Claire's Brain Tumour Recovery Journal - A Review

I had the opportunity to review an electronic version of Claire Bullimore’s Brain Tumour Recovery Journal for the purpose of writing this review.


I came into contact with Claire after my own Meningioma brain tumour diagnosis in 2008. Our journeys were also similar in that we, unknowingly, were diagnosed in the same year. 

Once I had realised, I would need some longer-term support I accessed Claire’s wonderful Aunty M Brain Tumours network through Facebook and Twitter. I also took part in a radio interview with Claire and have since contributed to her blog as a guest writer. As readers will probably know I started my own blog in 2013 as part of my journey of recovery. I continue to find writing an incredibly cathartic therapy.

When Claire asked members of her recently established Facebook group Brain Tumours Bloggers United to review her journal I jumped at the chance:


The well designed journal which is 52 pages long, is an aide memoir in diary format and a mindful prompt for people recovering from or living with a brain tumour.


The Journal costs £10.99 and is available from Amazon 

At the start two pages are dedicated to listing Important Things To Remember including medication, appointments and doctor and therapists details. This provides the opportunity to keep essential information in one place, a go to reminder.


I particularly like the next section asking the Journal keeper to list Things that have Frightened Me on My Journey. After a lot of counselling therapy, I now understand the value of writing feelings down, getting them out of my head, and can see that this simple task would help so many. I also like the balance of positivity on the page where Claire asks the journal keeper to document Things I Have Overcome And Am Proud of Myself For.


An important list is then provided to prompt self-help and how to access ongoing support. The subsequent page is a further visual aid memoir to leaving the house. Since my brain tumour I struggle with my memory and I can see myself printing or scanning this page from a hard copy and pasting it on my front and back doors. 


The Journal then provides space for a monthly planner and I recognise how using it to diarise the Things I Want To Achieve Each Month – which is something I rarely plan, would be an incredibly positive thing to do. Seven pages follow with hourly slots from 7am to 10pm providing space to plan or record events, feelings and thoughts.

The rest of the Journal is four repeats of the previous 9 pages – providing space for a months planning.  


Claire knows only too well that one of the many issues with recovery is that of memory challenges. Therefore, the journal is a dual tool which many will find useful to use. The Journal could be used as a paper diary to record appointments, social events etc, a bit like a Filofax whilst providing direction for people at any stage of a brain tumour journey. 

A Mindfulness Journal
However, I see a huge benefit in using this journal as a means to focus on emotional and mental health. I imagine that few of us regularly write down how we are feeling, or what we want to achieve. The prompts Claire provides suggest this was in her mind when she wrote it. Indeed on her website she suggests it can be used for strategy building; somewhere to write down your thoughts and feelings, a recognised mindfulness exercise to relieve stress and anxiety. By writing things down, the user would provide themselves with information and memories which they can subsequently reflect upon as they progress on their journey.


The only criticism I have is that with only a months worth of pages, it is not clear if Claire would suggest readers copy the pages for their own use on a longer-term basis or whether it is only meant to be used for a short period of time. I would also suggest that the journal would benefit from direction in its use from Claire as is included on her website. 

Claire has also been modest in the journal as she has not included information or links to her book A Brain Tumours Travel Tale, support network sites and blog which I feel would help people who have come across the Journal but know little about Claire.


I applaud Claire for writing this Journal, which, had it been around at the start of my brain tumour journey, would have helped with my focus during the early stages of my recovery.

The Rough and Tumble of Pre-Christmas

Today I am tearful and I don’t know why then I look at the date and smile. My body knows!  Exactly eleven years ago today I drove to work in Cardiff then home again later. I felt twitchy so I threw on my running gear and closed the back door behind me. I started on my usual route but half way through a little voice said cut this one short. And I did. Later that night my life changed. You all know the story...

Now the run up to Christmas always leaves me with a tumble of strange emotions. Last Christmas was no different. In June last year I said goodbye to a dear friend Jenny because of breast cancer. Then in December I was forced to say a sudden goodbye to another incredibly special friend Carmel. Needless to say, sending Christmas cards didn’t feature on my to do list.

