Symptoms: increasing ache in abdomen, bronchial wheeze seems better; migraine a constant feature
Pain level: body = 3, head = 4
Treatment: capecitabine (oral chemo)
Featured emotion: Love
Thank you so much for all your comments and feedback. I’ve been overwhelmed by the response to my posts, from people who I will never meet, as well as those closest to me.
I understand that some of the posts have been harrowing to read. I don’t want to cause anyone any pain; I just want people to realise what this is really like, to strip off the varnish of euphemism. If it’s too hard, please don’t feel bad if you stop reading. However, I think that everyone, even those traumatised by some of what I’ve written so far, is going to warm to this one.
I’ve tried really hard to come to terms with what’s happening, to accept that my situation is dire, and my time on the planet will be cut short. According to the data, I am 1 year into a possible 2-3 survival time. All the official advice is to get my affairs in order and cram as much enjoyment into the near future as possible, which I have done. Now, what? I wait to die? Soonish, to fit the data?
I am not a statistic.
What I am is very reward-driven, and always have been, especially when it comes to praise from people in authority. (I was an insufferable teacher’s pet all through school and even in professional life, determined to be the pupil they remembered. I even do this with my doctors now. Pathetic.) This could, however turn out to be useful. My stepfather is wise to it already, offering me a holiday for every year that I stay alive.
But this is not about seeking more treats, nice as they are.
This is about harnessing the power of my mind – and yours, dear readers – to maximise my length and quality of life. I heard of an interesting Australian study from the life insurance industry there. They changed the rules to give larger payouts in Jan. than Dec., and saw the bulk of claims shift from Dec. to Jan. People willed themselves to live for another month, to get more more money. We hear all the time about terminally ill people holding out for important family events.
This got me thinking. It’s not about just having a ‘positive attitude’. A lot of bollocks is talked about this, and it has become another stick to beat cancer patients with, and another way of blaming us for ‘losing the battle’. A positive attitude is handy, especially for soothing those around you. But it’s not enough. I don’t want to be the ‘funny cancer lady’. There have been a lot of those, wonderful women who found humour in the darkest corners of their souls. They’re all dead.
In any case, I already have a positive attitude, even if it wobbles sometimes. This means something different: giving my brain a new plan, one which isn’t a 1-2 year survival time, but a 5-6 year survival time (very rare, according to the data. But still.) The body is dumb. It follows any orders it receives from the brain, like the thickest grunt in an infantry unit. ‘Die today? Yessir! Right away!’ It doesn’t question, it simply follows the brain’s instructions blindly, to the letter. When you tell someone they’re going to die, and they believe it, the body starts to die. There are other studies showing that cancer patients with dire prognoses do better if they completely deny their situation, and behave as if nothing is wrong. This is related to the placebo effect, which is incredibly powerful (don’t get me started on homeopathy). I’ve never had Neurolinguistic Programming, but I gather it’s the basis of the theory behind it.
I’m a storyteller; will changing the narrative have any effect on the course of my story?
I’m feeling good right now, and stronger since the last bombshell has receded a bit. My Caped Crusader hasn’t yet kicked my ass or shredded my feet yet, but I have the comfort of knowing he is there. The migraines are causing more disruption than anything else, but I hope to get some relief. My latest visual field test shows a stable picture – no improvement, but no further deterioration. This counts as good news.
So I am going to tap into my reward-driven mind and focus on all the wonderful things in my future, that I don’t want to miss, that will give me and other people joy. I’m going to visualise them as a trail of jewels (I like sparkly things) stretching ahead of me, each one a reason to keep going. While I understand that all the advice is to treasure the moment (I know, I KNOW), this works for me.
And I have a proposition for you, dear readers: I have been cocooned so far by a giant duvet of love created by my friends and family, on social media and in person. It has sustained me through all of this. The feedback to this blog has me wondering: is it possible to crowd-source this kind of support from a wider community? A lot of people send prayers, although they understand that I’m not a believer; I appreciate that, but I’m not talking about asking for help from an invisible being. I’m talking about using the energy that’s in all of us, faith or no faith–let’s call it love. I believe in the power of love. Is that spirituality? I don’t know. But I know this: cancer patients with a strong social network survive longer than those in isolation. It’s connections with other people that positively impact our health.
So…sounds like the kind of hippy-freaky nonsense that you didn’t expect from a hard science empiricist like me? Maybe you think the brain tumours have flipped a switch somewhere? Possibly. But I hear so many of you express your anger, your sadness, your frustration, and your feelings of helplessness, that you can only sit by and watch this disease eat me alive.
We’ll, I’m offering a chance to try to help. All it involves is focusing that energy we all have within us, which is something those close to me are doing a lot already. I get it every time that I post about my progress. I’d like to see how big we can make this. So contact me @vanessalafaye or https://www.facebook.com/vanessalafayewriter/, giving me your location, and I’m going to create a Map of Love to show where everyone is from. It will give me enormous pleasure to see this. I’ve no idea if it will have any effect on the disease progress, but it certainly can’t hurt, and it will make all of us feel really good.
What do you think?
Please share as widely as possible! Thank you.