Thursday, September 06, 2012

Two little thoughts


HEALTH
We are re-learning and scientifically documenting what ancient peoples have known all along: that mind and body are inseparable, that to move health forward we must unify the fragments; how we nourish ourselves, how we relate to others, our personal perceptions and the manner in which we live on a daily basis. From this unification we can achieve “hale”— the Germanic root word for health derived from whole.
Verne Verona, an anti-cancer proponent.



PERCEPTION
“The real voyage of discovery consists not in seeking new landscapes, but, in having new eyes.”
Proust

Tuesday, July 17, 2012

Live in the present

The Dalai Lama, when asked what surprised him most about humanity, replied:


 "Man. Because he sacrifices his health in order to make money. 
Then he sacrifices money to recuperate his health. 
And then he is so anxious about the future that he does not enjoy the present.


The result being that he does not live in the present or the future. He lives as if he is never going to die, and then dies having never really lived."


Pause for thought, people.

Wednesday, April 25, 2012

Happiness

The spiritual thoughts in my diary for April are concerned with happiness.
I am a great believer in being in control of your own happiness and I find these words very motivating and encouraging:

You have the power to hurt yourself or to benefit yourself. If you do not choose to be happy no one can make you happy. Do not blame God for that! And if you choose to be happy, no one else can make you unhappy. It is we who make of life what it is.

I find this really helpful if I am annoyed with someone, say like my bullying next-door neighbour. He behaved very badly and he upset me but I cannot make him be “nice” to me, he is outside of my control. The only thing I can control is how I feel about it. So I try to take control of my thoughts about what happened and send the angry/bitter thoughts packing when I get upset. There is no point in it. His behaviour upset me once; there is no point in allowing myself to be repeatedly upset on account of the same thing. I must choose to laugh about it and put the distress out of my head to save myself any further pain about it.

This might seem like a small example, but I find small examples sometimes pester my head more than big ones, and in any case it is the same method for both large and small upsets in life. What good does it do me to re-live the original pain? I might as well choose to be happy, make of my life what it is.

Another thought on the same theme:

A strong determination to be happy will help you. Do not wait for circumstances to change, thinking falsely that in them lies the trouble. Do not make unhappiness a chronic habit thereby affecting yourself and your associates.

It is a blessedness to yourself and others if you are happy. If you possess happiness you possess everything. To be happy is to be in tune with God. That power to be happy comes through meditation.


Source: Spiritual Diary, Parmahansa Yogananda




Monday, April 16, 2012

Anger

Dalai Lama - thought for the day ...



The first drawback of anger is that it destroys your inner peace; the second is that it distorts your view of reality. If you think about this and come to understand that anger is really unhelpful, that it is only destructive, you can begin to distance yourself from anger.

I have been much less prone to anger in the last few years .. but I am still struggling with other niggling nasty aspects of my personality. 

 I am trying really hard to give up the cynical grumpy voices that bother my calm  ...

God help me .... that's a prayer.

Saturday, February 04, 2012

Five Regrets ....


There has been a lot of stuff in the press this last few weeks about a book written by Palliative Care Nurse about what dying people have told her  about the regrets in their lives:


http://m.guardian.co.uk/lifeandstyle/2012/feb/01/top-five-regrets-of-the-dying?cat=lifeandstyle&type=article


1. I wish I'd lived my life true to myself, not the life others expected of me .. 
I DID try to live the life others expected of my when I got married to a man at 20 .. but giving that up and living openly as a lesbian and never being in the closet, even at work in a 6th form college, means I have felt very true to myself for the last 20 years at least! 


 I also feel quite happy about that.  It was not an easy decision twenty years ago but I think it helped a lot of young people to  know they had an  "openly" gay teacher back then, or even now .. the closet is still a cosier place for many gay teachers .. and don't even think about gay footballers.


2. I wish I hadn't worked so hard.
I have always worked hard, but I don't regret it. I was lucky to have a job I enjoyed, working with and helping young people. I was able to express my creative side through my job, as a teacher, too.  This makes work more satisfying, I think. 


At times it was unbalanced, but mostly I got a lot our of it and I don't think I missed out on other aspects of life, perhaps it would feel different if we'd had kids of our own instead of looking after other people's! 


3. I wish I'd had the courage to express my feelings.
Erm, do you ever read anything I write? Maybe the opposite of this is a problem sometimes but I certainly can, and do, express my feelings.