I am telling you this as it reminds me that Christmas is a time of reflection as much as it is about Christmas Trees and gifts…

Lately frustration has planted itself on my shopping list. Frustration that I never have enough energy to tick off even half of the things on my to do list. Frustration that when I plan to do some writing for my Blog and Book my energy decides otherwise, Frustration that when out to shop a seizure stops me taking another step: I stand like a zombie by the disabled spaces outside Tesco. Hand on a parked car.  Mr H is inside ticking off one of our to do’s. I can see the car but my head won’t let me cross the road and get in. I stand there leaning on the stranger’s car.  After ten minutes my scrambled egg head starts to clear and I move forwards. One faltering step at a time, to get in our car and wait for my chauffeur.

But I am lucky as my seizures don’t cause me to fall unconscious. I just feel like I will. My plethora of drugs catch me before I fall. It’s a shame the drugs don’t stop me tripping over my own feet, or a door tread, or a stone, or a slightly uneven pavement slab. My knees at the moment look like those of a child who enjoys rough and tumble in the playground. 

But now I’m complaining and I don’t like to do that. I’ve had another all clear year regarding my brain tumour and breast cancer so I should be celebrating…

So I will bring my thoughts and black and blue knees back to the subject of Christmas… I am not a particularly religious person, more of a humanist I guess. But this year Mr H and I have been supported by some fabulous friends and also a Vicar. He has offered us a guiding hand at a time when we were both in need. 

So as usual I won’t be buying many gifts. I won’t be pounding the shopping Malls because I can’t. I will give family what they need most and my friends my time, support and love. I will donate to our local foodbank, to people who don’t have the basics. I will silently pray in Church on Christmas day. I will be guided by something or someone in the hope that I am doing the right thing with my gift of life…

Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom.

Marcel Proust

Three Legs

I am going to wear my leg today I declare with a grin, take two sticks… Good idea Mr H replies

It might help with the rocks, stop my foot from rolling over, stop me dislocating my ankle. It’s worth a try but remember its tricky out there he says with a frown. We pull on our waterproof coats to shield us from the English holiday drizzle, Mr H locks the cottage door.

The walk along the marine parade is easy enough, one foot and stick in front of the other just like my childhood ballet classes, left arm – and stick - right foot, right arm – and stick – left foot…

My paralysed left foot is held aloft by my splint which out of vanity I rarely wear. Once we reach the rock filled beach I pause, hesitate, turn to Mr H with a nervous smile;

Its ridiculous I say, I walked the Grand Canyon, climbed mountain after mountain, jumped out of an aeroplane but now a beach full of rocks makes my legs tremble

Take it step by step Mr H says as I grab his arm to steady myself as I encounter the first wobbly, slippy rock. I’ll tread the path in front of you and you can follow in my footsteps. I follow as my feet sink into the shiny, silvery shingle

This is Ok I say as I pause to regain my balance and watch as the tide slowly retreats into the murky sea exposing flat, safe, brown sand

But as we reach the larger rocks, I stumble, my left foot turns over on every rock despite the third leg. I abandon my second stick and instead cling onto Mr H’s arm as he guides me as safely as possible step by step, rock by rock…

Let’s aim for the sand as the tide retreats, I say reluctantly. Walk diagonally Mr H tells me, it reduces the camber and the slope.

Safely on the sand I look sideways at all the huge wet boulders I want to climb over, I watch enviously as young and old holiday makers spring from rock to rock. Even though Mr H could do the same he never leaves my side

I tread cautiously over seaweed covered flat brown rock now exposed by the retreating sea. I spot sea anemones, crawling crabs and something bobbing up and down out at sea…

It’s a seal I squeal but when Mr H checks with his binoculars he realises the seal is not moving. It’s a stone, a rock he tells me and I walk on, my shoulders hunched in concentration.

I stop after every few steps, pause, look around, breathe deeply. I let the ozone, seaweed smell of the seashore slither into my lungs. My hunched shoulders drop and my breathing becomes deeper and slower. I stay in the moment.

I scan the surrounding rocks, rocks within my reach, for any  signs of prehistoric life. Worn away fossils have left their circular mark but their details have long ago been washed out to sea by the turning tide.

I glance again at the unclimbable rocks, turn to Mr H with a resigned smile, its not going to happen is it. I don’t think so he replies as his mouth curls up with an understanding smile.

