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...

Wednesday, June 18, 2014

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

Tuesday, June 3, 2014

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



Tuesday, May 27, 2014

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...

Thursday, May 22, 2014

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 to 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...




Monday, May 19, 2014

Clippers, tears and a wig....



As I wash my hair on day 21 of my first Chemo cycle, hair clumps slide out into my hands and my fingers are a tangle of strands. Like collecting shells I line the clumps up on the side of the bath. The plug hole is clogged like the kitchen sink after rice crusted plates are washed.


I stare at my bald spots as I clutch a mirror, like a contortionist I try to get a peek from all angles…

It’s time” I tell Mr H when he wanders in from work. I’ll just get changed he sighs.

Let’s do it in the garden he suggests with a wry smile as he picks up the clippers. We agree on a number 2.

As Mr H moves the clippers over my head I watch my hair drop onto the grass.  He works silently apart from asking if I am OK?  

Yes I sniff. I hear tears in Mr H’s voice as he hides his eyes behind shades…

 
But the air is filled with the twitter of new life as the parents of our baby Blue Tits flutter in and out of the bird box behind me.




 There he announces as he places the clippers onto the deckchair.










I wander inside in the hope I now look like Sinead O’Connor. Instead we agree my head is like a badgers bum, a mixture of black and white spikes.

I plonk myself down on the settee and bawl like a baby grieving for my blond sun bleached hair. Mr H sits beside me and tries to swallow his tears but some trickle down his cheeks.

Lets go out Mr H announces, go shopping, no time like the present…

Hang on while I put my hair on…



The next day I ask myself did I cut it too soon, I should have had another day with my hair, I cut it too soon...


In the following days I grab at a hat when the doorbell rings, pop upstairs to fetch my hair when I go for a walk and wear my hat when I go to bed to collect the never ending bits which fall out in the night…


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