Tu Me Manques

Cancer is a horrible disease. Even “easy” cancers like breast cancer are horrible. I know this because I’ve had it, most of my family died from it, and a lot of my friends either have or had it.

I’m yet to find anyone who says, “You know what? I’m glad I had / have breast cancer.” No-one in their right mind wakes up one day thinking gee, I must add this to my ‘interesting things to do’ list and anyone who suggests it’s a great way to get a free boob job and some chemotherapeutic help with weight loss is terribly ill-informed. Sadly there are a few women in the world who think this way but the reality is that neither perfect breasts nor a svelte figure are positive outcomes from cancer or its treatment. Instead there’s more than an outside chance you end up impoverished, tormented and/or dead. Not much to smile about if any of those scenarios come to pass.

In spite of the harsh realities there’s a great deal to be thankful for when it comes to the breast cancer community. This vast and growing group of people all over the world understands the true significance of nodes, treatment regimes, clinical trials, funding, recurrence, metastasis, emotions and death. Everyones’ story is different and every one is inspirational, a source of encouragement and mutual support. The club none of us wanted to join is populated by people who are smart, loyal, determined, compassionate and empathic. Women (and men) who were going about their everyday lives like the rest of the human race until cancer sent them veering off course into a world of uncertainty, confusion and more medical procedures than most lab rats endure.

Being part of this community brings a sense of togetherness and understanding but it also calls for incredible levels of resilience. People we come to know as our friends often have stories that are far from rosy pink and perfect. Too many of our number have metastatic cancer for which there is no cure. While most humans deal with bereavement just a few times throughout their lives, members of the breast cancer community may find themselves bereaved on a regular basis. Joining this club means facing the fact that some of our friends will die before their time and there’s nothing any of us can do about it. It’s another of breast cancer’s ironies – friendships forged through one of life’s greatest adversaries have the potential to be life long yet the reality is they’re sometimes over in a matter of months.

Cancer is a horrible disease because it regularly steals away beautiful people, people who have so much to live for, who give so much, love so much and deserve to join the ranks of the old, grey and wrinkly just like so many other people do. Once upon a time I encountered death every 5 or 10 years. Now I encounter it every 5 or 6 months, so often that it’s become as familiar to me as the moon and stars. Familiarity doesn’t make it any easier to accept though; regular exposure doesn’t lead to systematic desensitisation.

Every time another friend dies of breast cancer another star disappears from my sky, the night gets a little darker and a little of that darkness lingers in my heart. In English when we talk about losing someone we say “I miss you.” Our French cousins have a different structure to their language and in French we’d say “Tu me manques.” This phrase seems to capture the overwhelming thoughts and feelings that come when the stars go out, when lovely people are taken from this life. Tu me manques translates as “You are missed by me” . . . To my friends and family who’ve died of breast cancer, you are and always will be missed by me.

Forget-me-not

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Coming of Age

It’s my son’s twenty-first birthday next week and I can hardly believe the years have passed so swiftly. He arrived exactly on his due date and has quietly filled my heart with joy ever since. It’s natural for a mother to feel proud of her son but I’m especially proud of him because his life to date has been far from straightforward and the last few years have been particularly tough for us both.  Years that should’ve been fun and carefree for him were marred by my cancer treatment. He was then diagnosed with anxiety and depression but we both know it had been wrapping its arms around him for several years. I suspect my illness played a significant role in tipping that delicate balance and the thought rests heavy on my soul.

Slowly but surely we are both reconfiguring our lives, learning to live with heartache, uncertainty and confusion safe in the knowledge that whatever happens we’ll find a way through. We know we can’t make up for the carefree years that were stolen away so instead we’re aiming to make 21 extra special, starting from today.

A week of celebrations begins with cake, candles and presents in advance of his actual birthday. It’s the first year that he’s been able to open anything early and we decided to bring this part of the festivities forward because he and I are going away for a few days next week. Carrying everything to London and back would be logistically difficult. Although 21 isn’t technically the year of coming of age (voting and alcohol are both legal from 18) it’s still an important milestone.

When he was 18 I put together an A – Z photo album of words and pictures representing who he is and what he loves.  There were other presents that year but the photo album is the one he treasures most. This year I’ve been busy researching all the events of 1993 as well as occurrences that took place on the day of his birthday over the course of the last 21 years.  This task has been made much easier through the wonders of the interweb! Having found a host of 1993 events plus a notable occurrence on each of his birthday’s from 1993 to 2013, I’ve turned them into illustrations – cartoons with a snippet of information about the event – to make a unique present he can look back on in years to come.  There are other presents too but I’m hoping this one will join the photo album among his favourites.