I look around once more, then turn to tread the stone filled shingle beach back towards the marine parade …

Tomorrow we will try three legs on more solid terrain Mr H suggests... 

and by doing so we are rewarded, not by a fossil but with a stunning orchid hidden in a wild flower meadow...

   

When defeat comes, accept it as a signal that your plans are not sound, rebuild those plans, and set sail once more toward your coveted goal

Napoleon Hill

Sunshine and Scrambled Eggs

The only sound is a chorus of frantic tweets as baby goldfinches are fed by their parents eager to show them how to find their own food and water. A smile curls on my lips as I sit and listen. I am surrounded by the music of nature. Distant chatter of neighbours enjoying the sunshine is subdued by this joyful sound.

I lift my camera each time a different bird flits onto the water feature to catch some of the cool trickles on this warm summers day. A blue- tit swoops onto the fountain and shakes and splashes its wings. If a bird could smile then this little tit would be gaily grinning as it swishes in the water. I grin too.                         

Another familiar song drifts into the branches of our golden bamboo. I listen. A juvenile robin takes its turn and stands with water dripping off its beak…

A blackbird hops along the lawn looking for dropped sunflower seeds as the inexperienced feeders miss their own beaks. He too then jumps into the water like a child wanting its turn in the paddling pool…

I have no idea of time. No idea how long I sit and listen. And watch mesmerised as these wonders of nature gracefully and musically shower my afternoon with mindful joy.

It has been a tricky week. A week of more seizures and hospital visits. A week of stress and new tablets. I am having to swap one of my epilepsy drugs which I have been on for eleven years. I am scared.

I am swapping because, like the number of birds in our garden, my seizures have dramatically increased. Waves of nausea, a scrambled egg brain and tears roll on and on like waves in the sea. When I rest, my left leg is shaken by electric shock tremors which shoot through my foot. Strange whooshes often disturb my calmness as they pass through my brain like a soundless train; in one ear and out the other…

And my stomach-churning fear of the dreaded tonic clonic seizures deciding to take their turn is as constant as these baby birds hunger.

So how ever much time I have spent sitting, listening and watching the birds. I thank them for the gift of stillness they have given me today.

Together We Matter - Unashamed Pride

You are amazing I tell my friend Julie as I sit by her side at the computer.

This feedback is incredible I grin.

As two bereaved Mums, Julie and Josie are reviewing the comments made by Nurses, Medical Consultants and charity workers who have attended one of their workshops. 

 



They developed their interactive workshops to provide insight into the challenges facing families caring for children born with incurable medical conditions.













It is clear from the feedback that the workshops are beneficial to anyone working with children with life shortening conditions; professional or otherwise: 

Inspirational

Powerful

Humbling

Insightful

My practice will change

These terms jump from the many pages. 

This feedback is profound I tell her. Every lecturer aspires to have such an impact when delivering a workshop. 

I am not surprised as over the last four years of friendship with Julie, I have been inspired by her drive to let her girls lead the way...

Julie and Josie have taken a leap into the unknown, tamed their tigers of fear and nervousness, swept aside their lack of previous healthcare work.

They are experts by experience. They devoted the short time their children were by their sides to their care. They have been on the other side. Been in receipt of devastating news, however it was delivered. Been in the middle of the most challenging caring role anyone of us could ever imagine. Mixed into their deep pools of experience are examples of good and not so good practice. 

But most importantly of all, in their workshops they create a safe space for professionals to ask them, as bereaved parents, questions no one else in their world can answer with such honesty and integrity.

So forgive me if I gush and glow with pride when you ask how my friend Julie is...

You can read more and even purchase a copy of the books they have contributed to on their fabulous website Together We Matter

Furthermore... Julie has recently been nominated as one of the Top 100 Women of the West 2019 (of the UK) so I unashamedly ask you to click here and vote for Julie Kembrey a  lady I am proud to call my friend.

Thank you

A Smiling Face

She calls a name

It's not mine

She grins her familiar grin as another lady stands and walks towards her

Hi I'm Naomi I hear her say

Five years ago I answered her call, stood up, grabbed my stick and wobbled across to meet her, my reading glasses still perched on my head, my knitting hastily stuffed back into my bag.

