Red

I want to buy you that heart Mr H says with a tinkle in his eye as he points to a crystal pendant in a shop window in the pretty streets of Stockholm Old Town. 

So with a giggling grin smeared across my face we step inside.

Mr H points it out to the Swedish lady. She fetches it from the window display and holds it out to me. But with only a glimpse I back away from the counter...shaking my head...unable to speak.

As waves of nausea crash inside my stomach I stutter I can't have it...

I swipe at the stream of unexpected tears as they drip onto my blouse. 

Concern is etched into Mr H eyes. 

Chemo is all I can say. 

Chemotherapy drug I gasp.

Red. 

Red in crystal. Looks like Red in plastic.

The lady immediately moves the pendant out of sight and gently puts her hand on my shoulder. I understand she kindly says, concern glowing in her eyes now too.

I never thought Mr H says as we leave the shop. 

Where did that come from I say, shaking my head. I thought I had locked that memory away forever.

Having a hat of a time!

In Oncology I cannot pass the hat shop without dipping into my purse, in fact I have to plan hat buying time into my visits. Last week I spied a purple and red one...

I need it I told Rachael as I treated her to my hat buying grin. It is getting colder and it will match my coat...


I used to think hats were for wimps and when I rambled around the country I refused to cover my head unless the ground was winter white! But having no hair has thrown me into a playground of hats! I spend hours hat browsing on Amazon then watch with glee as the postman slides them through the letterbox and grab what I can when Accessorise have their 70% sale. 







Some have rain protecting brims, others are cosy warm wool, one has a feather and a few are just because I couldn't live without them!  






Each day I pick one out with care, a colour to complement my outfit and thickness to match the temperature outside. Then I do my mirror-look test before I leave the house.

I have inside hats too and as the evenings get colder Mr H often exclaims my little Eskimo you do make me smile.....as I lie on the settee, a thick woolly hat on my head, scarf round my neck and blanket wrapped around me. The cancer treatment has stolen my body heat. 




I have a wedding coming up and am in a hat war with my sister in law. I know I will win! Although I have given her a hat start by declaring my hat wearing head...

When the clouds are grey a rainbow of colour brightens my day. 

I am having a hat of a time. 

I thought I could (bracket Breast Cancer)...

After my diagnosis and once I stopped smashing windows and throwing plates at the wall,  I drew brackets in the air and declared to everyone who asked :

it's OK I will get through the treatment then get on with my life. 

But without realising it, I set those brackets in concrete. The space filled with (sore wounds, drugs, IV lines, jack out of the box nausea; hair dropping out onto my shoulders and finally twenty trips to be zapped....

But when I came to close the brackets, Tamoxifen and further surgery blocked the closure... 

I was stuck in a tunnel of treatment

So for the last two weeks I have tucked myself underground. To reflect. To cry out the anger about things gone wrong. My messed up 50th birthday year. My changed body. My energy so low even crying is tough...

Now with my badger like head I peek above ground to see light, a bit of blue sky, and to discover my pen again.

I needed the time underground to root out a way to close the brackets. 




And with tears of relief! (Breast cancer diagnosis, Surgery, Chemo, Radiotherapy) or as Jude calls it (Cut, Poison, Burn!!)

So today I drop my first Tamoxifen tablet (hormonal therapy to treat breast cancer) into my palm, ten days later than planned, and I open a new phase of my life... Menopause and a new look...

I want a kink in my follicles...

Chemotherapy has two potential benefits I tell my friends; kicking the cancer into touch and putting a kink in my follicles...

I tell everyone I meet that I want a kink in my follicles... that and to be a red head!

So now that the hairs are poking through I do a daily inspection for a curly one...

Can't see any at the back...

difficult to get a skyline view ...but nope none there either...

But hang on a follicle watching minute...is that grey one a bit bent? 

Yippee!!

Now about this red head...

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...

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

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

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...

Dealing with Cancer's topsy turvy world...

