Today I lie on the settee to read the amazing Chris Lewis's latest Cancer Community Blog about Hope. I am tired to my toes. So shattered my head is punching its reminder that a brain tumour lurks. Here! Throb. Here. Wince. Mr H will you pull my hair on the top of my head...like you used to...
But this total tiredness and horrible headache are worth it. Every thump! Every paracetamol I will need to swallow to kick it out of my throbbing skull. Yesterday Mr H and I climbed aboard a train to London. The start of a well executed plan. To meet up with my gorgeous niece, Mom and sister. To realise a dream. Lois's dream. And celebrate all of their birthdays! I am celebrating too. I have been discharged from Breast Cancer Oncology. I consider myself cured I announced proudly to my oncologist when he said he would leave me with an open appointment. I am driven by Hope! Lois wanted to see the Billy Elliot Musical. She has hoped to for years. So when I was between doses of chemotherapy last year I booked the tickets for us all. As I paid I said to Mr H I hope I feel well enough. I hope I have enough energy to get me there and back...!
In the theatre, I sit deliciously huddled by my precious Lois, Mr H, Mom and Mandy by our side. When Billy reads out the letter his Mom wrote to him before she died, tears drip down my face. I too have dappled with death but today I am alive. Truly alive! I listen to Billy describe what it feels like to dance and whisper to myself that's how I feel when I sing... Like sparks of electricity I feed my soul with hope...
I am trying to float on a stress free cloud. Hold my cortisol levels in check. To allow my immune system to do its hard healing work. And help stop the cancer coming back... I am actually walking a tight rope. If I sway to the right I am in calm safety. Move to the left and I drop intro the depths of depressing stress. In one second! A good nights sleep, an afternoon hour on the settee and reading a good book all keep me on the rope. Breathing into meditation, singing my soul out and having the energy to walk in the sunshine help me to the sway to the right. But when I discover that my annual brain tumour MRI scan has not been booked as promised when I chased it, as requested by the department last summer. And a follow up appointment has not been scheduled for two of my Consultant reviews. I wobble to the left.. I keep myself upright by making a phone call. Then plummet into trembling, hang flapping tears when I am told the person who can help me is off for the next three days... I have to send several emails and pick up the phone a few times to stop the trembling tears. But the fall has damaged my head, heart and mind. Calm is out of my reach. My heart beats too fast. My body is filled with Anger induced Cortisol. I am at risk of getting worse. Dropping into a black hole. My cancer coming back. I once wrote that It only takes a pin to burst my bubble but nowadays my bubble is already burst and all I can do is try and stay on the tightrope. Fractured Hospital systems have caused me to fall... At the moment I don't have the power or energy to get back on the rope so for a while I have to stay at the bottom and hope rest will help me get back on my feet.
The next day,... Following my email, the kind and efficient senior nurse and one of the medical secretary's got my scan appointment booked for next week. And booked me a date for one of my consultant review appointments. Lesson is always ask for help but I know sometimes we don't know who to ask....
Cancer has taught me that sometimes in life you can't wait for the good weather, you have to jump in and paint the sky blue. I have one stab One go at it No time to wait for 'tomorrows' So in December, on a grey Friday, I stepped through the Choir room door for the first time. When Liz, our leader, announced the lists were out for the ChoirFest at St Georges, I walked over and added my name... Seven choir practices until the big day, and the Alto part to learn for three new songs. No word sheets are allowed up on stage Liz says, so learn them Ladies and Gents... In practice I sing myself inside out, words in hand, head hung to read. Then one of the ladies says songs are easier to learn by listening and absorbing, read over the words at home but not while we sing... sort of like osmosis I say with raised eyebrows as she smiles her yes in reply. So I buy a digital recorder and record us in full force then press play back at home and sing to heaven. Mr H wanders around humming the tunes and picking out some of the chorus he has absorbed! Mr H drops me off for the coach. A gent offers his hand to help me on and some lovely ladies save me a downstairs seat. As we clamber off, my bag, full of bottled water and a healthy cancer fighting lunch, is whisked out of my hand by a bubbly group member for the few steps uphill to the majestic old Church. The same lady finds me a seat and fetches me coffee as we excitedly munch on our lunch. The auditorium doors open and a flurry of coat carrying figures dressed in grey, black and white with peeking red flashes, bustle through to save us seats together. So to admiring glances, I pin a red flower to my hair...
No eating in the auditorium we are told but I nibble on a banana, pumpkin seeds, a few nuts and sultanas which I wash down with endless slurps of water to battle my relentless fatigue. I whisper to my bubbly companion not to worry if I go quiet, I zone out and meditate for a few minutes even when surrounded by noise I tell her... During the afternoon's two BIG SINGS I am one of 500 to learn six new songs. Then like Willy Wonka's Chocloate factory we blow the roof off. By the evening I am struggling to put one foot in front of the other and my head is buzzing like bees in a hive so I call Mr H to rescue me after our slot in the concert; we are first. Then I dig deep to release my last shreds of energy. I stand on the stage amongst 120 members of Liz's five 'Community Voices' choirs brought together for the day. Liz, with her dark hair also adorned with a red flower, glitters from the inside in her flowing silver coat. Liz raises her hands...My heart beat roars and my eyes fill with tears as I open my mouth and sing... High flying doves, please lead me and I'll follow you.... At home when my body falls asleep my head still sings.. Only remembered, only remembered, only remembered for what we have done... In case you are interested we sang: The Olive Tree by Tom Springfield/ Diane Lampert arr.David Weaver Only Remembered by Music: Ira Sankey,1891/Words: Horatio Bonar (now widely recognised from the War Horse) Jazz Gloria by Anon! I cant wait to get my hands on the CD of the day! What would you do to paint your sky blue?