I followed her into a room...

Five years. It's such a long time, but as it sit here watching it only feels like yesterday.



It's hard to believe that those five years have passed. The whir of diagnosis. Biopsy. Surgery. More results. Chemotherapy. A bald shiny head and never ending nausea. Tattoos for radiotherapy before I popped out at the end of the tunnel with a prescription for Tamoxifen clutched in my pale, shaky hand.

Five years ago. 

But this time my heart doesn't pound, nausea doesn't rise in my stomach, my palms are not sweaty.

I breathe easy. No more bad news today when my name is called.

I want to wave to her and say hello but I know the lady she is seeing needs her uninterrupted attention as she embarks on the journey.

So I just smile to myself in the knowledge that the lady is in good hands.

For me today is just a review. Do I want to keep taking the tablets.

Yes. 

Without a doubt I tell my surgeon when he asks.

He reminds me that there is a chance that some cancer still lurks, clutching to cell walls, waiting for its chance to start multiplying again. But the Tamoxifen should stop it. Block it. Halt its troublesome progress.

So for as long as they'll let me I will continue to swallow the pills.


Meanwhile I will keep making the most of my life full of family and friends. 

I am Rich with kindness and love.

As the clock strikes one

As the clock strikes 1am on Sunday 18^th November I will be sleeping, curled up on my side while Mr H quietly purrs in a deep sleep beside me.

At the same time in 2008 it was a different story, Mr H was, with hair pulling terror, trying to shake me awake from a blue faced, shaking, shuddering black hole I had disappeared into. 

A seizure. 

My first. 

His first. 

Six hours later, drugged on anti-seizure meds, I lay on a hospital bed.  Mr H was still by my side. Then the news was delivered, which like dynamite was to blow our world in two.

I had a brain tumour. 

Ten years ago things were different:

My weekdays were full of jobs I had to do. Mind blurring meetings; rushing from one ward to another during outbreaks of infection; driving hundreds of miles from the top to the bottom of Wales. Snatched lunches gobbled down between jobs to do. Too tired to prepare food from scratch I threw quick ready meals into the oven at home.

Never a thought for my own health.

But Now
My days are full of things I want to do. I listen with a slow beating heart to the melodic voice of Katie Melua or Eva Cassidy. Or to the French radio station ABC Lounge music; a tip from my friend Jenny who recently passed on to a different world. I meditate. I choose when I sit down at the computer to type. Mr H and I grow some of our own food. I cook healthy meals from my perching stool in the kitchen. I smile a lot more. My mental and physical health are now at the top of my virtual to do list.

Ten Years Ago:
I climbed mountains and mind buzzing with work, Mr H and I pounded the streets and paths in our running shoes.

Nowadays:
I grin when I feel the breeze on my face as I walk slowly through wind scattered autumn leaves on a short walk back from the shops. It’s a good day. Unable to drive, I get the community travel bus, the old ladies’ bus I tell people with a grin, to my exercise class. A class I do with a group of older gents affected by Parkinson’s disease who are as wobbly on their feet as me! And on Friday the bus comes again to carry me to choir for two hours of soulful singing amongst my new friends.

Ten Years Ago:
I thought I had to keep in touch with everybody, even friends and acquaintances who made me red faced with anger or wet faced with tears. I rescued people; almost anyone who asked for my help. I carried other people’s burdens like rocks on my shoulders.  I didn’t have the skills to shake them off. I was a nurse, wasn't that what nurses do?

Now:
I surround myself with Positivity. That doesn’t mean I turn my back on friends and family in trouble. The exact opposite is true. But through counselling I have learnt that I don't have to soak up other peoples troubles then carry them around like heavy wet rags. I have learnt to use my ears more, actively listen; a troubled friend almost always knows the answers to their problems. It just helps to have someone actually listen for a change.

Ten Years Ago:
Mr H and I were already a unit. In love; Joined together through love and respect.

Today
We are Mr and Mrs and my heart swells with pride when he walks into a room. He is a gentleman, his Mum taught him that. His respectful pride in me oozes out of his every pore. I am proud of what he achieves; his integrity is as strong as an ox. We have been through a tsunami of challenges but hand in hand, we surf them together. We are bonded by a respectful love which is deeper than any ocean.

