Always wear clean underwear . .

. . in case you have an accident and land up in hospital.

Did your mother drum this into you? Well it is good advice – believe me, I know.

Thinking about returning to the chemo chair for Herceptin has reawakened some bad memories I had chosen to bury.

It was BC’s birthday, a week after my first dose of level two chemotherapy. We were meant to be on holiday, but had to cancel when I experienced more and more side effects day by day.

As a token gesture we decided to venture to the nearby National Trust property. We could walk as much as I felt able, or we could sit and have tea.

Before we set off I called my consultant to ask for an appointment – I needed to talk to him about the side effects. I left a message with his specialist nurse.

And we prepared to go out.

Although it was midday I was still in my pyjamas, feeling fragile and shivery. Applying my limited linear thinking I zipped a fleece jumper over my pyjama top, pulled on a pair of jeans and wrapped myself in my windproof jacket. With a tug of comfort I pulled a baseball cap low over my eyes and pushed on sunglasses.

No one would see me or recognise me.

But half way round the gardens I ran out of steam. Maybe lunch would be a better idea – we stopped at the garden kiosk for a rest and a sandwich.

And there the day fell apart.

My sandwich was dry and hard, it must have been days old.

I was incensed.

It was only a sandwich but it represented our fragile attempt to acknowledge to each other that this day was in some way different from all the other chemo-hazed days. I had so little to give to BC and he was giving me so much. I had no card and no gift for him.

I am told I barked at the woman as I returned the sandwich. Recalling the look on her face I can believe that was true.

As I bit into the new sandwich my mobile phone rang. Could I come and see the consultant straight away?

Time stopped.

Cow's pyjamas

The image of me pulling the fleece over my pyjamas filled my head. In my mind I raced through the journey home to change my clothes and realised I did not have time.

Too bad.

“Yes, thank you,” I bleated, “I will come straight away.”

As we set off towards the car the wounded woman stepped to the back of her kiosk –  a child cowering from an angry parent.

For sure, I felt humbled.

. . And I got to show my pyjamas to several important people – pretty and pink and yes, they were clean enough!

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My hair

Those of you who do not see me regularly might be wondering what I look like.  I have not mentioned hair loss at all in the blog . . . something folk are usually curious to know and I would rather not talk about!

Well, that is me in the middle (almost).

The ‘cold cap’ was great. I made it through the treatments and kept my head of hair – until chemo 4, the one that knocked the stuffing from me.  My hair began to fall out three weeks later.  Just a depressing heavy shedding . . day . . by . . day . . by . . day. I collected it all in a bowl as a way of measuring the amount and the rate of loss.  Hair began to appear everywhere – on my shoulders, on the floor and in my mouth. My eyebrows and eyelashes faded away.

The bowl became a sad shrine;  my scalp ached and my heart sank.

8 weeks after my last treatment the rate of loss slowed down. I am left with patchy thinning – visible to the inquisitive onlooker. My hair reflects the chemical blow that my body has absorbed.

It will grow back – I hope.

The third picture represents the swanky wig that remains beautifully nested in its box.  I dreaded baldness so much that I bought the wig and a selection of hats and scarves ready to keep me warm and hide my scalp from myself as much as from anyone else.

Many women seem to come to terms with chemotherapy baldness easily and wear their shiny pate with dignity.  Some even post their photograph freely on the web. Others withdraw totally.

Time passes and hair regrows. In the spectrum of risks to health, hair loss can seem trivial – and yet the experience can be one of the most traumatic parts of the journey.

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chemo 5 – stopping short

Yesterday we met the oncologist to talk over the side effects from my second phase of chemotherapy and to plan ahead. On the scale of experiences I have had a rough time – needing antibiotics, sleeping tablets and an e.c.g. to check the effects on my heart. He was clear that the risks now outweigh the benefits for me and we should stop.

I was not surprised.

The amaryllis greeted us on the window-sill when we came home – blooming beautifully.

I bought it to pace me through the second three treatments. The day I reached rock bottom and called for sleeping tablets, the head of the amaryllis began to bulge and show red. The stalk was only 11 inches tall instead of the 20 inches I expected it to be.

This flower was stopping short and moving on to bloom early.

What can this mean?

Chemotherapy is treatment with chemicals that kill dividing cells. Whatever cells are dividing at the time will be destroyed – cancer cells, bone marrow, hair follicles, gut lining. The chemicals cannot tell the difference. And so it has benefits when it hits cancer cells and risks when it hits normal cells.

In breast cancer treatment chemotherapy is used before surgery to shrink the tumour, or after surgery to mop up any cells that might be left or that might have spread. There are many unknowns.

For me the treatment is addressed at might. No-one can answer questions about might and no-one can make the decisions for me.

