themed blog.

All I want for Christmas

Now, I don’t want a lot for Christmas, there is just one thing I need etc. etc.

When you have a brain tumour and you’re still in early days like me you get scans every 3 months or so to make sure there isn’t any regrowth or spreading of the cancer.  Mine, landed on the 16th December getting my results on the 21st.  As if anxiety levels weren’t high enough…it’s the Christmas decider and it can either go; 1) Shrinkage, which is very unlikely, 2) Stable, which means no regrowth and the treatment is in effect, working. 3) Growth, this is the shit myself area.

So leading up the scan, Mariah, All I want for Christmas, is a stable scan. 

Drum Rolllll…….I got it, wrapped up in golden wrapping paper….A stable scan.  I remember one Christmas when I was between ages 3-8 I’d asked for a train set. Christmas morning came, I ran into my parents’ room, jumped on the bed opened my presents like a ravaged animal.  Throwing non train shaped gifts in my Dads face in disgust.  Then, I went into the living room, there it was, all set up…must have taken hours.  Absolute delight, best Christmas ever.  Well, sitting there waiting for my Consultant to tell me the results was like unwrapping socks, chocolates, Harry Potter books…cut the crap Doc, where’s the train set…well there it was, a stable scan.  Thanks Mariah!

Home Alone         

Now, I had to get sign off for this chapter, as to not upset the wife…so I hope it’s worth it. 

A bit of background, Sarah does 99% of the housework, mainly because I’m tired from chemo a lot and well she potters about and just does jobs.  I’m currently having a lot of little seizures everyday which isn’t helping that 1% that I have to do.   When I say ‘seizures’ there’s lot’s of different types, I don’t mean I’m having full on fits all the time.  The most I get are focal seizures or auroras.  They last between 2 seconds and a minute and usually involve me just staring into space and having a funny feeling, sorry that’s not my most descriptive of stories. 

Anyway, a few times a week, Sarah goes out and leaves me Home Alone and unlike Kevin McCallister I don’t want to be interrupted, I want to lay on my arse and do fuck all.  Sarah and I differ on what fuck all looks like and she usually throws in a job or two like, “Alex, while we’re out would you mind washing/vacuuming/emptying the bin”…I know what you’re thinking, how dare she, the evil devil woman.  But, fuck all for me, means really, really, fuck all.  Lay in bed, shut eyes, not sleeping, just letting the mind wonder.  No seizures, no noise, just nothingness but the sweet, sweet bliss of fuck all.  Sometimes I try and escape the craziness my making us a cup of tea so I just stare at the kettle and enjoy the silence.  They say a watched pot never boils, it does.

Last Christmas

Christmas as far as I can remember has always been about family.  Everyone meets at my parents house usually between 15-30 people across the day, we eat, drink and play games.  Last Christmas was no different.  Lot’s to drink, lots to eat and kids laughing and in awe of all the presents.  I even managed to run a 5km which accumulated in an attempted poo in Sutton park.  If I’d have known it would have been my last Christmas getting drunk on Advocat, beer and wine and making my way through family Trivial Pursuit by pitching up every 30 mins by just shouting Geoffrey Chaucer in hope it’ll be right one day, I’d have drunk until blackout and learned another old poet’s name to shout out.

2020 has changed for everyone, C***d has pissed on everyone’s Christmas plans.  We’re having a much smaller Christmas this year, which is probably great for my sanity but hopefully next year, the virus will be gone and we can all reunite.

Fairytale of New York

These links are getting tedious now, but as most of you know the business I started 3 years ago catering to clients in New York…I know, fairytale or what!?!

With the economy as it is and without doing much/any work in the last 12 months the fairytale could be over.  I’m going to make another go of it in the New Year and hopefully keep the train rolling on.  I’ve also started some tutoring work at my old School, where I will be teaching Business Studies A-Level…so this is exciting and may lead to new chapter of my life in the years to come….for now, it’s knuckledown to the old cold calling in a 5x5m bedroom!

Shampoo

There is no link to Christmas here.

After brain surgery you’re advised not to wash your hair for several days and then when you start to wash it use baby shampoo, during radiotherapy I also used baby shampoo to try limit my hair loss…it didn’t work.

Now, here’s what I found.  Do you remember as a kid, you used to get a bit of shampoo in your eyes it was like the world ended…”MUMMMMMMMM, get a towel” then all of a sudden it stops hurting, I inject Pantene Pro V into my eyes on a daily basis and I don’t give it a second thought.  However, going back to gentle baby shampoo, that motherfucker stings like hell.  Here’s my theory, the shampoo chemical producers, they’re making children more reliant on parents and making us more useful so we have to be around with a towel ready to save the day.

Charity

We’re still going with our charity work, so far we’ve raised over £10,000 in four months which is an amazing achievement by the runners and from everyone who has donated.  We have even attracted attention from the likes of Gareth Bale and Joe Hart (Check the Gram peeps).

However, we’ve still got a way to go, so if you’ve enjoyed the post and if you don’t like cancer, try donate this Christmas at https://www.justgiving.com/fundraising/11k411k

Have a great Christmas and New Year!

Radiotherapy

It’s been a while since I last did some writing, I’d love to say I’ve been really busy, but I haven’t. Before I get into this entry (and I’ll talk it about it more later on) my friends and family are fund raising for The Brain Tumour Charity and as I usually get about 500 readers I’m going to ask for a minimum £2 donation for reading this which should help us get an extra £1,000 for the charity….quick maths. (Link at end of blog)

Okay big spender, you’re still reading on. So, the last 8 weeks or so has been a bit of a rollercoaster, it’s involved some major golf milestones and cancer gradings.  We’ll start with the shit bits, so I mentioned in the last post I was told the cancer was incurable and a grade 3.  A little bit more information came out after, the specific cancer I have is called Anaplastic Astrocytoma (AA3), which is one of the nastier ones, although none of the ‘types’ seem too glamorous.  I’ve included a link to some information about it, but it’s basically a fast growing tumour that has a high chance of recurrence after treatment. The prognosis isn’t very clear, this website says 27% of people live beyond 5 years.  It’s not all doom and gloom there though, my consultant did say I have a ‘good prognosis tumour’ which she later clarified as meaning my specific gene should respond well to treatment.  Also, some people I’ve seen from facebook groups live for 20-30 years after diagnosis and since I’m young, sexy and healthy I believe I’ll have a good shot at the 30 year mark.

