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 3^rd or 4^th 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

Just a piece in the jigsaw of life

My treatment has started again in earnest this week. Unfortunately, my efforts to regain some of my life have not been successful, and after trying my treatment monthly, my graft v host disease is beginning to get a grip on my body again, and I must resume a more aggressive regime of fortnightly. I did start a self centred moan to my Consultant, who smiled. She said that I will HAVE to slow down now, and that the staff would be pleased to have my company more often!

There are certainly many down sides of being in the hospital so frequently, and the treatment is tiring, but unlike chemo, it is not toxic. I am still plugged into a machine for hours but am able to focus on my thoughts. So I try and take the positives where I can. It certainly does force me to rest, and now instead of constantly using my smart phone, I listen to music or take some thinking time. It is the thinking time that prompted this piece.

I have again, become a very regular part of the nurses lives. Alongside my personal life, my 'cancer life' is intertwined with so many people in so many organisations, both physical ,and on social media. There are very many threads, taking me in so many different directions. Yet it feels that in some crazy way, everything joins up eventually, like a very large circle.

 

My work takes me into some incredible peoples lives. Their stories are unique, but they become part of my life, and me theirs. I liken each life story to a jigsaw, we all have our own, in which we are a piece, but we also join up with other jigsaws, to form a larger one. As our connections grow, the picture starts enlarging, and changing.

Several weeks ago I was doing some work, and my experience was able to aid the process. The people involved were wonderful, and we have been able to help each other since. We are now very much part of each others lives, and stories. Now I am not only a piece in someone else's puzzle but my own picture is changing again.

When there are pieces missing from a jigsaw, you can never see the complete picture in all it's glory. If you consider certain groups that you know, family, friends, social, or work colleagues, when certain people are missing, it just isn't the same.

Time is a big issue for all of us, and as we get older, it becomes more difficult to find room in your life for new acquaintances. But I am finding that my list is still rapidly growing! Obviously we only have a maximum capacity, for relationship building. But as we accelerate through life, is the way that we deal with people changing? Social media means that we can maintain relationships in the way that we want. Not every person deserving of our valuable time in terms of personal attention!

My life has always revolved around meeting people. Some stay in the memory, and relationships form. Others come ,and quickly go. At different times, people come to the fore and then drop back again, as priorities change. At times the puzzle gets larger and other times it gets smaller.

 

I am always amazed that how through my illness, the relationships I am forming, feel very strong, and long lasting. Maybe it is just the phase that I am going through, but things feel very different now. Whenever I meet someone, I never feel that there is a hidden agenda. I still have my 'business awareness' which makes me cautious of peoples motives, but we only try to help each other. Maybe I am now a piece in an entirely different puzzle!

It seems that my life is swinging around so wildly, that I don't even know anymore, what the picture looks like. I feel that I am a 'universal piece' that can fit anywhere. Sometimes a corner, or whatever is required at the time. My life certainly feels like one big puzzle right now!

Are there times that you feel similarly? Please feel free to share your thoughts below

" Am I boring without my cancer? "

Firstly, I would like to say that it is not me asking the above question! This came from one of my followers on Twitter, and it got me thinking. The reason that tweet had been sent, was they had found that since they were in remission, and treatment had finished, the amount of followers they had was rapidly decreasing.

They had very quickly put the two things together and made that assumption. That then made me wonder, and I looked at my own life since cancer, and many other people that I know, both personally, and via social media.

In several of my previous posts, particularly 'my name is not cancer,' I have talked about the fact that whether we like it or not, we tend to be seen as that person with cancer, rather than the person you were before. Personally I have got used to that now, but I know that people who have little experience of what we go through, have a quiet fascination to know more. I guess also, that in many ways we encourage that curiosity, by the awareness raising that we do. Also, if no one asked about things, we may just assume they weren't interested!

 

I wasn't using social media from the start of my journey, so I have no direct comparison, but an example that is valid, would be my fundraising . I started raising funds after my stem-cell transplant. There was a fantastic wave of enthusiasm by people to donate. As time moved on, that waned, and raising money became more difficult. Along the way, I have been seriously ill on numerous occasions and the donations have increased. Now, only currently having maintenance treatment regularly, and after 6 years, it is a lot more difficult to raise enthusiasm.

Is it then, our use of social media that gives us a 'slanted' vision of how people view us? A lot of people tend to judge their own popularity, by the quantity , and coming and going of followers. Personally I don't. I have always tried to have fun, and make people smile. That hasn't changed since my diagnosis. What has changed, is that I now use social media!

However, when I review my own journey, since diagnosis many interesting things have occurred, both good and bad. Since, and because of my illness, some incredible things have happened for me, and I have met people, and done things that I could only have dreamed about, in my life before cancer. There is talk in the future about a book. The ironic thing is, that there is little appetite for the first 50 years of my life, the most excitement, is about what happened after I was diagnosed!

Due to my cancer work I am now known around the world, through conferences and social media etc. Certainly that would never have happened in my previous life, but I would like to think that people enjoy what I do, rather than having an intrigue into my health issues. Or am I kidding myself?

