"Awwww"

After yesterdays longish post I thought that something short and less serious might be in order for today. I have never been much of a fan of the seemingly endless “cute kitten” videos that are shared on Facebook. However I have discovered recently that video clips involving cute or funny animals nearly always work a treat with my wife these days and raise plenty of smiles. Each to their own, but she is about to be inundated!

I was also thinking that, in the spirit of the title of this blog, it might be interesting to keep an ongoing list of things that have actually worked and helped us find some of that elusive happiness and fun.

• cute animal video clips
• talking with others (without self-pity or negativity)
• sunshine
• walking outdoors (fresh air and exercise in the country)
• road trips
• a good pub lunch
• laughing with relatives and family

Hardly a list of staggering insight or wisdom I know, but we all have to start somewhere.

Tough Love

It's been an interesting week since I last shared my thoughts here. We have had some very good moments and some not so good. It is the not so good that I am going to concentrate on today, not because they are the more important, but mainly because they have allowed us to learn the most from them.

I will try to describe the underlying situation as simply as possible. I had never heard of “chemo brain” until relatively recently, and whilst it has a slightly comical name it is a thing to be taken seriously. My wife has been suffering for some time from memory loss, difficulty with concentrating, finding the right words to use in conversation and a general feeling of fatigue. These symptoms match almost exactly those suffered through "chemo brain" and she has been experiencing them almost continuously since she underwent her chemotherapy sessions over two years ago. Unfortunately, this has escalated a little recently and has resulted in mistakes at work which has understandably caused some stress and anxiety. A rather unsympathetic response from her employer is increasing her stress which, of course, means that more mistakes are being made as a result. An obvious and unpleasant downward spiral has resulted and has lead to an anxious and difficult week at home.

Previously we have been able to laugh at this in a kind way as a family and my wife has had the ability to laugh at herself which has enabled her to cope more easily with something that must be very concerning. This has allowed all of us some perspective on the issue. However with the sudden increase in pressure at work this safety valve has stopped functioning. She is convinced that she is about to be fired and sadly her managers are not doing anything to help her control these fears. They are making her feel like she is a liability to the business which means that she is becoming more and more reluctant to share the reasons for this with them. She wants to be treated as a normal employee and does not want any special dispensations for something that, in her mind, is just her not being very good at her job. Not a healthy or sustainable situation to be in.

These feelings have been brought home from work every evening and shared unwittingly with the family. She has come home in a depressed state and we therefore all get to feel her pain. She believes that her employer would be sensible to get rid of her as she is no longer capable of doing her job. She has also convinced herself that she would not be able to find any other paid employment when this happens. Her mind is telling her that this really is the end of the road for anything normal in her life and her self-esteem has been shot to pieces.

Understanding and sympathy are of course useful in trying to help anyone feeling down and worthless. It is probably fair to say however that both have been pretty ineffective over recent weeks. As I know through my own experiences, if you have convinced yourself that you have little or no value then someone trying very nicely to convince you otherwise is almost certainly wasting their time. So it was no great surprise that things came to a head before the weekend.

We were out and having a pleasant evening. The conversation drifted onto work and suddenly she couldn't stop herself from sliding down another greasy pole into a comfort zone of self-pity and fear. Kind words had no effect and obstacles were very quickly placed in-front of every sensible point that was shared. She was clear and no-one was going to change her opinions of herself.

Without going into details, the conversation moved into difficult territory. It can be so painful to talk harshly to someone you care for and empathise with. But there are times when all of us need to be told not to be stupid and to find some balance. Times when it is right to tell someone that this self-defeating negativity carries no value to it and is ruining not only their peace of mind but also those around them. That none of this matters more than the most important things in life, like having kind and understanding family and friends around you, a roof over your head, food on the table and the gift of actually walking up in the morning and being granted another precious day of life.

It was painful and difficult and, at the time, probably not greatly appreciated. The tears and raised voices did not go unnoticed and doing this in our local pub was less than ideal. But it happened and it helped and there has been a significant improvement since. I am grateful for that and I believe that she is as well.

