Cutting a long story short, in December 2018 I was told by Dr Kay in Birmingham that I needed brain surgery. I didn’t want it at all, and as amazing as he was, I wasn’t thinking and made a very rash decision to move everything to London. Although it was just me there, my life was there and at the time I felt I was taking control of something when so much was out of it.
Transferring me through the NHS would take months and, as I wasn’t due to see the London surgeon until April, I wanted to try and speed things up, maybe having the surgery privately. I didn’t at all expect that surgeon to refuse operating on me.
He was somewhat realistic, I’ll give him that, given that I’m not myself right now. But at the time I felt he was extremely negative. He told me if I have the surgery now, when I’m so well, it’s a huge risk because there’s a good chance I wouldn’t be ok after.
On the flip side, if I leave it, it will continue to grow and I’ll probably become extremely poorly and the risk of doing the surgery when it’s bigger will be higher. He also added that in my lifetime it may also not ever grow big enough to cause me any problems.
I felt damned if I did and damned if I didn’t. I had one surgeon telling me I needed the surgery right now and another refusing to operate because he didn’t want the life of a well and able 24 year old in his hands (his exact words, gulp!)
I wasn’t sure what I was meant to do with that information. My NHS appointment with the London surgeon was still three months away and I now felt scared to death and didn’t want to go through with the surgery at all. Although I tried not to think about the conflicting opinions, I did nothing but think about them, for weeks.
It got so much that I didn’t know who else to turn to and I reached out to Jane at Brainstrust one night because I just needed someone to offload to. She comforted me and was incredible, then sent me this a few days later:
Monday 28th January 2019:
“Whilst on the tube home the nicest thing happened. It restored my faith in humankind completely. Jane from Brainstrust contacted me to say she’d been thinking about my case more and to help me make this decision a little easier they will pay for me to have a consultation with Andrew McAvoy – a world leading neurosurgeon, also voted best brain surgeon in the UK. It’s unbelievably kind, I’m so so grateful. I feel totally undeserving but promised to fundraise for them in the future. It’s so weird being on the receiving end of someone else’s fundraising but it’s incredible and has made such a difference to my emotional state and anxiety levels. It has changed the way I will view fundraising and charities forever, seeing first hand what a huge difference it can make. I’ve been researching Andrew and already know I want him to do the surgery! I might see if he could on the NHS. Either way, I’m sure being able to sit down and talk to him and go over all the questions I have about risks will be incredible and will really help me make this decision. I feel so speechless.
I met with Andrew on Wednesday 6th Feb for a third opinion. He answered all my questions and based on my scans, confirmed that surgery now was wise. When finding out I was due to see David Peterson in April (the NHS surgeon I was referred to from Birmingham), he told me to keep that appointment because I’d really like David and if for some reason I didn’t then he would do it. I felt comforted knowing that I potentially had two incredible surgeons willing to do it. It was just a wait game now so I did my best to park it. And in the meantime, I planned a 50 mile walk for Brainstrust.
On Friday 29th March Anna, from Brainstrust, asked why I was doing the walk. I wrote:
“Charitable giving is often something we do mindlessly because we know it’s the right thing to do and because we are told it will help in some way. We might even know of someone with a relevant condition which has the added bonus of strengthening our connection to that particular cause. But rarely do we ever truly stop and wonder what that support would actually mean to us if we were the ones receiving it; thankfully because we often don’t have to. This was also the case for me until January, when the news of needing brain surgery caused me to reach out. In a rather dark time the support I received from Brainstrust was both incredible and humbling. It gave me strength to know I wasn’t alone, as well as the resources I needed to fully explore such an unsettling diagnosis. It’s the kind of support I hope every brain tumour patient/survivor/relative/carer has access to, to make their journey a little bit easier. Brainstrust you are simply amazing and this 50 mile challenge is to thank you and to hopefully be a means of supporting you in supporting others. Let’s do this!”
I realised that until you have to, it’s not often that you think about what donating really does. I could easily stop at the £3,600 I raised, which they’re more than happy about, but I can’t.
Although putting me in touch with inspiring people and a world leading surgeon have been such thoughtful gestures, it’s not what Brainstrust did, it was how it made me feel this at my lowest point – so humbled, cared for and far more understood than I had felt in a long time.
I don’t feel satisfied with what I raised, and perhaps never will as I’m realising money can’t fully express how grateful I am to them. But at the very least, it will help others, and so supporting them is something I’ll continue to do. ♥
Donate to my walk at Just Giving or buy a bracelet here to help support others get the resources and support they need.
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