I am lucky

We are lucky

"And like the flowers in the fields, that make wonderful views, when we stand side-by-side in our wonderful hues...

We all make a beauty so wonderfully true.

We are special and different, and just the same too!

So whenever you look at your beautiful skin, from your wiggling toes to your giggling grin...

Think how lucky you are that the skin you live in, so beautifully holds the 'YOU' who's within"

Michael Tyler, The Skin You Live In

Finding Feathers

On a Saturday evening in May 2012, like a snowflake, a tiny white feather drifts down and settles on my knee. A shiver runs up my spine as I sit gazing at the feather while I listen to a beautiful rendition of Vivaldi’s Four Seasons which fills the Church of Santa Maria Dela Pieta in Venice.

Jon I think with a sad smile. 

On July 31^st 2018 after two days away to say see you in my memories and dreams to a dear friend I arrive home. Sitting on the floor beside the door is another white fluffy feather. Jenny I whisper as I stoop to pick it up and lay it gently on the worktop.

In August during a weekend trip to the British Birdwatching fair I stop my mobility scooter with a jerk in the Art Marquee when I spot beautiful feathers sculpted from wood. The artist Tom (T.A.G) Smith has captured the curves of the feathery fronds and the changes in shade and colour by the use of different woods. Mr H and I gawp open mouthed at such curious creativity. Beside the wondrous wooden feathers is a sculpted owl face, its wide eyes stare, unblinking at us with a twit twoo grin. We move closer. My eyes twist and turn to feast on each feather on display; from a gigantic Golden Eagle to a fine, tiny, Goldfinch feather. We chat to bearded Tom while surrounded by these precious pieces of art. 


Later we return and pluck a brown and cream Buzzards feather, displayed on Purpleheart wood, from his stand for our wedding anniversary gift to each other.

In the afternoon at the far end of Marquee Two, a purple book cover catches my eye: Mrs Pankhurst’s Purple Feather Fashion Fury and Feminism – Women’s fight for change. I park my scooter to get a closer look. 

I open the hard-backed book and read the first few lines. I am hooked and watch like a hawk as the cashier handles my purchase. 

The following morning Mr H and I sit and listen to the author of Mrs Pankhurst's Purple Feather Tessa Boase in the Harrier Lecture Marquee. My blood bubbles with indignation as Tessa tells the vivid story involving fashion, the slaughter of birds and the four unacknowledged female founders of the RSPB. 



Their fight was fought at the same time as the suffragettes but was in direct opposition to the real purple Ostrich feather which Mrs Pankhurst chose to adorn her hat. During the 1800s and early 1900s, millions of wild birds were slaughtered all over the world to provide milliners with the birds heads, bodies, wings and feathers with which ladies chose to decorate their hats. As I turn the pages of The Purple Feather I learn that Emily Williamson set up the Society for the Protection of Birds in 1889 and was joined in 1891 by Etta Lemon, Eliza Phillips, Hannah Poland and Winifred,  Duchess of Portland. Together they campaigned to stop this slaughter of birds, many of which, by this stage, were near to extinction.

On Saturday evening we stand at the edge of the calm waters of Rutland Lake. We are waiting to board the Rutland Belle for an ‘Osprey cruise’ with Naturalist Simon King. As we sail out onto the water the wind picks up so these once near extinct birds stay tucked into trees. But we ooh and ahh as common Terns spiral into dives for their fish supper and watch while little white Egrets paddle at the water’s edge adorned with black beaks and yellow shoes.

As dusk descends, almost an hour passes before Simon calls out Osprey over the damn ahead. Our heads snap up and a boat full of binoculars eagerly peer ahead at the white and brown swooping bird until it flies into the distance...

On Sunday, once again we stop at Tom’s stand in the Art Marquee to stare at his exquisitely detailed wooden feathers. I pull out my credit card as I can no longer resist Mr H’s imploring gaze. It’s your birthday present I tell him as we walk away with his beautifully crafted Golden Eagle feather carefully wrapped. 

On our way home we dip into Lyndon Nature Reserve for a last sight of the Ospreys; this once virtually extinct species are here because of the Rutland Osprey Project. In a hide we peer through scopes at a male and female with their last chick who sits silently still on a fallen tree preparing for its first solo flight to Africa. 

