The ‘T’ Word

The ‘T’ Word Part 18 – Celebrating My First Craniversary with Imposter Syndrome!

Photo by Ylanite Koppens on Pexels.com

So here I am, heading towards my the first anniversary of my Craniotomy, a time for celebration I guess; but I find myself feeling very reflective and also feeling a bit of a fraud. I continue to read the battles of fellow Brain Tumour Warriors on Facebook and feel guilty that I feel so well at the moment.

I am of course immensely grateful that I have fully recovered from my operation to debulk Gary my Glioma, I definitely feel a bit of an imposter when telling my story because thankfully (for now at least) it has run out of steam.

A good friend of mine, on a recent evening out for dinner, asked how I was and it took him back when I announced that my Tumour is incurable and in that moment my feeling of being an imposter disappeared. I reminded myself that I am not cured, I am temporarily fixed so that I can continue my life but I have guilt when reading about those who have passed and those now living with disability because of their tumour, surgery or both.

So I now need to go back to the teachings of the stoics and find the gratitude for my good fortune and not feel that it came at someone else’s expense.

As we come up to my Craniversary on December 20th, I need to remember what my wife and I have been through. We lost Mum in Law suddenly to Diverticulitis just over two weeks following my operation.

Andrea had to park me to the side slightly whilst dealing with her grief and the practical issues that have to be sorted after a death in the family.

In addition just as funeral preparations began I had to go back into hospital due to an infection in my operation scar. This turned out to be quite good timing as I was cared for, fed and pampered by the amazing team on Ward 21 at Leeds General Infirmary, so I was suddenly not my wife’s immediate concern.

I am running 5k three times a week now and whilst I can’t beat my PB of 33 mins, I am getting slightly faster and can constantly get a 34 minute 5K. Brain fog has completely gone and I am able to do little bits of Copywriting again and other freelance projects.

I recently did some telemarketing into the Netherlands but I suffered a short burst of anxiety and mild panic attacks, so had to stop the calling. Thankfully they have passed now but I guess that they were part of my recovery.

I should get my driving licence back in the next few weeks and I think having that independence back will complete my personality refurbishment. I will try and stop this odd feeling of not really being a Tumour sufferer and carry on trying to offer my support wherever I can to other Tumour Warriors as they start their battle.

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.

Merging my podcasts.

Photo by George Milton on Pexels.com

After some thought I have decided to merge my ‘Brain Tuner’ podcast with ‘Gary, Marty and Me’. The Brain Tuner started out as a spotify only podcast and was to include music (hence the ‘Tuner’ element of the title) but feedback was that the music was distracting and listeners just wanted to hear my thoughts on my brain tumour experience so I kept the name but dropped the music which then released it to all of the other podcast platforms.

I host with Spotify which is easy to do in most respects however Spotify (formerly Anchor) does not make it easy to host multiple podcasts so I am going to merge the existing episodes on The Brain Tuner into Garry, Marty and Me.

The brain Tuner is unscripted thoughts, just me and the microphone, whereas GMM is based on this blog so is more structured however I feel that the unscripted episodes will fit in to expand the story being told by GMM and will make production and managing my Podcasts much easier and quicker.

If you are a subscriber to The Brain Tuner, then thanks for your your support and I hope to see you over at Gary, Marty and Me.

Stu x

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

Photo by Pixabay on Pexels.com

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!

Photo by cottonbro studio on Pexels.com

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’.

Photo by Anna Shvets on Pexels.com

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.