16th of February, 7:00AM – Gate 24 – Southmead Hospital

I sat patiently waiting to be called through from the waiting area to the Medi-rooms for my final pre-surgical checks. My stomach gave a loud groan of complaint. It could have been the nerves but it was more likely that I been ‘nil by mouth’ from the evening before, so it was fair to say I was getting pretty peckish by that stage.

I looked down at my bulging North face duffel, having been stuffed full of enough clothes and supplies to last what I expected to be a 3-5 nights stay (all being well). Kristina was accompanying me. Although we were not officially an ‘item’ anymore she is still my best and closest friend and has been a constant support for me since my diagnosis. We had been through thick and thin together. I was glad for her presence and was lucky to have her at my side to care for me in my hour of need.

They called my name and I thought ‘this is it! Time to get rid of Bob!’ A nurse began the final the Pre-Surgery checks. I dressed up in my surgical gown as pictured and was given very fashionable ‘grippy’ beige socks to go over some knee high white’s one designed to prevent blood clots. I said goodbye to Krisi. ‘See you on the flip-side!’ I told her. I got the impression she was more allot more worried than I was, but was putting a brave face on it. She was not to be alone for long as she was soon joined by my brother Barry and my close friend Jackie who both came down to keep her company through the long wait while I had my surgery.

Meanwhile I was taken by Gemma the Anaesthetist, walking the short distance to the Operating theatre. Exchanging pleasantries on the way, it was a very strange and a bit surreal to think that very soon someone would be cutting my skull open and if Gemma did her job right I wouldn’t feel a thing! She got me to lay down on the table, helping me get comfortable, laying on my right hand side. This was to be my position for around 7 hours, so I had to make sure that was I completely happy and it was a comfortable one. As once my head was in that position I couldn’t move it. This was helped by the use of a special form of air bag (Almost like a bean bag but it conforms to the exact to the shape of your body.) She handed me a mask to put on and initially for several minutes I didn’t feel any different. Then I noticed a slight rush as I began to feel the effects of the drugs. She informed me in a joking way that they were using the same type of anaesthetic which killed Michael Jackson but added hastily it was what he was mixing it with that killed him, which I found hilarious and timed impeccably. I felt a rush of Euphoria as she altered the mixture to include more anaesthetic and I was probably speaking gibberish as my memory of things faded and I entered oblivion.

The next thing I remember was coming to and thinking the operating theatre was allot busier than I had last seen it. The space in front of me had been filled by about 4 – 5 people, Including Gemma who welcomed me into the world of the waking and Maddie my speech and language therapist who greeted me with her usual infectious smile and said hello. Also present was Charlie the OT who was observing her first very first awake Craniotomy. There was a few other nurses busily bustling around too.
Behind me, separated by a sheet of plastic were Dr Iyer and Dr David (Raenette). I couldn’t feel a thing, no pain at all, but noticed my head obviously held in place securely. Thinking back there my have been a slightly cold sensation but that may have been due to two causes. 1) My hair having been shaved off completely one on-one side (not that I could see myself yet.) 2) There was a window cut in my skull and I could feel the draft!

I had been covered by multiple blankets so I was nice and toasty. My next enquiry was whether the catheter was in yet and was assured that that had been taken care off already. Dr Iyer and I began to hold a nice conversation, It went something along the lines of.

Dr Iyer: ‘How was your holiday, Connor?’

Connor: ‘It was great, have you ever been to Egypt, you must go!’

Dr Iyer: ‘Where did you go, exactly?

Connor: Sharm El Sheikh! I ate so much and visited loads of places, the quad biking in the desert was the best!

This conversation went on politely whilst he and Raenette worked away to the high pitched ultrasonic sounds of their tools. This reminded me of the sound that dolphins make. Time seemed to pass strangely during this period, maybe it was the anaesthetic but I couldn’t say if this went on from minutes or hours, but finally he said asked if Maddie could begin the testing.

Maddie and I completed what seemed like several rounds of verb association questions that we had practiced. ‘The boy reads a book’ ‘you listen to music’ ‘The girl traveled on the bus.’ Nothing too complex. Intermittently they stimulated my brain to make sure I had feeling on my right hand side and I was asked to move it from time to time. It is so strange when they stimulated it as it feels like a mini electronic shock but in only your right hand, but is quite reassuring in a way as you can definitely feel it.

Meanwhile Dr Iyer and Raenette discussed what they were doing which I quite enjoyed hearing and the in’s and outs of it and what they were planning to do next. I was asked to test with Maddie again and again and I could tell they were getting closer to the important bits for speech by how frequently the ultrasonic tool was being used and the based on the results of the testing. I began to have to think longer for the questions, finding the words coming more and more slowly. Whenever I stumbled or slurred or exhibited any disfluency, Maddie reported it right away to the Dr’s. This was quite disconcerting, but I knew that it was eventually going to get to this stage and this was all part of the process.

