Hey! It’s been quite a while since my last post, apologies for the delay on this one. Call it writer’s block if you will, but I have been putting 100% into getting back after it in the gym and generally grabbing life with both hands whenever I can. I have taken my time with the blog post as it represents several months worth of activity.

Hopefully it doesn’t take you quite as long to read through it as it did to write it and I hope you enjoy hearing about how I’m getting on.

I keep getting asked about what I have been getting up to in my ‘free’ time that I’ve had during my recovery so I’ll spend the beginning of this chapter laying out my usual routine. Overall I have managed to develop it quite nicely to that point that my various activities just flow into one another, but it’s not been without its setbacks.

If you’re interested in hearing more on this and how daily my routine has helped in enhancing my physical and mental wellbeing then read on. But if you’d prefer to skip to the clinical updates click here.

My Routine? Simple...

Cold showers – This is how I frequently start my day, it’s the first thing I do before I have cooled down properly from getting out of bed for maximum effect. I have gradually worked my tolerance up to be able to withstand a 3 minute cold shower. (I started off, only turning it cold right at the end and adding on 20 seconds, every 2 days until I reached three minutes.) Why? I hear you ask? It’s a phycological win to start my day by choosing to do something that’s moderately unpleasant. This comes from once hearing a quote by Chris Williamson on chosen suffering. I’ll link it in below as he says it better than I ever could.

The first 20 seconds of the cold shower are pretty shocking to say the least and then after that it feels refreshing as hell. By the end I’m left invigorated and feeling alive. I have even started to miss it, if I can’t do it for whatever reason.

There’s now a weight of evidence as discussed by Andrew Huberman of Huberman labs to prove that if it’s done correctly it can provide numerous health benefits and raise the baseline dopamine in our brains by 2.5 times and it stays at that level for several HOURS. Which FYI, is more potent than sex and chocolate (maybe not combined 🙂 ) and it puts it above most prescribed antidepressants.

Gym – I go at least 4 times a week. I find it amazing for both my physical fitness and from a mental wellbeing perspective. I have observed many notable changes to my levels of strength and muscular endurance. Plus many of my problems seem a lot smaller when I have just smashed a workout and I’m viewing things with the added perspective that a massive endorphin high gives me! I literally feel like my brain has found a new gear in terms of problem solving. Next time instead of saying, I’ll sleep on it, you may find me saying “I’ll workout on it!”

In the past I was always left frustrated in the gym as I was never able to develop and stick to a consistent workout routine for more than one or two weeks, because of an overreliance on motivation which was all too fleeting and not to be depended upon in the longer term.

But thanks to my brain tumour (who I have now had to re-name ‘mini-Bob’ due to his recent and drastic weight loss surgery) I have now been going consistently for 20 weeks or so.

As a result I have managed to develop a framework for self-discipline that kicks in when motivation can’t be relied upon. This started gradually and came from simply holding myself accountable for the promises I’d make to myself.

What helped even more was the clear and visible progression of my strength and that has kept me going back and smashing through workout after workout. The results are not always linear but I can take something positive from every workout. I have also been fortunate to remain injury free, thanks owed in large part to Cameron my PT who has been able to establish my limits and pushes me close to, but not over them.

I believe a big part of my reason for my lack of consistency in the gym previously, was linked to a preoccupation with not having it all figured out in terms of workout plans and nutrition (which I was using as an excuse, from actually getting after it.)

But what matters allot more in reality is just showing up and putting in the work even when you don’t feel like it at first. I particularly like the following infographic which touches on self compassion, consistency and choices in life.

On reflection, I’m increasingly certain that the events of the past 8 months actually have been a unique opportunity for me to take advantage of, I’ll explain why though as I’m not certain everyone would see it this way and the answer might not be immediately clear to some.

I think It’s a rare privilege indeed to get to take some time out from an occupational career such that Optometry is. I’m quite a dedicated person so once I commit to saying I’ll do something, it will be done and to a good standard at that. But having something like this happen in life was the opportunity I needed to re-assess somewhat.

It’s allowed me to purely focus on myself and my recovery. This has been particularly good for allowing me to gain new perspectives and giving me the breathing space required to take stock and reframe my life, as well as re-discover what my body and mind are capable of.

Albeit, I would have preferred not have this lesson hammered home via the wisdom imparted by a brain tumour, but you can’t always choose how you receive your lessons in life, but you can choose how they impact you and your response to them.

Coffee Socials – These I find particularly good for my speech and language practice. Speaking of which I feel almost back to normal now. Everyone has times were they feel slightly ineloquent and like they can’t quite string their words together, but by-in-large even with more complex topics I rarely find myself struggling and I when I do it’s usually a sign that’s it’s past my bedtime anyway. I still feel like I’m improving here too and although I may never reach my admittedly high standards for communication, I have found often I’m close enough.

