Did you ever think living with a life-limiting diseases might have a silver lining?

I never thought I would find a reason to be grateful for what cancer has brought in my life, would you?

Ouch, I never thought I would write this. Not ever.

Things might never get better. I am not sure I will ever fully make peace with my secondary cancer. My mind might not find the explanations it seeks, but I am moving forward towards more acceptance.

So I know that I have a life-limiting disease. What does it mean? What does it change?
Nothing much really. You might die before me. Or I might die in a freak accident or a car crash tomorrow. The advantage that I have is that the more I am conscious that I will die -and it could be in a long time with medicine’s progress- the more I value my time here. My timer was set on the day I was aware of my secondary cancer and boy, I can hear it ticking! I want to make the most of it. Because right now, I am alive, perhaps even more than before and that’s what matters.

Does Cancer affect my quality of life? At the moment not so much.
I look well and healthy, you would not know.
Treatment is not fun and I will certainly not look at the 8-inches long needle that is being planted in my stomach tomorrow or I might faint! Yes, the drugs have nasty side effects but millions of people live and die in horrible circumstances fleeing wars and famines, while I am resting comfortably, on my reclining chair.
More, I worry for my children. It’s not fair to them, they are young. I want them to feel secure.
I also think that there is a silver lining for them too. Eventually, they might see that even in difficult circumstances, it is possible to prize life, to be grateful for our time spent here and for the people around us. This could help them find their resilience. What an amazing gift!
So, after all, we are all in the same boat, the trouble is we think we have time. I was given this opportunity, this unique awareness, to recognise that my time is precious and should be valued and enjoyed. There is also the appreciation of what is most valuable. certainly not material possessions but the love I give and the love I receive.  Life is short, let’s make good use of it!

Here is the silver lining.

‘Uncurable’

So I have stage 4 metastatic breast cancer, this means the cancer that has spread beyond the breast tissue into other areas of the body, the back vertebra and the wind pipe.
One week on, I am still struggling to accept this diagnostic.

Yesterday I received the letter with the full details of this new diagnostic.
The medical jargon feels ruthless: My Oncologist writes that she explained to me that my cancer is not curable. The words ‘not curable’ was a shock for both myself and my partner. The treatment recommended is palliative endocrine therapy. The word ‘palliative’ is used for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress of a terminal diagnosis.
Despite discussing this with my Oncologist, seeing it on paper sent me into a second meltdown. I am writing this is an attempt to get it out of my system. I reached out to my ‘sisters’ in the Facebook breast cancer support group. We discussed the medical jargon. They agreed that people can live for years with incurable cancer. Likewise, no time limit is set to the length of a palliative treatment. The advances in research mean that every day brings more hope of a longer life. The Oncologist talked about years, although how I respond to treatment is the key factor. Let’s hope I am around for a lot longer.
Yesterday I met a group of cancer ladies for a walk and coffee. They were celebrating the end of their chemotherapy and the ringing of the end-of-treatment bell. Another said how well she is living in remission after a difficult cancer journey. I was happy for them but I felt I did not belong.

Living in the constant shadow of stage 4 cancer, you need to learn to embrace the darkness on an everyday basis.
I can see that my Facebook sisters have reached a place where light and darkness can coexist. I read how desperate one lady’s situation seemed. Yet she still fought teeth and nails to be here and expressed gratefulness for each extra moment grabbed.
When I manage to quiet my internal turmoil, I will be able to find energy and strength to carry on. Maybe I will draw on my grandmother’s steely determination. When the Doctor told her she had 99% chances of not walking again, she replied: “Doctor, I still have 1% chance”; and of course she managed to get back on her feet. I know I have it in me.
I can give myself compassion, I am allowed to struggle right now.
I can give myself kindness as this is where I am.
Today is a beautiful day with an azure blue sky. I am meeting my friend M. for a walk. She is full of kindness and gentleness. Together we will walk the darkness out into the sunshine.

But how can I live in the shadow of cancer?

 

But why can I live?
But where can I live?
But when can I live?
But how can I live in the shadow of this?

Here and now you can live.
Here and now is you, my lovely partner
full of attention and tenderness
Here and now are you, my children
that I have cradled in my arms as babies
and that I am now cradling in my heart;
Here and now are you, my friends,
the walks, the coffees, the laughs, the flowers,
all of this kindness shared together

Here and now there is life.

