Wednesday 22 May 2013

Confessions of a cancer fraud (Annmarie's story)

 
After 6 years of treatment in the cancer sector, my learning never stops. Unlike a lot of things that we learn in our lives, everyone's experience is unique. So, no amount of reading, or talking with others can ever prepare you, for how you will deal with your own cancer diagnosis. Some people just quietly get on with what they have to do, and others are happy to share their experiences. There just isn't a correct way of dealing with things, just what feels right for you.
 
One of the things that I have learned,is so much that happens around cancer is out of your control. Not just how you feel about things, but particularly how other people view you, because of cancer. I have written about this on several occasions, but it is a very common issue, affecting most of us.

Personally, I have never seen a hierarchy in problems. It just doesn't matter if your problem is perceived as bigger or smaller than someone else's, it is still your problem. Some people are able to cope with things better than others. Frequently people start to tell me about issues, but quickly add, " Of course, it is nothing, compared to yours!"

 


Since I have been blogging, I have noticed a degree of 'competition' amongst people. Not just in written form but in conversation too. It is almost like there is an invisible health 'league table.' Are you in the 'Premier league?' If not you are in the 'regular league,' with the masses! I have found a lot of people who have been touched by cancer, who find it difficult to communicate their individual issues, because of this situation.

I try to cover as many aspects of the fallout from cancer, on this blog, and although I have a long and varied experience myself, I enjoy sharing other people's stories so that we can all learn from each other. Annmarie, talked of her frustrations with me privately, and I knew that this was a common issue and invited her to share her story, which is as follows:


"My experience with cancer was very brief. Strictly speaking, it would only have been life threatening if I’d refused to have the surgery suggested. Of course, I went ahead with it as really there was no other choice. It was major surgery and it was a few months before I would work or drive, but apart from aftercare, I didn’t need any further treatment.

Because of the nature of the cancer I had, it is almost certain that I will not suffer with a secondary case. I didn’t have chemotherapy or radiation treatment. Once I’d had the operation I was officially ‘in remission’, but did not attend the oncology department during those 5 years. Instead I was referred to the gynaecology outpatients for that time. 

But cancer left a permanent mark on me that I still struggle to come to terms more than 10 years later. Cancer left me childless.I’d already had 6 months of gynaecology appointments where I’d been diagnosed with polycystic ovaries and endometrial hyperplasia. I was told to go home and get pregnant quickly because things didn’t look good.
There’s no surer way to NOT get pregnant, I can tell you!

My consultant surgeon was amazing. She was so frustrated that she was not able to stop the condition from deteriorating. In her long career I was only the 3rd or 4th person under 40 that had the condition. I was diagnosed with endometrial carcinoma in June 2002. It was obviously progressive and two weeks later I found myself hospital ready to go under the knife. I was 30 and not yet 2 years married. 
 
As you can imagine there are many elements of this story that I’m saddened by. But from a cancer point of view, one of the hard things to cope with is that it’s like I didn’t actually HAVE cancer. You wouldn’t believe the amount of times it’s been said to me… "well you didn’t really have cancer". "You just had cancerous cells didn’t you?" "I mean, you never had any treatment, people who have cancer have chemo, you got off lightly."
 
 


 Please don’t get me wrong. I know I am blessed not to have had to go through the worry of dying from the condition. I thank God I didn’t have to have chemotherapy, but comments like the above have made me feel like a cancer fraud and I don’t think I ‘got off lightly’.
I consider myself a cancer survivor, but I don’t say it to anyone as it usually provokes a reaction that’s tough to take. But I know I had it.

Every time someone tells me they are pregnant, or I hold a new born baby or see one of my niece’s kids in their new school uniform – I’m reminded that I had cancer; albeit briefly.
Maybe this is a place I can say it out loud and folk will get where I’m coming from – I certainly hope so."

Firstly I would like to thank Annmarie for sharing the above with us. As I mentioned earlier it is a situation that I have encountered reasonably frequently, and I am very happy to be able to get these issues out in the open. If you would like to hear more from Annmarie, you can click here or contact her via Twitter @amowriting

7 comments:

  1. When I read her story, I am reminded of the foolish things that others say to people going through any problems. I, too, have heard similar things.

