Sunday, September 14, 2014

I always said I would never have a tattoo...

... now I have four. The tattooist chose the design, not me. They are as black as thunder clouds and signify a stormy year full of rainy tears and thunder bolts of shock.

The oncologist said this part of my treatment will be a breeze compared to the chemotherapy but I am as scared as a puppy at it's first sight of lightening. Like hail stones, unanswered questions hit my brain; will my new breast shrink, will my breast hurt as the treatment progresses, will my skin burn...

Reassurances bounce off me rather than sink in to calm the storm, tissue contraction is rare, blistering of the skin only happens rarely, you may experience a bit of soreness as the radiotherapy progresses they tell me. 

The trouble is the word rare makes me tremble...

Brain tumours are rare affecting approximately 1 in 38,000;
A post operative brain abscess after brain tumour surgery is rare (less than a 1% apparently); 
Breast cancer AND an unrelated brain tumour is incredibly rare, never heard of it happening both my neurosurgeon and oncologist told me;
The safety device used to keep my PICC line in (to administer my chemo) squashed the line causing it to crack and leak and  had to be replaced, this has only happened once before in all the time we have used it, the PICC line specialists inform me; 
My second breast operation the day after my breast surgery when a haematoma complication arose is not so rare -1-6% chance in figures I can find, but I scored a home goal with that too...

I won't actually be there during my Radiotherapy!  I will use Imagery, a technique I learnt through my brain tumour journey and recently at The Penny Brohn Cancer Centre. I will go to the sea in my head and forget what is happening while I am first prodded and touched and while the machine takes over to give me my zaps...

The four tattoos...
They are pin prick spots put onto my skin after the radiotherapy planning CT scan; between my breasts, above my affected breast and on both sides of my body-to ensure they zap me in the right place each time. I only felt a scratch when they were done. 



Never say never because limits, 
like fears are often an illusion




Thursday, September 4, 2014

The thing called energy...

The persistent burring of the alarm sounds like it is at the bottom of the sea, well I wish it was, as I turn over and pull the duvet over my ears.

The sound of voices and the noisy skips of children on their way to school outside my bedroom window, or the postman ringing the door bell with yet another parcel Mr H has ordered, force me to push the duvet back. Those or another hospital appointment to go to!

After my shower I flop back onto the bed, too tired to walk down the thirteen stairs to get breakfast. I long to sort out my underwear drawers as the pretty bras I wore are no longer of use, the bras suitable for a breast prosthesis are boring black and washout white. I want to find things at the bottom of the airing cupboard but emptying it would be like entering a contest for the strongest woman with no muscles! Mr H already does the ironing, shopping and a lot of the cooking, as well as work, so these kinds of jobs will have to wait…

A friend phones and my tears tumble as I tell her how I am. I imagine how life was when walking was as easy as eating cake, hanging washing out didn't leave me huffing and puffing and the desire to sit down didn't dominant my mind, even more than cake!

The oncologist was right about the impact of chemotherapy; of fatigue being incremental building up from dose to dose.


But I have time to read while sitting on my ‘summer holiday’ garden furniture I treated myself to, 




Plan new meals with my organic produce as my mouth waters, and take a short stroll along our lane to collect fallen apples to make another Abel & Cole Mama Moore's Apple cake









Oh and celebrate the end of Chemotherapy with a birthday present of Afternoon Tea at Thornbury Castle...


Who said healthy eating didn't include Cake...

Thursday, August 28, 2014

Hair, hats and scars...

When I was young my hair was thicker than Devon Clotted cream, as dark as a stormy sky and it often fell onto my shoulders in a knotted mass. My older sister Mandy pleaded with me to loose my blue Alice band and at least try bunches...

As I got older I dipped my toe into the style bucket and tried a Purdy cut, went curly with a perm before moving onto the lady Di look, and when the grey hairs crept in during the night, new colours too. But in 2008 - 2009 I lost the hair off the top of my head three times for the brain tumour surgery; so  I merely shrugged my shoulders when the Oncologist said I would loose my hair with the breast cancer Chemotherapy.

More hats I said

Before the first hairs fell out I tucked my golden locks behind my ears, shoved my fringe under a hat and stared at myself in a mirror as I turned from side to side...trying to imagine how I would look as a lollipop sucking Kojak!



Two weeks ago Lois nipped off the last few straggly strands left poking from my soft, white, train tracked head.  


Then Wednesday with a wig wearing grin I held my arm out for the sixth dose of the cancer killing, hair eating drugs.

The last time









I have prepared my family and friends for my combat look by randomly ripping off my wig when my head overheats. 






Let the re-sprouting begin...
"Be thankful for what you have, you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough"
Oprah Winfrey

Except hats...I will never have enough hats!



Monday, August 11, 2014

Everyday is a best dress day

I used to leave tops, skirts and dresses hanging in my 'best dress' wardrobe as I told myself...I don't want to spoil them...people to see me in them on an ordinary day because when I go to a restaurant or party I won't feel special...

Now my best dress outfits mingle amongst my jeans, joggers and jumpers and each morning when I wake, only the weather dictates what I wear.

