Every day is a bonus...

In March my heart sunk into concrete when I first stepped into Oncology's revolving door as my mind screamed, walk out walk out. I hung my head and stared at the pale brown laminate floor under my feet until I reached reception...

Can I help you?

I have an appointment to see the oncologist but don't know where to go...

I don't belong here I told Mr H as we sat nursing drinks at a round orange table in the WRVS coffee shop before we went up. In the lift  I played spot the wig while my mind's chatter drew a picture of the pale, grey faced, ghost like figure I would become. 

Upstairs in outpatients I saw a lady with no hair smiling. Smiling!

Then last week exactly six months later, when I told Mr H I was going to rip my wig off in a Marks and Spencer's cafe he said please don't, the locals will scatter in fear. So I have ditched my wig because one minute I feel like I am in the Caribbean sun then the next I tug my hat back on because my head is as cold as a winters night. 

...now I hardly notice the revolving door as I chatter and giggle my way in to greet Derek (who manages the WRVS shop) as I buy my coffee. His welcome smile makes my morning...

You are looking bright are you coping with the treatment OK

Thank you... not too bad... and we chat about the importance of making the most of every day in my world every day is a best dress day I tell him so he shares his mantra with me..

Every day is a bonus...

After six doses of chemo and my first weeks worth of radiotherapy the pale ghost is no where in sight

I have now learnt through Mindfulness not to engage with the silent chatter that goes on in my mind. Now I notice it then watch it float by...

My grey cells have ground to a halt...

I have strained to think of a blog to write in the last couple of weeks. I closed my eyes and tried to relax. Nothing, not a sentence. My creative grey cells were on strike. Ground to a halt...

But my thinking brain is buzzing with worries and questions... when will my breast and shoulder go red while I have this radiotherapy...how likely is fibrosis of the breast tissue... what will happen when I start the hormone treatment...can they see me when I am on the table in case I have a seizure... how much more tired am I going to get...is it possible to be more weary than this?...

I write it all down in my Breast Cancer Note book, lists of worries and questions to ask at each appointment. I tick some off when I chat to my GP on the phone but others spring in to take their place...

Then today after my 6th Radiotherapy treatment a smiling blond haired lady met me as I came out and took me to a private room to chat - a review meeting. She talked me through most things I had stored in the worry list... Some people never have a skin reaction while a lot do, it happens after two or so weeks...fibrosis can occur up to a few months after but is mild in most women...:the throbbing pain is caused by tissue inflammation and is normal...the Tamoxifen (hormone treatment) can cause weight gain and hot flushes, caffeine and stimulants can sometimes make them worse... drinking plenty of water can help the fatigue as it flushes out some of the effects of the treatment...yes they can see you in cameras but I will tell them you have epilepsy and make sure they keep a close eye...

With each explanation and answer I breathed a bit easier. I asked all the questions in my book and explained how I was feeling about the treatment, the embarrassment I felt each day, made worse because a man is part of my treatment team. An emotion that for me is overwhelming every other thought...she listened without judgement asked if there was anything they could do to make it easier and checked if I had someone to talk to...

I walked out of Oncology into a blue sky day and my spirit felt as bright as the sun. On the way home blogs sprung into my head. My thinking brain had been unclogged...

Normal service will be resumed shortly...

...The next day 

Today I am met by three ladies, the man has stayed out. I show them the emergency epilepsy drug I have in my bag which they can give me if I have long or multiple seizures... 'D' walks me round to their room and shows me the screen they are watching me on!...if only my medical history had been fully passed on! But today is a new day and the only thing that is real about this journey is the step I am taking at this moment...that's all there ever is... (mindfulness)

So for episode 7 of the radiotherapy show and for the first time I relax on the hard table and breathe calm breaths...

"You cant stop the waves, but you can learn to surf"

Jon Kabat-Zinn

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

Michael Jordan

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...

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!

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

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...

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

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

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