And so, last November I went for prayer with two doctor colleagues who run a monthly prayer meeting for healing in their surgery. I shared my situation and my dilemma. As he prayed for me, one said with a twinkle in his eyes:

Well you know you are dealing with the God of the Universe here.  If he wants you to have chemotherapy, then he will make sure you get it

5 days later  I had another visit with the oncologist.  As I listened to him speak about might . . and maybe . . and perhaps . .  and in case . . I heard God speak through him and I signed the consent form.

Then I did a deal with God.

Okay – I get the message and I commit myself to this treatment – but please let me know me when I have had enough

It did not dawn on me at the time that, once I started the treatment, the only thing that would stop me completing it would be bad side effects.

This cycle I reached enough.

But who can say what enough is? I am relieved that this period of suffering is over. The specialist is cautious because I have had ‘less than optimal treatment’ – even though ‘optimal’ cannot be defined. We have drawn a line under the treatment of any cells that might already have spread and might have escaped 4 hits with chemotherapy.

Returning to what this means for me, I discover I bought an Amaryllis Ferrari – a type that blooms on stout short stems. It was never going to be full height. God knew what would happen. He planned my enough while I was committing to stay the course in obedience to him.

Before they call I will answer;
while they are still speaking I will hear.

And a verse given to me yesterday by a friend . . .

Now glory be to God who by his mighty power at work within us is able to do far more than we would ever dare to ask or dream of – infinitely beyond our highest prayers, desires, thoughts or hopes

I dared to pray for enough and I dare to trust God for what might or might not happen tomorrow . . .

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A Teflon Prayer

Chemotherapy is toxic. The good news is that it can destroy cancer cells – the bad news is that it affects many normal cells along the way causing significant side effects. Round two of my treatment packs a powerful punch.

I want the benefits and not the side effects, and so I need a Teflon Prayer . . .

At first I rebelled strongly against having chemotherapy.  I hated the thought of subjecting my healthy cells to such a toxic assault.  I went for prayer and a young man I didn’t know looked up Psalm 118 in the bible on his Blackberry – he told me God would look after me:

The Lord is my strength and my defense; he has become my salvation.

The Psalm gave me the guidance and the metaphors to pray for the help I needed – and so began the Teflon Prayer.

Jesus said:

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  For  everyone who asks receives; those who seek find; and to those who knock, the door will be opened.

And so BC and I pray together daily for the specific help we need; that the Holy Spirit in me will make me strong and defend my healthy cells from harm – a holy Teflon coating! And we pray that any cancer cells will be consumed as quickly as burning thorns.

My times are in God’s hands, and I take advantage of all the support I can get.

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Chemo 4 – snakes and ladders and painted nails

GOOD NEWS – my blood test was above borderline and I had my chemo.  The first dose of round two – a different and stronger drug this time.

Last night I was exhausted. This treatment schedule is like a prolonged game of snakes and ladders. The joy of reaching some sense of normality is soon dampened by the prospect of another snake-slide to side effects and infection risk.

Today was stressful and tearful for me again. I had read all about this new drug, or so I thought.  I came resigned to cope with the side effects and prepared with ice packs to protect my finger and toe nails from damage – vanity first.  What I had not spotted was the small risk of an immediate anaphylactic reaction to this new drug. And of course when it was spelled out to me I knew exactly what it meant.  I recognised the cautious looks from the staff as they ran the first lot of treatment in slowly.  Their questions about how I was feeling came often and were purposeful – I knew why. My husband knew what was going on and lifted my hand and kissed it. We were both journeying into the unknown again. Tears welled up.

I closed my eyes and prayed the Jesus Prayer, matching my breathing to the rhythm of the words.  I knew I was going to be fine.

And so with my head encased in a cold cap, my fingers and toes under ice packs, I wrapped myself in my blue mohair blanket, a gift from my mother many years ago, and snuggled up to pass the next 2 hours. And I was fine – able to move between my own world of prayer and the lives of those around me.

The chemo suite is a very busy place. The patients are going through an extremely traumatic experience, all putting on a brave face and thankful for the camaraderie and shared ‘normality’.  I am amazed at the courage they demonstrate. As my friend in the next couch gathered her bag to leave she reached out to me to grasp my hand. Her touch spoke love and comfort. She understood. Tears welled again.

And the staff, working under constant pressure, manage to tread that fine line between business and humanity.

We came home at 3.00 pm, tired and relieved and very aware of the love and prayers surrounding us.

And the painted nails – apparently there is some evidence that painting your nails prevents them from becoming damaged by the drug. I had noticed women with stunning dark red nails and thought it incongruous.

I have not yet found the evidence – but maybe even I can paint my nails bright red!

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My blood result

Had my blood tested early this morning as usual, and have not received a call about the result this time.

I hope this means all is well for me to go ahead for my next treatment tomorrow.

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Preparing for chemo 4

The weeks pass by and I move on to round 4 of my chemo, scheduled for Tuesday 16th March. I feel very encouraged to have three cycles behind me.

And so once again Monday starts with a test to see if my blood levels have recovered enough from round 3.

I feel very well  . . .

