Metastatic Breast Cancer … culture?
I have just watched a TedMed video on youtube and it started me thinking; you may have heard the noise of the rusty cogs moving. Andrew Solomon came to realise that there was a vibrant ‘horizontal’ culture in the lives of those who, for instance, are deaf or are dwarves just as there is a gay culture, Christian culture, British culture …
These cultures of adversity (for want of a better word) have been formed by those who accept their differences from the masses and the similarities that bind them together. He talks of going to deaf theatre productions, deaf poetry performances and attending the Miss Deaf America Pageant in Nashville where people complained about the ‘slurry Southern signing’. The mother of a dwarf one day realised that she would never have dreamed that the son she was told should be left in hospital, and who endured more than 30 operations, would one day be the first in the family to go to College; and that one day she would be worrying about him drinking and driving with his College buddies after seeing his especially adapted car outside a bar when she was driving home one day.
Is there a Metastatic Breast Cancer Culture? If so what are its defining characteristics?
A loathing of the Pink Culture of survivorship?
A common bond of unspoken understanding?
An anger that more research is not done specifically for metastatic disease?
An empathy than joins us together no matter where we are on our path/in our treatment/emotionally/physically..?
An understanding of fear and sleepless nights?
A desire for the world at large to know that MBC exists and acceptance by the Pink Culture?
A desperate desire for those Pink Survivors not to fully understand MBC but still wanting them to accept us?
A need to alter our posture to compensate for the parts that are missing?
An ability to accept and enjoy the wonder of the moment?
A need to understand what even the greatest scientists in the world don’t understand because it is so individual to each of us – the cancer and the way of understanding.
Mood swings that only come from extreme hormonal imbalances from the cancer and the treatment. Yes, I know I am crying, but isn’t that just the silliest thing you ever saw?
Mood swings are where I am at, at the moment at least. Monday of last week was a wonderful day that I enjoyed so much. The sun, the blossom, still being able to ‘walk’ into town with the aid of my Nordic Poles. Come Thursday and I totally crashed and burned. I have increased the antidepressants that I take so that I have some medical help with this, and I have been trying to think why this came about. Am I the Catherine Zeta Jones of MBC? Should I be in rehab to help deal with this? I don’t think I have ever used this many question marks at one typing before! That’s it, get back to the exclamation mark!
I have managed to narrow it down to a few things that I think have been triggers for all of this. They are small and insignificant on their own, but put them together and you have ‘meltdown’. One of the causes is isolation. I live alone, I have no children and I have great difficulty in explaining my feels because I was programmed to think that everything I do is wrong and I am not allowed to show any emotion in case it upsets others. But how do you explain it to those who are not a part of the ‘Culture’ of having metastatic cancer, and is it possible and is it desirable for others to understand? Do you understand what I am talking about? Oops the question marks are back!
I also feel isolated by the fact that I have now lived with a metastatic breast cancer diagnosis for 64 months and I am still ‘only’ on hormonal treatment with Denosumab to strengthen my bones. A dear member of the MBC Culture died on Friday and I am still alive. She has children/grandchildren, I never will. She had things to live for, I feel that I don’t, at the moment at least.
Another reason I crashed and burned was that when I told my oncologist about some symptoms when I saw him a few weeks ago he all but laughed at them because they are not known to him, and ‘this he had to see’. I rarely mention any symptoms because I have lived with pain so long that I only really notice it when it is very severe, and it really takes a lot to get me to take extra pain meds. Behind this is the fact that I had to have a hysterectomy 11 years ago and inadvertently the Registrar told me that tests showed I might have cancer. Turned out that the tissue they removed was ok (allegedly) but the tumour marker which had shown up was also a marker for breast cancer. I repeatedly told doctors that this had shown up, that my mother had breast cancer but their advice was that I should take HRT, which I did periodically for a short time. Even when I told my GP years later that my back was so bad that if it went on like this I would be in a wheel chair in a few years, and that tests showed in 2002 that I might have cancer and my mother had breast cancer … go away and come back when things get worse. I have never been to a doctor unless there is a genuine reason to go. Last year when I had cellulitis and ended up in hospital on IV antibiotics for two weeks I was reluctant to see a doctor because they might come up with the mantra of ‘come back when things get worse’. I have never told my oncologists about symptoms that are not relevant, and again they have to be really obvious for me to start taking notice of them. So far on the symptom scale I have been 100% right and the medical profession 100% wrong. I even walked around on a fractured hip for months because they wouldn’t listen.
But I digress … to get back to the idea of a Metastatic Breast Cancer Culture … is it a possibility that it exists, and if so is there some way that we can make it more positive? Can it be about what we can do and achieve? How do we learn to celebrate this culture when one of the big problems, which I am loath to mention, is the fact that there is a ‘high-turnover’ of staff in this sector. I know that one thing that I would love to be able to do is for those who are just diagnosed to have access to a way of understanding what they are going through. I know that it is perfectly normal to feel those feelings [I just had a phone call from a number I don’t recognise where the person just said ‘we all love you, goodbye’ and put the phone down – how bizarre is that?] and have emotions that are all over the place no matter how well they may be controlled: in my case not very much! How can we help others to by-pass some of the crap before they can reach an equilibrium, or sorts, of living with Metastatic Breast Cancer, rather than dying of Metastatic Breast Cancer? Can this be a part of the culture of MBC?