Paddlesports – Kayaking, canoeing and paddle boarding have been my go-to sports of choice this summer. It’s been great at getting me out of the house often seeing new and interesting places. Not to mention working on my tan and Vitamin D levels. I’m working towards acquiring the skills required that will allow me to my take paddlesports instructor qualification as soon a possible. It’s my happy place and where feel most at peace to be on the water (or in it, depending on good my balance is).

Meditation / Breathing / Yoga – I try to do some sort of mediative, Yoga or breathing exercise everyday. For me this goes hand in hand with getting my day off to a good start or giving myself a refreshing break mid way through my day.

For yoga, since my surgery I have found Yoga Nidra practice especially helpful and it has been reported to have the following benefits

• Rejuvenates the body and the brain
• Fights fatigue
• Reduces anxiety and lowers high-stress levels
• Increases mind and body awareness
• Improves concentration
• Bolsters memory
• Purges negative and unnecessary thoughts
• Improves ANS (autonomic nervous system) regulation and response.

As far breathwork goes it usually comes down to how much time I’ve got to work with. This can vary from ‘square’ or Box breathing when I don’t have a lot of time to spare which is a very simple breathing technique that is best demonstrated by this helpful infographic. It comes in handy for me to calm yourself in stressful situations or to quiet a racing mind.

Just breathe…

The Wim Hof method is great when I have more time time. I usually feel the benefits after about 3-4 rounds of this which can take 15-20 minutes.

This involves an element of breath retention where after completing 30-40 full inhales and exhales you breathe out and try to retain your breath for as long as possible.

This has a gradual and cumulative effect on the cells within the body and has been scientifically proven to boost immune function, help with stress, improve sleep, energy levels and focus in day to day activities. Maybe there’s a placebo effect but I have found it helpful and leaves me feeling great.

Family Time – I’ve spent some time back home, both in Omagh and in Donegal for our yearly family gathering of all of the ‘McCann’ Clan. It now takes two large full houses to fit all of us in these days and no one’s getting any smaller!

Getting to go home was a real morale boost for me as, at certain points during my recovery I wasn’t sure about how much further treatment if any I would need.

Looking back a year ago, I would never in a million years have predicated my life would have looked like this at the age of 33, but having came through so much in a fairly short period of time and emerged on the other side relatively unscathed, I’m left with the most simultaneously terrifying and exciting times ahead of me. Sometimes I think about what life has in store for me next? The Answer: Only time will tell.

I’m grateful for the moments we got to share as a family in Donegal. It continues as always to be a lovely retreat away from city life for me, just as long as you are prepared to experience every season in a single day.

Saying No – It sounds bad but I have quite enjoyed saying no in the past few months. This comes from considering whether this activity or another is really worth my time and whether it furthers me or not. This allows for more time to be spent on the things that I love. I think that with every big change in life it’s only natural to put up some extra filters and barriers up for things that demand my time and effort and if it doesn’t leave me feeling energised, refreshed or fulfilled in some way then the likelihood of me partaking is slim to none.

In the past I had felt quite a fear of missing out (FOMO) but thankfully I’ve learned to be a bit more selective with my time and have struck up healthier boundaries with my new attitude of giving less fu*ks. I’m pleased to say that my 8 ball for life has now just as many, if not more responses for the negative as it has for the affirmative. Which is in my opinion a healthy life choice.

The unexpected advantage of this that I’ve found is when you actively choose to commit your time to an activity or a person, you can show up so with so much more intention, authenticity and energy than when you really weren’t feeling it. Scarcity of your time makes the experience seem a lot more meaningful also.

If you are reading this and have any suggested reading for me or advice on techniques that may be of benefit to my life or others in any way do let me know in the comments below – I appreciate all suggestions. As you can tell I’m all for self improvement.

Clinical Updates

Anyway, gather around y’all, it’s way past time I gave you the clinical updates you have been waiting for. Let me tell you all the craic. (As we say in Ireland)

Wednesday 5th, April 2023 – Southmead Hospital

This was a routine follow up with Dr Raenette David and Gary my support worker, to discuss my histological results which had taken just short of 8 weeks to come back in. This was a slightly longer wait than had been predicted but I hadn’t really been concerned here as I was still very much focused on my recovery at that point.

So it turned out my surgeons predictions’ about what the tumour was made up were correct. ‘Bob’s’ results were in. My final diagnosis turned out to be”:

(Drumroll please*)

An Astrocytoma grade II that’s Methylated and has associated genetic co-deletions.

(Applause*)

In plain English – this is still classed as a low-grade brain tumor that displays specific genetic alterations, including DNA methylation and the deletion of certain genes. All of this means, that there are some molecular characteristics that can impact the tumours’ behavior and can alter how it responds to the various treatments that can be offered.