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Which perspective – fear or hope?

“You  don’t know it yet, but we are the lucky ones” . . .

A fellow cancer sufferer sent this message across the world to Lance Armstrong when he was having chemotherapy for cancer. At the time he thought the man was a nut. But later he began to realise exactly what the man meant.

As he absorbed the full extent of his illness he was forced to make a choice between fear and hope.

I wanted to live, but whether I would or not was a mystery, and in the midst of confronting that fact I was beginning to sense that to stare into the face of such a fearful mystery wasn’t a bad thing. To be afraid is a priceless education. Once you have been that scared you know more about your frailty than most, and I think that changes a man. I was brought low and there was nothing to take refuge in but the philosophical: this disease would force me to ask more of myself as a person than I ever had before, and to seek out a different ethic.

Yesterday, as I coped with the wave of side effects from another dose of chemotherapy, the song that came to me in the chemo suite rang in my head all day. It filled me with hope and a vision of the future.

There is a higher throne
Than all this world has known,
Where faithful ones from ev’ry tongue
Will one day come.
Before the Son we’ll stand,
Made faultless through the Lamb;
Believing hearts find promised grace—
Salvation comes.

I do feel that I am a ‘lucky one’. To be forced to confront the frailty of my life, and explore the higher thoughts of heaven and eternity, is a precious experience.

Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that’s where the action is. See things from his perspective.

And from that perspective, I want to live.

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Chemo 3: words, music and God speaking

Home again, had my treatment and doing fine.  Nibbling dry Shreddies works well to keep nausea at bay.

My blood count rose to even higher than after the first treatment. I am very, very pleased to stay on schedule.

I took my multivitamin tablet with minerals and iron with my lunch! 🙂

Setting off for my treatment my senses are heightened from the word go as I tune in to all that I see and feel and hear.  The nausea of anxiety is deep in the pit of my stomach; the smell of the hospital stings my nose as I queue for my blood test; the warning beep of the transport trolley jangles in my head; and the ring of the unexpected test fire alarm hurts.

I scan people’s faces to read what they might be thinking and feeling.  The expression on the face of the staff who are to look after me matters a lot – they heighten anxiety or instil confidence.

As I settle on the chemo couch to receive my treatment, the music on the radio intrudes. I do not like the words or the music. A nurse turns up the volume – “We need this to keep us sane”. The woman opposite has a headache and can stand it no longer. She asks for the radio to be switched off – a different nurse agrees, saying he will be killed for doing it.

And I can settle to the intimacy of my thoughts.

I begin to hear a new song in my head and I tune in.  The music brings brightness and lifts my spirit.

I am curious to explore the words. And I remember conversations I have had in the past weeks about HOW God speaks to us and HOW we recognise his voice; exploring what it means in John chapter 10 that the sheep recognise the shepherd’s voice.

I listen to the words of the song – the Shepherd King, and I feel a rush of excitement.

I am being given a glimpse of something much, much bigger. And I dare to believe that God is speaking into my life in a way that I know it is Him.

There is a higher throne
Than all this world has known,
Where faithful ones from ev’ry tongue
Will one day come.
Before the Son we’ll stand,
Made faultless through the Lamb;
Believing hearts find promised grace—
Salvation comes.

Hear heaven’s voices sing;
Their thund’rous anthem rings
Through em’rald courts and sapphire skies.
Their praises rise.
All glory, wisdom, pow’r,
Strength, thanks, and honor are
To God our King, who reigns on high
Forevermore.

And there we’ll find our home,
Our life before the throne;
We’ll honor Him in perfect song
Where we belong.
He’ll wipe each tear-stained eye
As thirst and hunger die.
The Lamb becomes our Shepherd King;
We’ll reign with Him.

Enjoy the words and the music, and the story behind it . . . . and reflect with me on how God speaks to us.

The song is based on Revelation chapter 7 – you can listen here (you might like to keep your eyes shut).

And you can listen to Kristyn Getty telling how she came to write it.

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Taking control of your life . . .

How do you keep yourself in the driving seat – holding on to the power of choice for yourself?

Today I have to let go of the small amount of control I thought I had over my schedule. I might have a third dose of chemotherapy on  Wednesday – or I might have to wait and have it on another day.

This morning I heard a moving interview with a young woman who has anorexia nervosa. She told us she began to restrict her food intake as a way of regaining control of her life after the death of her grandmother. Many of us will be unable to understand the connection she made, and yet we can identify clearly with the desire to be in control of our own life and circumstances. We all do it, and we choose our own ways of doing it.

Yesterday a friend commented on how random breast cancer seems to be. Eat a healthy diet, exercise regularly, get cancer.  A ‘healthy’  lifestyle does not come with a guarantee.

As my mind processes all this information at the end of the day, I see Jesus hanging on to the storm-swept boat. The disciples with him are terrified for their lives. I pay attention to the fact that the wind and the sea are at his beck and call – and I give up the need to be in control.

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