Mr H often says I am in awe of you Dawn

why I persist

It's how you deal with the cancer and treatment, how you cope, how you still help others. 

On February 10th this year when the diagnosis of cancer was calmly delivered in a small clinic room as we stared at the Xray of my breast on the computer, I dropped my head into my hands... then I looked up into Mr H's pale face and said:

I can't do this I'll never cope.

The annoyingly slim, dark haired, Consultant said: 

but you will cope Dawn and I wanted to scream how do you bloody know ...

At home I sobbed. I shouted. Hit cushions. Stormed from one room to another as I wrung my hands...

had I hit the wall of 'not coping' or was this my way of coping with bad news?

As I endured the two weeks until my appointment with the surgeon to learn the fate of my beautiful breast, I shed enough tears to fill a reservoir. I made phone calls then put down the phone, too upset to talk. Every time someone said you are strong or stay positive I wanted to shout STOP BLOODY SAYING THAT! 

Cards dropped on the mat and I hid them away. I am not ill

Was this 'not coping' or was it my way of dealing with a traumatic event?

I no longer believe there is such a thing as 'not coping' 

In the last three weeks I have dealt with a range of symptoms...my way of coping...

With no energy to go beyond the front door and even though a strong breeze chased clouds across the sky I rested in the garden amongst flowers and the twitter of my newly fledged blue tits...









On a day at the seaside, unable to walk far I concentrated on a tiny crab lying motionless in the sand and curious fossils embedded in a stone, even though their hearts no longer beat they have left their beautiful marks...

...and when the sea side wind caused my head and ear to pulsate for two days I grumbled loudly at anyone happy to listen then visited my GP. But next time, like a geek, I will wear a woolly hat pulled low over my wig covered ears, however hot the sun!

Nowadays living dangerously means daring to eat a poached egg when the yolk is still dippy soldier runny and when I can go to the allotment my tasks are nearly all on my bum...

But my bone marrow has coped with the chemotherapy onslaught this time. My neutrophil count is already high enough for me to have Chemo 3. 

On time!

I am coping...

If you are faced with a mountain, you have several options,

You can climb it and cross to the other side.

You can go around it.

You can dig under it.

You can fly over it.

You can blow it up.

You can ignore it and pretend it's not there.

You can turn around and go back the way you came.

Or you can stay on the mountain and make it your home

Vera Nazarian. The perpetual calendar of inspiration

Surfing Cancer's emotional waves

Yesterday I cried into cushions, burst into tears on the phone and sniffed my way through conversations...

2014 is passing me by I sobbed to my brother when he called...I am drowning in the arms of Cancer...three days after my second chemotherapy my empty legs refuse to keep me afloat... 

I was in a swell of despair...by bedtime I was a cried out wet rag.

This morning a smiling taxi driver pulls up at my door and we chat as he weaves me through the rush hour traffic to my 'Look Good Feel Better' Pampering session at the Oncology Centre. 

...in the waiting area we watch each other from under our flickering eye lids and avoid a shared smile in case she is not the one with Cancer.

On our way to the lift a blond lady smiles at me; you were in the next room to me on the ward she says as another joins in... and I was in the first...three in a row! Our smiles broaden and we lift our gaze to take in each others faces...and hair...

Squashed into the lift we share hair truths...mines a wig...never, it looks incredible...Thank you's bounce off the lift walls and we walk out wearing grins.

As we introduce ourselves there are so many stories, mine just stirs into the mix and our nervous smiles relax as some ladies take off their wigs and hats. 

We gaze at ourselves in a mirror and are amazed at the skin care and make up goodies which tumble out of our bags (all donated by the manufacturers).  We twitter like newly fledged birds as the qualified beauticians guide us step by step through how to make the most of our faces.

A (bit worn off as I am now back home) Make up selfie!!