I started my 30 sessions of Radiotherapy and to be honest, I didn’t know a great deal what I was getting into. I’d already had my mask fitted so knew the area I needed to go to but didn’t know much beyond that all I’d seen was information on Facebook groups of mostly 50-70 year olds absolutely smashing it and I thought, this will be an absolute breeze.  I was wrong.

I’m going to first describe as eloquently as possible what Radiotherapy is and what it feels like. Radiotherapy is the use of radiation to kill cancer cells, as it’s cancer in the brain I can only have the treatment once as it also harms other healthy cells and causes long term side effects.

How it worked for me, each day I was taken in by helpful friends and family, thank you Sarah, Mum, Dad, Jimmy, Katie, Dave and Dave who took me to hospital every week day for nearly 2 months and sat in a multistorey car park, reading books, it was a big help!  I checked in and went to my waiting room.  I waited anywhere between 5 minutes and 2 hours (this was an anomaly; average time was about 45 mins) before my zapping.  When I went in, I laid on a bed with my legs slightly elevated and they put my mask on.  The mask didn’t feel claustrophobic for me it felt like someone was lightly pressing down on my face to keep my head down.  The team levelled my table saying things like Imp 1 and stuff I didn’t understand. They left the room 7 mins later they were done.  The only sensation I had during the radiotherapy was a smell of burning for a few seconds which when I asked was due to the radiation waves breaking down the ozone layer and I could smell the O-zone layer burning.  But that was it really, it was an easy and simple process.

As I mentioned before if these 50-70 year olds on Facebook are saying it’s easy, this was going to be a breeze for a young whippersnapper like me.  After around 6 cycles of radiation, in week 2 I felt exhausted, lots of headaches, getting my seizure sensations again, the closest thing I can liken it to is sunstroke, but, all the time.  To be honest, this made me feel very low in mood, I would say around week 2/3 I was close to depression levels. I was frustrated that these old timers were smashing out their therapy like a game of backgammon and I was suffering, constantly with the thought that because I was struggling I wasn’t going to be part of the 27% who get past 5 years….it was a pretty shit state to be in.  Then I started to think that because we started in very different places maybe the changes they have had aren’t as drastic as mine.  These fogies might not have been able to walk down their stairs before cancer so sitting in bed tired is just the norm, whereas, if you take superman’s powers away and leave him exhausted with headaches and seizure feelings it’s probably going to knock him down a bit.

Anyway, I sought help as it’s the best way you can help yourself.  I spoke to McMillian Cancer Support who agreed with my Oldies vs Superman paradigm but made some good suggestions which if you’re feeling the same as me may help.

  1. Find some hobbies you can still do; for me this was golf and cooking.  Golf is the cure.
  2. Plan your days so you’re active
  3. I also started the fundraising for The Brain Tumour Charity (remember you’ve got to donate for reading this, it takes 2 seconds)

So, Eat, Sleep, Golf, Radio, Repeat for 6 weeks.
On the final week, I started to get excited, 2 sessions left….I get a text…..one of my friends has Covid and I saw him at a wedding a few days ago…..for fuck sake Tom.  I told the radiotherapy department, I could still go in, but at 5pm and had to be escorted through the hospital.  If you’ve ever seen E.T, I imagined I was going to be like him in hospital (Video of ET in Hospital). The reality was I was met by a guy at the front of the hospital who opened doors for me so I didn’t touch anything and the closed off on of the radiotherapy areas for me and I went in as normal.

I didn’t get COVID in the end, so the drama was all for nothing. I had my end of treatment call and they advised me that the worst symptoms can come after therapy has finished. Again, nah not me, I’ve already felt shit that’s for the oldies….but again Timmy put me back in my place. I felt like my head was swelling and the seizure sensations were back.

Since surgery I’ve had 3 seizures (focal aware, which aren’t nice but I’m still conscious and aware of surroundings) which in comparison to before surgery I was having them nearly daily is a big step in the right direction.

I’m currently waiting for next steps to see my Oncology Consultant next week and to start chemo in the next month or so (I think) but before I leave you here’s another snippet.  One of things I don’t like to hear from people is “you’ve just got to stay positive”….(sorry if you’ve said it to me) but I just think, fuck off, you’ve no idea. However, after I spoke to my new best friend Dom Matteo (Hi Dom) he did instil some positivity into me and it did change my perspective. He makes 10-20-30 year goal and plans which is a great idea and allows you to start thinking long term rather than just chemo next, then scan, then scan etc. Don’t get me wrong, I find it hard to be positive 100% of the time, and that’s normal, I’m a realist at the end of the day but I’ve still started to make long term plans and goals which I intend to see through. 

Finally, I hope you’ve enjoyed the post, you owe our fundraising a minimum of £2, sorry if you’ve already donated before but it means you too.  So you know what you’re giving for, you can click to the link https://www.justgiving.com/fundraising/11k411k , but to really make it simple, my friends and family are running 11,000kms over a year for the 11,000 people who are diagnosed with brain tumours every year in the UK.  All proceedings go to the Brain Tumour Charity, so far we’ve run about 1,800kms and raised nearly £5,500 which is amazing.  If you all do you’re bit and donate now that could get us past the £6k mark really quickly, so thank you…..here’s the link again DONATE NOW

What’s in the box?

So, we are just about a month post-op, as a house and family we’ve been through a fair lot but I’m going to try to do my best to update my wonderful readers on as much as possible.  Sadly, there isn’t much great news to share in the blog and I’ve set such a high standard of comedy writing in the previous entries, you might not get as many laughs in the next five minutes but stick with me.

A few posts ago I referenced Schrödinger’s cat as a sort of analogy of not knowing what’s going on and I quite liked not knowing as it allowed for more positivity. Well, we opened the box and much like the 90’s hit Movie ‘Se7en’ after the surgery Sarah and I were anxious to get the results….maybe not to the extent of Brad Pitt shouting to the nurses “What’s in the Box” but we just of horrified to find out what we found inside.

We know originally we were given a grade 3 diagnosis which was downgraded to a 2…good news….well after taking a look under the hood we were bumped back up to at least a grade 3….fucking Timmy. What this means is the tumour is a lot more aggressive than originally thought and moves me toward radiotherapy and chemotherapy quicker than initially thought and wanted.  The doctors eloquently described the situation as “shit”.  This was naturally upsetting news to hear and left me thinking, well how long do we have…..to which I don’t really have an answer.

