Re-E-wind…

#24

Sorry for jumping ahead to 2020 in the previous blog but I thought 1x year seizure free was an acceptable reason to do so.

Let’s go back to Autumn 2019 (cue the wavy crossfade and harp sounds)…

3/4x days after being discharged from hospital, my symptoms from campylobacter had pretty much vanished. The day after completing my course of antibiotics, I had another day at work scheduled. It was another chance to put a tick in the box of being back to work. I’m glad to say there were no issues, no shivers and no chills – the only negative was Arsenal winning!

Between September and the new year, I worked 15x days which gave me a needed financial boost. I might write a blog in the future about my attempt to get some financial support from the government and local authorities. I’ve paid all my taxes and national insurance contributions but it seems being out of work for over a year due to an incurable brain tumour still isn’t a clear cut case. Actually, I won’t waste my time with that blog. I’ll just coin a phrase from Little Britain, ‘computer says no’…

Come November, I was happy with the way I was feeling, buoyed by a few days at work and a fantastic break in the Cotswolds courtesy of our friends Dave H and Caroline. It was everything you would hope for from a countryside getaway; beautiful farm shop food, home cooking, local pubs with board games, bracing walks and coming home to a log fire. Such a fulfilling treat – thank you both.

After this trip, I had my quarterly MRI scan and consultation with Dr C~. Her positive words and upbeat manner were comforting as the mouse marker hovered over the subtle changes from the previous scan.

That said, I did come out of the appointment slightly confused. As with the curiosity of psuedoprogression (blog #18), the phrase I couldn’t get my head round this time was reduced enhancement. Surely they are 2x contradictory words? Reduced (smaller) enhancement (getting bigger)?

That’s the advantage of having a super intelligent sister by your side at these appointments. She doesn’t forget or misunderstand a thing!

Over to you Jo…“it means there was less contrast on the scan, as in less blood being drawn to the tumour area which is good because the tumour needs blood to grow. So reduced enhancement means reduced blood to the tumour”.

This was a terrific scan result. I had endured 11x cycles of chemotherapy, with an increasingly active lifestyle and only 1x more to go. There was light at the end of this particular tunnel.

Officially, the last day of my last cycle of chemotherapy was Sunday 22^nd December 2019. A day I would be spending in Leicester at the annual Fossemas gathering of university friends. Compared to it’s humble beginnings back in 2007, it has developed into quite a gathering after 12x years. Good times.

The neurologist’s plan for 2020 was to let my brain settle for 5/6x weeks before having a ‘post all treatment’ MRI scan and a neuropsychological assessment.

A neuropsychological assessment provides an objective way of characterising cognitive, emotional and behavioural symptoms. It was a 3x hour appraisal so it was pretty thorough. It comprised of memory tests like retelling a story (multiple times throughout the session), repeating a sequence of numbers in the correct order/reverse order/missing out every other number. There were pictures of elongated shadows made by random objects which I needed to identify. We did some basic reading out loud and other exercises I recognised from my awake craniotomy. 

As a result of that operation, I suffer with something called aphasia. This is an impairment of language which affects your production and/or comprehension of speech and your ability to read or write.

When I’m writing (by hand), I often write the word that’s in my head at that exact point and not the one I should be writing to construct the sentence I wanted to. For example, if I planned to write ‘wishing you a very happy birthday’, I might write ‘wishing you a birthday’ before realising my mistake.

The official report concluded that “tests of both verbal and nonverbal intellectual abilities are generally in keeping with his estimated optimal level of functioning”. 

I also suffer with word finding difficulties which is more frustrating. The harder you try, the harder they become to find. I ‘errrr’ and ‘erm’ and say ‘sort of like’ a lot which I guess is one part of my brain giving another part some extra thinking time.

Most people think I act exactly the same as I did 18x months ago which must mean I only have mild cases of the above. But there are definitely times when I struggle verbally, even if the person I’m talking to doesn’t realise. My speech doesn’t roll out the brain and onto the tongue like it used to. Definitely not.

I had been in and out of KCH or Guys 3x or 4x times per month for almost a year and a half. There is a reassuring and strangely calming feel about that. The assumption being if anything was wrong, a member of at least one of the medical teams would notice.

In early February 2020 I had the first MRI scan post the operation, the radiotherapy and all chemotherapy. 4x days later we found ourselves in the neurosurgery clinic. It was a telling day. 

I commented before about the busyness of these clinics – it’s insane. There are always people getting tetchy about delays. The appointments always overrun (there’s so much to discuss) and therefore the appointments are always late – it’s just something you need to accept.

It was my turn to be called.

It’s always a pleasure to see Dr C~, she inadvertently plays a big part in my life. I was only too happy when she quickly swivelled on her chair stating “your MRI scan results look great and whatever it is you’re doing, just keep doing it and I’ll see you in 4x months…”

Wow! That news and that release of any tension is a spectacular feeling and such relief for me, my family, friends and everyone else concerned. I’ll take ‘errs’ and ‘erms’ and the occasional word loss in exchange for that news, absolutely.

So that was then…and this is now. 4x months have passed and I’m waiting to speak to Dr C~ tomorrow (8th June 2020) about the results of my most recent MRI scan in May. In the build up to this, your senses definitely heighten. You notice that occasional throbbing pain, the 3x consecutive days waking up with a mild headache, some potential dizziness.

It’s difficult to express how I’m feeling because I’m not totally sure myself. Am I afraid? No. Am I Stressed? No. Am I depressed? I don’t think so. Scared? No. Nervous? A bit. Worried? A bit. Anxious? Yes. Am I calm? I think so. Am I excited? In a bizarre way, yes. Hopeful? Absolutely. Optimistic? Impossible to answer.

Is there a word to sum up the emotions of being a bit nervous and worried, quite anxious, calm yet slightly excited and desperately hopeful? 

Probably not. But if you found yourself ‘erring’ and ‘erming’ trying to find one, welcome to my world(!)

Fingers crossed for tomorrow – I’ll be in touch.

Jx

Re: COVID-19. I emailed the CNS at the start of lockdown to ask if I was in the vulnerable category with underlying health issues. Their instructions were to simply follow the government guidelines.

It’s been a unique and unbelievably odd few months for everyone. I wish you all well.