Our trip to London is the first time we’ve been away together for far too long. He loves the hustle and bustle, travelling by tube, street performers in Covent Garden, the glazed ducks and bright orange squid hanging in the windows of China Town’s restaurants, the smell (and taste) of all that Chinese food. He also loves the theatre so this visit includes a couple of surprise West End shows which are sure to be a lot of fun. Both productions will have us singing like song larks for the rest of the week so by the time next weekend arrives we’ll be hoarse, in serious danger of annoying anyone in earshot, or both!

I’m glad we’ve been able to secure this time together, that nothing else has impinged on it, that we are both in reasonably good health and can go away for a few days to create some new, happier memories for his coming of age.

(These pictures were taken last weekend. He played for over 5 hours in a charity football tournament with all the proceeds going to St. Peter’s Hospice and raised over £1000. Another good reason for me to be proud of him 🙂 ).

Yuletide Gratitude & Thankfulness

It’s the season of goodwill and all around me friends and family are scurrying to get ready for Christmas.  Although a number of us hold no strong religious convictions we preserve many of the customs handed down from generation to generation. As well as giving gifts we decorate our homes with fir trees, holly, ivy and mistletoe, a practice that pre-dates Christianity.

The ancient Celts cut mistletoe and placed sprigs above their doorways offering protection from bad weather and evil spirits. The mistletoe festival and crowning a mistletoe queen still takes place in my local village.  The ancients believed mistletoe was sacred and used it as a cure for many illnesses (please don’t eat it, it’s poisonous). To them it represented peace, friendship and fertility. Bringing greenery into the home at Yuletide also served as a reminder that once the winter solstice had passed the sun would return and crops would grow.

To live in a fertile land where food is plentiful is a blessing but I haven’t lost sight that I am fortunate to be able to feed my family. Although we live in a modern society there are many here who are hungry, cannot afford both food and accommodation, or whose families rely on food banks to ensure they can eat one meal per day.  As well as hungry people there are hungry animals, abandoned or neglected due to circumstance or spitefulness.  Eating is something many of us take for granted. When you’ve been hungry and had no money for food you realise being able to buy produce is something to be thankful for.

My country is largely peaceful and for that I am grateful too. There are incidents, more violence and intolerance than I would want, but most of us feel safe in our homes and out on the streets. The various Governments of my country engage in warfare from time to time though this is rarely done with the support of all citizens. The sanctity of life is important, yet perhaps we only realise how important when looking death straight in the face? Once you understand that time and old age are not givens as I and anyone affected by a critical illness soon learns, your perspective changes. Life is not something to be wasted over power struggles, land disputes or disparate beliefs.  I am grateful for every second of my life, the ups and downs, the quiet solitude, the time with family and friends. Much has changed in the past 2 years and there is no doubt life is harder, more uncertain and sometimes frustrating. Yet I am not regularly faced with procedures I have no choice in, made sick as part of the process of getting better or mentally confined in the land of the lab rat. I am thankful that those days are gone, that I am largely intact and still have hold of a reasonable chunk of physical and cognitive ability

I am grateful for those who are dear to me, whether nearby or far away, for the friends I’ve known since school and my virtual friends who have offered so much support. I am thankful that my son is showing signs of improvement and the depths of his depression are not as all-consuming as they were in summer.  I am glad we trust each other enough to talk about the problems and seek help. My Dad is simply amazing and if people were paid based on the goodness in their hearts he would be the best paid man on the planet. I am glad we are so close and have the ability to find strength in adversity.

I am thankful to prepare for another Christmas, to decorate the tree, wrap gifts and listen to cheesey songs. I’m grateful to have time with my family, drink tea and eat toast in a warm house surrounded by cats while a storm is raging outside. I’m thankful for the chance to experience 2014, wake each day and watch the seasons change. I am grateful for my humanity and my commitment to improve things for those around me in any way I can. We may walk this path only once so I’m going to make the most of each minute. I hope like me, you’ll find a way to celebrate the good things in your lives and give thanks for the time you have.

The Butterfly Effect aka The Unspoken Impact of Life-Threatening Illness

I’ve been pondering this post for a while. It involves potentially difficult topics, significant others and the impact of my diagnosis on their lives. Shedding light on these often unspoken situations involves crossing boundaries into what happened/is happening to those people as a result of me developing cancer. There are questions of respect and privacy to consider.