At some point one of the nurses decided to be an absolute hero and put on a playlist of my choosing so the whole team were subjected to listen to tunes like Stairway to Heaven (which I found was very fitting) by Led Zeppelin and ‘Back in black’ by ACDC to name a few.

By far the most uncomfortable part of surgery was being in the same position for so long. Without the perception of time passing it was hard to tell exactly, but with the help of Gemma, I needed to shift my weight occasionally in this repeating cycle of being comfortable for a while but soon the discomfort would grow and grow to the point of being intolerable again and I would have to reposition. I knew that if I had the endurance to deal with a bit of discomfort now it would me serve well in the end, so I thought happy thoughts and got on with it. I wanted to do my best for the Dr’s and support team as they got one shot of removing as much of ‘Bob’ as possible and I intended to give them every opportunity to do so.

Eventually Maddie reported that I was unable to respond to a particular question, it was repeated and although I knew the answer I was unable to speak it. This happened a few more times and I was described as being a bit absent taking on board some things but not everything. The surgeon’s made the call that I had had enough for one day and prepared to close me up. Which I remember at the time feeling relieved but proud that I had given it my all. Gemma soon upped the anaesthetic before I gladly returned to oblivion.

The Recovery Process

Medi room – Post surgery.

I awoke gradually, with Gemma checking in on my recovery from the anesthetic. Once she was confident I was ready for visitors she let Krisi in who looked exhausted and relieved equal measure. As expected, the operation lasted approximately seven hours and I must not have been in the theatre until 8:30am or 9:00am meaning by now the time was around 4PM. Gemma informed me she still hadn’t had lunch yet so I encouraged her to go and get something to eat! Krisi and Barry took it in turns to see me, due to remaining Covid rules they weren’t allowed in all at once. Props to Jackie though who stayed as long as could before she had an appointment to go to of her own. It turned out she has missed me by less than an hour but kept Krisi and Barry entertained and hydrated with lots of tea’s and coffees bought between them all day. Krisi told me they said operation went very well and they were pleased with how co-operative I had been throughout.

With regards to the immediate aftereffects following surgery, it was clear that there had been some affect to my speech. For now I was able to make short sentences and say how I was feeling, but I mixed up yes/no questions meaning that I ended up with sugar in my tea on more than one occasion. (it could be worse!) I had anticipated this, post-surgical brain inflammation is responsible for the majority of speech difficulties initially and It was only early days yet before I would fully know to what extent I had an issue. I was moved later that day to ICU for close monitoring while made my initial recovery.

ICU

I think I stayed in the intensive care unit of for the less than a 24 hours. The best part was being able to eat again and at some stage I was finally able to get my catheter removed. This may be bit TMI. but anyone who doesn’t know there is so much more ‘tube’ than you expect – it just keeps coming and coming. Pro tip – It helps if you cough while removing it, I was so much more comfortable without it in. I spent my time mostly watching youtube and listening to audiobooks. Jackie and her husband Ben came to visit me which was great company. I was managing to say words like dexamethasone and anesthetist at that stage which was a good sign. The post-surgical pain was manageable with paracetamol. My jaw ached somewhat and I couldn’t open it very wide initially due to a tenderness and swelling there. Which I guessed was due to some muscle or other they had to work though to get the brain. I had some weakness in my right hand side and remember not being able to hold a pen correctly. This was quite mild though and I hoped this all would pass in time. Raenette visited me on the Friday morning after surgery reiterated that it with went well. They had managed to remove an estimated 70% of the tumor before they had to stop for fear of damaging my speech and language centres. I was happy with that and thanked them for their efforts. In my heart of heart’s I was a very slightly disappointed that they couldn’t resect it all but reminded myself that A) It was massive and poorly quite poorly defined and B) That the alternative scenario if they had of tried to remove it all may have left me completely unable to speak. My natural instinct was to feel slightly guilty had I been able to answer more questions or hadn’t had the absences then perhaps they would have been able to take more out, but I reminded myself what an effort I had made and that I couldn’t have possibly done anything more.

The Ward

I was eventually transferred to a more general ward and I had been getting plenty of homework from Ellie one the Speech and language therapists who shared are role with Maddie. My language skills seemed to be coming on slowly. I still found it hard to follow simple instructions and to think about more than one thing (more than usual!) as evidenced by my attempt to do these basics tasks. I can reminder having to think so hard for each question about what the words were instructing me to do.

Seizure Saturday

It was at this point the post operative swelling caught up with me. As the name would suggest this is the day were I experienced numerous seizures. Krisi had a friend staying over for to give her much needed emotional support and they both came to visit me before heading down to a grab Coffee. Then Corrina visited handing me the chunkiest bar of chocolate I had seen in awhile. (Corrina is a fellow optom and eye geek so we get on well!)