As far as I was concerned, this was very good news and the least bad outcome possible, proving that it was accurately assessed upon initial discovery.

Raenette also took the opportunity to show me the pictures that I had asked them to take during surgery. (This wasn’t exactly standard protocol to get this service during surgery as this but as I had asked them so nicely and my surgeons were happy & provided that there were no identifiable people in them, except for me.) They were more than happy to let me keep them.

I have to stay they were quite impressive behold. I have included them below behind a screening cover image for those with a strong enough curiosity (& stomachs such that mine was to look at them) to actually see a brain tumour in situ and when what was done to in the attempts to remove it was amazing to me.

Monday 24th, April 2023 – BRI – BHOC (Bristol Haematology & Oncology Centre)

During this appointment I was introduced to Dr Herbert, an experienced Neuro oncologist and his specialist nurse a fella called Emil both of whom greeted me warmly. They seemed pleased to observe I had made a full physical recovery from surgery by that stage and my speech was coming along quite nicely. They would be leading the charge on any adjunctive treatments if I choose to pursue this option.

I went into this appointment fully expecting that I would require further treatments such as chemotherapy and radiotherapy to kill off the remaining tumour following on from the discussion I had had with Dr David, but as I was about to find out that those would not be without their potential consequences.

Dr Herbert took the time to explain that unfortunately with my particular grade II astrocytoma, when that there’s still a degree of tumour remaining after resection (mini-bob being around 30% the size of the original Bob) that there’s a always degree of uncertainty whether or not further treatments may be worth the unavoidable risks that come with radiotherapy or chemotherapy especially someone specifically below the age of 40.

In other words and as far as I know, there continues to be very little reliable evidence base to show a significant difference exists to a patient’s survivability if it’s decided to treat them immediately or treat later on when significant progression is identified. (When aiming to treat a Grade II Astrocytoma that’s had a partial resection*)

Dr Herbert went on to tell me about how there was NO evidence to suggest any earlier treatments can prevent the tumour eventually transforming into a higher grade glioma. It can do so at any time regardless of the treatments pursued or irrespective of timing. It would be rare for this to happen suddenly in the case of low grade Gliomas but eventually, all astrocytoma’s progress into higher grades of tumours be it in 2 years or 22 years time. However further adjunctive treatments CAN stop or delay growth thus increasing survivability. Moreover there has been flurry of recent developments involving new drugs coming through to the market so fingers crossed a few of these make it through the final trials and offer brain tumour patients further hopes of extended life expectancy as currently brain tumours represent the biggest killers of people under 40 in the UK.

Dr Herbert seemed keen to warn me that earlier interventions can have a host of potential side effects that one would presumably have to deal with earlier in life too. These can range from cognitive impairments linked to the exit-dose of radiation that my brain would inevitably be subjected to and there were the certain unsavoury fertility related side effects that chemotherapy can cause.

So there alway must be a weighing of the pro’s and cons and there is always something of a balancing act between quality of life now versus the risk of long term side effects. I thanked them for the information and advice but had to admit I was a little overwhelmed in the moment and unable to make this decision then and there on how to proceed further.

Emil and I agreed to stay in touch and he sent me a bit of ‘light reading’. In the meantime I done the deep diving into the literature as required but found especially with my type of tumour there wasn’t a whole lot to go on as Dr Herbert had indicated, either for or against treatment at this stage so I found it difficult to make an informed decision.

Interestingly, If you ask chat GPT about the statistics’ associated with a grade II astrocytoma with my certain characteristics it’s described as a ‘Life limiting’ condition but it conveniently skirts around giving any hard numbers for patient survivability, unless in the event it’s allowed to progress to a grade 4 – Glioblastoma multiforme (GBM’s for short) which are the most severe grading of brain tumour and have a typically a 6-24 month prognosis from diagnosis.

I’m pleased to say it’s not too uncommon these days to see more and more long term survivors such as @dave_bolton_inspires_ who has been living with his GBM for 7 years now if luck is on your side, not to mention an immense amount of determination and a willingness to fight a terminal diagnosis via any means possible. Check him out at https://www.davebolton.co.uk/

It was a weird feeling for me and for the first time I was at a loss of how to proceed. Up until this point I had a very clear route of action and I had been fully prepared to in my mind to go through immediate chemo and radio, but unfortunately it wasn’t as simple as that. There was a very real risk of cognitive impairment affecting me before the age of 40.

I thought long and hard about the decisions that lay before me and carefully weighed the pro’s and con’s of action now versus action later. It was and continues to be one of the toughest decisions I have ever had to make.

I took my time with it, giving Emil a call back after 2 weeks to tell him my decision.

I had decided to wait until absolutely necessary to pursue further treatments. (Aptly dubbed watch and wait) As it currently stands I will wait for the result of each 6 monthly scan as they appear. If at any stage Bob grows back I will consider radio and chemo or new treatments as they become available such as Vorasidenib a new drug thats that’s meant to double progression-free survival. So I have options available if I need them.