Embrace It

Calligraphy by Brian Whitmore twitter @Brianthescriber

 

 

Cancer, I still have the hair BUT…

So chemotherapy was the plan. I was going to go through the tough ride of chemotherapy, taking these awful medicines, feeling sick and depressed and there was a chance that I could eventually kill it and eventually live cancer free. Of course, I was ready to take it.
Unfortunately, the plan is no more. It has disappeared, vanished.
I was sent for a CT scan and then they look deeper into me with a PET scan.
It was a worrying process and I wondered what they might have found. “It’s just a normal procedure” left me sceptical.
Monday was the day. I was meeting my Oncologist, starting chemotherapy and later shaving my head.
As we arrived, the Oncologist gave me a detailed account of the results from the start. My lymph nodes were highly cancerous. This has prompted my consultant to investigate the possibility that the illness had spread. The scan had uncovered a cancerous lymph node in my windpipe and something in one of my vertebra. The goal of the treatment was now to manage the cancer, to stop its progression and not to eradicate it.

The bastard is in me, the bastard has taken hold. I feel like Pi surviving a shipwreck on a lifeboat, which he has to share it with a Bengal tiger [1]. The enemy is within. My whole perspective has shifted. I am in shock.
In the Oncologist office, I fought to keep my tears at bay, feeling sad, angry broken and betrayed.

“Only this moment is life”
Thich Nhat Hanh

Acceptance is on the way I am sure, although it is not an easy task.
Yet, I can carry on for years with the right treatment. In my secondary cancer support group, ladies are also sharing positive experiences: their cancer has regressed.
Today, I found healing walking outside in nature. The trees brought me solace, the blue sky and the sunshine warmed my heart. I felt that I belonged. And it did not matter who I was, if I had cancer today, or tomorrow. In this very moment, I belonged.

 

 

[1]The novel by Yann Martel was turned into a movie where Piscine Molitor “Pi” Patel, an Indian boy from Pondicherry survives 227 days after a shipwreck while stranded on a lifeboat in the Pacific Ocean with a Bengal tiger named Richard Parker.

Chemotherapy, is my hair going into thin air?

The hair I breathe…oh sorry pardon my French, I am writing just as I am speaking, with a noticeable French accent. Just to say that today hair, or the absence of it, is in the air.

I am about to have a bad hair day or rather many of them. The positive: if I suppress the hair, there will be no bad hair day at all.
At the moment looking at my hair I fell a little like Lady Godiva, who rode naked – covered only in her long hair – through the streets of Coventry to gain a remission of the oppressive taxation that her husband imposed on his tenants.
Well not quite, in fact, my hair is boringly above shoulder length and I struggle to curb its rebel strike. But I love it and do not want to part with it, because it is part of who I am.
And I am about to start chemotherapy. With the help of a cold cap -wearing some kind of ice bonnet, for several hours while undergoing chemotherapy and several hours after- a minority of women manage to keep some of their hair.
I have decided against this and the process of seeing my hair falling in clumps in front of my eyes, blocking the shower and the vacuum cleaner like a moulting shaggy dog and resulting in a Donald Trump brush over style. Arrgh, It would be too devastating.
So I will adopt a preventive shaving.
Shaving away what symbolises the seductresses siren, mermaid, Lorelei – with manes in which destinies might become entangled, feels like symbolically shaving away my sexual power.
Long hair also symbolises youth, vigour and feminity. Many women feel that a bad hair day equals a bad day. The loss of our crowning glory.

When I divorced I cut my hair as an act of rebellion, to show that I could be whoever I had decided to be. Shedding my hair was like shedding a part of my old life.

Short hair through history showed a desire for women to assert their power. In the Twenties and Swinging Sixties, women bobbed their hair to indicate that they were pleasing themselves rather than men. I can relate to this, as I like to be considered more a person of worth standing up for herself rather than an appealing object of desire.

Now faced with making a choice which is not really one -I either shave it or lose it- it feels harder to let the hair go into thin air. And it is not really short hair, it is baldness we are talking about, like a very old lady, or back to my baby self; A bit like the transformative experience of a butterfly reverting to a caterpillar. Baldness is not a perspective that I am embracing easily. I will have to lose my self-image which is part of my identity. I am interested in dream symbolism, cornerstone of Jungian psychodynamic psychology. The losing hair symbolism is associated with, health concerns, ageing, loss and feeling powerless. This feels very relevant to me, right now.

Once my hair is gone, I will be able to experiment with wigs, head scarfs or headgears of all kinds and reinvent a new self-image. I hope it will ultimately grow back. By then I might feel totally at ease and empowered by my shaved head. I know it will change me on the outside and on the inside too.
For now, it is still here, and I am not pulling your hair.

On world’s environment day, let’s talk about why I have cancer …and why not you…

When I was first diagnosed with cancer I had this head-banging question: “Why me?”

I struggled to understand and rebelled at the thought. It seemed so unfair, I thought I was an unlikely candidate. After all, I breastfed my 3 children, I drink very little alcohol, I am Pescatarian eating mostly a vegetarian diet, I run and do yoga, I am conscious of the products I use and try to limit chemicals…

And yet that is not enough.