Here in the UK there is minimal talk of how difficult it can be for those close to a cancer patient to deal with the words ‘cancer patient.’ The need for support is alluded to but support for exactly what is rarely verbalised. I’m not sure there is full disclosure of the extent of challenges  the people near a cancer patient may find themselves facing. Having been a person nearby on more than one occasion as well as being the patient and witnessing first-hand what happens to others I’m aware very aware of the potential repercussions. The cancer butterfly effect can be extensive and it includes life-threatening / life-inhibiting illness for family and friends who suddenly find themselves thrown into a world of chaos, uncertainty and fear.

The butterfly effect is part of chaos theory so linking it to the chaos of cancer doesn’t stretch the imagination too much. The theory suggests there are sensitive dependencies on initial conditions hence a small change to those initial conditions can have a huge effect somewhere else. In theory a butterfly flapping its wings outside my window might result in a hurricane off the coast of America in a few weeks time. Cancer is no small change hence its butterfly effect can and often does have devastating impacts elsewhere.

For teenagers and young adults the reality of a close relative or friend with cancer can be extremely difficult. At a point when life ought to be fun, carefree and exciting they are suddenly forced to confront  the fear associated with illness, surgery and treatment. They are also forced to consider the spectre of death. This is no way to spend such a formative part of our lives. I know because I was a teenager/young adult when my Aunt and my Mother developed cancer. I watched both go through many different, disabling and sometimes dehumanising treatments. I saw them both lose their lives and I came face to face with the violence of death when my Mother developed a pulmonary embolism. It was not peaceful. Seventeen years later the sights, sounds and smells are all still etched in my mind.  It was ten years before I could set foot in the hospital where my Mother spent her final day and even now I hate going back there.

My son has had to face similar trauma following my diagnosis. Fortunately I am not dead. Hopefully I am dying at the same rate as most other people – little by little over a period of at least another 30 years. Despite my son’s positivity, despite his seemingly mature approach and our well-reasoned suggestions that I would be fine, the cancer butterfly effect has taken a huge toll on him. He finds it difficult to come to terms with what he sees as the unfairness of it all. He asks “why you Mom?” He struggles to reconcile that “terrible things happen to kind people who don’t deserve it.” For over a year he has been plagued with nightmares, relentless images of suffering, mutilation and death.  He tells me he couldn’t cope with what happened to me but didn’t want to add to my worries. He tried pretending everything was normal when life for both of us was completely surreal.  After seeing him become desperately unhappy and withdrawn, referring him for counselling, witnessing his panic and hearing his concern that no-one would believe he is unwell, we finally found a Dr who understood what he’s been faced with. She diagnosed depression. My son won’t be able to reclaim the past two years of his life, or however long it takes to improve his mental health now his condition has been recognised.

Family members have little choice about their engagement with the cancer patient, particularly if they live in the same household. Even when they don’t it is almost impossible to avoid the trauma unless they rule the patient out of their lives entirely.  Friends have more freedom. Fortunately most friends don’t go AWOL, sadly some do.

One of my very best friends abandoned me completely. Despite knowing each other for two decades, sharing a whole range of experiences including having children, riding out good and bad times together in the past, this experience brought our friendship to an abrupt end. There was no discussion. There was no explanation. Seemingly there was no thought about the impact this desertion would have on me at a time when my whole life hung in the balance. Seemingly a long term relationship built on trust, respect, mutual support and loyalty only mattered while I was not a cancer patient. When I became a cancer patient it was OK to throw our friendship away.

I haven’t had chance to talk to this absent friend so I can only guess as to the reasons for walking away from what I thought of as a friendship that would last a lifetime. My guesses include a fear of my condition, being uncomfortable/repulsed/disturbed by the changes in my physical appearance (I was too but had no choice!), being unable to cope with a very able, independent friend who had become very sick and much less able for a period of time.  Other guesses include triggering unpleasant memories from the past, thinking I might become a burden or feeling inadequate/ill-equipped to deal with the prospect of serious illness and death.  I’ve spent the past year wondering what I did to deserve such treatment. Had our positions been reversed I wouldn’t have walked out on our friendship, even if I knew that being present meant entering a world of uncertainty, facing the prospect of death and the heartache that inevitably goes along with it. Perhaps I place more value on relationships than this friend did. Perhaps my absence friend can only commit while the weather is fine but when it’s monsoon season shipping out is the only option. Perhaps my friend is also suffering from depression. I don’t know because in spite of trying I haven’t been able to establish any meaningful dialogue and now, many months on, I have to conclude for my own sanity and future well being that this friend was just a long-term acquaintance, not the friend for life I thought I could trust and rely on.