At some stage during our conversation I got a sinking feeling as I began to become aware of my right hand side feeling funny. I acted normal for a bit, feeling like if ignored the problem it would go away. Nope. The feeling grew stronger, especially in my face, which began to spasm and twitch and uncontrollably every second or so. Little did I know that this was the first of what proved to be multiple focal seizures the longest of which lasted 6 minutes. I started to panic initially as whole side of my face started twitching uncontrollably. The last time I had one I had lost consciousness right away. But this was different, it lasted 3 minutes or so but it seemed longer, my breath came raggedly and my body shook with adrenaline, not knowing how to respond.

Corrina let the nurses know I was having ‘a bit of bother’ The nurses rushed over to me and called for a Dr to attend. By the time the Dr arrived, I had stopped having my first seizure, managed a couple of minutes of calm before I proceeded to have another one right away. This was getting old very fast. I just remember looking at Corrina and felt almost embarrassed in an awkward way as she met my eyes with my face spasming uncontrollably (We laugh about it now!) It was during this time that I learned not to panic and realised that I could at least control my breathing. I focussed all my attention on my breath and noticed as soon as I did this the frequency and intensity of the spasms diminished significantly. I continued to focus on the breath and before I knew it, it was over. From that point they gave me a higher dosage of anti-seizure meds and I’m pretty sure they added a sedative of some kind too.

Due to my recent seizures the Dr’s wanted to have take a look at my brain to check it was settling down and make sure there was no bleeding. So I had yet another MRI and CT and was relieved to be told there was no bleeds and the brain looks normal but inflamed as can be expected two days post surgery. The seizures had most probably been caused by the inflammation from an irritated brain and typically peaks around the time I had my seizures.

Unfortunately, as a direct result of the seizures my language progress had suffered a setback and I was back to struggling with yes/no questions again and I had lost some function of my right hand with the hand now feeling extremely clumsy and numb at all times. I was encouraged to keep using the hand as much as possible, so tasks like feeding myself and brushing my teeth brought with them an extra challenge. (It was an effort to use my fork, feeling similar to the first time I had tried to use chop sticks.)

That evening I experienced my lowest point of my time spent in hospital. I was very unsure whether I would make any significant improvement having experienced a setback and it was fair to say that In the quiet of the night and I felt a bit sorry for myself allowed myself a good cry. By the time the morning arrived though I was back to my usual (positive) self and could think of countless scenarios where people would take my position over there’s in a heartbeat. Basically I had managed to reframe the situation to… Yes, yesterday wasn’t ideal but I’m going to work hard and commit to as much speech and language therapy and occupational therapy as I needed to make the as full a recovery as possible. There are loads of other people out there who have it way worse than you so man up and pull yourself together.

My progress with this PMA (positive mental attitude) was good and luckily I had no more seizures. Dr Iyer and Raenette came to see me on the Monday and they heard about seizure Saturday. They were still positive but did note the setbacks I had with my hand and the speech. Their message was that is was still early days and the recovery would be slow but steady. They cleared me for discharge on the Tuesday and planned to seen me in approximately 6 weeks time for my histology results to find out What ‘bob’ was made off. It was awesome that they gave me a private room on the monday evening as they considered me to be lower risk of having an issue and I was able to unwrap my bandages too leaving the coolest ever hairstyle underneath. Also, the OT’s did visit me to make sure I would be able to manage at home, they even got me to make myself a cup of tea and a bit of toast for myself. My first job was in a cafe so I was fairly confident I could manage that, but in my current state I found more challenging than you’d expect. The part I found most tricky was to remember the order in which I needed to do things, I had a hard time trying to piece all of the micro-tasks together. I passed but was glad there wasn’t a paying customer waiting as there would have likely been a complaint having had the slowest service ever!

One thing I’ll say about hospital discharge it that it takes FOREVER. I’ve only been discharged twice from hospital so I’m no expert but in my experience if they say a time scale for your discharge multiply it by two and add 40 minutes to be sure. It was my one complaint in an otherwise great system and would try the patience of a saint. But in this case the Saint was and increasingly grumpy 32 year old male on steroids. I was so glad to return home but my journey towards recovery had just begun.

Week 1 – 4 : Post surgery

These were by far the most frustrating weeks of my recovery. Mum and Dad came over immediately afterwards for a couple of days staying my neighbour’s empty flat (Thanks Russ & Lucille.) We would go out for walks everyday and I’d take them around the centre of Bristol and the harbourside. I noticed immediately that my stamina had been affected and then I remembered them telling me I’d lost a pint of blood during my surgery. (Which wasn’t to bad actually, considering.) So it made perfect sense as to why I was so tired after a little walk. Normally I could run for miles. I got around this with with frequent naps and resolved to build on this level of activity everyday. The naps were also great for my brain which needed sleep more than ever otherwise I’d be a zombie with the fatigue. It was like I was a toddler again and people could physically see me fading by how I responded to their questions! I was still mixing up yes/no questions and saying yes when I meant no and vice versa. I could only to contribute to proceedings in one or two word answers and occasionally I would the say opposite of what I would mean. Mum was there to watch when my practice nurse removed 30 something staples from my head leaving this pretty little scar. (Ignore the hair) The removal didn’t hurt much at all surprisingly.

