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.

 

 

 

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.

 

 

 

 

 

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.

 

 

 

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. 

 

 

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.

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.

15th December

Cancer is a strange old disease, that’s for sure. Its power to evoke the strongest of emotions, at the most inopportune times, even when it is technically no longer even within one’s body, is quite extraordinary.

Over the last few days I have felt an ever-increasing weight on my shoulders a tension in my chest and a heaviness in my heart; these were physical sensations but also abstract, metaphorical ones. I felt like a bottle of soda that had been not vigorously shaken, but gently tipped back and forth so the pressure slowly built up under the lid.

Today the lid popped. Tears flowed. I couldn’t stop them and I wouldn’t want to. I knew this had been brewing for days. As each wave of tears subsided, I thought ‘OK, that’s done. Now I can get on with my day’ but I couldn’t and, a few moment later, more tears came.

So I consciously decided not to attempt to do or achieve anything today. The food shopping could wait; the dog walk could wait (ah, thank goodness for our patient little hound); picking up my repeat prescription of letrozole from the doctors could wait; everything except this all-important emotional response could wait. I accepted the power of my feelings and went with them on the tide.

You could choose to describe this as a ‘bad day’. After all a day spent crying might not seem the most productive, but it wasn’t bad at all. It was just a day. A day in the life of a recovering cancer patient. Actually I think it was a ‘good day’ because tears are healing; they are our safety valve; our pressure release; they cleanse our minds and leave us ready for something fresh, something new or something that will make us feel cheerful or content, which is almost invariably around the corner.

Since my active treatment ended last week, many people have said ‘I expect you’re glad it’s over’. Of course I am quietly pleased that the treatments, the appointments, the sheer drudge of the cancer experience have finished for the time being. But ‘over’? No. In truth, it will never be over.

From now on, my life will forever be defined by cancer in some way. Not dominated by it, not ruled by it, not dictated to by it, but it will be a presence. Sometimes it will be centre stage, other times it will recede into the darkness, into the shadows, into the wings. It may always have the power to overwhelm me with emotion, perhaps when I least expect it, but I can learn to accept that.

 

 

 

 

8th December

Tomorrow I will have my final radiotherapy treatment. Number 20 of 20. I am almost surprised by this. It has sneaked up and caught me unawares.

I knew the day was coming, of course, but radiotherapy is administered every weekday, unlike the three-weekly chemo cycle, so the four weeks of ‘rads’ as we cool cancerees like to call it, has whizzed by. Five months of chemo seemed like five years; four weeks of rads could have been four days, it was that quick.

This is a good thing. A very good thing. It means the end of my active treatment, after nearly nine months of what can only be described as… really not very nice at all. It is no exaggeration to say the diagnosis and much of my treatment took my mind, body and emotions to the very edge of what I felt I could bear. But bear it I did and now I am emerging out of the tunnel.

After tomorrow’s harsh but ultimately healing beams of radiation are fired at the site of my tumour, my life will no longer be ruled by appointments, more appointments, treatments, the after-effects of treatments, drugs, the side-effects of drugs, thermometers, dressings, lotions, potions and creams. (Actually there will be some drugs, as I have to take a hormone-suppressant called Letrozole for five years, which comes with its own jolly set of side effects. But more of that another time.)

One might think this was a cause for celebration, and in a way it is, but I am not feeling in the mood to party just yet. Truth be told, I am feeling a little low and very emotional. All the stress, fear and worry of the past few months is gradually bubbling to the surface and it feels good to start letting it go and seep out of me.

I am tired too. More tired than I ever imagined was possible. I remember several years ago listening to a doctor on the radio talk about the fatigue that comes after cancer treatments; she said it was like no other fatigue, and could go on for a long time. I was running my magazine publishing company at the time and, like most business owners, I was knackered. So I remember thinking ‘Oh yes, I know all about being tired.’