This is just a snapshot of the butterfly effect that accompanies life-threatening illness. I suspect cancer is particularly difficult because in spite of various awareness campaigns the disease still strikes fear in most of us. Most of us know someone who didn’t make it. There is very little tangible support for people like my son. Fortunately he and I are close, we can talk about it and we are doing our best to work through all of it together. It will take time and we know there are no miracle solutions. As for my absent friend, I guess I’ll never know exactly what happened or have the opportunity to help work It through. I wish you happiness anyway.

 

Sometimes…

Sailing Away

Sometimes I’m not good with words. Or rather I can’t string them together in the way I’d like so that I say what I really want to say. 

Sometimes I’d like to say THANK YOU in a way that isn’t just the ‘I’m grateful, you’ve made me very happy, I feel so lucky, thank you’ kind of way.  I’d like to say it in a way that conveys what’s really going on, without sounding fawning. How do you speak those two simple words as if the best firework display, most beautiful rainbow or a perfect day is dawning in your heart? I don’t have the answer so instead I send my usual heart-felt thank you’s for making this year’s birthday special and memorable, you know who you are and I appreciate it so much.

Fortunately try as it might there are some things chemobrain won’t be able to wipe away and that’s useful because it has succeeded in scrambling many of my previous memories and cognitive functions. Usually it sees me going to the fridge at least three times when one trip would’ve been sufficient if only I could remember why I went to the fridge in the first place!  Cooking can also be dangerous.  I’m an auto-pilot cook. I abandoned following recipes long ago and have sufficient culinary experience to know which flavours go together, how best to combine them and how to cook things long enough to prevent food poisoning. As long as I’m left to cook in peace all will go well… interrupt my train of thought and there’s every likelihood some essential ingredient will be omitted from the meal.  Multitasking is something of a conundrum for me these days; I find I swear at myself (audibly) at least twice a day – ongoing knee problems a fridge or cookery incident will usually be the culprit.  It sounds silly but it’s incredibly frustrating.

I was recently asked to provide some insight to the breast cancer experience for a magazine article.  What useful advice or information was I able to offer those who are newly diagnosed to help with their treatment and recovery?  I entirely forgot that chemobrain can present a number of challenges!  I did mention that the process from diagnosis to treatment may be complex and fraught due to false starts, incomplete information and new revelations every time some extra scan or tissue analysis takes place.   I also mentioned that I felt it was important everyone recovers at their own pace since there are many misconceptions about how soon we should be ‘over it’ and of course it is never really over, the scars don’t disappear (physically or metaphorically).  My other pearl of wisdom was blogging; the ability to connect with people all over the world who are willing to share insights, offer support or find ways to make us seem less alone with the nightmare.  The blogging community has been invaluable to me as a source of inspiration, knowledge, encouragement and experience so I’d like to thank  all of you too in my clunky but deeply sincere manner. 

On the day I took the photograph in this post it was supposed to rain, the day-long clothes-drenching kind of hard cold rain that makes even the most upbeat people thoroughly miserable. I decided to go out without a coat or umbrella and take my chances, after all, what could a bit of rain do that cancer, surgery, chemo and a bunch of other chemicals haven’t already achieved?

Sometimes life doesn’t turn out the way we think it will. Sometimes it does.

Sometimes it surpasses all our expectations.  Thank you 🙂

 

un jour très heureux

Lunch.  It happens in the middle of the day typically between 12 noon and 2pm in the UK but for the past four years I barely had chance to experience it.  The long gap between breakfast and dinner probably played havoc with my sugar levels and metabolic rate; who knows what else it impinged on.  Since deciding to take this summer off I’m experiencing and thoroughly enjoying the concept lunch. My lunchtime can be anywhere from 11.30am and 4pm because I’m not compelled to fit around anyone else’s schedule, particularly endless meetings that go on too long and achieve too little.

Yesterday I caught up with two friends for lunch in Ledbury, a pretty town just over 20 miles away that’s full of quirky old buildings and quaint little alleyways. We had crepes and salad in the garden of a tiny French bistro while enjoying 31 degree sunshine and brilliant blue skies. Five years ago the three of us worked together in a telecommunications company.  We were younger, none of us had turned 40 and we hadn’t experienced the various life events of the past few years – new babies, career changes, relocation and regaining wellness.  Financially we were all successful career women earning good salaries but the corporate world ruled our lives.  We rarely had chance to spend the money we worked so hard for and lunch was virtually unheard of. When we weren’t working the chances were that we were talking about work!

Five years on and one of us runs a holiday letting business as well as being a full-time Mum, another is setting up her own company while studying for an MBA and I’m taking summer off to make good on some long overdue promises I now have the opportunity to keep. Times have changed and although none of us has the potential spending power we held back in 2008, its obvious we’re all happier, more relaxed and genuinely enjoying our lives morning, noon and night. Meeting up to have lunch at our own pace in agreeable surroundings while we talked about living (not working) made for a very happy day.

