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 it.
I say rash because although Dr Kay didn’t talk me around and transferred me right away, and although I’m so thankful now that it was done by David Peterson at Charing Cross, for months I feared I had done the wrong thing, especially since my Mom would be completely on her own in a brand new city.
But having made the choice in that moment, in January I met with a surgeon in London and planned to have it privately in February. Quick in and out. I didn’t at all expect that surgeon to give me a choice.
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 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 was so confused; surely your surgeon should be confident? I felt damned if I did and damned if I didn’t. I had one surgeon telling me I needed surgery now and another causing me to think about things I hadn’t before.
It was a horrendous decision to make but I was due to see him two weeks after that to tell him what I had decided. Those two weeks felt like two months and although I tried not to, I did nothing but think about it.
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 amazing, and 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 unbeliavably 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 and he was so amazing. He answered all my questions and when finding out I was due to see David Peterson in April (who Dr Kay at Birmingham originally transferred me to) 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. In that time 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. ♥