I was relieved that in week 3 after surgery, almost overnight the function in my right hand returned with it feeling less and less numb and I could grip things seemingly with equal strength and my dexterity returned. This was a great sign and a really important milestone for me. I put it down to the inflammation subsiding. I could text and type again without feeling like anything was holding me back. (Apart my spelling, my spelling has always been dreadful!) The fourth week I spent up with my brother’s family playing Pokemon games with my Nephew’s and struggling to write my second blog entry ‘F is for follow up.’ My brother did tell me eventually that no one had warned him about Bristol’s clean air zone and he missed the signs and so he managed to rack up about £300 quids worth of fee’s in his journeys up and down to see me, all of which arrived in the post 4 weeks later! (Nightmare!)

I had put in some graft with speech language but had not seen the results I had hoped for yet. I was fit enough to return to the gym and at that point had been walking more and more every day. For some reason, possibly related to giving less fucks I no longer cared about what my previous fitness levels were or competing with myself. All of that had went out the window after being through what I had. So again with a new sense of freedom I got back after it. Mainly I hit the rowing machine and treadmill to build my stamina. There was something very humbling but cool about starting from scratch again and not giving a fuck. My Progress was exponential and I was able to do more and more every day.

Week 5-8 : Post Surgery

During week 5 my sister Laura came over and she was great company. She is into Yoga, so we practiced together and done some breathing exercises. My referral for the speech and language services had come through and I was pleased to meet a lady called Ester who would be helping me get back to the best possible level of communication. She would be coming out to my home ocne a week to continue this aspect of my rehab. Speaking of which, my language really came on during this time. I suddenly felt like I could form sentences again and get more complex messages across. It was more of a time thing and I think very much related to how I had slept the night before, Everyone I met told me I had made leaps and bounds since I last had seen them. There was no doubt I still had a long way to go and was possibly weeks-months away at this rate from discussing more complex things like the various types of eye disease for example, but there was an definite improvement which gave me hope that I could progress further.

My busy time continued and I spent St. Paddy’s day drinking 0% Guinness which surprisingly isn’t too bad with Jackie and Ben. They have two wonderful children, Addie and Theo and they are so funny and cute. Pretty much every 2 weeks I would meet Lynne and/or Gerard for a coffee and keep them the loop with my progress and I got to enquire how things were at work and if they were managing to take care of all my patients ok.

The Alcohol free gang – Wild bunch!

Next my other sister, Sinead came over for the weekend, we traveled to Bath for the day by train and I took her to ‘Severn lucky Gods” as she absolutely loves Japanese food. I’m sure she felt like a lucky god as it happened to be Mother’s day so her way of spending it was handing her kids to her husband to look after (Thanks Shaun) and visiting me in Bristol to eat Japanese food!

It was around week 7 that I went on a run with Corrina, you know, the girl from the seizure Saturday debacle! She was training for an Ultra Marathon (crazy woman) at the time. It was a rainy day in Bristol weirdly making it more fun. We ran and talked at a slow pace so we could hold a conversation. By the time we had both updated ourselves what was going on currently in each other’s lives we had run a fair distance. When home I checked my Garmin and it showed that I had run 17.7 k in total that day. A feat which I couldn’t have dreamt of mear weeks ago. God only knows how much Corrina ran but she was still going when I left her!

It was around week 8 post surgery were I made a surprise appearance to a work away day. These are training days where various talks are put on. It was fantastic so see all the familiar faces and some listen to really wonderful talks. I was able to contribute a little and felt my speech getting better and better, although at this stage it was very rest dependent.

I also took the plunge and hired a Personal trainer, a fella named Cameron. This whole experience has taught me ‘Your health is your wealth’ and anything that keeps you fit, healthy and active is a worthwhile investment. I’m currently doing a 4 day split. It’s given me the confidence to lift heavier than I would otherwise feel comfortable to, and work much more closely toward complete muscle failure, all the while Cameron ensures my form’s on-point and corrects it if needed thus keeping risk of injury to a minimum.

DAY 1: Chest and triceps	DAY 2: Back and biceps
DAY 3: Legs	DAY 4: Shoulders and Triceps

Week 9-12 : Post Surgery

SO .. we are almost fully caught up. The next chapter will talk about what happened during this period which includes my post surgical review with histology results and the dilemma that this brought. Stay tuned and as always thanks a million for the kind wishes & words of support!