The next steps in the process were laid out as I was referred to Leeds St James’ Hospital’s cancer centre to oncology consultants and nurses.  My first meeting with the consultant wasn’t the most pleasurable experience…where I heard one of the top phrases you don’t want to hear in your life, things like….”it’s too small, I can’t find it” or “but Daddy, he was already dead when I found him”.   Well, the number one do not want to hear phrase is “incurable brain cancer”.   What this means is my radiotherapy and subsequent chemotherapy is aimed at stabilising the tumour growth rather than curing the cancer.  I mean disappointing to hear but this isn’t too far away from what we always knew.  What is likely to happen is that the radio and chemotherapy will kill off the worst of the cancer cells and keep them at bay from spreading and making it worse.  They will try to keep these down for as long as possible, beyond that I don’t really know much more.  I liken it in my head as something I saw David Attenborough describe on one of his wildlife documentaries about the Anole Lizard that regrows its tail after being attacked by a predator.  So, the radiotherapy and chemo are the predator, it bites off a big chunk of the tumour, but eventually, it will grow back.

This may seem all doom and gloom, but in all honesty, after going through the surgery I feel a lot stronger mentally and therefore more positive.  I mentioned at the start of my journey, that I didn’t really understand the phrase ‘fighting cancer’ as I always thought of the doctors doing all the work and I’d just be sat through it reliant on there work.  Well, I can now truly say, the fight is on and the fight comes from your attitude toward your illness.  I could easily, be negative about the situation and yes it is shit and just sit and wait for it to kill me off…..or I could say, I’ll battle through the shit times of radiotherapy and chemo and fuck it, whatever shitty side effects come my way, I’ll stay positive, attack it with a smile on my face and be thankful.  I remember reading in a book that you need to take responsibility for everything that happens to you…at the time I thought, that’s stupid, what happens if something horrific out of your control happens, but now I can see that although getting this terrible disease isn’t my fault, it is my responsibility how I deal with it…I choose endless positivity.

I haven’t been too sloppy and soppy in the blog and I rarely am full stop, but on the subject of being positive and being thankful, what I have found therapeutic in the last 3 weeks after the shit phrase and the news is looking back and being thankful and grateful and as stupid as this may sound but I am still lucky to be in this situation and although I’m sat here, 32 years old with brain cancer, I also have an amazing wife, 2 fantastic children and have experienced more than your average 90 year old thanks to a very privileged upbringing with great parents who helped me experience global travel at a young age. 

“That’s not sloppy” I hear you say, well, buckle up cowpoke. How thankful am I to have lucked out with Sarah and everyone around me? Let’s call her Super Sarah from here on in, she looks after two children, Sophie (nearly three) and Josh 4 months, pretty much solo effort and then sorts out my drugs and is basically my full time carer….although she does draw the line and cleaning my anus pre-colonic irrigation.  Joking aside, she has been amazing and allows me to keep the positivity and keeps me smiling and happy which through all of this is one of the most important things.

Let me set something straight though in case you’re reading this thinking it’s all positive thoughts and if you think anything negative, you’re losing the fight.  I think of negative stuff all the time, but I recognise it when I do and I either talk about it or I try to turn my thoughts into positive ones.  But, I’ve thought about dying, my funeral, what it’ll be like for Sophie and Josh growing up without a Dad. I even got jealous about Sarah re marrying at one point.  Do not worry though, if there are such things as ghosts I’ll haunt that motherfucker.

Post-op experiences, mostly, I feel tired, very tired, all the time.  I hate being tried, it’s shit….but radiotherapy makes you more tired so lots of things to look forward to.  I’ve the increased tiredness comes a higher risk of seizures, so they upped my Keppra to 1 gram morning and evening…and it’s a 1 gram tablet….it’s fucking huge.  You’ll have seen pictures of Burmese Python’s eating full size adult deer, dislocating there jaws and forcing the whole body in one go….this is what I look like eating this 1gram tablet.  Other side effects have been my itchy scar…I just want to scratch my head, but I’m not allowed due to risk of infection.  I have a few slurred words every now and again and Sarah says I look a bit droopy sometimes, but other than that I’m okay.  I started taking a low dose of sleeping pills which have helped me sleep (obviously) and I’m becoming more alert and can do more through the day.  I played golf (used a buggy), I mean I was absolutely shite but I played. Scored a birdie and a par back to back which was a highlight, but I did hit my driver on the other 16 holes an average of 13 yards.

In preparation for radiotherapy I’ve had a mask made, this is a unique mask fitted to my face, yes, they had to get extra materials brought in to get it around my nose but it’s fitted….pictures on Insta and Facebook.  I was a little nervous about the fitting as my scar is healing and I didn’t want them to pull my stiches out or it to pull at the scar as I thought it might hurt….but apparently, the technicians had done this before and in fact it was a really nice experience.  It was like having a facial, they put a warm soggy mesh (technical term) over your face which feels like a warm flannel and they gently press this against your face until the mesh sets into a plastic mould.  

The only thing I wasn’t prepared for my fitting was the waiting experience.  When I went to the radiotherapy department, it was full of cancer patients.  In retrospect, I should have been prepared, but I haven’t been around this before and seeing the people I was surrounded by made it hit home how bad cancer is.  I mean, I know it’s bad, I’ve always known cancer isn’t a game but seeing all the poorly patients there made it very real.

One thing I’ll add to the end of this post as words of positive advice to fellow warriors is try do ‘normal’ things.  It’s difficult in COVID times, but having normal days and being social with friends and family keeps you going, it allows you to forget for a second that it’s shit and that you’re grateful for everyone you have around you.  My favourite day post op was a rainy BBQ with both sides of our family coming together and having one weak beer with everyone.  Simple, normal things do make things easier.

Eviction Notice

We know now that although we all want Timmy 100% gone, it is impossible for the Docs to completely evict him due to his location but with the days drawing in before the eviction date we still live and hope for the best possible outcome.

Quick spoiler alert, I’m writing this blog one week post-op so I survived the worst of it, in this blog I’m going to talk about the day leading to the operation, what I can remember of the operation itself and the days after.

So a few days before T-Day I started getting all siezury again, getting what they call focal aware seizures. They’d start off like auras, tingling down my left arm legs and pins and needles in my hands and feet followed by nose being filled with air and a rush of panic. I was awake for the seizures and felt mostly like I was trapped in a small room but couldn’t escape. I was having about 3-4 per day and 1 through the night. I called ahead and the doctors upped my Keppra dose to 1000mgs twice per day.

In the days leading to the Op, I also had my COVID swab tests….which weren’t fun. They shoved a six inch stick down my throat and up my nose….abuse I haven’t felt since I was a teenager.

