I had my first round of radiotherapy today. The mask clipped onto the headrest and felt firm, like a clay facial. I asked for a warm blanket, and tried to spend the next 20 minutes meditating on the healing golden light of love, the supreme power of the universe. The "relaxing" music they played didn't help. I'm used to the noise of the machine - they didn't play music for me at all for my breast cancer treatment, or maybe once or twice, but it was upbeat commercial stuff. I think I have become a "special" patient.
I don't want to be special.
Waiters are being overly kind to me in cafes, people are looking at me in the street. I don't mind that so much, I'm a 46yo woman walking with a forearm crutch, something must have happened to me, it's nice to be treated kindly by strangers. But the staff in the Holman Clinic have changed. They're much more serious now. They know I've got the Big Bad Wolf breathing over my shoulder. How do I know? Because they are avoiding eye contact with me. Even the nurses who welcomed me with hugs and open arms when I returned from Hobart weren't able to maintain eye contact today. Why do we avoid eye contact with people? Because we're afraid.
I am not afraid. I refuse to waste my energy on fear.
I am going to ensure I make eye contact with every single person in the Holman Clinic, and see if I can banish their fear, replacing it with hope.
Remember Pandora's box? When it was opened, all the evils of the world escaped, but there was one thing left remaining, the Spirit of Hope.
There is always hope, and we must never give up on it.
Never, ever, ever.
Hope to infinity and beyond!
I need each and every one of you who read this to think of me with love and hope in your hearts.
I need you to banish fear, because we can manifest what we fear. God knows I have done a good enough job of it for myself. "I won't get cancer!" I told myself. Why not? I was doing everything right - grilling food, eating processed meats, eating sugars and fast foods, not sleeping enough, not dealing with chronic stressors, avoiding conflict, suppressing anger and resentment, not excercising enough.And tempting fate by saying I wouldn't get cancer. I think my mammogram and ultrasound were clear at the start of last year because I'd been on a sugar-free ketogenic diet for 6 months.It had probably suppressed the tumour cells. But then I went back onto sugar, and the cancer flared up, with one growing inside my head that we didn't know about. I stupidly didn't exclude sugar this year, thinking that I wouldn't get cancer again, knowing that I needed calories to recover. I didn't take the breast cancer seriously enough, I trusted that the chemo and radiation would fix it, not knowing that I had the mother of all battles growing in my head. No wonder I was so tired.
If you worry about me, or fear for my future, you are wasting time when you could be rejoicing that the tumours were discovered and were taken away. You could be giving thanks to the deity of your choice that the tumours grew where they did, leaving me feeling more mentally alert and like my old self again than I have in years. You could be thinking of all the wonderful things I will be doing with my family and friends, and for people with brain disorders in the years to come. So don't worry about me, celebrate for me (I can't drink alcohol, so you may as well). Hope for me. Summon golden healing light and send it to me. Pray for me, do pujas for me - whatever you like. I want to surf on a wave of healing love.
I am going to kill my glioma cells, starving them of energy, killing every last cell. The radiation and chemotherapy will assist me. I'm a neuropsychologist, I've seen the worst that can happen to a brain. It's a miracle that Uncle Vernon and Aunt Petunia grew where they did. It could have been far, far worse. But it's not, and it's not going to get worse. I'm going to get better.
When clinicians see patients with Very Serious Diagnoses (VSD), we sometimes see the diagnosis sitting opposite us, rather than the patient. That's how I felt yesterday. I was no longer Fiona, I was the patient who has had two different primary tumours in the one year. I know it's not deliberate, I've been guilty of it myself. Sometime you see patients with conditions that scare the bejeezus out of you: for me it's frontotemporal dementia, or Creutzfelt-Jakob Disesase, the brain diseases that rapidly change the person and they lose their sense of self, making it even harder for their loved ones to cope - though Dad's preservation of awareness until the end was heartbreaking in it's own way, he was trapped inside his body and still aware of what was going on.
The important thing for clinicians to remember when they see people with VSDs, is to get over that, and connect with the person sitting opposite you. Ask how they're doing, and what can you do to help them? Is there anything that they need that they're not getting - home help, meals, cleaning, transport. How difficult is it for them to get around if they can't drive? Do they need allied health input? Think outside the square of your particular job, to what might be helpful for the individual you are talking to, and even if you don't have the power to make a referral, send a letter to the GP, suggesting OT/physio/speech/whatever. Then the person with the VSD will feel like a person, and not a diagnosis. It's not fun to feel like a diagnosis.
I wrote man of the next words to a friend the other night, after they shared their own sad family health stories. I hope that it helped them and didn't distress them, and that it helps you too. It's intended to keep Hope alive.