If there has to be a lesson here, and there probably should be, it is that we all need people around us who love us enough to say the harsh things when needed. And of course, we also need the humility to get our head around the strong words and hear the intended message.

Background reading on this seemingly little understood area using the links below.

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chemo-brain

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/changes-in-mood-or-thinking/chemo-brain.html

Not Kewl

I had some time on my hands last night and decided to do a search for humour and cancer. I was in a positive mood and thought that a light-hearted check might be a good way to spend some time whilst my wife was out with friends. I have also touched on the subject recently and wondered whether there was more information available than when I last looked. To say I was disappointed would be an understatement.

It's a difficult and sensitive subject and like anything serious, people often believe that any attempt at humour is disrespectful. I tried images first. There always seems to be thousands of these when I search for other subjects but in this case, there very few indeed, and those I did discover were mostly in French for some reason. Visually, humour and cancer does seem to be peculiarly Gallic.

I then took a look at some of the websites that the search located and again, not a massive success. I did find a place that offered examples of Awesome Things To Say To A Cancer Patient but these were strangely not awesome at all. I know that in our house if someone said “may I pray for you?” or “do you need someone to co-ordinate volunteers?” they may not get the response that they were hoping for. I was also just a little surprised to find that there is actually a list of the top ten signs that your spouse is trying to give you cancer! Incredible.

One site very kindly mentioned a whole list of films that might make cancer patients laugh. I am sure Dumb and Dumber, Shrek and Ace Ventura, Pet Detective are likely to make some people laugh, but I would suggest that they are more likely to be under the age of about 12 than have any special meaning for cancer patients. But I am open to correction on this point if anyone feels differently.

I will take another look when time permits. Sadly the only thing I was able to take away from my brief research, and very unwillingly at that, was a peculiar line from a place that thought that there was humour in suggesting that a bad way of telling friends and relatives that you have cancer is to send the following text message....omg! I've got cancer. Not kewl. :(

True but just wierd.

Sensitivity

Back to the hospital yesterday for a check up and test results.

The most important thing is that the results were good. Again. But surgeons and consultants sometimes have a lot to answer for. In attempting to say everything is fine he ended up getting himself into a right mess and scaring the hell out of my wife.

The message she brought home with her was not “you are doing well” but “this is a bad cancer to have had, you need to check yourself very carefully every week or two and never, ever put yourself at risk in the sunshine again and, by the way, did I tell you that this really is a nasty type of cancer?”

He realised his mistake and tried hard to over-compensate, but as we all know, the more you dig the bigger the hole becomes. He ended up taking her hands in his and trying to convince her that things are not so bad, but maybe it was a case of too little, too late.

She appears to have taken it well. I made sure we were out last night and we had a good time with some of the kids and friends. I suspect that some damage has been done but time will tell. We all have the best of intentions at sensitive times like this but it is so important to think not just about the message you have to share but also how you share it.

The Banishment of Self Pity

There are moments in life that come along every so often that stick in your mind and cause you to stop, catch your breath and think carefully about what has just happened. These moments can, if handled correctly and thoughtfully, leave an impression that can hang around for a long time. Sometimes they are major, life changing events but in my experience, often they are not. Just a word or a gesture or something that makes you think differently can frequently leave the longest impression.

So if I follow up that rather dramatic opening by sharing the words “Andrew Marr” with you it will completely throw anyone still with me after the opening paragraph. But Andrew Marr is very much the person responsible for a recent moment in my life.

I think I should explain.

We watched a documentary about him on the BBC recently. For anyone unaware, Andrew is a political presenter and correspondent and a reasonably well known figure in the UK. But quite old school, mainstream and, well, a little uninspiring if I am being honest. So it was with great surprise that we very quickly got immersed by this documentary about his health issues over the last year or two.

