Hello, my name is Rachel and I was diagnosed with a hemangioblastoma in my brain stem nearly 3 years ago. I remember it so vividly, just as Covid was really kicking off and we were all in lockdown. I very embarrassedly agreed to go with the ambulance crew to hospital on my own ‘just to be sure’ as they were unhappy with my symptoms of headaches, vomiting and pins and needles down my left side. I was then informed after a CT scan that they had found a brain tumour.
I then understood the saying ‘what a difference a day can make’ as my world literally was thrown upside down. It is important for me to mention the stigma that is applied with a brain tumour still, and I also feared the worst.
Things happened very quickly from this point, and after an MRI scan I was aware that the top specialists held a multi-disciplinary meeting and it was clear my best chance was to be operated on and have the the tumour removed.
This was obviously a very scary and daunting thought, but I knew I had to help myself and stay positive to put myself in the best position to survive the operation. My friends and family were beyond sensational and I couldn’t have done it without them ( thank-you all sincerely ).
Both Vas & Puneet carried out the operation which took nearly 8 hours ! Having built a relationship prior with them I literally trusted them with my life. And for the first time I didn’t begrudge paying Oxford house prices to know I lived this close to a world class hospital and Neuro centre with surgeons as skilled as Vas and Puneet who quite frankly are my heroes and the most selfless people I know.
I remember going for my first year check up and turning up empty handed asking Vas ‘I just didn’t know what I could get you to say thank-you’ - his response ‘you walking in my office today is what I do this for- what you can do is live your life without fear going forwards’
Since this point I changed everything in my life that wasn’t serving me, take nothing for granted and my first little job getting me back on my feet was with Thames Valley Air Ambulance who equally are the most talented, selfless and kind team I know. I have also decided to do a University degree in Health Sciences so I can continue to give back in this sector.
Being straight - even with all this support it is a huge mountain to overcome and a very frightening time for you and loved ones. It’s life changing. Probably the recovery and the expectations on yourself for what you should be doing vs what you have to accept you no longer can do is mentally very challenging and ongoing during the recovery. Especially with the ongoing worry of anything further happening. This never goes away. But it forces you to put yourself first and make some positive changes.
I have been happy to share some of my most intimate pics in the hope this helps. It covers literally the day before it happened walking 5 miles with my dog & husband oblivious, to SCAS in my home who saved my life getting me to hospital, to the scan showing the tumour, my staples post op and one of my proudest moments sitting in the Air Ambulance.
Rxxx