Most of the patients that I know through here or personally, were quite happy getting on with their lives, until cancer came along. A lot of us enter the internet world, because we want to connect with like minded people, raise awareness and find out more information. We are passionate about what we do, and open our lives up to the world. This creates, in many cases, a swell of interest, generally temporary, short or longer term. Then our lives go back to a 'new normal.'

Life with cancer, creates many highs and lows, physically and mentally. It can be difficult dealing with the physical side of things alone. At times there is a lot of attention paid to you because of your condition, not only from the medical profession. If there is a positive conclusion for you after treatment, it can be extremely difficult, psychologically, to return to everyday life. Maybe, without a lot of the attention that we were used to.

 

This year I will be talking at more conferences than ever before, only because of my illness. It is great that so many people are interested in things, and a valuable opportunity to raise awareness, but I would be doing none of this if I hadn't got sick. Certainly my phone never rang with so many interesting people.

In my own case, I will never be far from this terrible disease, so this is part of my 'new life,' but I can empathise with people who might question, where all the people go, when they get better. 

What is your view? How has your life changed? Is this an issue you have even thought about? I look forward to hearing from you.
         
                          You will always find me on Twitter @christheeagle1

The blogging revolution in healthcare

Several blogs ago I mentioned that my diary was mostly empty and I was enjoying it that way. My major professional engagements were successfully completed, and it was now time to review my strategy for the rest of the year.Emails and phone calls then came along, with some varied and exciting opportunities, which set my juices flowing, so I am back in the game!

I have chosen today's subject, as a lot of the opportunities that are coming around for me,are linked in some way to my blog. Many more people are aware of what I do now, because of the power of the internet. It is such an effective method of communication. Anyone who wants to know my story, or what I am currently working on, just has to check it out via the blog. It saves me so much time, phoning or mailing people.It also means that people can do things when it is convenient to them.

 

My blog was started just over a year ago. I needed an internet platform for people to find me when my tv programme was broadcast. I didn't know what to write or who my audience was. It was just a focal point for anyone who was interested.But today the picture is very different.There is now an audience, and demand for a certain style of content. The audience expects high quality and interesting content. All this for free!

Bloggers get wound up by lack of comments, but do we comment when we read a newspaper? There is plenty of area for thought, but generally we move on to the next unrelated article, having consumed that one.Also, more of us are reading from smart phones and tablets on the go, which is not conducive to writing comments, even if we are thinking them.

More than 5 years ago, when I started working to raise awareness, of the psychological and emotional issues of cancer, social media was in it's infancy in the health sector.Facebook, was busy, with people's holiday pics, but nothing much else, and Twitter was starting to be used by celebrities as a method of promoting their work. It appeared that blogging was for 'would be' authors, who wanted to dip their toe in the water, and test their work, with very little expense.

How things have changed in such a relatively short space of time! Obviously the subject of cancer is a niche market, but you would not think that. If you look around the internet thoroughly, you can find information on virtually anything. It seems like people are embracing the freedom that they find in social media.When I started writing, I felt that an open and honest blog was what was required to encourage people to think about their own issues differently.I now find so many people are opening up about their illness in such an intimate style, that at times I feel like a family member!

Reading other peoples stories is very powerful, and people can find a sense of release, when writing their own.The slightly unseen, and so far relatively untapped benefit, is when the professionals get involved. Patient blogs are a wonderful tool of understanding how cancer and it's treatment, affects people in their lives, and I feel that many health professionals lack even a basic understanding of social media, and there is still a feeling that it is not valid in their work.

However there are clinicians and other professionals around the world who are fully engaged in social media. They blog, they tweet and run websites. Happy to share with the knowledgeable and the less so. It is quite obvious from what they write that they are all well informed, regarding patient blogs.These are such a rich vein of information, and much more interesting than books.Everyone has a unique way of communicating their experiences and emotions, and dealing with the highs and lows that occur during ill health.

I don't think I can claim credit for the revolution in health blogging, but I am certainly proud to be a part of it. There is never a day goes past where I don't read somebody's blog.I feel I know those people so well even though in 'real life' we have never met.Social media generally, is a very powerful glue, binding like minds together, and helps forming strong bonds, enabling you to deal with difficult times slightly more easily.

In recent weeks I have been shocked by the demise of several members of my 'community.' Mostly, young people, taken by bowel cancer. #never2young Truly terrible. The thing I find so powerful is that all of them were so open and honest about their situation and shared a lot willingly, with everyone.This is a massive change to how things were with cancer even just 10 years ago, when people rarely dared to even mention the word.

 

It feels very perverse, to say that things have progressed when we now talk openly about death on social media. My view is that we can't deal with something properly until we understand it, and by talking about things, hopefully we can learn more. There is a lot more to come from blogging, so watch this space!

I would like to dedicate this post to the brave young lady that is #katiescarborough Katie has just written, what may possibly be her final post entitled 'a brick wall.' I have never read such an incredibly brave piece, and I remain in awe of this young lady and her family. My thoughts are with you all. This sums up the power that can be generated through a blog.