Mesothelioma?

When I was diagnosed with breast cancer in 2009, I experienced a variety of reactions. Shock. Disbelief. Distress. Sadness. Perhaps a little judgement, what had I done to cause this? However, not one person said to me, “So what’s that then? Breast Cancer? Never heard of it!” We have a very long way to go, of course, towards real levels of awareness of what Breast Cancer is and there is a wide spectrum of understanding, ranging from “the-easy-cancer, guaranteed-curable-if-found-early and you-can-live-without-a-breast-anyway” through to “oh-my-goodness-cancer-you’re-going-to-die”. But that is another story and not for today.

The story for today is about Mesothelioma. Put up your hand if you have heard of Mesothelioma? (My hand is half raised, I have kind of heard of it since my own diagnosis and connecting with the cancer blogosphere). Fine. Now put up your hand if you know what it is? (OK, you’ve got me there – I really don’t know……..).

A few weeks ago, I received a comment on one of my posts, from Cameron. Now, bloggers receive all sorts of comments which don’t quite make it to the “approve” button. I will always approve a valid comment, and while some are obviously spam or robots (and the source of many a giggle) there are some which are a little bit more difficult to figure out. Cameron’s was one of those posts, one which takes a little effort to work out.

Hi Philippa! My name is Cameron …. and I had a quick question for you! I was wondering if you could email me at your earliest convenience ………. I greatly appreciate your time!!

I headed for Professor Google and Cameron was very easy to find. I learned that Cameron’s wife Heather was diagnosed with Mesothelioma and they are advocates for awareness. Thanks to the way that the internet brings familiarity quickly among strangers in the blogosphere, I replied:

Thanks for your comment and for stopping by Feisty Blue Gecko. ……………. I took the liberty of quickly Googling you, in case the comment were spam or if you were seeking to promote a cancer curing toothpaste so am happy to see that neither of those seem to apply and you do appear to be a real person.  🙂
I imagine you are contacting me regarding the forthcoming awareness day for mesothelioma? Rather than make any more assumptions, I will wait for your email……

What I did not confess to was that my own levels of awareness were dire. I had no idea what kind of cancer Mesothelioma is and am not even sure how to pronounce it. This is a post of self education as much as broader awareness raising.

Mesothelioma is a complex cancer distinguished primarily by three factors: rarity, cause and aggressiveness. The disease is one of the least-diagnosed cancers, and it is often misdiagnosed. Mesothelioma attacks the lining of the body cavity called the mesothelium. The cancer is caused by exposure to asbestos or materials containing asbestos.. Between 2,500 and 3,000 new cases of mesothelioma are diagnosed each year in the US. On average, those diagnosed are given between 9 and 12 months to live. In the UK it accounts for only 1% of cancer diagnoses, but 2% of cancer deaths. It is rare, aggressive and particularly lethal. I had no idea.

There are three recognised types of Mesothelioma. Pleural, peritoneal and pericardial mesothelioma. 80% of all mesothelioma cases occur within the lining of the lungs. Peritoneal mesothelioma occurs in the abdominal lining, and pericardial mesothelioma in the heart’s lining. I didn’t know any of that.

The reason Cameron is so passionate about raising awareness and understanding around mesothelioma is clear. His wife, Heather was diagnosed with mesothelioma in 2005 and given 15 months to live. While mesothelioma typically affects males more than females and most commonly diagnosed in those between 50 and 70 years of age, Heather was 36 years old and the couple had a daughter of 3 months. You don’t need me to provide the terrifying maths facing the young family.

However, this is a story of hope. Heather and Cameron found specialist treatment options and Heather’s story is here. Today she is mother, wife, advocate and alive!

Cameron, Heather and their daughter Lily

Cameron, Heather and their daughter Lily

And today, September 26 – is Mesothelioma Awareness Day. I have learned a great deal about this rare and dangerous cancer.

The very high profile of October as Breast Cancer Awareness Month can overshadow very rare cancers and cause division. The reality is that any cancer diagnosis is potentially lethal, and every diagnosis is traumatic. With a cancer which has a higher profile, I find benefits, but I also find assumptions which are not based on fact.

