Quote of the Day:
‘I believe in intuition and inspiration…
At times I feel certain I am right while not knowing the reason’ – Albert Einstein
If the absolute worst that could happen to you is that your are wrong for following your gut and body that something isn’t quite right despite what others are telling you. Then surely that’s a risk worth taking? – Rachel Cummings
The start of the subtle changes
It was August 2021 we had just been on holiday to Wales for a week which proved to be rather more stressful than holidays should be possibly be. I won’t go into too much detail but when I look back on all the events that had happened in the months prior, I wonder if they may have triggered stress and subsequently my brain tumours. This is something I will never likely know but something I don’t ever intend on finding out. But it is why I feel so strongly that living a stress-free life is key to health (both mental and physical).This month proved to be probably one of the most traumatic months in my life to date. Despite my blogs I have never gone into specific detail about all the events that happened up to and during my 2nd diagnosis of cancer. For me I avoided it because I wanted to focus all my energy on my health and delving too much into this part of my life brings with it negative energy, anger and upset about all that I have been through and what could have happened if I hadn’t trusted my gut.
It’s only now just over two years later I feel comfortable about sharing these thoughts, the events, the subtle signs in the hope that if someone is reading this, they might find similarities within themselves or a friend/family member that could possibly lead to an early diagnosis (not that I wish for anyone to go through some of the things I have experienced). It’s sort of facing my demons too. Even typing this a wave of emotions are coming over me which is probably a good sign to let it out. Either that or it’s that special time and Ste will be in for a treat of mood swings, suggestions of divorce, death threats and crying. But that’s a totally different blog maybe (perrimenopausalandme!).
A gut feeling
After the holiday I started back at work again (working from home) and the first sign to all this (in my opinion to the appearance of the brain tumours) was that I couldn’t remember my log in details to my works computer. Now if you’re like me any more than 1 weeks break for work and you struggle to remember what you actually do for a living never mind your password. Now I had tried to be compliant for once and changed my password on the recommendation of IS security training. Problem was I couldn’t remember the new one! Ultimately having several attempts and locking myself out.
I managed to phone the IT department at work who unfortunately couldn’t unlock it remotely which meant I had to get the train to Manchester to get it reset. Whilst in the office thankfully I decided to tidy my locker as I had hardly step foot in there since COVID and it was my birthday the day prior to the offices being shut so I had some presents and food which no doubt the resident mice would have loved if I hadn’t removed them.
It was so strange walking along the office floor where once so many people had worked together. I remember thinking I miss that (I still do). Despite the long commute and opportunity for work/life balance I have to say there is a lot to be said for PROPER human connection and talking to people face to face to resolve things. Plus, you can waste at least a good half hour in the kitchen talking about random stuff to the poor bloke that wanted to grab a quick coffee, which I was very good at.
Anyway, I went back downstairs and was chatting to someone in IT while they sorted out my laptop and this time, I changed it to something I could remember…. (PASSWORD!).
This was the same day I was expecting a phone call from Professor Board about my latest CT scan. Typically, I got the phone call whilst on a packed train so couldn’t really hear properly and didn’t really want to start asking random things. She said the CT scan results were great asked if I was feeling ok, I just said I was tired and she said she would make another appointment for 6 months’ time. Little did I know that approximately one-week later things would dramatically change for the worse.
The subtle signs
I was very busy at work and if totally honest had too much on. I was definitely spread too thinly over too many different things multitasking from one thing to the next which didn’t help. It was month end reporting which is always a busy time especially when everyone is on annual leave. I remember messaging a colleague saying I had really bad headaches and I was struggling she suggested it might be the menopause. I couldn’t concentrate at all I had brain fog. I remember I had to put a certain meditation music on just to write my reports. On one particular occasion I was on a team call with a couple of senior members and when asked a simple question I just got really upset because I couldn’t recall simple events just a couple of weeks ago. I later wrote an email to apologise and explain as it was out if character.
I wasn’t sleeping at all. I would be up at 2/3am in the morning tired but not being able to sleep. I was starting to struggle with my movement and it was like I had lost my spatial awareness in that I was bumping into things at home that had been there for ages i.e., kitchen units, worktops, doors. I remember one night falling out of bed because I couldn’t work out where I was. Ste as empathetic as ever woke up and said what the f*ck are you doing as my head was on the floor and legs akimbo next to the bed. I think he thought I was just messing about.