So, is it me? Of course, I can analyse my lifestyle and find these grey areas, and I have not always been on my best behaviour. So, before I go into a full-blown confession…

Only joking. I could start and google all these cancer-triggering behaviours I may have indulged in. My guess is I can say: “I am guilty of…”, for a few at least. And in a good Catholic fashion, I can get my big wooden cane and start beating myself up for each one of them. Moral faux-pas? Cane, cane, cane.

Or I could embitter myself and succumb to the trendy trend of comparison/competition and say: “Hang on you, yes you, I see you going to your favourite takeaway every night, that’s your exercise for the day. You buy, the mega dinosaur bucket of fried food, downing it with a few cans of Stella or a bottle of Chardonnay…so yes, why not you? How come you are luckier than me?” If you feel you fit the description you are a lucky one. By all means, you can thank your lucky star and carry on being lucky.

So why me, and why not you? Maybe you are affected by cancer too, but I really think it could be all of us.

Today is world’s environment day. I love our planet, but our planet is sick, the animals are becoming extinct, the plants are receding. Hence, I am sick too. According to the latest forecast by Cancer Research UK published in the British Journal of Cancer, 1 out of 2 people in the U.K born after the year 1960 will be diagnosed with cancer at some point in their lifetime.

I am going to paint a dark picture before telling you that there is hope, and you are the hope. I am living in one of the 40 towns and cities in the UK that have exceeded air pollution limits set by the World Health Organization.[1] Although plastic does not directly cause cancer, chemicals present in plastic can move into food and drinks [2] I am sick of plastic and the planet is suffocating in it. You can find everywhere including at the bottom of the Mariana Trench, the deepest point in the Ocean, at 36,000 feet! We swallow up to 11,000 pieces of micro plastic every year in seafood [3], billions of us drink it in tap water, and if you ever dreamt of escaping on a remote Island, 38,000 million pieces of plastic waste were found on Henderson Island, a tiny landmass in the eastern South Pacific.

Greenhouse gases are poisoning the most remote areas including the Inuit in Greenland ingesting meat containing poison derived from our industrial activities.

The logic of multinational companies is ruthless exploitation without putting anything back in the environment, and very little in the economy. One of the biggest warehouses ever built is planned in my area. Being built on the greenbelt, it is an ecological disaster. It will bring merchandises with high food miles in the area. Could we not create jobs that benefit the local area? I don’t believe it is job vs. nature. Countless initiatives in the world show that they don’t have to compete.

I apologise for this really dark picture, but there is hope too. Some people are making a real difference in the world. We can watch what we buy and put pressure on big supermarkets to stop using plastic packaging. We can stop wasting food and participate in initiatives such as the junk food cafes [4]. We can rethink our economy like the transition movement does [5], develop local currency so profits made in one area does not end up in a tax heaven. We can grow locally like the incredible edible movement in Todmorden, growing vegetables for the use of all in the town curbs and parks [6].

I believe that if we look after our environment we will get better and lower our chances of becoming chronically sick.

 

[1] UK’s most polluted towns and cities revealed, http://www.bbc.co.uk/news/health-4396434, 4 May 2018

[2]www.cancerresearchuk.org/about-cancer/causes-of-cancer/cancer-controversies/plastic-bottles-and-cling-film

[3] cited in David Attenborough says the world must act now on plastic after witnessing its impacts filming Blue Planet II, https://www.independent.co.uk/environment/david-attenborough-plastic-ocean-sea-blue-planet-pollution-microplastic-a8001641.html, Sunday 15 October 2017

[4] http://www.realjunkfoodmanchester.co.uk/

[5] https://transitionnetwork.org/

[6] https://www.incredible-edible-todmorden.co.uk/   

 

Hanging loose with or without breast cancer

When talking about breast cancer, breast eventually needs to be mentioned. And anyone who is still lucky enough to have something remaining post surgery will probably know about the feeling of hanging loose.
I tried to cover up when I went out with my friends and despite opting for a loose crop top I really regretted it afterwards. My recovering wounds took a set back and the pain shot up. Now there is no alternative: free the chest!

Despite my flirting with feminist ideas, I can’t still decide whether I find it empowering or embarrassing.
I have to say, I am no Kendall Jenner rocking the braless look.
I feel most comfortable when they are tucked away, well harnessed and out of sight. Hanging loose makes me feel self-conscious and weary of unwelcomed attention. It seems, my discomfort reflects the social norms I have strongly integrated. I am my worst self-critic when I have to challenge them.
This morning, I was walking down the street, when a man staring at my chest, nearly hit the curb with his mobility scooter. His eyes were level with the area and he indulged in a good look. I did have a shirt on!
Most probably, the first idea on his mind was not that I am trying to recover from breast cancer, but that I am somehow being a tease or a smut. I am sure he would hold me responsible for his near-accident!

Some argue that it is ok not to hang loose if…They then start a classification for eligibility according to size, shape, age, protruding ratio of the nipples…At no time do these criteria reflect the needs of the woman herself, just an entitlement to police her right to choose.

