The reality of living in a permanent shadow

Despite, the fact that I don't work, my weeks are never boring. My trips to hospital use a lot of my time, and I have calculated that in every month, I spend a complete week at hospital. I have had to become very selective in the projects that I am able to get involved in, so that I allow myself, enough recovery time between treatment. My reality is that I am unable to do the things that my brain remembers I used to manage! It has taken me a long time to come to terms with that.

I watch enviously as my friends fill up their social lives, and plan holidays. Remembering those days, as if they were yesterday. Now, there are times when an evening out can feel like climbing Kilimanjaro. If I get too excited and start filling up my diary, I know that it will inevitably lead to me getting sick again.

My visit to hospital this week provides my thoughts for this post. During my 6 years of treatment, I have to visit the hospital at least monthly for a review of 'progress.' Is everything working as it should? Inevitably it isn't, so I then have to undergo more blood tests to establish what is wrong. This normally results in adding more drugs to my current cocktail. In basic terms, we are a balance of chemicals. If we stay balanced our health is fine, but if something changes we need to adjust it.

The team that look after me are brilliant! To quote my Consultant, " we can control what we can with drugs, but nature will do it's own thing!." Thus far, 'Project Chris' has been successful. I have life, where no one anticipated it. Everyday is a miracle as far as I am concerned. In fact I have just reviewed a new document, written about my disease, factually brilliant, and clearly written, but woke me up to the difficulties I face.One interesting fact I didn't know was that only 500 people per year are diagnosed with Mantle Cell Lymphoma in the UK. I knew I have always been special!

My trips for 'review' provide me with plenty of ammunition for thinking. Not only regarding my own circumstances but those of other 'long termers' in the same clinic. There are a few of us in this 'exclusive club.' We have a very special bond, as we have been through a lot of treatment and shared our personal ups and downs, over the years. We all know the rules, and are aware that anything can happen at any time. We have accepted our situation, and talk openly about treatment and disease.

 

This week was different however. Still the cheery banter we all share, but this time, I was greeted with the news, that one of our number had relapsed! This is not the first time either, which makes it much more difficult. The treatment options get less, and harsher, and if you can get into remission, that period becomes shorter. She was so matter of fact about it, and was preparing to start treatment soon.

Then I met another friend in the corridor, who I hadn't seen for a long time. I had last seen him, recovering after a recent stem-cell transplant. The first thing he told me was that I looked so well, quickly followed by the fact that his cancer had also returned. He was resigned to the fact that he would have more gruelling treatment, which if he was lucky, may gain him some more time. He is not a young man, and we both looked each other in the eye, with a knowing glance. A seconds silence, followed by, "I have to believe, I have no choice!"

Both these wonderful people have issues very similar to mine. We all understand, possibly more than our doctors do. We are kept alive by the skill and patience of our clinicians, a complicated cocktail of drugs and treatment, and a huge element of luck. At any time, that luck can run out. There are plenty of times when we are able to  live our lives without the word Cancer coming to the fore. However, whether we like it or not, the fact is that we will always live in it's shadow.

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

Living with remission

I have titled this post 'Living with, rather than in, remission', as I feel that there is a big difference between the two. To explain that further, I have taken a dictionary definition of the word remission, in a cancer context.

'A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body'.

Over the years, I have spoken to many people about remission. Of course, it is a word that you are hoping to hear, as you go from diagnosis to prognosis to treatment. If things go as you hope, you may eventually hear those words, "Congratulations, you are now in remission".But what does life have in store for you now, once you have reached this stage?

Well unfortunately, the shadow of cancer that has walked with you this far in your life, will always be a constant companion. There is no hiding place from it. Despite being told the above, you will still have hospital appointments on the calendar, even if they are less frequent. You will still need to be tested/scanned at various stages, to monitor your progress and check for any sign of relapse.

Cancer, can be like carrying an extra bag around with you. There are times when you can put it down, and even leave it somewhere, but you can never forget about it totally, and fairly soon, you will be reacquainted with it!

Is it possible, to leave the hospital, having been told that you are in complete remission, and carry on your life as if nothing has happened? Personally, I don't think so. I know many people that are in that position, but it seems their lives are very different now. A lot of people don't even mention their experience, and it is only their chosen group of friends, that are aware that anything has happened. That is their way of coping. It seems like they have shut the door, bolted it tight, and are doing their utmost to forget about the experience.

Others are quite the reverse. Like to let everyone know, maybe do some fundraising, and awareness raising, generally sharing their experience. Which ever camp you belong to, your life has changed forever.Things that seemed important before, just don't have the same priority.One area where this can be very apparent is work.

Work is a very important component of life for most of us. It is always difficult to strike the right, work/life balance, at the best of times, but how do we view it once we have experienced cancer? Firstly there is the issue, of whether you are actually physically able enough to return to work. Sure we all need money to survive, so it can be extremely difficult to return to work, if maybe you have been off sick for a long time. Maybe lost your job because of your illness, and are looking to be re employed.Possibly having to change careers in later life as you cannot find the job you want.

In my own instance, I will never be able to return to what I was doing before my illness. I have been sick for more than five years now, and just don't have the hunger to get back into the cut and thrust world of business. My life is now dedicated to helping others. I am in remission, but am suffering the severe after effects of my treatment. Of course I am happy to be in remission, it is a miracle in itself, but my original life is behind me. I have had to make a new one, but am still lucky to be alive

I liken my remission, to living in the shadow of a massive tree. At times, you see some sunlight, but more often than not, you are living in gloom. Being grateful for what you have, but also never sure how long you will have it. Finding it difficult to make a long term plan, just in case! Never quite knowing what the next call or letter will bring. Always having that feeling of uncertainty.

On the positive side, life is never really boring, as I never know, what is going to occur, good or bad. There have been some fantastic highs as well as some very low spots. I am a very different person now, and at times, struggle living my new life.A part of me wants to go back to my old life, but the other part is glad that I found my new one. Whatever I really think, I have to live my life with remission, until something changes!