The two hours zoom by and a few of us carry on sharing our wig and hair loss stories while standing by the lift...an hour later I am nursing the dregs of my coffee while still talking cancer with three beautifully made up ladies.

A taxi collects me for my trip home. Jason and I chirp away happily as we talk about life changing moments. He gave up his corporate work to drive a taxi...choosing to earn money to live life rather than being defined by his work and have no life... Mine?

... well today it was going to a Look Good Feel Better Pamper session, where I met others who are surfing the same waves

A day without neutrophils..!

Bone marrow 'O' bone marrow, grow me some neutrophils...

A dear friend, California Sue, has sent some of hers in an email, others have donated by post. I think I will set up a neutrophil bank. 

Sue and I have trawled the internet, eating good proteins is helpful in general but not specific to growing more neutrophils. Sue found a comment that fresh fruit and vegetables should help, so my fridge is full to the brim of salmon, tuna and greens and my fruit bowl is fit to explode! So many legs and fingers are crossed across the UK; I think people will start to talk about a new twisted limb disease, 

The trouble is I can't do anything but sit tight, counting off the days until my next blood test. My third attempt at my second FEC'n Chemotherapy. I need to be at 1.0 but have only reached a neutropenic level of 0.7 in the last three weeks.

So I pass my days in a mixture of quiet neutrophil contemplation then noisy shouting and fist banging anger. I need more neutrophils, I need more...

Today has been amazing as I didn't think about neutrophils, Four whole neutrophil free hours! A special person came to visit, a new friend who I met by acting boldly! Jim. He brought Rosie with him and there is nothing like the giggles and gurgling of a baby to focus a mind on the joys of life!

Well that and cake!

The next day... I held my arm out as I sat in the chair, chattering like a bird who has just been fed! 

The nurse walked towards us with paper in her hands and a smile spread like butter across her face...

1.28! Yes!!! Chemo two here I come...

It only takes a pin to burst my bubble

Vulnerable was first linked to my name two years after my brain tumour surgeries.

I played with the word in my mouth, ran my tongue around it, said it slowly. Vul...ner...able...

Me?

Everyone said I was positive, a fighter, strong... 

But am I?

I should be...

But I had lost my old life. Gone. Except for Mr H, my family and a few friends who stuck around like glue despite my bad days when everything seemed blacker than coal.

Now I am dealing with my breast cancer, the surgery which has changed how I look and the chemotherapy which has taken my hair. I am not fighting it. How can you fight cancer? It's there. Only treatment and a positive attitude can keep it at bay, maybe cure it even. I haven't got the energy to fight. Keeping a smile on my face as I go from appointment to appointment, spending time at the allotment and trips out with friends drain me.

I stay safe and cosy in my 'doing OK' bubble when a smiling voice answers a question I have asked twice before, a friend listens without offering advice, or a phone call is returned when agreed.

But when someone doesn't reply to an email which took a bucket of emotional energy to write or when chemo is delayed because my neutrophils are too low or I have to ask a nurse or doctor to wash their hands instead of it being automatic, my voice wobbles and my lips tremble. 

These are the pins which burst my bubble...

Hair today...gone tomorrow

When Mr H rang me in the week I announced I will be feck'n thrilled when my hair falls out 

Why he giggled

Because washing it is like doing an aerobic workout without good legs to support me...

You see at the moment I can't wet the PICC line in my right arm (I cover it with a plastic sleeve) and I still have to keep my left breast dry as the nipple has not completely healed. So I shower on my bath seat with a flexible shower clutched in my wet fist.  When I am done the bathroom floor is a swimming pool...and I am a semi wet, worn out rag.

Each morning I check my brush for stray hairs. None. Again! I am ready...well as ready as an astronaut when he sits in the rocket awaiting blast off for his first trip into the unknown.

I suggested to Mr H that we checked out wigs before my first chemo...

...at the wig shop, as my smile broadened Mr H dropped his shoulders and joined in the fun....

I posted pictures on Facebook and asked friends to vote on their favourite!  

