9th December – A Year is a Long Time in Cancerland

One year ago today I had my final radiotherapy treatment. Number twenty of twenty. This was the end of my so-called ‘active treatment’. Nine long months, from surgery, through the nightmare of chemo, to the relative calm of radiotherapy. And then no more. No more daily, weekly or monthly hospital appointments. No more being poked, prodded, pricked or poisoned.

One might think this would be a cause for celebration but I didn’t feel like skipping out of the hospital, clicking my heels together in a joyful dance. My husband and I went to the beach with our dog that December day last year. It was cold, blowy, empty. We needed the peace and solitude of a winter beach. We stood on the sand, hugging, crying quietly with relief.

Friends said ‘I bet you’re glad that’s over. Now you can get on with your life’. But it wasn’t ‘over’. So, so not ‘over’. Maybe, after the hurricane of cancer has ripped through your life, it is never ‘over’. Body, mind and spirit – all were storm-damaged. Not wrecked beyond repair, but in need of time and tenderness to begin their recovery. So, what felt at the time like an ending, turned out to be a beginning. The start of my life as a post-canceree.

The past year has brought its own lows – the intense post-treatment fatigue, the frustrations of a brain fogged up from chemo and cancer stress, the aching joints caused by the drug Letrozole that I will take for five years, a couple of terrifying ‘Is the cancer back?’ scares and, last but not least – and in fact probably most – the emotional struggle to accept, absorb and assimilate the fact that I’ve had cancer.

On one level, of course, I know I’ve had it but on another deeper level, I have struggled to believe it. I want to grasp it, own it, hold the concept of it in my hand and my heart but I haven’t yet been able to. Does that make sense? My mind has been in turmoil at times. I have, by turns, pretended it hasn’t happened, and been convinced that it has returned with a fatal vengeance. Neither of these extremes are the real reality of the experience.

I may not yet have fully digested my disease and my diagnosis, but this much I do know:

I feel glad to be alive. Every. Single. Day.

I give thanks for still being here. Every. Single. Day.

I see something that brings me joy. Every. Single. Day.

I don’t care if this sounds like a Pollyanna-esque cliche or a thousand inane Internet memes. If I have learned nothing else from the past 21 months, I have learned the joy of being. Even before my illness, I was pretty fond of life but my cancer experience has increased this exponentially. Now, even when I am having a bad day, I am glad to be alive to have that bad day.

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25th March – One Year On

A year ago, on 25th March 2015, my husband and I were on our way home from West Suffolk Hospital, trying to digest the news that I had breast cancer.

After I found a lump in my left breast a couple of weeks earlier, my GP had referred me for a mammogram and ultrasound. The doctor carrying out the ultrasound lingered for what seemed like an eternity, passing the probe backwards and forwards over my chest and armpits.

“Do you know what it is?” I asked her quietly.

“Yes, I believe I do. How much do you want to know at this stage?”

“Everything you do” I replied.

“I think it’s cancer” she said. I knew that she had looked at enough ultrasounds in her time to be certain of what she was telling me; no doctor uses the word ‘cancer’ lightly. She added “I will do a biopsy and that should confirm it.”

And it did. One week later, on April Fools’ Day, the diagnosis was verified. I wrote about that day in a very early post on this blog here.

So began the most bizarre, exhausting, stressful and at times horrendous year of my life. Anniversaries may be man-made and meaningless in many ways, and a cancer experience cannot be conveniently contained within a year; it’s reach goes far beyond the 12 pages of a calendar and, to a greater or lesser extent, it’s with you for life. However it feels pertinent to  acknowledge and quietly reflect on my first year as a canceree.

Time has seemed both compressed and expanded. Some episodes were in slow-motion, some flew by and, looking back, the whole year was on fast-forward.

It is no exaggeration to say I was taken to the limits of what I felt my body and mind could endure, by the treatments and complications thereof. On the flip side, I experienced love, nurturing and support from my husband, friends and family that was beyond anything I could have imagined. I’ve probably learnt things about myself too but I am not sure what they are yet (other than I am rather fond of the salt-and-pepper grey short hair that is the legacy from my chemo.)

This afternoon I read through all my blog posts, from the beginning. It turned out to be quite a revelation because I don’t recall writing many of them. It wasn’t a case of ‘I’d forgotten I wrote that’; I truly have no memory of ever seeing them before. Chemo-brain, chemo-fog, chemotherapy-related cognitive impairment, call it what you will, it has a lot to answer for. Fortunately it hadn’t caused me to write gibberish, and the posts I had no idea I’d written turned out to be quite readable.

