Marty the Meningioma – Parting is such sweet sorrow.

Hi all.

I wanted to share a brief summary of my time in hospital, in the hope that it helps remove the worrying unknowns about operation day and also to try and change your mind towards the hospital environment itself.  Knowledge of what to expect from friends on the Brain Tumour Charity Facebook page, plus my own personal experience of my wife spending her career working in the NHS certainly helped me.

And it’s all systems go

I had a busy weekend on the run up to my operation because of my second tumour. On the Saturday I went to a small hospital in Otley for a final PCR test, following which I was to isolate. However, my Neurosurgeon for my Glioma, Mr Mathew wanted an updated scan to ensure that Gary the Glioma was being a good boy, so despite isolating, on the Sunday I attended an external MRI scanning unit based at Leeds St James Hospital but apparently run by a private contractor. The unit was immaculate and the staff super-efficient and friendly so I was not there for long at all.

Monday was my last day of normality in some respects, so I slowly packed my bag with essentials such as chocolate Hob Nobs, Pringles, Whittaker’s chocolate from New Zealand and a Baby Yoda hot water bottle, provided by my kids (sadly bag size limits meant that Baby Yoda couldn’t come with me in the end), oh yes, I took some clothes and toiletries too!

I was quite emotionally drained by Monday night but also keen to ‘get this done’.

My admission time at the Leeds General Infirmary was not until 12pm due to some audit that was happening but it meant that by getting up just after 5am I had time for one last big coffee and some toast before my fasting period started, although these days you can at least drink water until 2 hours before the operation.

The admissions ward is still strict on visitors so I had to say goodbye to my wife at the door and I will not pretend that this was easy, in fact I had kept really calm through most of this but saying goodbye upset me and in the end, I had to go off quite quickly.  Once that was done though, I pulled myself together and got on with being Mr Cheerful.  The admission team were great, friendly, calming but direct in that even at this point they did not have a definite ICU bed for me.

Thankfully it was only a short wait before confirmation came through of the bed and then it was ‘game on’. Lots of forms to go through, questions about health etc. but that was soon done.  I then had a steady stream of visitors starting with Mr Sheikh, my Neurosurgeon for the operation who was clearly delighted that we had a go.  After a brief chat he headed off to make final preparations on the theatre.  Due to my surgery being quite complex, Mr Sheikh was working with a second Neurosurgeon and he popped along to get up to speed and do a quick assessment of my physical state and then he too headed off to the theatre.

Finally, my Anaesthetist paid a visit, he was very good at explaining what I was to expect from being anaesthetised, what pain I might be in after the operation depending on what position I would be kept in for 5 hours (even giving me some practical demonstrations!) and then doing the final sign off.  Really great support, they went to great lengths to make sure I knew everything that I needed.

I’m not sure how much longer I waited, not long, before the admissions nurses kitted me out with a couple of gowns for the trip to theatre, locked my bag away for transfer to the ICU ward and then sat me back down to wait for the Nurse who was to take me to theatre.  They were really good at reminding me to keep messaging my family until the last minute, even encouraging me to call my wife right up to heading to theatre.

Theatre is ready

So off we went, me feeling like my bum was on display to all at LGI (it wasn’t) and I entered an almost euphoric state that this was it, the beginning of the end for Marty the Meningioma.  As we arrived at the room where my anaesthetics would be done the nurse and I were laughing about me being attention seeking having two tumours, so I arrived chuckling into the room.

I received a big friendly “hello again Mr Hannah” from my Anaesthetist who then took the time to introduce his team. “Just hop on the bed, relax and leave the hard work to us” he said as his team went into action putting in several cannulas, one in each hand and one at my ankle.  I was then connected up to two machines, the first of which would essentially make me relax.  “OK Mr Hannah, I’m going to begin the main anaesthesia now, it should only take a moment before………..” Gone!

Recovery and ICU

For me it was instantaneous but for my family it was 5 hours of stress and waiting, your family definitely has the tough job from the moment that you go under!  When I first woke up, I apparently couldn’t recognise Mr Sheikh or my ICU nurse and I have vague memories of my weedy voice answering them followed by me being violently sick! I then passed out again for a while.  When I next woke, I felt OK, burnt out but OK, quite cheerful in fact.  This time I did recognise Mr Sheikh, who had just spoken to my family and let me know that they were fine too.  With that I dozed off into a deep sleep.

Anyone who has stayed in hospital knows that good sleep is not normally on the agenda, with regular observations being done (blood pressure etc.) but that’s the norm. Also, sleep is difficult when you have an enormous bandage on your head, with what I believe were strategically placed knots to keep me from sleeping on my operation site, this could be co-incidence but it worked. I spent a day on ICU being very closely monitored and initially had a feeding tube (which was put in when I was under) in case my swallow function had been affected, this meant…..no food and worse, no coffee. Luckily, the specialist for this came along quite early on my first day to carry out the swallow test.