4.  I wish I had stayed in touch with my friends.
I am stil in touch with many good friends including from school and uni ... 
Maybe not having children gives you time to do this, if you lost touch with your friends then you must look more to your family? 


5.I wish that I had let myself be happier.
I am lucky enough to have a partner who makes being happy the default position, and lovely family and  friends who make me laugh a lot ... 

Maybe I am unusual, but maybe this is why I am not afraid of dying, it has been a great life and I do not have big regrets. Even things I would rather have done differently are still  the things I have done.  I must (and do)  accept them because they cannot be undone.

 I think it is better to accept how my life is / turned out and not regret anything  ... I am quite DOWN on regret as a train of thought, actually! 


Monday, January 30, 2012

Joe's Question



This post was first done in my main blog, in April 2007 when Joe was only 9 years old. 
Mulling over some with fellow cancer folk made me thing it should be here, in the take heart, so here it is again

What’s the worst thing about having cancer?
This was the question Joe struggled to frame for me as we sat in his caravan this Easter. I wonder if this is a fresh thought for him or whether he has been pondering it for a while. Joe’s sense of empathy is amazingly well developed for a little lad, indeed it always has been, so this question is by no means unusual. These things interest him.

It’s a bit of a flanker as questions go. He made me think and I had to think quickly. In the first instance I’m thinking of an answer that will work for a nine year old and what I come up with is plausible. I tell him that the worst thing was having the operation, having a big hole cut in me that was sore for a long time. This answer works well; it’s concrete, physical and easy for them to relate to. We can quickly move onto other topics.

But it’s not that easily answered a question and it has hovered in my head since. This writing has emerged from Joe’s question and I am reflecting now on the “worst things” about cancer.

I guess everyone has their own idea of what the worst thing is about having cancer, what it would be for THEM if they were faced with it. What are your ideas on this?

I think your answer must depend on the type of cancer you get and the circumstances of your life. Most of the people with bowel cancer whom I’ve met on the IA forum are a lot younger than me, which seems harder immediately. One is a single parent with toddlers, and to my mind, nothing I’ve gone through, or will have to face, can compare to that reality. She has had to continue working through her chemotherapy treatment and keep going with her daily routine with her kids against that inescapable background that her children might be left motherless soon. I doubt that there could be much “worse” than that.

But enough about other people! What about ME? What are the worst things about having cancer from my point of view? I’ve been thinking.

The first revision that I did was one I shared with Joe later the same day. I changed my answer from the operation to “Not being able to play properly with you”. I’ve always played with them in a roughty-toughty way. I have rolled around on the floor with them, chased them about the house and thrown them in the air. In particular we’ve invented our own game called “Swing Café” whereby I role-play a temperamental maitre de and they are clients in my “Café”. We have different types of “push” on the menu which they can choose when they are sitting on their swing.

OK!
It doesn’t sound much, but it is to us; we play it for ages whenever we get together. They might have even out-grown it this year anyway, but Joe knew what I meant by playing properly, “Yeah,” he agrees, “Like Swing Café.”
“Yeah, that’s right Joe, like that.”
And the way that even a simple, sedentary game like guessing which hand I’ve got a coin in has been booby-trapped by chemo-sore veins and their having to treat me like a glass figurine instead of bashing me about the way they usually do. 

I’m not a natural for the glass figurine job.

Later that day Julie and I were mulling over Joe’s question together. Julie put forward the idea that having your future snatched away from you might be the worst thing. I’m strangely casual about this. I just don’t engage with that idea. Maybe things have got to get much worse before that strikes me as a real thing. I also mostly manage not to be afraid of my own death. I dunno if I can keep this up if things get worse, but NOW I’m cool with it, and only very occasionally get a wave of fear about that (and about things getting worse, pain-wise.)

What CAN upset me on this theme is the thought of other people who really love me being without me…if this cancer carts me off, there will be such gaps for my friends and family. Brigid will be bereft, as I would be if she left me. This thought has the power to chill. Right from the start I’ve been most likely to weep at this, for both Brigid and my nephews. These are the people whom I would most like to protect from “missing me”. It’s a hidden “worst thing” - that realisation that we cannot do everything for the ones we love and some things are far outside of our control.