And why should we not be able to feel free to decide to wear or not to wear a bra?
According to a 15-year study conducted by Jean-Denis Rouillon, a professor based at the University of Besancon, France, on the effect of bras, it could be good for women. Non-bra users gained lift and tone compared to regular bra wearers.
However, if you are generously chested and go to the gym, you will most certainly profusely thank the inventors of the bra as you are engaging in your star jump routine.

So when you are getting up in the morning ladies, feel free to consider whether you want to go free-range or under cover. As far as I am concerned I have decided to embrace the new challenge of hanging loose as this is what my body needs right now.

 

 

A mindful letter to myself

Dear Claire,

You worked hard to overcome some of your difficult past experiences. It was easy to get pulled back in and blame yourself for not handling it better.
Let it go.
Be kind to yourself, you did your best at the time.
In December, with your new diploma, you decided that you would build a brighter future. Life had to be better. But you saw your goals dissolve in unforeseeable circumstances. You asked yourself whether you tried hard enough.
Let these goals go too in a kind breath.
You can show great kindness, empathy and compassion for others. Give it to yourself too.

Stop pursuing the past and the future. Life is not about being a spectator in your own movie, watching it slip away. You are even more than an actor. You are connected.
Cultivate your presence, for a good life, is not necessarily a long life, but a life of more, of more presence, to yourself and others.

When everything slips away and life gets too much, don’t panic. Take a deep breath and pause. Breathe or meditate, and your pain, your difficult emotion become just one of the many that are going through you. Remember, if you feel fearful, that you can also experience calm and hope in the meantime. If you feel pain in your side, part of your body can also feel relaxed. Such rich experiences are waiting to be unlocked. When you feel calm it will be easier to find a new perspective, a new unhurried way through. It’s ok. Just breathe.

Sincerely, kindly and lovingly yours for life,

Claire

Inpired by Burch V., Penman D., Mindfulness for Health, (Piatkus, London, 2013)

The unnerving wait and the breast cancer operation

As days went by and the operation was getting closer I became a bag of nerves.
During the week before my operation, I could not focus. I felt overwhelmed, and my efficiency in daily tasks went down.
I managed some sanity breaks with mindful breathing exercises. I discovered that mindfulness exercises could bring me a temporary and peaceful relief. The knowledge that I had a safe space to turn to would be enough to not fully disintegrate when my brain was running into fight or flight mode, my heart was pounding and my breathing accelerating.

By accepting unpleasant experiences, we can shift our attention to opening up to them. Thus, “I should be strong enough” shifts to “Ah, fear is here,” or “Judgment is present.” —Zindel Segal, Professor of Psychology in Mood Disorders, University of Toronto, and co-founder of Mindfulness-Based Cognitive Therapy

I distracted myself by attending a professional training and meeting friends for a drink.
Monday, The Day, came.
After a broken night I was terrified. I decided to trust in the process. I breathed in and connected with the world around me. The sky was bright blue. I listened to the calming voice of the nurse,  and gently breathed my way into the operating theatre. And yes I finally opened my eyes to a new day minus my tumour and a few lymph nodes.

Speak the unspoken…cancer, the taboo of a difficult subject

The unspoken rule about cancer is: you do not talk about it.

You know me, or you don’t, I am happy to challenge and rebel. Talking about cancer, this is what I am doing right now. Or rather writing about it; in some ways it is much easier.

I want to talk about it. And I don’t.

I am conflicted. But I know of the toxic weight of the unsaid and the unspoken.

However this is not easy, and I struggle. Breaching the subject triggers a similar feeling to coming out, complete dread and fear. So what is it about? I am scared of my emotional reactions when talking about it. I fear other peoples’ reactions. Friends and family all want to help and support me, great! Yet some of them can not manage their discomfort and clam up abruptly.

The greatest challenge was gearing myself up to speak to my children. It took a lot of winding up the old clock! They reacted with their heart. We all tried hard not to let our emotions overcome us, and we hugged.  I am sure it will help them to avoid overhearing things or misinterpreting what is going on. It de-dramatizes the situation giving them permission to express their fears and worries. Applauds to Macmillan as they provide with great resources on the topic. [1]

If you want to keep a secret, you must also hide it from yourself. – George Orwell, 1984

Positivity and humour help to lighten up the load. Yes, I am one of the lucky one, caught the imposter early! In a few days the crook will be out. I am lucky I picked breast cancer, one with the best survival rates. I am lucky I found and identified the deceiver, the bastard, the jackass, the schmuck, the asswipe who tried to mess up with my boobs.

Ladies and gentlemen the cat is out of the bag! And those who can face it will be my companions.

 

[1] https://www.macmillan.org.uk/information-and-support/breast-cancer/coping/talking-about-cancer