As a person who has heard words which chilled me to the bone – “this is highly suspicious of cancer” and stepped over an invisible line into a new and terrifying territory, I reach out with a hand of solidarity. ALL cancers are evil and steal so many lives.

Let us work together in the movement to understand and eradicate all cancers.

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Unbelievable.

It takes quite a lot to rev my temper engine, but this is beyond my comprehension. Offensive, insensitive to the extreme and in my view, utterly useless.

Unbelievable

These are just a few reasons that this has incensed me:

  • October 13th is the sole day dedicated to Metastatic Breast Cancer, in itself woefully inadequate.
  • Many women have had surgery which means that not wearing a bra is in the least extremely uncomfortable.
  • Many of us are trying to hide the fact that our surgery brings significant asymmetry – not wearing a bra would be excruciatingly embarrassing.
  • Most surgery for breast cancer brings pain and often considerable restriction in range of movement.  Waving your arms in the air (as in the image above) is another indication of how far removed this is from reality.
  • What about men?????

So, what on earth could not wearing a bra for a day possibly achieve? 

Not awareness. Not respect. Not much needed research. Not action.

And certainly not a cure.

Slipping off the fence

Geckos have very sticky feet apparently.  That is why they can scuttle up and down walls, along the ceilings and in and out of corners without regularly falling onto the floor.  I must have some of that stickiness when I write because I quite like to sit snugly on the fence during many of the lively discussions which we have online.

 

I find myself losing my grip and sliding off the fence just a little this weekend, following a bit of an altercation with Facebook.

I am in the excruciating situation of having been taken in by the latest awareness raising game or activity on Facebook.  A couple of years ago women put their bra colours on their status updates and watched as comments of puzzlement came from the male membership of Facebook.  The idea behind it was to make people stop and think and with the reference being to bras, there was a link to breast cancer.  Hence raising awareness.  I guess.

Last night I saw a Facebook status update posted by a recently married friend, referring to a number of weeks, and craving a certain food.  There was a string of comments, sending warm congratulations and expressing delight at the prospect of her being x weeks pregnant.  Thinking this was a lovely piece of news, I added my own warm wishes, preparing to tell the great news to hubby J.  It was not long before my friend posted very quickly that this was not about pregnancy and had to issue a very direct update to put folks right.  I was mortified.  I might as well have put my red face right up there on Facebook too, as that is the side bonus of the misunderstanding – it is VERY public. They should add a “cringe” button, as I would certainly have clicked it beside my comment.

Usually I step back from these campaigns a bit.  I don’t want to upset those particularly who have given me enormous support during breast cancer.  But this prompted an unusual amount of nighttime thinking, which is taking the form of this seriously, “off the fence” rant about this Facebook activity.

So what is my problem?  Why am I particularly struggling with this awareness campaign?

Well, there are a number of reason…………….

  • I personally feel bad for attacking it.  There is a feeling that by taking part in this, it offers support and solidarity to women and men who have been diagnosed with breast cancer.  I feel guilty that I am rejecting the support being offered to me by people I am close to.
  • Awareness raising is about EVERYONE and should not be withheld from a very large part of the population.  Why for women alone?  Men can also get breast cancer.  And how about the men in our lives who have looked after us and loved us unconditionally throughout this.  Is it fair to exclude them? And do men have sisters, wives, daughters, mothers and friends who have been diagnosed?
  • The risqué tone of the campaign also feels a bit unnecessary.  We don’t need to have an undertone or insinuation to make a point.  Breast cancer is not cute, it is not fluffy and pink.  And it is difficult in many contexts even to say that you have breast cancer, it is too private.  There are many cancers which are forgotten or hidden and don’t have the attention that breast cancer does.
  • Updates which clearly suggest pregnancy are at risk of being insensitive to those affected by fertility issues following active and prophylactic treatment.  Chemo and radiation frequently affect fertility.  We affectionately call it the “chemopause”.  Women who carry a BRCA mutation gene often have elective surgery – oopherectomy and mastectomy.  I had never heard of an oopherectomy before my own breast cancer experience.  This is the removal of the ovaries, a procedure taken by many women who are at a higher risk of ovarian cancer.  A step taken by many young women and a dreadfully tough decision to take for many who have to choose between having children and the increased probability or breast or ovarian cancer.
  • Awareness raising is indeed still critical, in many contexts, as I have just discussed here.  However, there is a huge need, as is widely discussed by some highly informed and well researched blogs and articles, for focus on research, targeted treatment and metastatic disease.  If you want to get a feeling for the wide and complex variety of issues around breast cancer, follow the #bcsm (breast cancer social media) hash tag on Twitter.