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A Few Words about World Cancer Day

Today – 4th February – has been designated ‘World Cancer Day’. I have no idea if there is a particular reason for choosing this day but it is designed to raise money and ‘awareness’ of the disease around the world, as well as remembering those who have died from it.

Is there anyone anywhere who is unaware of cancer in a general sense, I wonder? To find out more about WCD, visit the website here

There are 200 or so forms of cancer, affecting every part of the body, and coincidentally there are roughly the same number of countries in the world. That’s an awful lot of awareness to raise and a very broad geographical remit for one day.

How about if we narrow the focus a little and make it personal. It would be amazing if everyone reading this could do at least one of the following, to increase their own ‘awareness’ and knowledge:

  1. Research the symptoms and warning signs for a cancer that might affect you. (Breast, lung, prostate and bowel cancers are the four most common in the UK) Just pick one for today and use a good source for your information. Dr Google can be a far from reliable source. The NHS website here and general or specific cancer charity websites are good starting points. Don’t be scared though. Knowledge is power, and information is far less frightening than ignorance.
  2. Check something that you know you should be checking. Most of us don’t do it often enough but it is how I found my tumour in its early stages. Yes, that was scary but far less so than finding it at a late stage.
  3. Women (of any age) – check your breasts regularly and learn what is normal for you. Then you will know when something changes. If you are not sure how to do it, there is a handy guide here
  4. Men – check your balls and know what’s normal for you. If something deviates from normal, see your doctor. There’s lots of useful info about testicular cancer and how to check for it here
  5. Many cancers have no identifiable cause, but if you are currently doing something that is known to increase your risk, please consider stopping or cutting down.
  6. Donate to a charity that is in some way connected to cancer detection, prevention or treatment. I have put this last on my list because, although funds are vital for research, I know money is in limited supply for many people. Doing one of the other five things on this list is just as useful and costs nothing.

Love your body, love your self, live your life.

 

 

 

 

2nd February

I’ll be honest, I didn’t want to take our dog Katy for a walk today. Nothing to do with her, as this is usually one of my greatest pleasures in life. It’s just that today I didn’t want to leave the house. I was tired, I had no energy. Yesterday I did my first full day back at work since my surgery in April, so I guess a spot of fatigue was to be expected.

I’ve also been in a low mood on and off for a few days, plagued by the random, fatalistic fears that every canceree will recognise. They arrive unexpectedly and grip you. They grip you tightly and are reluctant to let go. Sometimes they have a basis in logic but are often abstract and shapeless. However they are real and can be paralysing.

Experience has taught me that the harder one tries to banish these demons, the harder they hold on. But allow them to flow through and they do dissipate eventually. It’s a waiting game.

Anyway, fear and loathing in Cancerland notwithstanding, dogs need their walks and by mid-morning Katy gently reminded me that it was high time we got out and about. As anyone knows, you can’t argue with a cute terrier tilting her head quizzically, so out we went.

It was a cold, very blustery day here in Suffolk but the sun was out. As I walked along the lanes around our cottage, I felt the wind in my hair, happy that it is finally long enough to be ruffled by the breeze; I spotted snowdrops, daffodils, primroses and celandine in the grass verges (I know it’s only February but we seem to have bypassed winter and stumbled straight into spring); as we ambled across the village green I watched Katy sniffing and snuffling about in the grass, nibbling on fresh young cleaver shoots, her favourite snack on the go.

On our way back towards the cottage, I stopped and watched a buzzard arguing with two crows in the clear blue sky. I have no idea what the scrap was about but it was fascinating to watch. The buzzard kept flying away but the crows flew after him each time, shrieking and pecking at him in mid air.

On my final few hundred yards home, I was accompanied by a kestrel, flying low and hovering every so often, eyes on the prize of some tasty prey in the stubbly fields.

I make no apology if this reads like one of those smug ‘I live surrounded by the wonders of nature. Aren’t I lucky?’ blogs. I do and I am, plus I used to write one of those very blogs. I stopped it when I became ill but look, here it is www.eggshoneycream.wordpress.com/

All I know is that if I hadn’t gone out of the door today, I would have missed all of those tiny moments, glimpses into nature, that lifted my mood and ensured that the cup of coffee I made when I got home tasted all the better.

 

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A Few Words about Hair

Like many a canceree, I lost my hair during chemotherapy. I was forewarned by my consultant that it would happen, the nurse administering the drugs reminded me it would happen (“This is the one that will take your hair” she cheerfully told me, as she gradually fed the contents of a large syringe into my veins) and sure enough, out it came, strand by shiny strand. I have written about this in previous blog posts here and here should you be of a mind to read about it.

