Perceptions

I've been wanting to write some posts just lately on the different sides of a family living with a cancer diagnosis.  Two subjects feature heavily at the moment in our lives, subjects that are not necessarily always associated with cancer.  They are survivors guilt and other people's perceptions of a cancer survivor.  I've decided to start with the latter as it has and is causing us much stress.

So, you've faced the tests, the diagnosis, the hospital appointments, the operations, the chemo.  You've gathered information about the cancer and are aware it is terminal, incurable, isn't going away without killing the person you love.  You've looked up the statistics of survival and found they aren't that great, like 12-18 months!

I've always said Paul has and never will conform to any Mesothelioma statistic.  He doesn't fit the average age and he has never been aware of being exposed to asbestos.  So in true, not fitting the statistics we are now just a couple of weeks away from him having survived not 12, not 18, not 24, not even just 36 months but a whole 48 months or 4 whole years!  A massive achievement.  At diagnosis we never thought this would happen, but it has!  We don't really know, how or why but we are tremendously greatful.

Every person that knows us should be pleased right?  Pleased that Paul has beaten the odds and although now living on what can only be described as borrowed time, surviving a terminal cancer diagnosis!

Paul suffers with fatigue every day.  Most days he has an afternoon nap and if he doesn't he is tired the next day.  I can tell when he is tired.  If he is out of the house and seeing people, then he is feeling ok.  If he was feeling rough you would be unlikely to see him.

Why then is it ok for others to judge a terminally ill person as being perfectly OK because they are walking up the street!  Why do people think that even though they know the diagnosis they know exactly how someone is feeling?!  Why do people presume that because your not on your death bed, your not ill!

Some things you just never imagine you will face, when faced with cancer.  This is one of mine!

Cancer has taught me a lot of things.  I'm more emotional now than I ever was, I'd like to think it's made me kinder and more considerate than I ever was but most of all its taught me never to judge until you know a complete story.  Life can be hard, everyone is fighting a battle which none of us know the complete story of.

I know the people with these perceptions of us or Paul will never read this because anyone that does read this is one of our nearest and dearest or a supporter of ours.  Paul and I remain greatful for the abundance of support we receive from family and friends.  Although we are surviving, it is still part of our day to day lives.

Small update!

Apologies to anyone that follows the blog, I haven't written for what feels like ages.  For a number of reasons really.  My laptop is very old and slow and it is very difficult to write anything of much length on an iPad.  Luckily today I bought a wireless keyboard for my iPad and hopefully this will make it easier and more convenient to write.

As a family with a stable, mostly healthy Mesothelioma patient, although the disease is never far from our minds, it seems to be getting easier to put it to one side and get on with day to day life.  We can be a normal family!  Another reason my blog has probably been neglected.

Paul had checkups with X-rays in both April and July.  Both came back stable again.  The three months between appointments seem to fly by.

We have just had a fabulous six weeks of summer with Ethan.  We had two lovely camping trips and several days out and about.  Ethan has now gone back to school in year 1 and will turn 6 in December.

Later this month Paul and I will celebrate 10 years of marriage and in early October Paul will have been diagnosed for four years!

I hope over the coming weeks I will write more.....