I’m still not 100% sure I’ve made the right call, but time will tell.

Saturday 15th, July 2023 –BRI (Radiology department)

This was my second MRI since surgery (The first being several days after the operation on ‘seizure Saturday’) It went very smoothly. I enjoyed my family time back in Donegal as I waited for the results.

Wednesday 16th, August – The Unofficial all-clear

Currently I am awaiting final confirmation via an MDP (multi disciplinary panel) on the exact results of the MRI scan. But to Dr Iyer’s eyes, it looks like ‘mini Bob’ has not grown – Fantastic news and a big relief for my family and I. I hope it to be confirmed officially within the next week or two.

My Brain’s still a little bit ‘Special’

Since the 8th of June the greatest challenge for my recovery has been the fact that I have been getting a seizure every couple of weeks or so. They are mostly unpredictable when or where they present making for sometimes painfully comedic timing (I once was out on a date when I got one.)

I usually have fair warning of a minute or so before they really get going. In this time I normally try to reassure people that they look alot worse then they are and not to panic, I position myself in a comfortable position usually sitting upright and set the timer on my watch. I’ve never experienced a seizure before 2pm so if any of you’s don’t wanna deal with that possibility then it’s best we stick to brunch for the foreseeable future, haha.

Check out this helpful guide (AI generated) for what to do if someone’s having a seizure. Give it a read, someday it might come in handy but hopefully not with me.

1. Stay calm and ensure safety in the surroundings.
2. Time the seizure.
3. Do not restrain the person, but protect their airway by gently turning them on their side.
4. Avoid inserting anything into their mouth.
5. Stay with the person and call for medical assistance if needed. (in the event of a seizure lasting >5 minutes or experience multiple.)
6. Reassure and comfort them.
7. Allow them to rest and recover.

My typical seizures normally present when I’m awake and fully conscious and aware of myself. I can think clearly during them and change positions if I feel I’m in any danger. I can’t speak during them. I feel a strange sensation in my eye’s beforehand like I can’t keep them still. (Saccadic eye movements, similar to nystagmus for any eye geeks out there.)

Following that I get a twitching of the right hand side of my face and this quickly progresses into spasms in the right arm and a turning of my head and neck to the right hand side. Basically it looks like Im trying to wink at something far over my right shoulder! A good look, and one which may end up getting me in trouble one day. My breath normally comes raggedly with difficulty at times as I move through the different phases of the seizure. Usually this is what I focus on and it helps keep me right during them.

They usually last somewhere between the 2-3 minute mark but naturally they seem a lot longer when you’re in the moment. It’s not much fun for me to experience one but there are way worse things to have to go through and I’m also aware of people who get multiple seizures per day post surgery so I’m not in a position to complain.

A theory about why they might occur may be that they’re linked to a part of the wound healing process that can cause the development of scar tissue and fibrosis and that may at times cause my brain to short circuit. The connections there are still healing and finding news paths all the time, so it’s understandable. I was bit paranoid that it was a sign my tumour was growing again but following the positive MRI results reassured me about that.

Recently, I have been trying a higher dose of my anti seizure medication and there are many other types that I can try so I suspect I’ll eventually get to the point of being seizure-free, fingers crossed but until then it’s a bit of trial and error right now. Needless to say I have a close working relationship with the team at Southmead and they have been very helpful with all the tweaking to my meds currently going on.

Monday 28th August 2023 – Is there a return to work on the cards?

I’ve had some absolutely lovely messages & cards from patients of mine and the Wells road team are constantly being asked to pass messages on to me. Thank you so much guys, you know who you are! I tend to see the company Directors, Lynne and Gerard and Kerri every now and again and I keep them in the loop with my progress. Originally I had planned to begin my phased return in Late September, early October.

With further consideration this time frame is a bit ambitious considering I’m still getting the odd seizure so I’m planning on playing it by ear for now. Given that Dr Iyer and his team are still optimistic about gaining a tighter control on my seizures, I feel it best I wait a bit longer before I return to practice and wait for the dust to settle a bit more before deciding on a firm course of action. Which is a big shame as I was looking forward to seeing my patients again and generally I feel well enough to work again.

So Gerard, Kerri & Lynne are currently having a think about other roles that I could perform for the company aside from a practicing Optometrist in the meantime, I suggested team barista but I’m not so sure they will go for this.

So the road to recovery has been mostly kind to me and I’m at the stage now of considering what I can do for others in fundraising for charity or acting in a voluntary basis, as it may turn out that have a bit more freetime on my hands than I first thought.

Thanks for joining me for this epic tale, I hope you’ve enjoyed and thats it for now, I will continue to provide updates as they come.

Much Love. Connor.