I put on my dresses covered in a bouquet of flowers, rainbow skirts and lacy tops to wander to the Deli ten minutes away or to go to oncology for my next chemo. 

...waiting for my 5th Chemo dose

Today as I sip my cappuccino in Bath I tell Mr H that a man opposite keeps turning to look at me...

It's because you look so stunning...he says as I lean over to kiss him. 

This week I may wear my wedding dress to go on the swings at the park...


What day is it?
It's today squeaked Piglet
My favourite day said Pooh
A.A.Milne

Wednesday, July 30, 2014

Eating my way back to health

So what changes have you made to your diet since your cancer diagnosis? the lady beside me asks at the Penny Brohn Cancer Care Introduction day

I am trying to eat less cake I reply with a smile what about you?

Well (she hesitates with her pen poised) I have given up dairy, all red meat and processed foods... I gasp. 

How do you get calcium? 

I buy almond milk...my eyes widen as I check out how much these changes are costing her...

When we feed our stark contrast of approaches back to the group a huge grin of titters spreads about the room... at my cake eating, not the dark hair lady's life changing approach...

Am I was missing a trick I ask and the room erupts with chatter about juicing vegetables, the role of dairy in oestrogen driven cancers, sprouts and seeds mmmmm

The group lead suggests The Bristol Approach to Healthy Eating, but Dawn if you fancy a bit of cake then have it...


Back home I send for the recommended books, the first to hit my mat is Anti Cancer A new way of life 


but after the first few chapters I feel sick...have I eaten my way to cancer? Processed foods are demons, dairy and breast cancer should not mix, too much refined sugar is the cause of many ills...I put the book down and leave it. Another time.



I turn to the Penny Brohn Food guidelines...the road I am prepared to travel; I should eat more vegetables, ten portions a day, organic if I can afford it, cut out processed foods as they contains damaged fats, refined sugar and white flour and all sorts of chemicals. If you can't say it don't eat it the lady at Penny Brohn says. Research has shown these changes can limit cancer recurrence...


When the Penny Brohn cook book Nourish (a food life changer as far as I am am concerned) plops onto my mat alongside the simple but readable Food Rules I announce to Mr H our eating is about to change...

We step into Holland & Barrett with a shopping list and raised eyebrows, as we ask for Tahini, Harissa paste, Tamari and all sorts of seeds and nuts...

Then a friend mentions Abel & Cole and on a sunny Tuesday morning my first box full of Organic fruit and veg arrive on my doorstep to supplement our allotment grown food. I pull out the contents in wonder and embark on an organic food adventure. Abel & Cole have the package sewn up by providing recipes to accompany every type of fruit and veg. Our world of different food has become a universe...and not a processed biscuit or cake in sight!



Mr H has lost a stone but true to nature as a curvaceous woman on chemotherapy I have maintained (while most women going through treatment gain due to inactivity and a bit of craving). We both have a spring in out step and when Mr H comes home from work he bursts through the door asking 

what has my beautiful wife in store for tea tonight?

PS if you decide to try out Abel and Cole mention you heard it on my blog...

Monday, July 21, 2014

Stop the earth spinning I want to get off

I hover my finger over the keyboard. Should I write this. Be negative. Out loud...

Keeping my head full of positive thoughts has left me feeling empty...I am sick of being positive.

I can't squeeze another positive thought out. Despite eleven hours sleep my legs are hollow, only enough gas to help me shower before I need another lie on the bed. Downstairs after breakfast I hang out the washing which has finished whirring in the machine.

...then plonk myself down with a gasp of exhaustion.

I have worked so hard to recover a life after my brain tumour but now I am back where I started six long years ago. Dependent. I push my anger down to my feet each time it tries to surface. Stay positive. You have life. But the chemotherapy is stealing my life...


Now I know why Peter Pan never wanted to grow up...

I suppose in the end, the whole of life becomes an act of letting go, but what always hurts the most is not taking a moment to say goodbye 
Pi Patel - The Life of Pi



Tuesday, July 15, 2014

Chemotherapy messes with my Epilepsy

Someone has opened the tap on my feet and drained all my energy. I need to lie down. I  stare at three abandoned blog posts on my laptop. Only two lines in each. A fleeting idea captured but nothing else flows from my foggy brain...

It is day 7 of my fourth Chemo cycle. Two thirds of the way through!  I sigh with relief as the nausea waves it's farewell, off on a holiday for a couple of weeks. Recently we too tried to go away to the coast...

During the first night away, I become aware that I am lying on a hard scratchy surface. Like slowly awakening from an anaesthetic, the cool hard floor presses into my hat covered head and bare legs. I don't move, I just idly wonder why I am there. A while later I surface again;  I am still on the floor by the bathroom. I try to move but can't...I call out to Mr H. 

The next thing I hear is Mr H saying my name...

Dawn, Dawn wake up you are scaring me...

I open my eyes. I am lying on my side, still on the scratchy hard carpet

Stand up, I need you to stand up 

I crawl, dragging my rigid left leg to the bed, then Mr H calls for an ambulance. 