When clinicians see patients with Very Serious Diagnoses (VSD), we sometimes see the diagnosis sitting opposite us, rather than the patient. That's how I felt yesterday. I was no longer Fiona, I was the patient who has had two different primary tumours in the one year. I know it's not deliberate, I've been guilty of it myself. Sometime you see patients with conditions that scare the bejeezus out of you: for me it's frontotemporal dementia, or Creutzfelt-Jakob Disesase, the brain diseases that rapidly change the person and they lose their sense of self, making it even harder for their loved ones to cope - though Dad's preservation of awareness until the end was heartbreaking in it's own way, he was trapped inside his body and still aware of what was going on.
The important thing for clinicians to remember when they see people with VSDs, is to get over that, and connect with the person sitting opposite you. Ask how they're doing, and what can you do to help them? Is there anything that they need that they're not getting - home help, meals, cleaning, transport. How difficult is it for them to get around if they can't drive? Do they need allied health input? Think outside the square of your particular job, to what might be helpful for the individual you are talking to, and even if you don't have the power to make a referral, send a letter to the GP, suggesting OT/physio/speech/whatever. Then the person with the VSD will feel like a person, and not a diagnosis. It's not fun to feel like a diagnosis.
I wrote man of the next words to a friend the other night, after they shared their own sad family health stories. I hope that it helped them and didn't distress them, and that it helps you too. It's intended to keep Hope alive.
An Epiphany
It is heartbreaking to watch people you love suffer and decline, and to try to keep up a brave face for them when all you want to do is rant and rave at the world for being do damned unfair.
My heart still aches for the way we lost Dad, and my own cowardice in avoiding seeing him becaue I didn't want him to see me sad. It made him upset, and I couldn't bear to see him upset.
Thinking of it now, I realise that it was my fear of losing him that made me avoid him, and therefore lose valuable time with him. Thinking right now, the penny has dropped - we need to celebrate every moment we have with the people we love, even if their circumstances are dire. They are still with us in this life, and that is reason to celebrate, and to lift them up and help them enjoy every moment.
The time for mourning should come when they depart, and then in the knowledge that we have done our best to make them feel loved and comfortable while they were with us, rather than creeping around afraid of seeing Death at the door. Death comes when he's ready, and mocks us for wasting what could be happy, loving times in fearing him. Love is the most powerful forces in the universe, and it glows with a golden, radiant light that crosses all dimensions of time and space and reality.
Death is just a transition between dimensions. It's nothing to fear, because it's just a transition, the opposite of birth. Love and light are real, and they bind us all together. Fear is just our imagination, which is capable of creating infinite bogeymen, none of which will manifest, unless we dwell on them too much
We celebrate birth, despite knowing that the perfect baby we hold in our arms will suffer pain and disappointment and rejection and illness and heartbreak and loss to some degree in their life. All we can feel is love and hope for the wee bairn. We celebrate birth because a new life is come into our world, and we should celebrate the birth and continued existence of every single person we encounter, because being in this life is a gift, a thing of beauty and wonder.
We just get too distracted some times to notice, too caught up in our grand schemes and plans and ambitions and careers to realise that we're neglecting the most important thing - the people we love and care about. If we were to have the choice between losing our possessions and our loved ones... how could we choose anything but love? It might happen if we've become too attached to the effort we've put into our plans, and assume the support of others. But if you were asked to make a choice between losing the people you love, and losing every single possession and thing that makes your identity - your passport, career, home - how sad would it be if you chose the latter? You won't take them with you when Death comes calling, he sweeps them all behind. But you will live on forever in the hearts of others, because that's what love is, the eternal spark of golden light that joins us all together through infinity and beyond.
We just get too distracted some times to notice, too caught up in our grand schemes and plans and ambitions and careers to realise that we're neglecting the most important thing - the people we love and care about. If we were to have the choice between losing our possessions and our loved ones... how could we choose anything but love? It might happen if we've become too attached to the effort we've put into our plans, and assume the support of others. But if you were asked to make a choice between losing the people you love, and losing every single possession and thing that makes your identity - your passport, career, home - how sad would it be if you chose the latter? You won't take them with you when Death comes calling, he sweeps them all behind. But you will live on forever in the hearts of others, because that's what love is, the eternal spark of golden light that joins us all together through infinity and beyond.
I am humbled and awestruck by this epiphany. I keep seeing India Jones in the Last Crusade saying "The penitent man bows his head before God."
I bow my head and give thanks for this wonderful life, and for the love of so many people. I am humbled by your words of support. I put my faith in the golden light of Love to heal and protect me in the decades ahead, so that I may give much love to my family and friends, and use my knowledge and experience to advocate for people with brain disorders and their families.
Love and golden light to every one.
