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Tuesday, 24 July 2012

The Gathering Storm

I copied my post about the Gathering Place taking down the photographic exhibit of a woman dying of metastatic breast cancer on to a forum for folks with advanced breast cancer and it has upset one reader who took exception to "The pink fluffy people are upset that Stage IV really does exists, and are scared that this may be their future - be afraid, be very afraid my little survivors as it could well be YOU." 

I am not sure that she understood, or wanted to understand, what I was saying and maybe I didn't make myself clear enough in original blog entry.  She is hurt by this because she doesn't have Stage IV breast cancer, but has been affected by cancer and has had a double mastectomy, and cancer took one of her kidneys last year and she almost died.  She said that if she had died it would have been due to cancer although she is not Stage IV.  I apologise that I obviously didn't explain clearly enough that I was talking about Stage IV metastatic breast cancer as I don't know enough about other cancers and their Staging to be able to comment.  Maybe Stage I kidney cancer can kill you, but my understanding has always been that Stage I is a small, localised tumour that is considered curable.  It is only when it progresses that it kills, but maybe I am wrong.  However if the person in question did lost a kidney to metastatic breast cancer then, as far as I am aware, she is indeed Stage IV.

The 'fluffy pink people', as I rather dismissively refer to them, are the ones who want us to celebrate and support the concept that they are going to live, but who don't want to give support to those of us who are not expected to survive.  God knows how much we all celebrate with them that they stand a good chance of surviving having early stage breast cancer.  NO ONE would deny them the glory of being given an all-clear, and every one of us would pray that this will be the case.  We actually don't want any more people joining the number of those of us who have been told by conventional medicine that they consider us to be incurable, and in my case that the only action they would take would be palliative.  However I would have thought that the very fact that they will hopefully remain my 'fluffy pink people' would give them the empathy and understanding to want to celebrate those of us who will never be fluffy or pink.  Instead they seem to want to ignore us and deny our existence rather than thinking 'there but by the grace of God go I' and supporting us to celebrate what life we have.  The actions of The Gathering Place was another sign that this support is not mutual, that we are to be denied equality as being LIVING human beings in need of compassion, but an ugly reminder of what could be their fate.  Hence the 'be afraid, be very afraid my little survivors as it could well be YOU'.

As I have stated before I grew up with a father who died less than three weeks after my 18th birthday.  I have only the very vaguest memory of him being able to do things normally, but I do remember being carried in to say a last goodbye to him in the middle of the night, and on more than one occasion.  Illness to me is something completely normal and an organic part of life.  Life is, after all, the world's worst sexually transmitted disease.  So far it is 100% fatal to mere mortals like me.  Maybe that is why I don't understand why people are so scared of illness, and especially if it is life threatening, see it as being something that sets you apart from others. 

I have probably mentioned my friend Hilary who died of stomach cancer 8 years ago (liver secondaries).  I went to support her with her first dose of palliative chemo, and stayed with her to support her and was reading a Sherlock Holmes story to her when she died three months later.  I couldn't comprehend how some friends could treat her as dead before she died.  I made sure that in the hospice, even when she was in a coma, that she had her favourite music playing, I talked to her, and read to her.  I told her, not long before she stopped breathing, and while she was in a coma that she had succeeded in everything that really mattered in life and that we loved her, but when she was ready she should slip away...I would be there.  Yet she had a friend who phoned to ask after her and wondered what she could do for her.  I said to send her a card or letter as she was off to London for the weekend, and that she tell her the latest, and about the trip.  'Oh I can't do that, I've already sent her a card' was the reply.  One reason I stayed to support Hilary was because no one else seemed to want to do it, people who had known her longer ... even her family.  They were happy to come to see her occasionally, but I knew that Hilly and I had many problems with depression, low self-esteem and self-confidence that we were trying to overcome by going to university to try and get the qualifications to pursue the career that we had always wanted.  I just couldn't let her die alone, and in so short a time after her husband had walked out on her and they had divorced.  Even when she was ill he liked to phone his 'friend' on occasion and whitter on about how happy her was with his new wife and life in Singapore, and even when he came back to the UK on business a month or so before she died and he had the opportunity, he didn't want to see her because it would upset HIM too much!!!!! 

Stage IV is still about LIFE.  That is what we struggle to get others to accept when all they want to do is put us on the other side of the line marked 'incurable = dead'.  I will not be dead until I take my final breath and my heart and brain stop functioning.  Even then it will only be the body that dies, the person remains.  When we get the support with our stage of LIFE, the celebration of that life and the acceptence that is, to me, doled out in buckets to the fluffy pink people who are looking the other way, then I will cease to use the fluffy pink people analogy.  Sadly through the actions of The Gathering Place and the general lack of acceptance of our illness, I don't see that happening in my life time ... but what the heck, the United States of America has a President whose father came from Africa!  Who knows ... watch this space. 


4 comments:

  1. I think you are quite clever Miss Sticki Vicki....I think you share your wisdom in a way that touches one profoundly....your words are poignant.... and I always care to hear what you have to say....

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  2. And you, Vicki!!
    I had a major issue on my blog and it was a post that included this issue over those photos (among other things). I mentioned that my motivation for everything that I do while blogging or in any type of volunteer role is primarily for those whose diseases was diagnosed at or progressed to Stage IV. I Left YOUR name out... I didn't want to start naming people but I did because I got so offended a comment that some movie critic left on my blog....

    I'm sorry you received "pushback" but it sounds like the woman who almost died may have been offended by your words, not her diagnosis. I am a stage 1 patient, currently 5 yrs post chemo and VERY WELL aware I'm never totally out of the woods. I empathize with all of you. What happens to one of us, happens to each of us.... I hate that anyone is living with mets....

    The good news about Angelo..... his exhibit was picked up by another gallery in Cleveland AND, he got a story on the local television news. I saw the exhibit in NYC and I introduced myself to Angelo that evening.

    I guess I want to say I understand how you feel having someone jump on you for your opinions. I'm sorry it happened to you and I'm sorry your name was not included when I started rattling off names in my own blog....

    Much love.....MUCH love...

    AnneMarie

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  3. I'm wondering what support from the pink girls would look like and feel like? They would be so uncomfortable to be reminded of their own possible future. I look to my dear friends who don't have cancer to support me and I know I can't ask others to do something they really don't want to do. We can't change other people and make them want to do something different than live in fear of what we represent to them. We all want to avoid fear, especially when it comes to impending death. I am new to this blogging idea, so I don't know the history of this apparent conflict. I think many cancer patients have anger they need to express and feel like it needs to be channeled SOMEwhere, at SOMEbody or SOME group of people.

    I really think that the general public is well aware of the seriousness of metastatic cancer. Several people I know are surprised that I am still alive - sometimes, I am too. I am choosing to focus my energy on healing my mind, heart and soul so that I FEEL BETTER and so that I can enJOY every precious moment of my life. My goal is to help others to live a more peaceful and satisfying life while dealing with cancer. I have far outlived my doctors prognosis - maybe I'm on to something here. Could you please help me get people to at least take a look at my blog? thank you for being there, Vicki. I have a hard time with typing those weird characters. joy and peace....

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  4. my blog is .... http://maggiemcdeeslife.blogspot.com/ thank you again

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