The Wait Game Begins Again: Post-Op Catch Up With the Surgeon

After thinking the worst of this journey was over, I left my first real catch up with the surgeon wondering whether to think it was good news or bad news, or just news.

“There is no residual disease” – which I knew. No more brain tumour which is amazing. But today I was told that, during my surgery, part of my brain was starved of blood supply and although the MRI that I had the day after my surgery showed that it was successful, it was too early to tell whether there was any lasting damage. We won’t know until my next scan, and follow up in January, whether I had a cerebellum stroke, nor the outcome of this.

“If it is something that will improve with time, it’s too early for that change to have happened.”

I wasn’t sure whether to consider what the surgeon was saying to me a positive thing or not and I left feeling the exact same emotions I felt when I was told I would need brain surgery last year; uncertain and fearful of the wait. I knew the surgeons were uncertain themselves, but hearing that they aren’t sure whether there will be “lasting damage” was daunting, as it hadn’t previously been mentioned to me.

Whilst preparing for brain surgery I was very easily able to distract myself and find moments when I could forget completely. But as everything is so physical now, it’s a constant reminder and much harder to do. Whenever I read or watch a film I’m either faced with blurry vision or two of everything. Whenever I take a walk, I’m faced with balance issues and fatigue if I go too far. Whenever I cook or write or use my right arm, it is noticeably slower and weaker and even when I talk to someone, only one side of my face moves which can sometimes be uncomfortable.

I took a minute on the bench outside Charing Cross Hospital to compose myself before heading home and I must admit I suddenly found it impossible to remain disheartened by the situation thinking back to the last time I was there. I have hazy memories of being in a wheelchair whilst there previously and yet here I was sitting on it before walking myself home.

I felt reminded of how far I’ve come and how much of my independence I’ve gained back. Despite the doubts and frustration I’ve felt this week, on whether things will make a full recovery with time, which weren’t helped by my catch up earlier, I remembered what I wrote in my post on resilience in August:

You will probably get through one thing, only to be faced with another… but you have to learn to accept things and build resilience, whilst dealing with these life events, as change is inevitable.

Read the full post on resilience: 10 Ways To Build Resilience Without Thinking That The World Ending Is Amazing

 

I knew that after the appointment today I would be expected to continue to wait patiently for a full recovery. But I wasn’t prepared for the possibility that despite having a successful surgery, my next MRI scan can still deliver news I would rather not receive.

As much as I moan about being bored a lot of the time, on days like today I’m grateful that I can just cosy up on the sofa, with dark chocolate and a tear-jerking movie, remembering what I wrote back in August and wearing my bracelets as reminders to breathe and focus on right now.

 

2 comments

Karen Debonis

Sammy, I’m so glad you’re focusing on what you CAN do rather than what you CAN’T do. When you have those “can’t do” moments (because it’s inevitable that you will) just remember that a “can do” moment is just around the corner. Hey, I think I’ll tweet that – thanks for the inspiration!

Trish

Hi Sammy, I’ve just read your latest blog and felt I had to contact you and tell you how amazing you are. It’s a shame that your catch up with your surgeon didn’t give you all the answers you’d hoped for, but it is still early days and as you said yourself, look how far you’ve come.
I discovered your blogs a couple of weeks ago, when I couldn’t sleep one night, so I got up and flicked through Facebook, I think Harrie had put the link on. It was good to catch up and understand more about this awful time you’ve been going through. l had no idea how long you’ve had this hanging over you. Stay strong and hold on to that positive attitude.
Lots of love from me and Pete. XX

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