The story covered his stroke. It explained what had happened, how it was probably not that unexpected to those closest to him, and what he did, and continues to do, to improve his health and travel his road to recovery. But the most significant part of the story was that we actually got to see what he was really like behind his public persona and it was this, his personality and drive, which was the most remarkable thing.

He was the epitome of “living for the moment”. His drive was incredible. He wrote newspaper articles and books, presented on both television and radio, travelled, drew and painted, had time for his family, was an exercise freak and probably cooked, cut the grass and washed the car every Sunday as well. His life was full to overflowing and it was clear that he loved everything that he did and was always looking to do more.

It was also made clear that this drive had contributed significantly to his health issues. But the main message that both of us got was that he lived his life to the full and relished everything that he did. At one point he stated to the camera that he had no time for self pity and that this was the ultimate waste of time in his view. We both picked up on that point.

He was, simply put, an inspiration and a completely unexpected one at that. And he was happy living his life in his own way and doing his best to fill it with meaning.

I guess an indication of what kind of impact something has had on an individual is what they do with the new information and the changes they make as a result. I found myself doing things differently the very next day. I actually found more of a spring in my step and a more positive way of dealing with those everyday obstacles that come along. I picked up tasks quickly and the normal procrastination was gone. I even felt happier.

It's not quite the aspirational banishment of self pity that it could have been but it's a pretty good way to react to a television documentary however you want to look at it.

Photo from BBC News website

Good Intentions

Such a sad news story appeared in the UK press this weekend. A married couple from Liverpool, aged 57 and 50, both died from cancer within days of each other last week. They left three children, between the ages of 13 and 21, but it was their last photograph of their parents, holding hands in a hospice days before their deaths, that was so heartbreaking. How does anyone young cope with the loss of one parent, let alone both, especially when all three kids are still coming to terms with so many of their own life issues?

There are positives however. As of this morning over £120,000 had been raised on line for the children through the generosity of complete strangers from across the world. This will go towards providing them with a place to live and support through college and university. It's truly an inspirational thing for everyone involved and the power of people should never be underestimated.

Sadly, it will never be able to replace their parents.

It is impossible to read about such a sad situation and not let it effect you. We both read about it separately and, whilst I was cautious about raising the subject, we both had the same response. We were sad and felt for the family, but wanted to talk about what was happening and how it could relate to us. I think that there are benefits to reading stories like this when you or someone close to you is suffering with the disease, even if it may not feel like it. I guess it highlights that there are always other worse off than you are, no matter what you may be going through at the time. A little balance is never a bad thing. But perhaps more importantly, it raises the subject without it being personal, and allows for discussion without a lot of the emotion that often seems to accompany such conversations when they originate with your suffering.

Much like the funeral a couple of weeks ago, it would appear that its good to talk as long as you start it the right way.

We also talked this morning about donating to the fund and I suspect there have been thousands of similar conversations all across the world today. I hope that as many as possible follow through on their good intentions.  

The Giant's House

I finished a wonderful book today, “The Giant's House” by Elizabeth McCracken. Very difficult to define, it is essentially a love story that is quirky and peculiar enough to appeal to someone that really doesn't like to think of themselves as an old romantic, but probably is. Without giving too much away, there were some exquisitely written scenes around one persons selfless devotion to their unlikely partner as they gradually became less capable of looking after themselves. It shows how a life can become completely consumed by the search for happiness for another person and it both fascinated and completely horrified me in equal measures. There is no doubt that the pain of denying oneself happiness and joy in the name of finding it for someone else could be seriously attractive and addictive to a certain kind of personality.

It made me wonder how easy it would be for me to find myself in a place like this. And showed me how focussed I need to be to ensure that my own happiness is not neglected.

But I loved the notes on the back cover which I share here simply because I want to be able to read them again and again.

“The Giant's House is a strange, beautifully written and unforgettably tender novel about learning to welcome the unexpected miracle, and about the strength of choosing to love in a world that gives no promises, and no guarantees.”

Read the book and love it.