The ‘T’ Word Part 2 – My First Neurosurgeon Appointment – Now it feels real!

Fortunately, hospitals don’t scare me.

In fact they are familiar ground as although I have never been a health worker, I met my wife, Andrea, when I was aged 20, just as she finished her last year at the Leicester Royal Infirmary School of Radiography. So, for our entire time together, apart from when our children were babies, she has worked in the NHS as a Radiographer.

Back in the early 1980’s hospital security and access were much more relaxed than in these days of COVID19 and terrorism.  Due to this I was able to have the opportunity to keep Andrea company on lonely night shifts. I even spent a Christmas Eve night shift with her, sitting in the High Wycombe General Hospital X-Ray department.  I became quite efficient at reloading film cartridges and I clearly remember watching the dawn break on Christmas morning through the window of the X-Ray department, listening to the gentle hum of the film processors.

One occasion that sticks with me was when one day, after work, I was sitting in the film processing room waiting for Andrea to finish work. I was a smartly dressed, fresh faced young salesman, sitting with my open briefcase on my knee doing some paperwork.  Into the room came two equally fresh-faced young doctors who stuck an X-Ray image of someone’s leg up on a lightbox and began debating if it was broken.

I guess that because of the way I was dressed and the fact of where I was sitting, they thought that I was another junior doctor, so they turned to me and asked if I agreed that indeed it was broken.  For reasons that I still cannot explain, instead of saying “I’m not a doctor”, I blurted out…….”Yes!”

So if you are reading this and spent weeks in plaster unnecessarily in 1983…..You have my heartfelt apology!

The only time that I have been in hospital myself was after returning from New Zealand in 2017.  On my first day back at work I was taken ill with what I later found were called rigors, with my teeth banging together and uncontrollable shivering. The first doctor that I saw was quite dismissive until discovering that on our way back from NZ, we had a 16-hour stopover in China.  Suddenly I found myself in Coventry hospital in strict isolation.

At first it was believed that I had Bird Flu (very nasty), later re-categorised as Rickettsial disease (very rare) & finally identified as Cellulitis (very treatable).  For a couple of days few people were able to visit, but eventually quarantine was eased, although fortunately I was allowed to keep my private room.

Once I started to feel better, I started to get regular visits from my consultant who was accompanied by some student doctors. Apparently, having patients with a tropical disease who feel well enough to talk was unusual, so she recruited me to help to train these student doctors by letting them question me about my illness but I was not to offer any information that they did not specifically ask for.  They would then make a diagnosis. I spent a happy afternoon with them.

The next day as I watched yet another repeat of ‘Top Gear’, the consultant arrived with another trainee doctor and asked if the doctor could practice a full health assessment as done on newly arriving patients and I was again glad to help and glad of the company.

I was so happy with the care that I received at Coventry Hospital that I left a big tin of chocolates on the nurse station desk as a small token of appreciation, and the experience cemented my respect for the NHS staff.

So, what about my upcoming hospital time? 

Well, I recently received a letter confirming that my tumours are to be treated at the Leeds General Infirmary and given a date to meet my neurosurgeon.  My wife immediately felt on home territory when we walked in, even though she has never worked at this hospital.

This was the first time that I really felt anxious since the first phone call telling me that I have tumours.  I think that discussing things with the surgeon somehow made me appreciate the enormity of my situation.

After a short wait we were called in and sat in front of my neurosurgeon’s desk which included an impressive multi monitor computer set up.  The screens showed various cross section scans of my fat head.  The surgeon introduced himself and explained that his speciality is Meningiomas and that a different surgeon would handle my Glioma.  He called up one particular image which showed a view down onto my spine and you can clearly see my meningioma squashing my spinal cord into a small crescent shape.  As we already knew, this is the cause of my symptoms.

He explained that my case had been discussed in a multidisciplinary meeting and it was felt that my Meningioma (now named by us as Marty) would be removed first, before my Glioma (Gary).

To get Marty will require the surgeons to cut a hole in my skull base, just behind my right ear and also remove a piece of my top vertebrae.  As Marty is pressing up against my spinal cord, they dare not get too close for fear of damaging it and crippling me, therefore they will have to leave a small tail behind, which can be treated with radiotherapy in the future, should Marty try to make a comeback.

Whilst he was showing us the images, I became fascinated with one in particular which was a vertical dissection of my head. I realised that I have exactly the same profile as my late Dad, complete with the classic Hannah ‘Roman Nose’!

One thing that makes Marty the priority is the fact that in the experience of my surgeon, whatever symptoms you have when the Meningioma is removed can often remain, although no new symptoms should develop.  In my case, this means that my numbness may continue but I can live with that.

As positive as I am, there is no escaping the risks that come with major surgery and the procedure to rid me of Marty is so complicated that both of LGI’s Meningioma Neurosurgeons will carry out my operation.  Any operation carries the risk of complications that could kill me but despite all of this I am as keen as ever to get started.  It has to happen, so the sooner the better.

During this first meeting, another surgeon popped his head through the door and as it happened, he will be my Glioma surgeon.  By a stroke of luck, he had time to fit us into his schedule, so we took the opportunity to find out more about my Glioma, Gary.

The Glioma surgeon called up my scan in his consulting room and showed us exactly where Gary is located.  “The good news” he explained “is that nothing much goes on in that part of your brain”. A bit rude, I thought! He went on to explain that none of my key motor functions are controlled by this part of my brain.  We were told in more detail that Gliomas are what is called ‘infiltrative’ in that its bad cells are mingled with good cells, making it impossible to remove all of the bad cells.  This presents a challenge as all Glioma cells will always eventually turn nasty.

He used the analogy of having 10 bad smarties.  The surgery will aim to remove as many as possible, e.g. leave only 3 bad smarties.  He said that in all probability, these remaining bad cells will behave themselves for many years, although they will get me in the end if nothing else does first. In his opinion and that of the MDT, I have a low grade (slow growing) Glioma but he has organised a second MRI scan to ensure that it is definitely low grade and slow growing.  My wife asked him “what if it is a high-grade Glioma”?  The consultant paused for a moment and replied “Then we are talking prognosis and timescales”, that was quite a sobering moment, and as I write I have yet to have the confirmation that Gary is behaving.

According to the surgeon, I am unusual in having two completely different types of tumours at the same time, well lucky me, I guess.  “We don’t give loyalty points for having more than one” he pointed out, so no free café latte for me then!

So, we now know what to expect from the surgery. Starting with Marty, I will spend at least 6 days in hospital and 6 weeks recovering at home if all goes to plan (and how often does that happen) and once I am well enough to face more surgery, I will undergo a craniotomy for Gary with a similar recovery time.  It looks like 2022 will be pretty much fully booked.

To close this post off I would just like to say to anyone who is facing time in hospital (as someone who has spent a lot of time with health workers) that from the person that cleans the ward through to the surgeon that does your operation, treat them all with courtesy and respect.

This is mainly because they deserve it for being dedicated and hardworking, but also because if you don’t you could well find that you are always last to get your food and drinks and you are waiting a long time to get your ass wiped.

As for radiographers, I have been married to one for 36 years. They are really crazy and they have real ray guns, so be nice!

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