Wrong. I knew nothing! Post-cancer tiredness defies description. It is not relieved by sleep and you aren’t revived after a nap. Your cells have worked so damn hard for so many months, tackling the disease and recovering from the treatments, that it could take many months before something resembling normal energy levels are restored. But that’s OK. I have time. Life will gradually resume. I must – and will – take it organically, at a pace that feels right. If I have learnt just one thing from this cancer malarky, it is to listen to my body and my mind and act upon what they tell me.

This evening feels like a time for reflection; looking back, reminding myself what I have been through and how far I have come; accepting the changes in my body and my spirit; marvelling at how well I am healing, both inside and out, despite the battering I have taken. Humans are the most amazing creatures, aren’t they?

As well as looking back, I also have much to look forward to; there are some exciting plans afoot for next year and some wonderful opportunities have been presented to me just in the last few days. But I am going to put those thoughts aside. They are for another day.

 

 

 

 

A Few Words about Penny Brohn Cancer Care

Over the past few months, surgeons, oncologists, nurses and radiographers have been taking excellent care of my body, trying to coax it away from its cancerous state. But we are so much more than our physical selves; cancer not only eats away at our body parts, organs and bones but can also damage our minds, spirits and souls.

Since my chemo ended a few weeks ago – and even during my treatment – I have been told numerous times ‘You look well!’ Maybe I do, and it is always heart-warming to receive a compliment, but what I look like tells only part of the story. Many times when I was ‘looking well’, I was frequently feeling physically unwell – to varying degrees – and my emotions and thoughts were in a very dark place.

Recently – and with beautiful serendipity – I heard about the charity Penny Brohn Cancer Care (formerly the Bristol Cancer Help Centre) which has been providing holistic, integrative care and guidance for people with cancer for over 30 years. A browse of their website, and I was immediately drawn to their ‘whole person approach’; a chat with them on the phone, and I knew this was a place I needed to go to begin sorting out the mess in my mind.

Partners, carers or supporters are welcome at Penny Brohn too, as the charity recognises that they are also affected by the cancer experience. So my husband and I booked their two-day course entitled ‘Living Well with the Impact of Cancer’, held at the charity’s headquarters, a Georgian house in a village just outside Bristol. The charity makes no charge for their courses, which is wonderful given the financial hardship that cancer brings to many. Donations are, of course, welcome from those who feel they are able to give.

From the moment we walked through the doors, the peaceful ambience and beautiful surroundings helped us start to relax. Pale wood floors, fresh flowers, a wide sweeping staircase… one could easily mistake it for a smart hotel. The welcoming staff, the delicious organic food, landscaped gardens and comfortable en-suite rooms all contributed to the restorative atmosphere.

Over the two days of the course we were introduced to the charity’s ‘whole person approach’. Workshops and discussion groups focused on the body, mind, spirit and emotions, to enable you feel the best and healthiest you can, whatever the stage of your cancer. The staff guiding and leading the sessions were warm, knowledgeable and inclusive. From nutrition to mindfulness, from gentle stretching exercises to spirituality, from self image to relationships, from meditation to mortality, the subjects covered were diverse and thought-provoking; the discussions were frank, honest and often raw, but ultimately empowering; there were tears, but fewer than you might imagine, and plenty of laughter.

Our course group consisted of twelve people, brought together in this supportive, accepting environment; twelve people from random backgrounds, at varying stages of cancer, some with a faith, a religion, a spiritual path and others with none; some had turned their back on conventional treatments, others were in the midst of chemo; some were several years clear of the disease, others had been diagnosed as terminal. All of us had been drawn to Penny Brohn Cancer Care for our own reasons, in search of something extra to help us through.

It is hard to convey the power and impact those few days had on me. It was not so much a ‘getting away from it all’ break as a ‘going towards it all’ one. I found it life changing, life enhancing, life affirming. When I left, my mind was at peace for the first time in months and my body, battered from treatment and scrunched and hunched from so much time in bed and on the sofa, had unfurled and felt refreshed.

If you would like to find out more about Penny Brohn Cancer Care, please pop along to their website here. 

The view from my room, showing some of the beautiful gardens…