I also started taking steroids a few nights before the operation….which do not help with sleep. I mean I was prepared for a sleepless night of worry about brain surgery….not for weird dreams and an overactive mind. In my sleepless nights before the operation I managed to solve the worlds racism problems and confuse myself into thinking I needed to break all my tablets and dry them out before I went to the hospital and when Sarah refused to help at 3am I was furious….how dare she not join me in my grinding up my drugs. In the 2nd night, I dreamt I was attached to a rope and couldn’t get comfy because the rope kept pulling me away from the bed.

The day before the operation I was certainly starting to feel the fear, I was starting to get lots of calls and video chats of people wanting to look into my beautiful sapphire eyes for one last time and everything started to get real. Bag packed, tablets taken. I even started to get nervous hiccups the night before which was very strange.

T-Day 30th June

Here we go, Sarah and Sophie drove me into LGI at 6:30am and I was in the waiting area for 7am. I was brought it quickly and sat down with some healthcare’s and some of the neuroteam who drew on my head and went throught the risks of surgery again with me….death etc….exactly what you want to do before handing over full power to them. I was also concerned that one of the doctors who was going to be cutting me up had shaved his hair the night before and had made right bloody shit show of it….all I was thinking, this fella better me more careful with a scalpel than he is with his Braun trimmer.

I had a few last minute tests with the occupational therapy teams to understand a baseline of intelligence to compare after they fiddled with the main intel unit. After about 30 mins I was walked down to theatre where it all started to become very real…..I suddenly got that ooooooo fuck feeling what is about to happen…I wondered when it would hit and 5 mins before it hit like a bloody train….if I hadn’t have been wearing a gown and birkenstocks and my physical form didn’t resemble a baby hippopotomous I might have run away…but it my current state, I think the 40 year old nurse would have caught me within moments of my desertion.  

With IVs at the ready I lay down with my anethetist by my side readying my concoction. He lightened the mood by telling me he was in charge of sorting me out if I needed a wee during the operation…a job he was clearly chuffed to have, but with his magnifiying glass at hand he was clearly taking it seriously after getting an early glance of Sargent Winkleson.

Next, thing I know, I’m counting back from 10 and I’m out and about 2 hours later I’m rudely woken with people around me shining lights in my eyes. Not much pain but very uncomfy and to move me into a better position the surgeon carefully manoeuvred my head…this wasn’t pleasant. Imagine your skull being clamped with screws and you can feel the screws grinding into your head. Again, not painful, just not nice.

When I was comfortable, they began mapping the brain with the seismic-vibration machine. It sounded like the thing dentists use to suck/blow blood about in your mouth. During this the speech therapist had me describing pictures like “this is lion, he’s saying ROAR”…they found the speech are pretty quickly as I couldn’t say a few basic sentences pretty early on. The physio in the room had me playing with a credit card between my fingers like a poker champion and gave me gentle slap on the hand everytime I stopped.

The operation went quickly and soon enough I was hitting thr 5 hour mark and starting to tire…I could tell I was getting tired as the number of hand slaps was increasing and my face was getting more droopy.

I renamed the anaesthetist/experienced snake handler from Steven to StWeevan much to his amusement….think it got a few giggles in the op room but I was under a lot of drugs so wasn’t my finest hour.

Then they announced it was over and I was put back to sleep and stitched up…waking up a few later to my new look.

Now, for those who haven’t actually met me before, in the looks department I’m a solid 9…chissled jaw like a Greek god, perfectly symmetrical face….when I woke up and shown my new face I now looked like the spawn of a great hammerhead shark that has mated with Sloth from the Goonies that had been sit on my an elephant and gone 10 rounds with Mike Tyson….I still have personality and wit to pull it off but not ideal.

So, how did I feel? This was the most common question I woke up to….to be honest, I didn’t feel as bad as I thought I would, I felt like I was on my worst ever hangover, I wanted a Domino’s pizza but was left with mushroom soup and the whitest of bread loaves you’ve ever seen along with a very questionable side salad. Also, because of my massive black eye and swelling, I couldn’t see out of my right eye which made walking tricky as all my depth perception was skew-whiff. An unexpected sensation was the pressure in my head. Every time I moved it felt like bubbles were leaving my nose. Remember when your dad threw a 200 pesata coin into the deep end of the pool and you and your holiday buddies all jumped in to get it….not knowing then it was like £1.80….well that feeling you get when you get that little too deep and start to panic. It’s that feeling, everytime I moved my face.

So, after being poked and proded I was ready to be sent home….but not before Justin, the aged Scouse healthcare who gave my testicles and armpits a good clean….thanks, fella…it was a beautiful and delicate moment we shared and I’ll never forget it….Not ever!

The occupational therapist team made me make beans on toast before I was given the all clear to go home.

The surgeon came to see me before I left and although he didn’t have any formal results to give me from the biopsy he said he’d got over 50% of Timmy out along with the more sinister looking part so overall it looks like it was a success. Keeping with the eviction metaphor, I like to think Timmy in person has gone along with his stench from the old cheesy wotsits he was eating on the sofa while watching endless porn. All what’s left is an ikea coffee table and a basic cutely set.

Now I’ve been home for a week I’m starting to feel much more like myself, just very tired and can’t even get through 30 minutes of a movie without falling asleep. I’ve managed to wash my hair and Sarah has helped me out in a few shower scenarios. Although, her rough washing motions made me long for that gentle scouse touch #missyouJustin

So, I’m starting to get better and recovering more and more each day with the help of Magnums and lots of sleep. Excited for my 2 weeks of quarantine volume 2 to be over and done with and I can start seeing family and friends again!

I’ll be in touch soon, ideally with positive news on the biopsy and next steps.

Schrödinger’s Cat

Before I get into this epic blog post, I firstly wanted to thank everyone for the messages of support I’ve had over the last week and for everyone who shared the post, it’s greatly appreciated. We managed to drum up just under 1000 visitors in less than a week which is awesome, and I’ve received 3 messages from new readers who have said how useful they’ve found it which makes the sharing more important. 

This blog entry will cover my psychology tests and my results along with a breakdown of what will happen the day of the operation plus a few funny/scary/unbelievable facts that happen on the operation table.

