Monday, 27 January 2025

Starting again.

 Hi, and welcome to the first post of my new blog, I thought a little catch up for my first post would be a good idea, a chance to understand the past few years, and what has brought me to this point in time.

As I write this it is the second anniversary of my craniotomy to remove a brain tumour that had been creating chaos for at least two years, my first serious symptom was the first month of Covid lock down back in 2020, what I first thought was severe cramp in my foot was later recognised as a seizure, a few more cramping sessions and I managed to get a doctors appointment, my cramping was accredited to my lifestyle and physio was recommended, as covid was still in full swing I carried on trying my best to carry on as normal, that was until early 2022 when a seizure caused me to pop a disc in my back, a side effect of which was a condition known as drop foot, again the tumour went undiagnosed, by this point I was in serious trouble, I was barely able to walk and working was becoming difficult, it wasn't until late July 2022 that things turned very serious, my seizures were now affecting not just my foot, but had spread to affect the whole right hand side of my body, thankfully this time a diagnosis of epilepsy was predicted and an appointment to see the specialist later that month, the tumour had other plans, I was under instruction to call for an ambulance should another seizure strike, this was to happen on the 13th August 2022. Normally the seizure would cease after a few minutes, however on this occasion this was not the case and the seizure would continue unchecked until the prompt arrival of the paramedics who quickly got everything under control so I could be taken to Musgrove Hospital in Taunton. It was here at 2-3am , after a few scans that I was given the news that I had a brain tumour, the next couple of weeks were gong to become a blur, the A&E doctor was brilliant as were the nurses and staff in Musgrove, being a Wednesday the Doctor was aware that the Neurology team was due to meet that morning to discuss their future cases, he rapidly assembled all the notes and forwarded them to the Neurology team at Southmead Hospital in Bristol. A few days in Musgrove to make sure I was stable and I got a call from my Neurologist setting up a pre surgery appointment and a provision surgery day, from diagnosis to removal was to be a sum total of 11 days.




The surgery was the easy part, there was no pain post surgery, I spent 10 hours on the table with two teams working on debulking my tumour, a few days of physio making sure I was capable of moving around at home own my own, at this point walking was as it was prior to the surgery, very difficult, I almost dragged my right leg around the ward as I took some exercise, after a few days I was released to go home, some how it was now September, the last date I clearly remember was sometime in July, the past few weeks had been a blur within a whirlwind. The next couple of months were spent learning to walk again, as the swelling eased in the brain some of the motor control to my right leg returned and December saw a return to work albeit only a day or two of half days a week.



As of writing I am now 2.5 years post op, still the struggle goes on, I am constantly fighting fatigue, the effects of surgery and my medications both suck all of the energy I have. Every thing I do takes twice as much energy as it would normally, to use a car as an example, my energy is fuel, except the fuel lines are leaking, I wake up with 3/4 of a tank of fuel each day regardless of how much or the quality of my sleep. This said, I am improving, I am better at managing my energy levels and learning how or what drains me, I am even starting to enjoy hobbies that I have not been able to enjoy for a few years such as getting out with my camera, I am reaching the point now that I feel almost confident enough to ride my bicycle, something that I have wanted to do for such a long time.
In another post I might go into the other side effects of the tumour, the mental and emotional changes that I have undergone, I know that the person I was before is dead a buried, I will most likely never be as I was, but I have a rare chance to start again with what is a slightly wonky canvass. Thanks for taking the time to read through this post, from here onwards I hope to being some colour and fun as I work past my problems and start enjoying life again.

No comments:

Post a Comment