Now my hair is growing back and that is a good thing. My hair BC (before chemo) was shoulder length and dyed dark brownish-red. I occasionally wondered what was happening beneath the dye. I am 52 and my hair has been various hues – some more natural than others – since the age of 17, so I had no idea about my ‘real’ colour, although grey was the chief suspect.

Four months after the end of chemo and my hair is about an inch long and a mix of greyish and brownish. Salt & pepper, one might say. It is starting to look like a hair cut I have chosen, rather than grown-out chemo-baldness, and I quite like it.

I like having something on my head to wash in the shower; I like running my fingers through it; I even relish the fact it stays in situ when I tug on it. It’s like having an old friend back in your life, albeit one that has changed a lot since you last saw them.

I am now faced with some questions though: where do I go from here? Do I keep it short? If so, how short? Do I dye it again? If so, what colour? The general wisdom is to avoid chemical dyes for about six months post-chemo, so I have time to think.

Interestingly, before I was ill, I had already pondered if I should cut my hair short or stop dyeing it. Reaching ‘middle age’, for want of a better term, had set me thinking about how I was choosing to look and how the world was seeing me.

The age of 50, and its environs, is a watershed for many women and can be time of self-assessment, and I don’t mean just their tax returns. Some decide to go down the invasive route to de-ageing (injections, surgery and so on), some elect to mature as nature decides, others travel a path somewhere in between. Hair colour almost always plays a part in that debate. It can feel like the one thing we can’t – or are not allowed to – let go. You can be anything you like, except grey it would seem.

If I am honest, I probably wouldn’t have chopped it all off and ditched the dye by choice, but now I have the chance to consider this as a ‘look’. In reverse and in slow motion, as my hair gradually grows. And I can have a say in what happens next. I can press the ‘pause’ button at any time and stop at the hair length I like. And, during the whole cancer malarkey, when so much feels out of one’s control, that little bit of power is a marvellous thing. IMG_5440

 

 

1st January

To say I am glad to see the back of 2015 is the understatement of the year, albeit a year that is not even 12 hours old.

On this day of resolutions and plans, with the fresh, squeaky-clean months ahead of us, I can’t help but think how my plans for 2015 were blown to smithereens by my cancer diagnosis in March.

Making any concrete plans for 2016 feels inappropriate at the moment; not because I won’t be doing anything; on the contrary, I anticipate being very busy. However I am going to be a little less prescriptive, a little more organic and empirical than I have been in the past. I will stay fluid, so I can negotiate life’s rocks and crevices like a flowing river, turning and adapting as I go.

The only things that are certain is that I will continue breathing in and out, and putting one foot in front of the other, both literally and figuratively. Oh, I know the line about the inevitability of death and taxes, but I’ve done my tax return and… well, I’ll just leave it at that.

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A Few Words about the ‘Me Toos’

Two of the most powerful words in the English language are ‘Me too’. Even before I had cancer, I found such solace when someone had gone through the same experience or emotion as me – whether good or bad – and we shared a simple ‘Me too’ moment.

Since my diagnosis, my greatest comfort has come from those who have walked the walk, felt the shock of hearing the words ‘You have cancer’, been through the surgery, endured the chemo, tended their radiotherapy burns and dutifully downed the drugs.

Only they truly understand when the side effects from your treatment stack up, day after day, until you cannot stand any more; when you run a hand through your hair and a clump of it comes out; when you lie awake in the night, alone with your fear of dying; when the fatigue is so intense that you feel you will never get out of bed again. Only they know,  so their quiet ‘Me too’ is precious and priceless.

And only they understand when you recover from a round of chemo and finally have the energy to take a short walk in the fresh air; when a bruise from yet another blood test or infusion fades; when the wound from surgery heals; when you walk out of your final active treatment session and allow yourself a small smile of relief; when you hear the words ‘No evidence of disease’. Only they know, so their joyous ‘Oh, me too!’ is happy and heartfelt

During testing times, the solidarity that comes from shared experiences feels like the very essence of being human. It says ‘I’ve been where you are now’. It says ‘You are not alone’. It says ‘I’m walking with you’. Seeing ourselves and our lives reflected in others is life-affirming and life-enhancing, even when life itself feels precarious.

I have had so many ‘me too’ moments during my illness and treatment. They have come from old friends who have been through this in the past, and from new friends who I have met through having cancer. Whether it was from someone sitting next to me during chemo, in an online support group, during my recent stay at Penny Brohn Cancer Care or even a chance chat in a shop, every ‘me too’ has helped.

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