So firstly, I’ve put together a brief outline of the psychological tests that I’ve completed in the last week that are used as a benchmark of intelligence and memory before and after the operation, and ascertain how the surgery affects my intelligence and memory.  They used a test called the WASI-II, a general intelligence, or IQ test designed to assess specific and overall cognitive capabilities. It involved lots of different tests including;

  • The tester reading out a list of 15 words and I had to relay them back from memory. We did this until I could reel off all of them. It took me 5 attempts.
  • A list of words that I had to describe the meaning to, the list got progressively harder from words like lamp, alligator, bird and lunch to words like enthusiastic and calendar to panacea, mollify and extirpate.
  • Name as many words as you can that start with certain letters in 60 seconds. I got F, S and A. No names, places or changes to the suffix, so you could have fuck but not fucking, fucks or fucker. I use this example as when I received F I laughed and just said it.
  • Copy a complex drawing that included lots of different shapes
  • Remember as many facts about a fictitious story involving 2 lions escaping a Bournemouth zoo finally to be caught by Mrs. Cecilia Patterson
  • I had to remember as many numbers as I could from the tester reading them out which started off with a sequence of 4 numbers and went to a list of 7. Then order the list in numerical order and then read the numbers back in reverse order – I found this one the hardest
  • They showed about 20 pictures and I had to say whether I thought they were done by a professional or amateur – I was brutal, but to be fair all the pictures were from the late 80s and were absolute shite. Then I was showed 3 pictures and had to say which I’d seen before in the previous slide show

There were a few other tests thrown in there, but I won’t bore you too much as I was tested for a total of 2 hours.

So, let’s get into my results…I’m not going to lie, I was pretty impressed with myself, but don’t worry I’ll try dumbing it down for you. Dr Dan said that I scored in the 83rd percentile for intelligence which basically means if 1000 people have read this blog, I would be smarter than 829 of you. Don’t worry though, I won’t let this go to my head, in fact, after all this is done, I’m going to try and give back to the 829 readers by setting up local seminars where I will just teach basic English and issue simple tests of my own. I joke, I joke….they’ll be no seminar. Some more information I was given on my results was that I was exceptionally good (top 1%) at remembering words and pictures and my lowest score (50th percentile) was remembering numerical patterns.

Right, enough about me and my results and more about, well, me. Before my test I was given a ‘mood tester’ and during my conversation with Dr Dan he asked me a lot of mood-based questions, I guess to check up on my anxiety and check for signs of depression. In the follow up conversation with Dr Dan after my tests he let me know that they think that I have ‘mild anxiety’ but they weren’t worried as given I have a brain tumour, a new born baby and basically doing it all through a new age plague, they would expect some kind of anxiety in there.

Dr Dan and I then had a conversation about how I felt about having my operation in a weeks’ time. As I’ve said in some of my previous posts, I’ve not really stopped thinking about the operation, and Timmy, as Willie Nelson once said, “You are always on my mind”. However, because I’ve now had so long now to contemplate every possible way this operation could go and after meeting my surgeon and speaking to Dan and other members of the operation team, I’m not scared or worried about the operation. I trust that the neurosurgeon is probably a little bit smarter than my 83rd percentile and doing something as complex as brain surgery is just his bread and butter, it would be like me doing a cold call or prepping a candidate for an interview (Maybe a little harder). However, my fear comes from what they’ll find under the hood. This got me thinking about Schrödinger’s Cat.

So for those of you who didn’t manage to reach the heights of a C in A-Level Psychology like my fine self; Schrödinger’s Cat is basically a theory that if you put a cat in a sealed box along with some poison the onlooker can consider the cat to be both alive and dead. That is kind of like how I feel, the tumour at the moment can be seen as both benign and malignant. I’m not afraid of physically opening the box, but it’s daunting knowing what will be inside am I going to looking at a dead, smelly moggy or beautiful, purring Persian kitty?

I talked to Dan about this profound philosophy and although he looked at me like a semi-moron he kind of understood, however, he did say this was quite unusual. He said that most people just worry about the operation or are worried about the tumour still being in their head and are saying “just get this thing out of my brain”. However, because I’ve had more time due to COVID to contemplate my situation he thinks I’ve slightly shifted my fears. Be under no illusions, I’ve not got comfortable with Timmy making camp up there, in fact, I still wish he would fuck off entirely, but I have come to terms with the fact he is there.  

Dr Dan also mentioned that I shouldn’t worry too much about my results as even if they do open it up and it’s not a slow growing grade 2 and it’s a scarier grade 4 it still doesn’t make any difference that I will get treatment and they can just adjust what I need. He also said that tumours can be a bit of all sorts of grades, so I might have a grade 3 part and grade 2, sort of like a tumour Neapolitan. Also, because brain tumour treatment has come on such a long way and they know so much more I’ll be in good hands whatever is inside, which is reassuring in itself.

Okay, that was part one of this ‘epic’ post. I’ve also had a conversation with my speech therapist and occupational therapist who will be in my operation with me and have given me a breakdown of what will happen the day of the operation…I’m now going to do my best to regurgitate that information back to you.

So, I’m going to be going to Leeds General Infirmary (LGI) at 7am and asking for my speech therapists and physiotherapists who will begin testing my baseline speech, memory and physical ability.

My operation should start at 9:30-10ish where they’ll put me under general anaesthetic and cut a chunk of my head open to expose the brain. During this time they will also put my head in vice like structure to keep my head still and get me in a comfortable position to perform the procedure. They will attach suction like tabs to my forehead to create a screen between the surgeon and the rest of the people in the room creating a clean and dirty line. This part will take about 1 ½ hours.

They will then wake me up and I will be greeted by my dream team of a speech therapist, physio and anaesthetist and begin trying to scoop Timmy out. As I’ve mentioned before, Timmy is sat where they expect my memory, speech and coordination to be based so the surgeon will be using a tool that sends seismic waves into my brain before he starts touching it. As he’s sending these vibrations inward the team will be asking me to talk and do basic physical activities, if at any point I can’t do something they ask me to do, they won’t touch that part of the brain to avoid giving me any lasting damage….amazing right. They say that it is quite common for you just to stop having the ability to talk or do things so I wasn’t be alarmed if something stopped working.  

They also mentioned something pretty crazy….during my operation they say there is about a 20% chance of me having a seizure….but not to worry….if this happens they simply chuck some ice cold water over my brain and it will stop…..I mean, that’s completely fucking nuts, how did they even find this out it the first place? Did someone just start having a fit and Dr Steve just had a spare bit of ice water left in his Mcdonald’s cup and thought, fuck it, this’ll do.

After doing as much as they can do or as much as I can take (2-3 hours), they’ll put me back to sleep and stick my head back together with giant staples.  Google ‘craniotomy scar’ to get an idea about this bit.  

The whole procedure will be an all-day affair but they’d expect me to be coming round about 7pm…just in time for Leeds versus Luton. So if anyone has any Leeds United contacts at the moment give them a message from me. Don’t fuck up against Fulham so when I wake up I can be a bit more relaxed about the Luton game and if they do fuck up Fulham, DO NOT LOSE AGAINST LUTON!

