How do we make progress?

I have been thinking today, how do we make progress with getting Metastatic Breast Cancer recognised when so many of those with the disease feel the need to deny that the breast cancer has spread?

I suppose it depends how you were diagnosed.  In my case I had actually just gone back to work while continuing my adjuvant chemotherapy regime when an x-ray was finally looked at and it was realised that my right hip was about to collapse.  I actually had to phone a friend at work to say I would not be coming into work that afternoon as planned but I was being admitted to orthopaedics for a hip replacement operation.  I rather crashed and burned in a rather public way.  There was no hiding what had happened, and I was not going to lie about why I was now on crutches having had a hip replacement.  How exactly was I supposed to explain that one?

For a lot of people their Stage IV diagnosis is not as obvious.  Others may not even notice the difference between before and after, at least visually.  I know some folks get upset at being told that they don’t look ill, but on one level it is a compliment, but it is also linked to the expectation that someone with incurable cancer should look pale, have no hair and be painfully thin.  If you don’t look like that, well then you can’t really have cancer.

Of course this is linked to the expectation that cancer = death.  Well, yes it might do, but cancer can also = life.  Cancer can mean living a life that is more connected, abundant and appreciated than anything that came before the diagnosis.  It is no longer possible to live a day without noticing it, even if you can’t remember the detail because the memory is shot, you know it has happened.  There is no more living on automatic pilot, every day is flown by the seat of the pants with that odd, but thrilling, mixture of exhillaration, terror and gratitude that you are still air-borne!  We are all young Spitfire pilots in the Battle of Britain … thrown into this head first with no training that could possibly prepare us for what we have to do to survive but, damn it, we are going to do our utmost to remain alive and make it to the end of each day relatively intact.  We may have a few holes in the fusilage and a wing may be shot up a bit, but we have made it down in one piece … it is just unfortunate that we have to do it all again tomorrow.  Tally ho!

But why are we made to feel as though we aren’t allowed to talk about our experiences?  Why can we not feel that it is acceptable to say we are Stage IV.  After all where is the stigma of being diabetic?  So why is there a stigma connected to Stage IV cancer.  After all diabetes can also be caused by lifestyle choices and is called a chronic disease.  They want us to believe that we have a chronic disease, but unlike other chronic diseases it is not one that can be talked about and is not accepted as such my many; somehow it is seen as a failing of the individual, or we are seen as victims.

I have not failed and I am not a victim of my disease.  I have it, it doesn’t have me and I am damned if I am going to let it take more of my life than it has already.  I am using cancer to make me appreciate each day more than I would have done before.  I am using cancer to find a way of celebrating growing older.  I am using cancer to focus my life and thought on to the things that really matter.  Today as I walked into town to do some shopping I noticed the world around me, as I always do these days.  The sky was intense wintery blue and as I walked home I was scrunching through the fallen dry leaves like a small child.  I actually made a bee-line for them so I could hear them crunch under my feet, and I could almost feel the Wellies on my feet and the hand knitted gloves on my hands.  Now that is JOY at being live!


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Health Communications and Health Advocacy

With deep understanding, health communicators can engage and inspire change, whether in individuals or in society as a whole.


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