In the end I chose an NHS wig in a shop recommended by the Oncology Centre and better still free of charge...but I might get a red one to go with it!







I have filled a box with a rainbow of soft hats and scarves. I am already the Queen of Hats!.....

I started this year with a plan to grow my hair, but Lois has now cut it; the same style as my wig...less to fall out! 










On Day 16 of my first Chemo cycle I ran my fingers through my hair and strands silently drifted out...

Today is Day 17 -  Clumps fell out this morning and my scalp is sore and feels like it is sun burnt.


When I sit in front of the laptop to type this blog, I absent-mindedly tease my fingers through the top of my head. Like clouds releasing snow, some of my follicles have opened and hair drifts into my hands and onto my lap and shoulders. I collect a little pile on my knee...

I didn't need Chemotherapy for my Meningioma Brain Tumour, but the surgeon shaved a U shape into the top of my head each time I had surgery so I have some experience of the growing back bit!

Organise, don't agonise

Nancy Pelosi

11th day of my first chemo cycle and I feel like a crumble

Like a dawn mist, my nausea has lifted so Mr H suggests I join him at the allotment; my first visit this year. I plonk my bum down on the deck chair and like a cat treated to cream, I purr with satisfaction as I cast my eyes over our plot..

Black and white flowers have sprung from the broad beans plants, elephant garlic and onions have withstood the winter rain and the rhubarb is so big it almost touches the stone wall which shelters the plot from the lane. You have done a great job I tell Mr H. 


 I grasp a rhubarb stem  and ask can I pull this out...

Yes take a couple from each crown. Last year we had to leave the new crowns to settle for a year. 

I gasp as the stems come away in my hand...





I pull tiny green weeds from between the parsnips and am in awe of the Canterbury bells and purple aquilegia which I planted from seed the previous summer. They have slept through the mild winter and have now sprung into life, last year they were submerged below white and pink cosmos.

After ten minutes of activity Mr H says right now rest and enjoy the sun I just love having you down here with me. So like royalty, I sit and watch him work...

Two hours at the allotment heals my body and mind

At home I watch as the rhubarb oozes from underneath the ginger crumble. Delicious with clotted cream ice cream..

Am I a vegetarian or an attention seeker?

At my brothers wedding in 1994 I pushed the beef around my plate before I cut it into tiny pieces hoping to hide it at the side of my plate. I kept sneaking envious peeks at the vegetable lasagne my veggie friend Mike was tucking into beside me.

The following day I made an announcement I am a vegetarian. Meat for me is history. But I couldn't turn my nose up at a plate of steaming fish and chips so I became a pescetarian. 

Then after my brain tumour surgery the smell of crispy bacon nearly drove me insane. One day Mr H found me tucking into a home made crispy bacon sandwich with red sauce dripping off my chin. 

When my nephew quipped that I was attention seeking, I declared...

I am a pesce-crispybacon-tarian!

In the last five days, since my first chemotherapy, my appetite and taste buds have gone on strike! I have eaten dry cream crackers, the odd ginger biscuit, a packet of salt and vinegar crisps, a solitary fish cake, a bowl of stewed apple and a couple of pears.

Today when Mike takes me to the sea for the day, his jaw drops to the floor when I ask for a coke, full strength, not diet, in the cafe as we sit down to rest. 

You never drink pop

I know but this and lemonade and have been all I can sip without feeling sick. I manage glasses of water later on in the day but not before mid afternoon! 

My toasted tea cake tastes like a serviette so like a child I pick out the currants one by one and pop them into my mouth. They taste like currants!



On our way home we stop at my local shops. I crave crispy bacon and egg which I get from the deli. In the Nisa store Mike carries the basket, his grin of amazement spreading as I drop in two bottles of coke and 7 UP, a packet of cream crackers and two packets of Walkers salt and vinegar crisps!

Now my nausea is slipping away dinner is a tea plate banquet!