Please, don’t think that I am ungrateful for the enormous solidarity and support in this game, especially as I know that many are reaching out to me personally offering love and support.  Please know how much I value and appreciate it.  I trust that you know how much I hesitated before deciding to post this.

There is a huge big black storm cloud outside right now, and I feel as if have played a part in its formation!  Time to slip back onto my cosy place on the fence.

Off on a tandem!

You can see from my blogroll on the right that I follow a large number of blogs, most of them Breast Cancer related.  Keeping up to date with the diverse and rich postings might take time but never fails to move me. I am humbled and inspired, I laugh and cry, I am inspired and challenged.  Through this I have “met” some phenomenal women (and a few men too, of course, but this domain is very much dominated by women).  Everyone has a powerful story to tell and there is an incredible level of spirit, intellect, snark, feist and debate.

When I first started this blog, it was an outlet to help me process the extreme stuff I was being faced with, and focused mainly on the immediate.  While I was in the thick of treatment in the months following diagnosis it formed a detailed account of diagnosis and treatment in my rather unusual setting.  Blogging was a lifeline.

Over a year later and in a different space, when I step back and look at it, I find that the blog has a different character too.  Now I find there are still some updates, but my ramblings are more reflective and often trying to make sense of life lived through the Breast Cancer lens.  I find that many of my thoughts are inspired by the rich material there is in each other’s blog posts. I love the variety in our posts, in our approaches and styles, reflecting how different we all are and our experience is.  I have special “thinking time” when I let my mind develop some of the thoughts which are stirred.  I love to let my thoughts develop during my daily swim, though it is a bit difficult then to note down any nuggets which I really want to remember, so I find myself repeating and mentally refining these ideas as I plough up and down the pool, mixing ideas with the number of lengths swum.  I also love that time after I put my book down at night and switch off the bedside light before I fall asleep for thinking creatively.  That is also a challenge in terms of somehow recording these ideas as they often disappear into a dream world rather too quickly!

So recently, when I read about Terri’s Big Dream, my mind started firing with a barrage of random ideas and thoughts.  Terri dreams, (which I believe means plans and will find a way of doing) of establishing a non-profit to help other cancer survivors volunteer internationally.  A vey exciting project, and one which we will connect about to chat and perhaps brainstorm a bit.

My mind however, went careering off on its own “tandem” ( as I love to say 😉 ) It made me think of the very different experiences which women have, depending on where they happen to be.  There can be quite a variation within countries, even where there are policies and guidelines such as the NICE guidelines in the UK. Living in Asia has given me an acute kind of better sweet cancer experience.  I personally have had an incredibly sophisticated treatment and care plan, with state of the art medical facilities and practice, the latest medication and no waiting time for surgery and results.

Very many are not nearly so fortunate though.  Facilities, diagnostics, pathology can be limited and medical specialists not easily accessible.  The costs of care can be completely out of the reach of many.  There but for the grace of God, go I indeed.

There is another aspect though which I find fascinating given the level of sophistication to the debate and dialogue regarding Breast Cancer demonstrating that many women are empowered and informed with regard to their treatment and care.  I regularly stand in awe of many of my co-canceristas when I read complex analytical discussions, thought provoking and carefully researched posts, powerful personal accounts and challenging articles.  There is a very strong Breast Cancer lobby driven by articulate, intelligent and dedicated people, passionate about the plethora of issues.  There is a strong challenge to the pink marketing and lack of progress in research and debate.  There is a drive to move beyond awareness raising and address the lack of research, particularly into metastatic cancer.  This is critical, there is no question of it.  Too many are affected by metastatic disease.  Cancer is still stealing so many.

