The ‘T’ Word – Part 16 – It’s not you, it’s me!

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We all know that we change over time. When I look back at my teen years I cringe really. I was a typical hormone fuelled and self centred teenage male. How I ever gained and kept a girlfriend is beyond me! It certainly wasn’t my dress sense, style or coolness. I was never in the ‘cool kid gang’, My friends were kind and made me laugh, that was the prerequisite for being a friend of mine, not coolness or being in the right group. We never got any satisfaction by picking on people, we had more fun including those sort of people into our friend group.

When I think about my teenage self and my girlfriends, I want to go back in time and give myself a slap. Now I am the father of two daughters, I realise how much hurt they would have felt at my casual loss of interest and just suddenly disappearing off of the scene, bastard. I think back to the girls who were my girlfriends and I think how could I have been so selfish and mean to them. Bloody teenage boys.

As I got older I have always made treating people decently as my priority, even at the cost of my career on occasion but despite this when my wife and I first moved in together I was still suffering from lazy Mummy’s boy syndrome, and had to undergo some personality and habit correction therapy to stop me being lazy and expecting to be waited on hand and foot.

Following this therapy I learned to cook and clean. My one attempt at using the washing machine ended in some unplanned colour changes so I was banned from using the washing machine (Phew, that was close but I didn’t do it on purpose).

So I live my life now trying to be considerate to others and to be aware of what is going on around me…..however…..

Personality changes seem to have happened!

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As I write, I am seven weeks post operation and my family think that they have noticed some changes in me following my craniotomy. I was warned that my short term memory might be affected but the operation has had an unexpected consequence.

A few weeks ago my Mum in law passed away. We have lived with her for two years since retiring and of course I have known her since meeting my wife who I met 41 years ago. I considered us close and yet I was unable to cry or even mourn properly. I felt that I needed to but something stopped me, as if I had lost the ability to be upset or at the very least lost the ability to empathise.

It’s not a nice feeling and on occasions I feel an almost tangible numbness in my brain where I should be feeling upset or sad. I have had the privilege of being with both my Mum in Law and my Father in Law at the end. I sobbed like a baby when my Father in Law passed and felt a terrible sense of pain and loss. I didn’t think any less of Mum in Law and yet I couldn’t cry. Of course I felt sad but there was something blocking my ability to show my emotions. My wife said that at the end, I seemed distant from the situation while I thought that I was very much ‘in the room’. I guess she meant that I wasn’t as upset as she would have expected.

I am now trying to be aware of situations and my reaction to them. It feels a little like having your head stuffed with cotton wool, a fluffy, fuzzy lump of nothingness where my emotions used to be. Will it ever change? I don’t know and have not read anything about if recovery from this kind of effect is possible. Can my brain rewire itself, I hope so.

The ‘T’ Word – Part 15 – A Glioma is for life, not just for Christmas!

How I discovered that Gary the Glioma is now my ‘forever Friend’.

This week I had a follow up appointment to my recent Craniotomy & De-bulking of Gary the Glioma.

I was told by my Neurosurgeon right back at the start of this journey that Gliomas are infiltrative and that he would not be able to completely remove all of the bad cells, however part of me still hoped that Mr Mathew would say ‘got it all’ as was the case with my Meningioma, which in theory at least, should never return, but true to his initial assessment, he pointed out that they had got a good margin around my tumour which gives me a good chance and that it was a Grade 2 Oligodendroglioma.

So in summary here are the reasons that I am still feeling positive about the future.

  1. It is a low grade tumour
  2. It was very slow growing so it could be 10 years before it needs dealing with again (so I will be 70).
  3. Because of where it was (my right frontal lobe) I can have repeat operations without much risk of harm to my brain.
  4. I can have repeat operations. As Mr Mathew said, if it comes back I will take it out again (he has a patient on a 3rd operation)
  5. I’m still here, I could have had a grade of tumour that would have taken me out by now, let alone in a few years.

So it looks like Gary & Mr Mathew will feature in my life for many years (Mr Mathew is fine, not so keen on Gary sticking around) and Gary may well be what finally kills me but something has to. As long as he never changes grade then he might not be my mortal enemy in the end.

With all that said, I might just as well pack as much fun into my life as possible because it all serves to remind me of how precious (and sometimes short) life can be and I am not going to waste it on Gary the Glioma, anymore than is absolutely necessary.

One thing that Mr Mathew did say was that in his 16 years as a Neurosurgeon he had not seen a patient who had both a Glioma and Meningioma. I Guess I’m just lucky that way lol

Back inside despite good behaviour!

I have been back in the Leeds Royal Infirmary as my operation site had become slightly infected and I was suffering with really bad head pain. After a few days care back on Ward L25 I’m all sorted again.

If you need your faith in humanity restored, a stay under the care of the NHS will do it. The team here in Leeds are amazing, professional, fun, friendly and caring. Even at stupid o’clock in the morning

Just waiting to be discharged and head home. This part always seems to take so long.



It’s not always easy to get your recovery sleep in as the snores and other assorted low frequency noises rumble around the ward like thunder on the African savanna! I

t can be a little bit like those BBC wildlife documentarys about Africa in the dark, complete with little animal howls of men pain! The observations tablets computer screens provide an authentic blue light like a bright African full moon.