When I returned home I found Maurice at Duck? Starfish? but…23   had kindly introduced me to SuperBetter. Working through a few of the introductory stages I was drawn to the following:

“It turns out that having someone on your side – 

  • someone who makes you smile,
  • who you can be yourself around, and
  • who you can ask for help

– actually improves your physical well-being more than starting an exercise program or losing weight and it helps your health as much as quitting a pack-a-day cigarette habit. It seems there’s scientific evidence behind these claims and I also know from experience that spending time with people I’m relaxed around and who make me smile gives an enormous boost to the spirit. That can only be a good thing and it seems SuperBetter thinks so too 🙂

Don’t be dismayed at goodbyes

Life is a precious gift. Don't waste it being ...

Life is a precious gift. Don’t waste it being unhappy, dissatisfied, or anything else you can be (Photo credit: @Doug88888)

Developing cancer has changed my whole world.

Many of the changes have been outside of my control for example the results of surgery.  The outcome is inoffensive enough yet it serves as a permanent reminder that I’ve been touched by something very sinister. Every time I see myself I note the scar marking the place something truly awful lurked inside, something so horrible that it would have killed me quite soon had I not decided to act quickly.  The results of my treatment – chemotherapy and herceptin –  equally outside of my control.  Dr C cannot tell me if or how effective these rather harsh treatments have proven because every cancer patient is different. There are statistics but who amongst us fits the profile? That’s anyone’s guess.  The only thing all cancer patients have in common is that there are no guarantees. Every day post-diagnosis is something to be happy for, even when those days are marred by pain, ulcers, nose bleeds, stomach problems, fatigue, insomnia, immobility and drug induced illness.

The way other people treated me has also been outside my control. I’ve tried to remain upbeat, retain a sense of humour and  focus on what’s good in life when at times I felt (and thought) the easiest thing would be to give up, accept the misery of the situation and take the easy way out.  Taking the easy way out is not really my thing though which is just as well because some of my experiences have been nothing short of shocking.  In spite of all this, the sinister presence of cancer and people who appear to have had the compassion and common-sense equivalent of a pre-frontal lobotomy  I’m still here, I’m feeling stronger every day and best of all, I’m free.

I hope I’m cancer free but won’t get that news for another 4 years. Even then I won’t be taking it for granted because cancer isn’t that simple.   Today my sense of freedom stems entirely from the fact that I no longer have to put up with politics, inflated egos, posturing or positioning.  I’m not enslaved in an environment that’s at best noxious and at worst the complete opposite of what it thinks it is.  I’m not a burden on the state and neither am I beholden to anyone. I pay my taxes, recycle my garbage and abide by the law – I’m as free as any of us can get these days.

Achieving this new-found freedom hasn’t been easy. I’ve had to give up so many things, accept life won’t be the same again and come to terms with  heartbreaking losses that will never be recovered.   Important losses, not trivial material things that have no real meaning when all is said and done. Material things can be replaced.

Losing my friends and colleagues, at least from a work sense,  has been tough. Finally holding leaving drinks with them last week brought everything sharply into focus. I worked with some very good people and the depth of camaraderie is difficult to walk away from. I was deeply touched by the comments they made, the loss they felt and the things they saw in me that I was unable to see in myself. Last year was far from pleasant, the tail end of the year before wasn’t brilliant either (my mother-in-law died and the circumstances of her death left an indelible mark on my memory) but I was truly blessed to meet such wonderful people and spend even a tiny proportion of my life with them.

Being separated from my best friends and my family for large chunks of time while my life was a merry-go-round of medical appointments, drugs, drugs and more drugs wore away at my soul like sand erodes boulders in the desert.  My family and friends persevered even when I was limited to telephone and email instead of seeing them in person; in doing so they helped show there was something worth waiting for when I’m finally allowed beyond the boundary of hells antechamber and returned to my real life. The scary monsters ambushing me from all angles have been counteracted by the depth of relationship I have with my brilliant Dad and a small group of people who stood by me as true and dear friends.

Life has a funny way of driving kindred spirits together and for a variety of reasons last week served as a sound reminder that whatever happens those who are genuine and who genuinely care are never far away.  I’m  certain  there is no need to be dismayed at goodbyes. They’re  just a blip in the space-time continuum,  a temporary inconvenience and nothing more.  True friends endure all the moments, good and bad that go to make up a lifetime.  I will always be here for them as they are for me.  Sometimes good things come from bad experiences. There really is no point wasting your life being unhappy, dissatisfied or bored because its short, very short.  Cancer teaches you that.