As days passed my speech then started to get worse it was like I wasn’t in control anymore. So, I phoned the doctors and had a telephone conversation, told him my symptoms and he agreed to a face-to-face appointment with me a couple of days later.
On the face-to-face appointment Ste came with me initially but it went on for that long that my mum ended up having to take over sitting with me as Ste had to go back to work and I was unable to drive. A few days prior I had nearly crashed my car into the kebab shop as my foot just wouldn’t move off the accelerator when my brain told it to. This really scared and upset me as I knew I wasn’t in control. Thankfully I had the sense (for once in my life) to tell Ste and didn’t drive the car after that. In fact, I haven’t drove a car for two years now which I really miss. I lost some independence, but one day hopefully I can drive again but small steps (literally).
At the appointment the doctor got me to do a simple memory test and to be honest I got them all right. It wasn’t short term memory, I was struggling with it was stuff that happened a few weeks ago. I was also tested for walking in a straight line, blood tests were taken which only showed elevated B12 levels. B12 is what usually vegans lack due to lack of meat however mine were showing really high which was ironic as I was vegan at this time. A number of other checks were carried out in my ear and an abdominal examination were all done. An ECG was also requested which came back fine.
Ste managed to come back and my mum went home. The doctor came to the conclusion that I was depressed. Offered me talking therapy for which there was a wait he said. At this point I declined. Deep down in my gut I knew this wasn’t depression. This is not in any way undermining any symptoms or diagnosis of depression. I know that this can be such a terrible illness but I felt my symptoms weren’t that of someone depressed. So, I went away awaiting a further abdominal scan and collected my sleeping tablets that had been prescribed feeling as though my issues weren’t fully addressed. As the days passed my symptoms got worse and worse. I lost full mobility in my right arm. Both me and Ste thought I maybe I had a stroke.
Thankfully Ste works for a private medical company and as a family member could arrange an online consultation with a GP for me. When I told the Dr my symptoms and previous diagnosis of Melanoma, she immediately said I should arrange for an urgent MRI and to see a Neurologist. She said she would request one via the private medical company however would write a note for me to send to my existing oncologist team to see if they could arrange an MRI sooner. We did and thanks to the my oncologists/skin care team a few days later I had my MRI.
The results weren’t good nor was the location I received them in. I was in B&Q with my mum for a change of scenery looking for tiles for the BBQ area I wanted to finish (when things like this happen it’s I have a desire to complete all the unfinished jobs around the house similarly as to when I was pregnant, it’s a bit like nesting). My mum had gone looking at plants which she often does and can disappear for hours if you let her. I was mid conversation with the Neurologist whom was telling me the results of the scan and that I had three brain tumours. I saw my mum looking for me and didn’t want her to hear the conversation so kept walking down various aisles to get away from her. In my own way I just wanted to deal with it myself and protect her. I finished the call. When she asked I just made something up and said it was a follow up about an appointment.
A few days later we had a another telephone appointment with a different Neurologist. This time Ste was present, the news wasn’t good he basically said that they might not be able to do anything at all for me. I was heartbroken so was Ste I remember we both laid on the bed crying. Ste was going to cancel football training (he was helping coaching). But I said not too as it was only him doing it that night so we both went. I took the dog for a little stroll whilst he coached. I remember watching Archie trying to savour every bit of him in thinking surely this can’t be it for me. I have so much to live for and besides I haven’t even finished tiling the BBQ area we made.
Lessons Learned
- Trust your instincts. If others don’t be persistent.
- Look for the warning signs, in my case these were;
- Headaches
- Loss of movement
- Memory loss/Brain fog
- Changes in speech
- Mobility issues – (one of my tumours was left hand side so I lost mobility in my right hand side)
- Lack of sleep
- If you’re taking on too much, stop. Prioritise what is important and what is achievable, somethings will have to suffer as result otherwise issues never get resolved you become the one letting people down.
- Don’t abuse the NHS it is amazing and I we are so lucky to have it. The treatments I have received have been life saving. However, don’t be afraid of seeking alternative opinions if your gut tells you too.
- Don’t dwell on negative energy. Writing this has brought some negative emotions to the forefront but hopefully for some benefit of the greater good. It might take me a couple of weeks to get back into my Happy Space after this but hopefully I can let a few more things go and put them behind me.
For more advice on symptoms for Brain Tumours please see the following links:
https://www.thebraintumourcharity.org/
https://www.nhs.uk/conditions/brain-tumours/
https://www.cancerresearchuk.org/about-cancer/brain-tumours/symptoms
