Brain Tumours – How I’ve Changed

Quotes of the Day

1. ‘Sometimes I have good luck and write better than I can’ – Ernest Hemmingway
2. ‘Sometimes I write better than I can speak’ – Rachel Cummings Feb 2022

Context

I recently read part of a quote from Ernest Hemmingway ‘Sometimes I have good luck and write better than I can’.   I thought about this and after a quick ‘google’ what I think he was trying to say is that he often writes but doesn’t always share his writing.  To be honest if I was you, I wouldn’t necessarily trust my opinion, being that I failed ‘A’ Level English Language/Literature by either getting a grade E or U at the time.  And before you ask no I’m not going to go up in the loft (or summons Ste to, as God knows what’s up there) in a mad search for my red and gold ‘Record of Achievement’ to clarify this (the ones where you put the fancy cream paper and took to job interviews that were actually just filled with blank fancy cream paper and little else).  Either way I know sometime later on I needed 2 A Levels to get on my part-time 5year Quantity Surveying Degree Couse, and English wasn’t one of them.

For me I’ve always been able to articulate my thoughts better in writing than my spoken word.  This has never been more prevalent since my recent Brain Tumour diagnosis and subsequently the effects of Brain Surgery and SRS Radiotherapy.

Brain Thoughts

I read somewhere that we have around 6,000 thoughts per day.  Prior to my recent Brain Tumour diagnosis, I reckon mine was already at a minimum of 10,000.  Since my diagnosis I think this has now multiplied.  I often used to say if you looked at my eBay watch list, Pinterest and Instagram accounts it would give you a good insight into the sort of randomness that often goes through my head on a daily basis.  Put it this way I think if I was to pay a psychologist privately, I could put them well into retirement age and possibly fund their children’s education.

When you think about it the brain is amazing, it is an organ that serves the centre of the nervous system (yes, I did just Wikipedia that then got lost in the complexity of it all).  It controls our thoughts, movement, intellect, heartbeat and breathing.  How Dr’s and Neurosurgeons understand all this, let alone operate and not manage to lose the top of someone’s head or leave their keys or some sharp object in there is totally amazing (for those that haven’t seen it please watch Mickey Flanagan’s Back in the Game Tour it’s absolutely hilarious –‘I couldn’t do your job in a million years!!’).

When you have a brain injury/surgery or radiotherapy your brain often experiences a lot of inflammation and damage.  As a result, your brain is often left having to work harder than normal or find different routes to do the same tasks.  For me I have experienced varying changes both physically and mentally.

Brain Tumours – So What’s changed

Since having brain surgery and SRS radiotherapy I have experienced quite a number of changes both physically and mentally I will list since the ones Post Diagnosis, Post Surgery and Post SRS Radiotherapy.  I feel the pre-diagnosis ‘signs’ I should go into in more detail in a different post to highlight any ‘warning’ signs that something isn’t ‘quite right’.

It was suspected through the initial MRI but not confirmed until Post Surgery that my tumour was in fact cancerous in that my Melanoma had returned albeit in a different way.

Here’s a list of some of the changes I feel I have experienced.  Not all have been consistent, there have been peaks and troughs and I am hopeful and thankful that some of them may just be temporary which I have been told can be up to nine months to determine if there is any long term ‘damage’, but I remain ever the optimist;