Anyway, that’s about it, I’m in full prep mode now for surgery. So no real contact with humans (other than the people in my house) and I’m washing daily with antibiotic soap to stop MRSA which looks like I’m washing my body with human blood, I’m putting anti-MRSA stuff up my nose, I’m still on my Keppra and Vit b6s and I’m taking steroids to reduce swelling.

This is my last blog post pre-hole in head so please after reading this, hold hands with the person next to you, close your eyes and say as loud as you can……..FUCK OFF TIMMY! Let’s get this twat bag out.

Packed it, Booked it…

The last month or so since the surgery delay hasn’t been the most exciting for anyone through the COVID pandemic and in the Dawson household it hasn’t exactly been a barrel of laughs either, but we’re still going and after an ‘eventful’ month I’ve finally got something to write about and some time to do it.

Let’s circle back to about 4 weeks and after being pretty much symptom free since the famous fatigue gate I started to experience some similar sensations to those prior to diagnosis, the ones where I was feeling trapped on a boat and dizzy in the shower, yeah that weird shit.  This time, a little bit different, this time I felt like the air generated from my bedside fan was pinning me down to the bed.  I woke up feeling like this on my front and I was speaking like I’d just had 8 pints of the good stuff.  I started feeling dizzy through the days and had the feeling that waves of energy were travelling through my bloodstream from my nose to my toes.  I also had pins and needles and numbness in my fingers. I spoke to my epilepsy nurses who informed me these were symptoms of auras/partial seizures, so they increased my Keppra medication to 750mg twice per day.  They also told me to get my hands on some vitamin B6 to try offset some of the anger/irritation side effects that Keppra brings, think this was for Sarah rather than me.

Although my partial seizures weren’t completely going away they did improve but I kept badgering my epilepsy nurse and the entire neurology department at LGI until finally I was booked into another MRI.

This MRI or as they are now known, ‘Claustrophobic Fuck Holes’, was similar to a previous one where I was injected with contrast dye to help show areas of the tumour and look for signs of growth.  I was in there for 40 minutes and although I was listening to Radio 2, it was a pretty nasty experience.  The MRI machines aren’t that bad, but it’s just the length of time you’re in there and when the dye is administered you can feel the liquid coarse through the veins and can taste the metallic like flavour of the dye.

Anyway, a few days pass I don’t hear anything, in the shower one morning I was feeling particularly positive, signing away I decided that as I hadn’t heard anything quickly it was good news and no growth had occurred so I’d get on with waiting for COVID to end and another MRI in August time.  Springing out of the shower and telling Sarah about my positivity theory, I went downstairs to make myself a coffee…..the phone rings, it’s the Neuro ward…..For Fucks Sakeeee, I thought I’d got away with it.

It turns out that my tumour has grown slightly, which is normal for a grade 2 tumour but there were also some areas the dye had picked out as more ‘troublesome’ and had started to ‘manifest’. To be honest, I was in a bit of shock with the news and it took a while to sink in, but ultimately this new development had made me ramp up the waiting list to get an OP ASAP. He was trying for that week, but wasn’t able to fit me in, which I was quite glad about as I don’t think I was quite ready for the big match just yet.

Anyway, I’m now booked in for my awake craniotomy for the 30th June at LGI and have to quarantine (COVID regulations not normal procedure) 2 weeks prior to the operation and 2 weeks after.  So, now the fun really starts and all of a sudden, I’ve been inundated with calls from the hospital scheduling different appointments to get me ready for Timmy’s eviction date.

So far, I’ve had a Goldman Field test where they check my peripheral vision, help map my visual cortex and ensure they don’t damage my eyesight during surgery.  Apparently, they check this by holding up sticks in my peripheral (like an airport marshal) so I can tell them if something changes.

Next, I had a 2 hour call with the famous Dr Dan, now I don’t know how famous he is, but three different people mentioned his name in the lead up to this call and everyone had that light up feeling when they said, “oooo you’ve got a meeting with Dr Dan, he’s great”.

You know what, they were right, Dr Dan is a bloody nice fella.  I went into the call with thoughts surrounding me like; would I be alive after the 30th June, would I come out a vegetable, will I walk or see again etc. However, after listening to his soothing northern tone, I came out of the call with nothing but positive vibes and with the most information about Timmy and the operation to date.  I’m going to try go into detail of how he described everything to me as it might be helpful for others having an awake craniotomy but also help people supporting those who are too with a better understanding…..watch me fuck this up ;-/

So, Timmy has set camp in the right side of my brain right on the insular cortex.  To visualise this, make a fist with your right hand with your knuckles facing the left, leave your thumb on the outside (should look like a brain) Now, the insular is under that bit of the thumb.  The brain is full of wiring systems that all meet up at the insular and Timmy has been growing in the middle of it all. Now the brain is a fantastically adaptable organ and while Timmy has been growing, the brain has been adjusting to keep all these wires working. However, now Timmy has reached a size where he needs to fuck off, hence the symptoms.  So, what they’re going to do is cut my skull open to see the brain, lift the flap and see little Timmy so they can start to ‘debulk’ him.  They say debulk as this isn’t going to be a full eviction, he’ll probably leave some old unusable Ikea tables in there.  Dr D said they usually get between 30-99% of tumours out with most crainotomy’s getting over 50%.  However, the brain will adapt again and then the second operation will mean they can safely remove more of the tumour.

D-Man also gave me a bit more information on recovery and what to expect.  When I always thought of brain surgery I thought people would be out of it for a long time, basically fed baby food and straw fed for the next year.

However, he said I should be discharged between 2-7 days, most likely 3, depending on how surgery has gone and some people are back to work within 6 weeks.  The time frame for recovery is usually between 6 weeks and 3 months, however, in that time I will be able to walk about, talk, eat etc.  The biggest symptoms I should have are fatigue and lack of concentration….no change there then.  He also alleviated some of my fear by saying in his 10 years working with the neurology team in Leeds there has never been a serious complication which is good to hear.

I hope I managed to go through that making some sense, it made sense in my head, although I have a tumour so what the hell do I know?  I’m now booked in for more memory exams and coordination tests as well as get my swab, pre-op questions and another psychologist call to check on my general mental health as well as a couple more that I’m not sure of yet.