I don't know where we are I hear him say as he paces the floor to grab the hotel brochure. Out of the recesses of my Sat Nav brain I mutter a postcode which he repeats into the phone...says yes and no and about thirty times before sitting bedside me as I shake, and twitch, rubbing my lamp post leg...

In A&E the Consultant concludes; No sepsis. A series of Tonic Clonic seizures... (The first Tonic Clonic I have had since my initial one in 2008) I tell him the Oncologist has said the Chemotherapy may disrupt my epilepsy...

At 05.30hrs, still wrapped in my dressing gown we Sat Nav our way back to the hotel. We rest. for a while, eat breakfast then pack and re-navigate the journey home, less than a day after we arrived...

I thought you were having a stroke Mr H tells me in the car, you had one (seizure) then another without coming round. I put you in the recovery position but you didn't respond...

No more holidays for us until the Chemo is complete!

Epilepsy Action Advice if you witness me or someone else having a seizure

Do...

  • Protect the person from injury - (remove harmful objects from nearby)
  • Cushion their head
  • Look for an epilepsy identity card or identity jewellery
  • Aid breathing by gently placing them in the recovery position once the seizure has finished (see pictures)
  • Stay with the person until recovery is complete
  • Be calmly reassuring
The recovery position

Don't...

  • Restrain the person’s movements
  • Put anything in the person’s mouth
  • Try to move them unless they are in danger
  • Give them anything to eat or drink until they are fully recovered
  • Attempt to bring them round

Call for an ambulance if...

  • You know it is the person’s first seizure, or
  • The seizure continues for more than five minutes, or
  • One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
  • The person is injured during the seizure, or
  • You believe the person needs urgent medical attention


Wednesday, July 9, 2014

Coast to Coast in memory of a Special Friend and Son

Over three years ago I came face to face with a  big, gentle smile when I met Jon at a Brain Tumour Support Meeting. Jon aspired to travel to the most northerly, southerly, easterly and westerly points in the UK. He managed a trip towards the east but was too ill to travel any further.

In September last year my cousin Tim and a team of cyclists secured Jon's photo to the front of his bike and took him from Lands end to John O’Groats raising money for The Get Ahead and The Brain Tumour Charities.

This June Jon’s parents Jacky and Roy undertook a Thousand Mile Coast to Coast Commemorative Caravan Journey and Expedition - Remembering Jon two years on.
Jacky shares her memories of this momentous journey:

“Never before have I worn the same tee-shirt for so long!


We planned to take our Jon on a journey right across the country, carrying him in our hearts, and his photos on our windows, fulfilling an ambition that he was unable to realise. We told his story at every stop, and promoted the work of ‘The Brain Tumour Charity’ from Lowestoft, the Eastern most point of the UK, to St. David’s in West Wales.

Roy and I pulled on the ‘Brain Tumour Charity bright red tees as we approached each caravan site. We were ‘The Charity people’. If any doubt remained we soon put paid to that as we decorated our caravan with banners, balloons and bunting!

At the start we released 26 red balloons which were carried off by a brisk southerly wind at Ness Point. This marked the start of our adventure, the first emotional moment of many along our way.

People, seeing our posters, came to share their stories of loss; a grandchild, a mother, a son in law, a sister. People touched by love and loss. We felt humbled to be invited into their sorrow, and honoured to be able to tell of our precious boy.



The donations amazed us. Even during the evening people knocked on our caravan door with money; generous, warm people, yet total strangers, dipping deep in pockets to fill our collecting box.

But some people averted their eyes, looked to the ground, not wanting to get involved with ‘The Charity people’


We arrived at our final destination of St. David’s to a wonderful welcome. A collecting jar, and cut -out from the ‘Caravan Club’ magazine was already in place on the counter. We received a warm, sunny reception, despite our weariness after 1000 miles. We are proud to have achieved our objective-for Jon.


We were delighted to be able to send over £1200 to the Brain Tumour Charity, where we have set up a fund in Jon’s name”:


Or Text JONF85 £3 to 70070 (or other amount!) 

Saturday, June 28, 2014

Myriam comes to my hairy rescue...

They're growing I groan to Mr H 

What are?

Look! I say as I shove my shin in front of his face in bed...they've got a cheek ... and I've cancelled all my waxing appointments.

Chemo cycle by chemo cycle my head is making the transition from a fluffy peach to a pale nectarine. Some of my eye lashes have gone down the plug hole but while I now use an eyebrow pencil to complete my eyebrows, I still have to pluck hairs which sneakily sprout underneath...

As if that wasn't bad enough, my upper lip has started a summer campaign to raise money for Mens Health in Movember. If I don't act soon I will be eating moustache hairs for breakfast.

So I amble up the road to see Myriam. I am at risk of infection at the moment  I tell her as  I pull my own towel out of a bag and lay it on the couch. Myriam smiles understandingly as she puts her own away before she cleans her hands with alcohol gel and brings out new wax rollers

My goodness girl Myriam declares as she glides her roller over my legs, a cricket pitch! 






And with each pull I wave goodbye to my hairs...




for now 




When Mr H saunters in from work he grins as he runs his hands over my bronzed, baby smooth legs...

Share It