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...

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…

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..