So, on the mental side, it is pretty tough going, but it’s nothing like what I thought it would be like. I’m sure everyone has thought about or talked with their friends or partners about a bucket list and said something along the lines of “If I was told I had a year to live, what would you do?”.  Well, I’ve always loved travelling and eating so my bucket list was something along the lines of; Brazil, African safari, Philippines, Peru etc. Since having kids the goalposts for my bucket list have adjusted dramatically and rather than trek to Machu Pichu petting alpaca’s I’d be much happier watching Sophie ride her bike around a park or go pet a billy goat in a petting zoo…..okay maybe the kids can come to Brazil too.  However, this whole COVID situation has taken the bucket list and ripped any kind of idea up and thrown it into the wind.  Instead, all choice and power has gone out of the window and the most excitement I’m going to have in lockdown is watching it rain out of the window, try to stop a hyperactive toddler from ripping her own hair out from boredom, walk around a 3×3 metre square like a caged polar bear trying to soothe a baby to sleep and play monopoly with an overly competitive wife.  However, when I think about it, it is all about choice.  If I had the choice right now, I wouldn’t be getting last minute flights to pet alpaca’s or to see the Great Wall, I’d probably be here, walking around my livingroom….maybe less rain would help though, seriously, it’s June, some sunshine would be nice.

Anyway, that was a long blog, well done if you stayed with me.  As always, please share with people who this might help or share in general and be nice.  If you want to have a zoom call over the next week I’m pretty free so please get in touch – it would be nice to see people before the big day arrives.

Thirty Twomour

Blog #7

I know you’ve all been worried sick about me, with my lack of blogging activity over the last month but here I am, ready to share some tumour feelings and updates.

First thing I thought I’d get out there was the delay in my surgery.  I know I said this in the last blog but just as a quick recap; my most recent scans hadn’t shown tumour growth and the consultant said he was more confident that it was a grade 2.  However, with the current global pandemic my surgery was to be delayed at least until late July after I have some further MRIs and when we know more about the COVID -19 situation.  Now, I am well aware; no growth, no chopping head open, likelihood of lower grade tumour – I should be jumping up and down jiggling my newly grown man boobs.  Well, you’d have thought so, however, to be honest after my moobs had settled down I started to feel a bit different.

It was my birthday on the 21st of April and I knew that after having a pretty excellent life so far that my 33rd year was going to be my hardest and well shittiest by a long way but I had in my head, operation this month, a couple of months to recover, if I have to do chemo and/or radiotherapy I could be through the worst of it and if I remain healthy I could be back to my best for April 21st 2021. However, I could now be looking at a potential op in September/October (own guesstimate) and my recovery could well and truly go to 2022 and that’s fucking shit.

Don’t get me wrong, I know I should be showing more positivity with the other optimistic points from the conversation with my consultant but before this diagnosis I’d got my act together diet wise, I was hitting the gym 5/6 times a week, I was running 21 minute 5kms, swimming with solid 800m times and was looking pretty buff.  Now, thanks to my dislocated shoulder, broken arm and fucking Timmy I can barely lift a 10kg bar above my head and my running is despicable and full of anxious thoughts.

More importantly than any of the above is that the delay puts a lot more stress on my mental health.  I do put on smiles and jokes, particularly through this blog and I’ve always tried not to take life too seriously and make fun of myself and others which I imagine makes me look a lot stronger than I actually am.  However, I’d liken my thoughts to a funnel; the majority of input thoughts are sad and depressing.  Mainly, how long am I actually going to live, does the delay mean my tumour is growing and make it harder to get out, am I spending my last few months on life in lockdown? Then as the funnel narrows, I digest my thoughts to try and project only positive ones.  Sometimes this can be quite difficult and every so often I let some of the negative energy out. This is quite hard, and I imagine others going through similar situations to myself brain tumours or otherwise have these thought processes and it does make you think about how you talk to others and see other people as I imagine lots of people, like me, hide behind a front.

I am hoping that my next MRI scans in July will still show no growth and I can still be looking at a Grade II prognosis and can start my operation and fighting process as soon as possible and that the COVID delay hasn’t helped the tumour mutate into something worse.

Now, on to something a bit more light hearted and something I know you’ve all come back for, exercise.  In the last blog I completed a 4km run, I’m now running about 6km but no progress in speed. I can’t decide whether my lack of fitness is due to my chubby belly (borderline obesity) or anxiety to try pushing myself.  My doctor did say don’t overdo it as it could bring on a seizure and I imagine that knowing this does stop me pushing it and every time I get a little tired I do automatically slow down and rest.  I’ve started to do Joe Wicks HiiT workouts too to try shed some pounds and make it easier to run too.  However, I have a slight predicament….it may take me 2 months to get back to my ideal weight, so there I’ll be slim and trim for July’s MRI where I then may have my surgery and I’ll be taking steroids which will help reduce brain swelling but also mean I’ll be piling on that weight in no time.  So, here’s the question, do I diet and try not to become a rotund human sized magnum or just let the magnums consume me, enjoy it and lose the weight after I’m given the all clear?

Nothing else to really say, I know the hospitals have begun to start surgeries again and after speaking to the neurosurgery department at Leeds they said my type of surgery would be high on the priority list once they start up, so here is hoping everything is good with my next scan and we can Timmy out ASAP.

The Northern Train, Service to Leeds, Has Been Delayed, By Approximately 4 Months

#6

Hey all you cool cats and kittens, today is your lucky day. This week you’re going to get 2 blogs in 1, but we’ll start with yesterday’s consultation with my doctor, although with the new Covid-19 restrictions I was demoted to a telephone conversation to discuss a couple of points; my recent MRIs and the brain operation dates.  Usually, with all my appointments so far, I’ve had quite a bit of anxiety leading up to them, the usual; ‘shit, what happens if it’s bad news and he gives me 10 minutes to live’ kind of anxiety. However, as I’m sure many of you know by now, Sarah and I have recently had our second child, Joshua, so my scanxiety has been taken over by a poop creating, booby draining, sleep depriving, cute machine.

Anyway, we had the call and for the most part, it was all very positive.  Timmy hasn’t shown signs of growth and although I’m not popping out the Dom Perignon just yet, it’s a great fucking start.  Also, given the way the tumour looks, he sounded much more positive that it looked like a grade 2 tumour. Still keeping the champagne in the ice bucket, but again, get the fuck in. As we mentioned in previous blogs, there are lots of different types of tumours, but if we’re looking at a slow growing little prick then even I might be able to put up a fight. 

Now, before I get ahead of myself and start wielding off like Alan Shearer, there was a very slight snag in the positive call.  My surgery is to be delayed. Originally, I should have been going under the knife in about 10-15 days but given Covid-fucking-19 and the backlog the NHS is now under because Greg from Goole can’t stay in arsing home for a month I’m now looking more like September/October time.  In the meantime, I’ll be in for another MRI to check growth and make sure I keep myself alive and sane.

