Yet again this morning I received an email mentioning that the sender thinks that I am to be envied for "living the life of Riley". This person is a lovely person, with a slight disability herself, and in a highly-paid job. She knows that I am terminally ill, but sees from my Facebook profile that I post a lot of photos.
The reason that I am not also at work is that as soon as I told my employer that I had been given a terminal diagnosis, they set loose the dogs of their "Employee Well-Being" department to chase me off the premises. The doctors had given me just 3-4 months. However, without assistance from them, I have now been around for nearly 15 months.
I have never been someone who sits around watching tv or relying on spending lots of money shopping to entertain myself. I have always got out and about, and have loads of interests - from walking in the countryside (or at a push urban wildernesses), making and looking at art, museums, wildlife, my garden, reading, industrial archeology... Just because I am dying of cancer, this does not change who I am. I have indeed widened my interests, compromised how far I can go (we don't have a car, so it's always been public transport for us) and certainly had to watch how much everything costs (although having done my degree as a mature student recently and working for museums I'm good at economising).
However the short time that I have now is in place of the 20 years of retirement that most of these people will enjoy. I know that they mean well, but they are wrong. I could tell them that when you know you are going to die fairly soon, you blooming well NEED to keep busy - because if I didn't I would very quickly slide down into deepest of depressions, and a state of terror and self-pity. It seems that it acceptable to go off once on a dream hol, then we should knuckle down to complying with the doctors' prognosis and we should jolly well be miserable whilst we're about it, not go gallivanting off and making other people wander, "Why am I sitting at the desk doing things I hate doing?" or "Why can't I motivate myself to get off my butt and go and do something meaningful?"
My ethos is that I'm going to neck however many painkillers and anti-anxiety tablets it takes and keep on going out and doing things - this is life as I know it, and I don't want to have to accept anything less until I really do have to.
I am NOT living the life of Riley. I am living with the Sword of Damocles suspended by the its single hair right over my head. I know that it is there, but I do not keep looking up at it.
My prayer is give me patience to keep smiling when people say these asinine things.
xxxx Penny
FormerMember
"Aren't you lucky to be having the Summer off work?" I've heard that one too. This is so typical of what all of us have said repeatedly - no one can understand what it is like to live with cancer if they haven't experienced it. I include myself in this - I had NO idea until I was diagnosed. As you said, it is living life underneath the Sword of Damocles. Whatever the prognosis [and I do not want to know mine], I know that the rest of my life will be lived on a knife edge, waiting for this filthy disease to come back. I've been very lucky in a lot of ways - I've had 62 very good years, I've had a good education and a job I enjoyed, a loving family and I've done nearly everything I've wanted to. But the last few years have been tough, with losing my parents and my darling husband, then having a long commute and stressful job, and I was planning - selfishly - on having some ME time in my retirement. Well, it's probably not going to happen. I need to keep on working so as to keep my medical cover and support from my office. But cancer is teaching me some valuable lessons. Life doesn't go on forever, this isn't a rehearsal, and the remaining time is very precious and must not be wasted. No more lolling around with a book when I could be outside, no more putting off jobs indefinitely, no more forgetting to reply to a letter or call a friend. Good for you Penny - keep necking those pills, get on the bus and keep pursuing your interests. They make you the valuable and inspirational person you are ... and they keep you going, and motivating the rest of us. Lots of love to you - and many thanks. Kate xxx
Firstly keep posting ur photos, they brighten up my day when I lof into facebook and they come up on my daily thread of info!
Secondly someone people are just insensitive and clueless. Over the last few months I have seen and heard many close friends making the most insensitive remarks to Mayte. Sometimes I think people kinda bumble and get nervous and just engage their mouths before their brains, because they don't know what to say to someone with cancer.
I've noticed that other friends have just not contacted us that much that we we're close to and have isolated us away from their parties and celebrations. I don't know whether you have experienced any of this from people close to? Aren't humans funny creatures. Don't let silly remarks get to you Penny. Lots of hugs xxxx
Yes, I knew I wouldn't be the only one getting these sort of comments tossed around! You have flagged up another classic there with the "summer off" - of course you are floating around your swimming pool drinking Pimms and mulling over which designer outfit to wear to the soiree this evening, aren't you, Kate? NOT! You have suffered a series of tragic losses, and I don't know how you maintain the courage you do: I am so glad that you can look back with tenderness and satisfaction.
I can understand people not wanting to enquire too closely into the future. Unfortunately I had an oncologist who blithely trotted out gloomy statistics at every opportunity, and it's a kind of Pandora's box: either got to be kept tight shut or investigated thoroughly to find the Hope at the bottom.
As you say, people just have no imagination. I had a wonderful friend with cancer a few years ago and I have to honestly say that although I didn't fully comprehend what chemo meant (I just saw the lack of hair), I did tread softly and certainly didn't tell them they were lucky. I WAS a lot less understanding as a young teenager, and I am sorry now that I was not more demonstrative towards my grandfather who eventually died when I was 15. I must say that we kids were not really told anything specific until very near the end. I think there tends to be an existentialist phase. Maybe some people develop no further?
Anyone else got any tactless and glib phrases they've been beaten over the head with?
(Showing off my one of two Spanish words there!) Thank you for your reply, which you were typing just as i was doing my reply to Kate. I think you have a very good point there with the mouth-before-brain bumbling. I'm very sorry that you have had people withdraw: it's possibly again that they don't know what to say or how to react, but you certainly suspect sometimes it's because we are there reminding them that life isn't all roses, roses (or rose wine).
I have had a couple of people turn their back. One instance was a work colleague who rang me regularly until her neighbour also passed away from cancer. She rang me that week and was acting really strangely, saying things in a very angry voice, and has not rung me since. I knew that she felt bitter that I was still going whereas her neighbour was not. She was a strange woman anyway, and being higher than me at work once threw a book and swore at me when I said that I didn't have time to do some extra, unpaid work - so I wasn't greatly surprised by the phone call. On the other hand, I sat next to a chap in the chemo suite one time, and he told me that absolutely none of his friends had been to see him!
Ho hum. However, I am flipping lucky in one way: In the five months since I first belonged to 'What Now' I have met so many fabulous, generous-spirited, witty, determined and lovely people. How many healthy people can say that?
Nobody's said anything like that to me, but I hope I would be able to laugh and say "You didn't mean that the way it sounds!" or as I normally do, I say them first about myself.
As a very lucky person who had it caught early, I try to let people know there is life after cancer, that diagnosis is the beginning of the cure. If mets arrive, it is really bad luck, but there are a lot of people who could be cured and have been cured if/when it is caught early. This will save money for the people who have been really unlucky so they can be treated well and have lots more life open to them.
I think it is wonderful to have so many really brave people on this board. I arrived when it was all over bar the shouting, but for the ones who have been treated badly, my heart bleeds.
It just shows what a sneaky disease it is when it lies around for ages pretending to be an ordinary twinge and then turns into a raging monster. My oncologist is quite a gruff person. I really get the idea that he hates cancer, so I never mind how he talks to me. He's going to kill my cancer.
Penny, why not pretend to have the life of Riley? It is nobody's business what you do, but maybe they were just joking and it bit them back. I bet whoever it was is cringing every time they remember what they said to you.
