"My wife has just joined your club!"

When I answered the phone, a few days ago and spoke to a friend of mine, I started with our normal banter about football. We usually discuss the latest rumours surrounding our football club, who we should or shouldn't sign, and general 'man rubbish.' However this time was different. There was a very quick break in proceedings, and my pal announced that his wife had joined my club! For a minute, my mind went blank, and I assumed that he meant she had signed up to receive my blog notifications. He then very quickly followed that, by saying that his wife had been diagnosed with cancer!

That conversation prompted this weeks post. Due to my own personal situation, and the work that I do, I am talking cancer, on a daily basis. A lot of people have asked me if I would be better doing something else, but it just feels so natural now, it would feel strange without it! However, it does mean that I hear very frequently from people who are newly diagnosed. Of course, one of the early problems you face is how to break the news to others. Like most things associated with cancer, there is not one single answer. Everyone handles this issue differently too.

In my own instance, my diagnosis was such a shock, as I had been very healthy up to that point. There were a lot of people involved in my working life, and so many friends in my social world. We didn't really know the full extent of things but knew that I was in poor shape. A lot of my normal life was going to stop quickly, and my appearance was going to change as the treatment regime, accelerated. I felt that I wanted people to know, about it, but wanted to do it personally, in a lot of cases. I just didn't want that type of news spreading quickly, by phone etc.

It was very tiring and time consuming but within a couple of weeks, I had managed to tell most people who needed to know. I felt a whole lot better, the fact that I had explained things personally. But I had never considered how those people had felt, once I had told them! I then realised that it wasn't always about me and what made me feel better. What I didn't also realise, was that the way that people viewed me was also changed forever. Whether I like it or not, I am now seen as that guy who has cancer.

That helps me to understand, the people who don't say too much, when they receive their diagnosis. I know someone who didn't tell their partner until they were terminal. It really is a very personal decision. My experience has taught me how to handle this situation now, but there are times when even I am caught 'off guard.' There are two occasions that spring to mind.

 

 

The first is when I was having dinner with a great friend of mine, and midway through the meal I was informed that they had cancer, which involved some serious surgery, and a lot of treatment. There was no warning, and I had no idea, but it had obviously been eating away in their mind, and it just came straight out! The second was when I was at a large social function. I met someone who I hadn't seen for a long time, and asked them how they were. Again they came straight out and told me that they were in the middle of treatment, as they had relapsed, and things weren't looking good.

Initially, I felt very awkward, but very quickly that passed, and I dealt with both situations. I know from my own experience, that you can feel better once you have got something off your chest, but most of us don't consider how others might receive the information that you are giving them. It also taught me that if I felt awkward, with all the experience that I now have, how might anyone else feel? Is it any wonder that we may think twice about how we might tell people that we have cancer?

My own view has always been to get things out in the open. It has always seemed logical, that once you know all the facts, then that will help you deal with the issues. However, that is not everyone's view and I know that a lot of people are just not comfortable, talking about personal affairs in public. Cancer is unique in so many ways, and this is yet another example of that.

How do you deal with delicate issues? Do you like to talk, or deal privately with things? If you have had a cancer experience, how did you deal with it?

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!