However, I would like to just stick my neck out a little, and share my thoughts about awareness raising from a different perspective.

After I was diagnosed, I returned to Yangon and buckled down for the long ride of treatment.  I was blown away by the amount of support and help from friends and colleagues here. Then one day I received a phone call from a colleague.  She was very upset about my diagnosis and wanted to send her love and prayers.  It was incredibly touching, and bear in mind I had only been in this new job (and country) just over three months.  Then she told me that everyone was really surprised that I had been diagnosed with breast cancer.  Apparently, it is believed to be a “spinster” disease which only (or usually) affects women who have never married or had children here.  I was totally taken aback and responded quite strongly.  Many traditional beliefs have their origins in in a remote truth and I can kind of see where that might have roots, after all apparently having children at a younger age and breast feed your babies are seen to be factors which relate to reduced likelihood of developing breast cancer.  But I was shocked that the belief was so strong and I immediately vowed to raise awareness as widely and appropriately as I could do in my local setting.

To me this is a reminder that there is and clear and pressing need for awareness raising in a number of contexts, and this is not limited to the example I have shared here.

Nor does this mean that the question of research and particularly understanding and treating metastasis should come later.  It is not an “either/or” question.  There is no doubt that there is an urgent need to shift emphasis in the more advanced contexts, while seeking contextually appropriate ways of raising awareness where this is clearly needed.  My aim here is to convey the message that there is enormous diversity in levels of awareness and debate and I for one need to be reminded of that and the role I can play in it.

I am intrigued to hear how Terri’s big dream develops and while I know that the direction that my mind took does not reflect how the dream will come to life, it just shows how much we inspire each other in every sense.

 

Race for Life

Today sees a number of women taking part in Cancer Research UK’s Race for Life.

The Race for Life is the largest women-only fundraising event in the UK.  The Race for Life website tells us that “Since 1994, women of all ages and fitness levels across the UK have come together at these inspiring events to walk, jog or run 5k to help beat cancer.

Some take part in celebration of surviving a cancer experience. Others take part in memory of a loved one or to give hope to a cancer-free future. But all of them share a common goal: to raise money Cancer Research UK’s groundbreaking work to beat cancer”.

I had vaguely heard of Race for Life in my Pre Breast Cancer life, but who would have imagined it would have the meaning it does now?   The  Races take place throughout May, June and July across the UK, but today’s one is particularly poignant for me.

Today H and E are running as part of a team in the event in Queensferry near Edinburgh and my friend, M is running with her niece in Inverness.  Many friends and family members are running in other Race for Life events across the country in the coming weeks, as well as in the Loch Ness marathon in October.

It is a strange and emotional experience, and particularly humbling.  This time last year I was completely unaware about cancer.  It was not something that had touched us closely.  Furthermore, no one in our near family (blood relatives) had been diagnosed with cancer, as far as I am aware.  I think I overestimated the importance of hereditary factors in cancer, I had a belief that cancer was not something that would affect us.  This made the shock of my diagnosis in October all the more acute.

That situation has turned right round now.  I have made friends with other women with breast cancer and who are also undergoing treatment here. I have had incredible support and innumerable valuable hints and insights from family, friends and colleagues who have also been affected by breast cancer.  I have also connected with other women around the world through the Breast Cancer sites and other blogs.

And recently, women close to me and my family have been diagnosed.  Life at the moment seems to revolve around breast cancer.

So the Race for Life events which are underway around the UK have a powerful significance.  I am humbled by the efforts of so many to support the raising of funds and awareness towards cancer research, screening and treatments.  I am indebted to those of you doing many different things to raise this awareness and funding.

Breast cancer has changed my life irrevocably but thanks to the advances in treatment my prognosis is much more optimistic.

But there is still a very long way to go.

THANK YOU!