I know what you’re thinking, Alex, you’ve just had some great news, surely you can muster up one ounce of patience and wait a few months to have your skull excavated, but, imagine your only (lie) anxiety is being prolonged and the news does have a slight air of shittyness about it – However, what it does mean is that I’m no longer thinking of a ‘do before I die’ bucket list but more of a ‘do after lockdown’ bucket list.

After soaking in the good news we had the opportunity to ask some questions of our own – I won’t bore you with the details of all the Q&A session, but I did ask about exercise as I haven’t lifted my chubby little arse off the sofa since 2 days pre-seizure.  Partly because I’m nervous I’ll collapse halfway through a 5k and die alone in a council estate and secondly because I like eating magnums more than running.  However, Doc said that running and exercising wouldn’t impact the tumour but if I do overexert myself, I run the risk of having a seizure.  So, be prepared for new celebratory running selfies after finishing a 2000 metre jog in 3 hours.

Witness the Fitness

I’m not sure about you but when I think of people with a chronic illness I think of extreme weight loss and looking like Christian Bale in The Machinist, but no, I’ve inflated and I’m looking more like John Candy than Christian Bale.  However, I can’t really blame too much on Timmy as my diet currently consists of 2 magnums, 1 milky bar, 16kg of homemade biscuits sent from Grandma and a Kebab, I’m pretty sure I’m about 1 millionaire shortbread away from getting a letter of concern from the people at myFitness. To put this into perspective, I’m currently tucking into a bowl of salted caramel ice cream (shame photo attached)

Another point on expectations versus reality of dealing with an illness, I expected to look ill and given some of the comments I get I think others expected that too. On several occasions I’ve had, oh, you look fine. I’m not sure what I or others were expecting but other than putting on 30kg I look fine and healthy.

So, today, after hearing I could exercise from my consultant I decided to go on a quick jog and try de-John-Candyise.  Don’t worry though, I kept to the middle class areas so I wouldn’t collapse while looking at a St George’s flag lying next to a can of Special Brew.

Now, as I’ve mentioned previously; my runs or walks have usually ended after about 5 minutes with a very red face panting like a highland cow. Today, was different, today was my day, today was urmmmmmm disappointing.  If you’ve ever watched Peep Show, when Mark goes jogging with Big Suze, it was exactly like that – give it a watch https://www.youtube.com/watch?v=pZSIMwZaZ_A

To be fair, it wasn’t that bad, I finished 3.5km in under 20 mins. It’s no Mo Farah but it’s a start and because of Covid-19 the streets were empty and nobody got to witness my newly developed man boobs bouncing along the A65.

I guess I’m not going to have a great deal to talk about for another 6 months unless people want my qualitative research notes on male baby excrement. So, I’ll be checking in less frequently and with fingers crossed my MRIs will remain stable, the pandemic will pass and I’ll be taking the champers will finally be popped.

“Graeme Souness Managerial Career”

#5

It’s been a quiet week and to be honest I don’t have a great deal to tell you about, but I’ll end up writing a dissertation somehow, I’m sure.

Now, unless you’ve been living in a cave the last 2 months a global pandemic has led to a countrywide lockdown and more importantly has stolen my thunder, so, if you don’t mind I’m going to spend the next 5 minutes selfishly telling you how the Coronavirus has impacted me directly.

Firstly, if you’ve been following my blog throughout, you’ll know that I was suffering from quite bad fatigue.  However, after writing that we went for lunch with some friends (before lockdown, calm down Sharron).  Sarah and I were out of the house for about an hour and after about 15 minutes of getting there I wanted to go home, I felt exhausted and very anxious that my exhaustion may lead to another seizure.  When I got home, I started googling fatigue and brain tumours. Learning that it was very normal I calmed down quite quickly and it was like a switch was flipped and my fatigue went from chronic to pretty minimal overnight.  I mean, I know fatigue will affect people in different ways and some people will have it much worse than me but knowing it was normal really helped me overcome it and if you’re reading this in a similar situation I was in, I hope that knowing fatigue is normal can help.  I also found that getting out of the house and walking for just 10 minutes helped me massively.  So, get this, man gets diagnosed with brain tumour gets fatigued, man gets over fatigue, Covid-19 puts me in lockdown.

So, with all this energy I’ve been doing some solid googling and thought by sharing my googling history would give you some insight into my current state of health and mind.

  1. Shoulder Dislocation Exercises

My dislocated shoulder is driving me crazy, it doesn’t hurt and during lockdown I’ve been painting our hallway and kitchen as well as the garden fence.  The exercises provided by my physio have been great and my mobility has improved massively, although my arm looks very odd when I move it, but my next appointment is cancelled due to the Covid outbreak, leaving even more frustrated. 

2. Fitness Decreasing with Brain Tumour

Although my fatigue has mostly gone, my fitness is now dreadful.  I’m fine with walking and slow tasks like painting but Sophie forgot her bunny when we went for a walk with my parents (Pre-Lockdown, chill out guys) and I ran about half a kilometre there and back with quite a steep incline and I was knackered.  I’ve started doing some strength exercises and I’ve managed 10 press ups with very poor form and again shattered with a high heart rate.  I haven’t managed to find any information on this but it is something I want to look into for my consultation next week.

3. Vulnerable People Coronavirus

So, I’m still not sure how vulnerable I am.  I’m worried that if I do get it and get the high temperature that comes with it this will mean I have lots of seizures.  Either way, especially with Sarah being due to give birth any moment now we’ve been very respectful of the lockdown, as I’m hoping everyone reading this has been too.  I do know a few people who are now in the extremely vulnerable category who can only crack a window so I guess I’m kind of lucky I haven’t been put in here but it would be nice to know how vulnerable I actually am.  The hospital will allow me into Sarah’s C-Section which is great news but my consultation next week has been moved to a telephone call.  I’m not sure if my operation will be pushed back given the stress the NHS is currently under but as I haven’t heard anything from my MRIs I’m assuming I’m in a stable position so this might not be bad thing in the short term.

4. Graeme Souness Managerial Career

Other than worrying about being vulnerable, decreased fitness and my shoulder I’ve also been incredibly bored so my google history then gets a bit sketchy and I’ve been learning about Graeme Souness’ revolution of Rangers, Minnesota North Stars franchise move to Dallas in 1993 (I watched The Mighty Ducks) and Karaoke Party, after my police friend dispersed a Slovakian sing-a-long.

So that’s about it really, sorry it’s not the most exciting but my next blog will be focusing on my consultation and living with a brain tumour, a toddler and a newborn baby.