    After 2006 dx w/Stage 0 DCIS (Breast Cancer), and a decision to remove my right breast and have DIEP Flap reconstruction (no radiation or chemo necessary b/c made the mtx decision)--"You took the 'easy' way out." (Four MAJOR surgeries in one year.) ... "...it's not like you had REAL cancer..." Those are just two of the most stupid.

    Last year (May), I was diagnosed with Stage IV Carcinoid Cancer and had ileoectomy and resection of the left lobe of liver. I'm facing further surgeries (rt lobe of liver due to nearly 12cm lesion, etc.) and (in my case) radiation and chemotherapy will not be effective. Carcinoid cancer is a systemic cancer and there is no curative treatment, only management of symptoms. And the dumb things people say is amazing...

    "You don't LOOK like you cancer. I guess this is the 'good-looking' cancer, huh?"
    "Well, at least you lost 75# with this. You weren't too successful any other way."
    "I can't believe this can be all THAT serious. If it was, wouldn't you be dead already?"

    Yes, these are the kinds of things that people who say that they love you will say. Although we all deal with discomfort in hearing that someone we know is ill, there is absolutely no excuse for insensitivity and poor judgment.

    I'm just glad that I can find the humor/absurdity in life and shake my head for the stupidity that is shown.

    Here's to all who are taking on life's challenges and continuing to LIVE (despite the fools we encounter)!!!

    Coral
    Beyond Life's Challenges
    www.corallevang.wordpress.com

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    Replies
    1. Coral
      thank you so much for commenting and sharing your story. I was so worried when writing this and thinking about it going live.
      It's so encouraging to know that it's not me... I'm not going mad. These comments feel wrong cos it ARE wrong.

      I wish you the very best for your future and pray you can face what ever is to come with the same strength and fortitude that you're displaying today

      Thanks again, Annmarie x

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    2. Annmarie,
      People don't know WHAT to say. So they say something. Then it's dumb. Insensitive. Wrong.

      I've stopped worrying about what others say nowadays. I don't take much too personally.

      The reality (as I see it) is that when we seek out people who don't need taken care of emotionally, we start living again. We become responsible for our own "stuff" and then we allow others to help us stay focused on living and having fun do it. The others...well, they fall by the wayside.

      Thank you for your kind words. I hope you will stay in touch at my blog and also at BubbleWS. I'm writing more often, and I'm trying to figure out how to be able to keep up more often with others' blogs, as well. If anyone can help me maneuver through all that, first, we'll be in business! *laughs*

      Keep writing. Keep sharing your story. You are inspiring with your candor.
      Coral xo

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  2. Hi Coral

    Firstly, I would like to thank you for stopping by, and sharing some of your incredible story. There are so many of us that can empathise with Annmarie's story. It is a common issue that I wanted to publicise. There are so many people out there that find it difficult to talk about their issues, because of some of the things that you have both mentioned.

    Through my blog, I like to talk about some of the less obvious things that come about from a cancer diagnosis.I don't wrap things in cotton wool, as I feel that it is important for people to understand and finds that plain speaking works well.

    It really is a pleasure to share some of your experience, with my readers, as that is how we all learn. I look forward to hearing from you again, soon, Chris

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  3. Hello Annmarie,

    You've written a great guest post in Chris's blog, and both you and Chris touched upon that important yet not often discussed concept of hierarchy. I'm sorry you even had to hear the word 'cancer' in your life, let alone give up your ability to have children. And even more, I'm sorry you aren't able to express the feelings and receive a supportive response.

    My cancer was breast and it was hard - but years after the chemotherapy (hair back, energy better), what I'm left with more than anything is the awareness of what happened. Whether we're diagnosed with a few cells or many, that awareness happens and it sticks. Life changes.

    I hope you find a place to share your emotions that feels comforting and safe. And it's awesome to hear you say your cancer is wayyy likely to never return. That's what I wish for everyone ever diagnosed, and it's great to hear you had such good results in that aspect.

    ~Catherine

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    Replies
    1. Thanks so much Catherine. I really appreciate your encouragement.
      I know how blessed I am not to have gone through the treatment and resulting side effects, but you're right - we're all changed by it.

      Even having written the piece has helped - I was surprised how hard it was after all this time.
      But we're all on a journey - away from cancer - hoping never to return!

      Thanks again, Annmarie x

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    ReplyDelete