She carefully set out a glass of water, a tiny tub of custard and a packet of digestive biscuits, with my challenge being to test small bits to see how swallowing went.  She carefully broke off a crescent of biscuit; I think with the idea that I nibble delicately along this strip and try swallowing but I must have been hungry because it went in and down in one!  “OK” she said after a short pause and a chuckle, “not quite what I had in mind but you passed”.  She left me the custard as a reward and a few minutes later I was tube free and supping a coffee and dunking the remaining biscuits….bliss.

HDU and Phantom Poo

Later I had a CT scan and the results looked great, in fact they are pretty sure that they got 100% of Marty out.  This meant that I could transfer to the High Dependency Unit, a ward where you are still looked after closely but it is no longer one to one care as it is on ICU.  I soon settled in there and was reunited with my bag and phone so I could finally talk to my wife and family. 

My night on HDU was a mixed bag. I didn’t expect to sleep and didn’t.  I was feeling very weak and mentally fatigued with the after effect of the anaesthetic and think I was hallucinating slightly because in the middle of the night I became convinced and fixated on the belief that I had actually soiled myself! Eventually I could resist no more and pressed the nurse call button.  The duty sister came over and could tell that I was a bit confused and distressed but after a quick check assured me that I was fine.  They really do not get paid enough, do they?

The next day I felt great if I’m honest and spent the day resting of course but I felt up to sitting out of the bed and even having a very careful shower.  That was an event in itself as the shower room is in the nurse office so that they can hear and react quickly to what is going on I suppose, but as they would not lock the door for safety, it meant that this two-way door would not need much to push it open.  I sat for my shower but had a close call getting out when; covered in soap suds, I lost my balance.  I reckon that if I hadn’t caught myself, the suds would have let me slide naked through the door, across the office and gently come to rest at the HDU sister’s feet like a mottled pink beached whale and they definitely do NOT get paid enough to see that!!

Also, by now I was eating and I like hospital food if I’m truthful.  It’s probably the same as with in flight catering, you enjoy it simply because its something to do, but I did have a cracking chilli con carne!

An Unexpected Journey

The following morning, I was up again and was waiting to have a coffee with my wife and eldest daughter, Rebecca.  Although there were no visitors allowed on the ward, I was allowed to go off the ward to meet them, so we were going to meet up, however my duty nurse came over and let me know that they were thinking of letting me go home.  Apparently, I was so bright and cheerful and my observations so consistent that it was looking like I didn’t need to occupy even a standard ward bed (my next destination according to the plan) so a series of visits began.

A physiotherapist took me for a walk and was happy that with a stick I was mobile enough.  An occupational health specialist then took me for another walk and got me to make her a coffee, which we sat and chatted over (cushy job she has!) and she then did some cognitive tests which apart from the mental arithmetic (which I couldn’t do before the op anyway) I passed easily.

Finally, the wonderful Mr Sheikh reappeared and said that he was happy for me to go home too, so my wife got a very unexpected call to say “come and fetch me”.

In total I was only in for 48 hours, which was great and I am aware that I was very fortunate, however my experience was a good one, made possible by dedicated and patient people, who were completely focussed on looking after us.  I don’t just mean the Surgeons, Nurses, Radiographers etc.  but the catering staff who were always cheerful and friendly, the ward cleaner who even though busy spared a moment to say hi and wish me well.  All these people come together to get us through what is likely the darkest time in our lives and to get us out the other side as well as is possible.

Hospitals and Happiness

Just to finish, I know from chatting on the Tumour Charity Facebook group, a lot of people are frightened by the unknown of the hospital, and see it as this awful place where this scary thing is going to happen to them.

My wife has worked in the NHS her whole career right up to her retirement, it was her second home and she does miss it, she wouldn’t feel like that if hospitals were awful. Our eldest daughter is a scientist based at Addenbrookes in Cambridge, she loves her job and like my wife just sees the hospital as a workplace not somewhere to fear.

My advice is to try and see it from the staff point of view, it’s their office, it’s where their friends are who they have a laugh with every day, where they organise their birthday parties and have cake on their friends’ birthdays.  It’s where they comfort their friends on down days and screech with laughter at stupid selfies and inappropriate jokes. It is somewhere that is friendly and familiar not a house of horror.  They see the hospital as a positive place dedicated to being there for us in our darkest hours. 

I hope this helps to take away some of the mystery of what is to come on your operation day and to make the idea of hospital less threatening.

Stu x

The Brain Tumour charity has been a great help to me since my diagnosis. They have a podcast which is always of interest to people with tumours and their families and also have the ‘Brian App’ ( yep that is spelt correctly, it is ‘Brian’) which offers advice and the ability to track your symptoms, appointments and treatments.

My Brainstem Playlist.

Since my diagnosis I have found myself looking at life differently including reflecting on my past life. Music has always been important to me so I decided to put together a playlist that includes songs that I love, songs that remind me of places and times in my life, and tracks that I have discovered more recently that help me to keep positive. I hope it’s something that you might enjoy too and always play in ‘Shuffle’ mode.