Walking back to the centre I stoop many times to pick up grey, black and white silken feathers dropped by their owners as they moult. 

The last feather I swoop up has a gloriously multi coloured tip. We gaze at its splash of blue, dots of rust brown and white and guess which bird it is from. 

I imagine a feather such as this was often plucked from a slaughtered bird to be worn on a hat.  

Let me be as a feather

Strong with purpose Yet light at heart,

Able to bend.

And, Tho I might become frayed,

Able to pull myself together again.

Anita Sams

Leaving Doors Open

Yesterday a friend I have known for thirty years visited. I hadn’t hugged her for five or six; I see her smile on FaceTime, her voice on the phone and she reads my Blogs but we live some distance apart. I should have made more effort I think, as her familiar face pops into view when she walks into our green, bamboo swishing garden. 

Her daughters have grown, they remember their last visit well. I let the young girls loose with a box full of ribbon, furry bits and pieces and labels to wrap a few presents. Put as much on as you want I smiled. They burrowed their heads in paper and glitter while Mr H told them stories about climbing mount Everest from the inside.

Today we sit in the garden and with grinning faces the six of us chat about life while munching on homemade rhubarb and carrot cake. They are whizzing around on a whistle stop goodbye tour. Off to Australia, we’re not sure how long Michelle replies when I ask. Richard adds, with glares from his daughters, many say they don’t return.

I hate goodbyes Michelle says as they get up to leave. Let’s Facetime in August I say then we can still chat and see each other. And who knows you may even answer your Australian door one day to another hug. 

I leave the door open…

Even so I watch with a lump in my throat, as their car disappears out of view but walk inside with a contented smile as I know I will see them again. 

Whenever I go to see my 86 year young Mum, friends or family, as I leave I say I love you, I will ring you later. See you soon.

I  leave the door open…

Earlier this year I blogged about a shopping trip with my friend Jenny. Mr H and I met Jenny during a tropical storm. We were visiting gardens in St Vincent in the Caribbean and the rain fell without warning as though someone was pouring warm buckets of water over our heads. Amidst loud parakeet sounding laughter most ran for shelter. I didn’t, couldn’t, and therefore neither did Mr H. Behind us were two ladies who also couldn’t run, their knees stopped them. They were Jenny and Lyn and giggling we ambled along together as the rain soaked through to our knickers. We spent the rest of our sun and laughter filled cruise in the company of these bubbly ladies.

But sadness was tucked behind the smiling photograph of Jenny and I on our shopping trip. Jenny’s breast cancer had returned and like bind weed, had rapidly spread. 

During the last few months Jenny often asked me for advice and I reached out with my listening ears. When I couldn’t be with her we Facetimed while she was living with her daughter or staying at her sons. Your word is gospel Liz her daughter in law kept saying each time we spoke about some element of Jenny’s care. Jenny trusts you. 

We Facetimed as I sat on the beach on holiday so Jenny could hear and see the sea. I sent her a video of waves gently swishing on the pebble beach, she used it to get to sleep. I tried to bottle the salty smell of the sea in a jam jar to take to her bedside...

When Mr H and I visited after our holiday, I sat on her hospital bed in the spare room of her sons house while I rubbed soothing hand cream into her frail thin skin. We held hands as we talked about Cockleshell beach in St Kitts and how Jenny had held my hand to get me safely into the warm shallow sea. How we dug discarded pink and cream conch shells out of the white sandy dunes. How we walked through market stalls looking for our jewellery made from local shells. How we watched in utter disbelief and then hugged with delight as whales butted our boat on a trip around Dominique.

As Jenny's eye lids drooped with fatigue I stood up to leave, I hugged her and we kissed.  I love you Jenny. I will FaceTime you I said. Jenny smiled then closed her eyes as sleep swept her into dreams.

But I left the door open…

I woke early on Wednesday as a message gently slid onto the screen of my phone;

Jenny is at peace now Liz wrote…

Life is not always about saying Goodbye then closing the door.

It is also about walking through life while leaving doors open…

God Bless Jenny I'll see you in my memories and dreams x