Physical Changes

1. Speech Loss –Whilst sometimes my speech can be fine.  I tend to be able to talk more fluently (if you could ever describe my speech as that) around people I know.  It seems to be when I am out in public places or asked direct questions that I really struggle.  I have something known as aphasia Aphasia Definition
2. No Filter Approach –In all this I have appeared to have mustered this no filter approach to what actually comes out of my mouth.  It’s not that I didn’t think these thoughts previously, it’s just that I would have refrained from saying them out loud for fear of upsetting individuals. (Come to think of this I’m wondering if maybe I should arrange for Ste and my Mum to have a brain CT scan?).  Unfortunately, those closest to me tend to suffer the wrath of this the most.  I often find myself saying really direct things like ‘do I really need to know that’ and ‘shut-up’.  This is when I’m struggling to concentrate or the constant talking is getting too much.
3. Weight – there have been obvious physical changes in appearance, my weight has been one of them which has fluctuated up and down.  This is probably a mixture of the cocktail of medication, steroids mainly being one of them. I have now what can only be described as a gerbil face.  It’s always been pretty round but now if it continues, I’m not sure you will be able to see my eyes at all.  However, I don’t try to focus on this but I do still try to track what I eat and eat healthy as I know the steroids, despite their side effects are all helping the process (trust the process)
4. Loss of mobility – since my latest seizure I have lost a lot of mobility and sometimes getting dressed and tying my shoelaces is strenuous enough.  On a recent trip away with my family (and well, deserved respite for Ste) I’m not sure my mum nor me envisaged at the age of 74 (her not me) having had two hip replacements herself, having to tie her 41-year-old daughters’ shoelaces.  My dads’ knees are what can only describe as ‘knackered’; so that just left my sister Sarah to help (so don’t be surprised if you get some knee pads for Christmas).
5. Muscle loss – now I’ve never claimed to be some six-pack gym goddess however, I’ve always been pretty strong and I’ve been known to push a 130kg prowler up and down a track (albeit in a sloth like pace), deadlift in excess of 105kg at home and full stacked seated leg press circa 95kg. This is mainly down to what could have only been described as “thunder thighs”. The only benefit I could see at the time would have been for trapping a pig in an alley way (if that’s an actual thing).  Now I’m just working on being able to stand up for longer periods of time without the need to sit down and the ‘pink’ resistance band slowly trying to build some strength up to the XXL.
6. Disturbed Sleep – Over the past few years I ’ve always tended to be an early riser wanting to make the most of my days often and getting up and going to the gym at 5am while the rest of the world sleeps.  I used to find this worked best for me as having to commute to work it meant I could shorten this time and hopefully spend time with the kids and Ste in the evenings, miss the traffic and hopefully have tea (not dinner) in the evening at a decent time.  I also found if I didn’t do my morning work outs or exercise, I would find a million and 1 reasons not to do something when I got home in the evening.  Now my sleep is totally disturbed I’ve currently been sat here writing this since around 3am.  I get to a point where I’m just wide awake and can’t sleep.  This again is most likely due to the medication and combination of headaches and random thoughts.
7. Tiredness – I often get tired very quickly this can be when I’ve done too much (which recently I discovered the hard way).  I can get tired just by someone simply talking at me, asking too many questions that I have to concentrate on and think about.  Too many unplanned visitors can send me in a flurry.  If I do too much, I subsequently suffer days later.
8. Potty Mouth – for some reason I have developed what can only be described as a potty mouth that you would threaten a kid to wash their mouth out with soap and water.  I tend to drop the ‘f’ bomb now more than ever, especially when put in stressful situations.  Ste however says this is one change he hasn’t noticed at home (I will leave you to take from that what you will).
9. Noise Sensitivity – This has been particularly bad of late.  I am currently sat here typing whilst wearing noise reduction ear plugs and over the head headphones trying to cancel out the alarm that’s going off on the street.  It’s not necessarily the volume either, it seems to be certain pitches and tones, too many different noises at once.  Some which currently seem to be sport on the TV, in particular football matches, the sound of my dogs’ nails on the flooring, my washing machine and microwave (although I am pretty sure they’re on their way out), any TV programme or film that suddenly has background music in, my kids listening to tik tock videos or you tube, workmen/women outside.
10. Shouting – According to my daughter I have a tendency to shout which I don’t always realise I’m doing.  This could be a combination of wearing two sets of headphones to try and cancel out the noise sensitivity and her being of the teenage years, where If you ask her to pick something up off the floor (for the 10^th time that day) you’re ‘shouting.
11. Light Sensitivity –this was particularly bad at Christmas with all the flashing lights.  We all know that too much screen time is bad for you however we all do it.  (I particularly worry about how my children’s generation will or have been affected by these devices.)  It’s things like social media and too much scrolling or unstable camera movements that seems to affect me most (food for thought maybe of what these devices are actually doing to our brains).  Those friends that do want to get it touch with me Whats App and email are probably your best bet.  I tend to put my phone on do not disturb on or mute things when having a ‘bad day’.  I really recommend everyone has a little ‘do not disturb’ phone time even if just for 1 hour.  Social media can be a great benefit, but surely it was designed to connect us to the world and make our lives easier, more accessible and not disconnect us from social interaction with our nearest and dearest.
12. Flatulence – Now if this passes the proofread from Ste I will be amazed as he’s never liked toilet talk.So, I’m not sure if it’s a combination of the mainly plant based diet, (I do eat fish), cancer, possible signs of early menopause (to add to the mix) or my age but there is definitely some wind that comes out at night.  I often wake up not only grateful to be alive but thankful that Ste’s eyebrows and nose hairs are still intact.  Combined with his Darth Vader like snoring (which with the noise sensitivity has now been magnified) and the recent Storm Eunice blowing a gale outside, it’s safe to say the ‘force’ is certainly strong in the bedroom.

On both noise and light sensitivity, I can only assume it’s a tiny insight on what someone living with autism or sensory overload may feel like and I’m thankful I haven’t had to endure this for long and that it will hopefully improve in time.

Mental Changes – what’s going on inside

Looks can be deceiving.  If someone looks ‘well’ we tend to assume that they are.  I am now all too familiar and hopefully more empathetic that not all illnesses can be seen.  There are the things that I find particularly challenging that I will try to articulate verbally to those I know however I hope that by writing this down it gives an insight into what someone with a Brain Injury/Brain Tumour may be suffering with despite on the outside they may look ‘fine’.

1. Memory Loss – For me this seems to be my short-term memory which has been affected the most.  My long-term memory seems fine (well I think it is).  We’ve all walked into a room and can’t remember what we went for, and this happens quite regularly for me.  I could have a thought of something I was going to do then it’s suddenly gone.  This is why Ste is the main point of contact for medical appointments.
2. Stress – I’ve always thought I was pretty horizontal and not stressed.  I seem to get stressed more easily than before which as a result my speech is affected.  I recently encountered a stressful situation in a local supermarket.  I now try to avoid this (for the time being) and have had to get Ste to do the online shopping.
3. Cognitive Thinking – My cognitive thinking has been affected and any more than 1 or 2 steps in a process then I struggle.  Trying to follow an instruction manual or a recipe is too much and what resulted in my last seizure.
4. Maths – I struggle to understand or comprehend basic maths i.e., money and change.  For which contactless comes in handy.  And for someone whose chosen profession involves finances and predominately maths this is really frustrating at times.

But it’s not all doom and gloom

Believe it or not it’s not all doom and gloom as there have been some positive changes:

1. Passion for hobbies as a way of therapy – I have now more than ever rekindled my love for writing, reading, crafts, and gardening programmes, especially since my mobility has been affected.  I have always had a love for repurposing and upcycling.  I think if you described me as a skip rat you wouldn’t be far off the mark.  I put this down to maybe watching too many episodes of Steptoe and Son in my younger years.  I would often go off in my van having arranged to pick up random items of furniture and pallets then have to hide them from Ste when I returned.  Much to Ste’s relief I now can no longer drive so the ‘ebay and upcycling shed’ shouldn’t be getting fuller anytime soon.  I often thought about doing my own series ‘Shit from the Tip’ similar to ‘Money for Nothing’ but a bit more Northern and rougher round the edges should we say.
2. Decluttering – Despite point 1 above I have also developed a need for decluttering and a ‘less is more’ approach to life.  In particular just keeping clothes that I find comfort in and give me joy.
3. More organised – I have a need to know what I’m doing each week (I have a weekly planner on my desk to help me) however the downside to this is a level of inflexibility.  If plans suddenly change, I struggle to recover from this and can’t think of the next step of what to do.  My OT said this inflexibility is quite common from seizure episodes and it’s like your brain has to go the long way round to get to the same destination which can tire you out.
4.  Punctuality – In my 41 years I have never been know for my punctuality. This is definitely a ‘Steele’ trait for one which we refuse to apologise for as there is always someone or something to blame our tardiness on.  When our time does come, I reckon we would need to book any funeral arrangements and make sure they are 30 minutes late minimum just to ensure that 1. We are actually in attendance and 2. People actually turn up due to our bad track record.

This recent need for punctuality must infuriate the crap out of my mates as for years they have wasted so much time waiting for me to turn up for various outings (for which I am truly sorry now the shoes on the other foot).  There are two friends who happen to be an exception to this rule, one is in Manchester and still in denial about her tardiness and hectic lifestyle. The second is my old work friend and still friend 21 years later who despite making a promise to be my pen pal from a holiday in France some 7 years before our paths were to cross again has just decided to start writing letters to me (much to my amusement). She is well renowned for her lateness and will always make me look prompt for any social event.

There however caveats to my punctuality, that is if I’m getting ready and someone asks too many questions I lose my train of thought.  I often have to write things down and tick them off so I know what I need to take and do.

What I don’t want to lose control over

There is one thing above most however that can change with brain tumour and brain injuries, and this is something I am desperate to try my best to keep hold of and that is my personality and hopefully humour.  Not because I think I have such a superior personality but because the friends and family who are helping me now in my time of need are the ones who utiliitmately accepted and loved me for who I am, warts and all.

Lessons Learned

1. Not all disabilities/illnesses can be seen.
2. There are some things you have no control over but you can deal with how you react to them.
3. If you ever find yourself in a situation where you need a pig trapping in an alleyway give me about a year and hopefully. I should be able to assist.