Losing their aunty is something I don’t want my nephews to experience. Toby and Joe are very good at treating me like a glass figurine; they control their natural bounce very well around me so I feel I’m already watching them from another place. I have sat on the promenade watching them on the beach, play trust games with their dad, wishing that I could stand behind them too and let them drop back into my arms, safe in the knowledge that I’ll always be there.

Ack – you see, none of us know that, do we?

So what’s the point of dwelling on it, any of us?

Rather prefer to think that I’ve seen more of Luke, Toby and Joe in the past eight months than I’d usually see them in two years. Seeing more of EVERYONE has been one of the best things about cancer. Taking time to really enjoy simple pleasures and to do that “living in the now” thing has been an unexpected benefit of being ill.

I’m extremely lucky enough to have the money and the support to be really quite comfortable in my “illness”.

I’m living at a slower speed these days, shrugging off the madness of the pace of modern life. I’ve long thought that the race we usually live in is so far from “civilised” as it is possible to be. How can it be the height of modern progress that people are at work for longer and longer hours and more and more stressed and even unhappy if current news stories are to be believed? Is this all our 21st Century progress has brought us to?

I’m enjoying the opportunity to duck out of all that. To be slow and relaxed and spend time with people who love me.

Here’s a tip:
Don’t wait till you have cancer to review how you spend your time and consider your priorities! 


Friday, January 20, 2012

Partnerships

Someone asked me this week what it is like for my partner in all of this.  I typed out a long response to her, and thought it might be worth saving as a blog post .. so here is it, more or less:


This is the most recent photo of us together -- Jan 2012 just delighted to be out and about, together, in our own back-yard with the last operation receding into the past ... this was at The Roaches --  a week after my lung surgery:


B and I have been together for nearly 20 years now .. we had our civil partnership in Easter 2006, which is now almost 6 years go ...  :o   It is slightly weird to look at these pictures of great happiness on the wedding day and realise that the tumour was already there: 


Our honeymoon in USA was when I first noticed symptoms that were a result of cancer, though it was not diagnosed until September that year .. initially I put them down to the journey / wedding stress etc etc ... What this teaches us is that we were happy befoer we realised the tumour was there, and we need to keep hold of that even though we know there is cancer inside.  Cancer inside, per se, doesn't stop us living our lives.  

I think it is ALL  very hard for her .. in many ways I really think that this is harder for her than it is for me  ... advanced bowel cancer  is not a condition people are expected to get better from.  It is a death sentence ... I have already reached the 5 year point which is reached by only a tiny percentage of ppl with advanced bowel cancer ...  although new statistics suggest that a few of us might get upto  ten years with repeated treatments ..  in a way there is always that sense of getting our life doled out to us in 6 month chunks between the all-revealling scans!   We both know in the back of our minds that at some point she will be bereaved and that she will find that very hard ... I would rather be the one going than the one left .. yes, for sure ..

We deal with this by accepting that this is true for everyone, even if you live to be 90-odd there will always be death, and you cannot spend all your alive time worrying about that. Just because we now sense our ending is closer than for other people of our age, it is only the same as every other mortal being .. no-one ever lasts for ever ... you are only realy certain of the moment you are in .. no-one really knows their future, despite everyone assuming that they DO!

Brigid and I both said, 20 years ago, and on other occasions since, that we would only stay together if that was right for each of us .. that there was no point in staying in a relationship if it lost its magic and its purpose  .. each day we stay together because we choose to stay together  .. it is always a  fresh commitment never a stale old habit.  We both still think this way  ...
Sometimes I wonder, and ask her, why she chooses to stay .. it seems to me like I am very hard to be with sometimes.  Anyone who knows me in real life knows what a sharp / gruff /chip-off-the-old-TOFT-block / bugger I can be, especially when I am in pain my temper gets very short. During treatments my life can close down to a very narrow circumference too.  So far it has been the treatments rather than the cancer that has altered out lives.  I would happily set her free, or accept other ways of living if she wanted to change it, but so far she has not.



If anything she has become more devoted and more aware of relishing the times we have and the things we do together ..  for instance, we set the goal of getting up Ventoux together which was amazing. We did not know it but a few weeks after this happy-snap in August 2009  I would be back in surgery for another major bowel operation, looking back we realise that  I did this fabulous climb with a large tumour on my gut and two other small ones on my lungs:




This photo was around  Christmas 2011, about two weeks before my lung operation:


In some ways illness can do that for some people. It can enhance your enjoyment of what you have.  It has done that for us two ..  partly because we are  influenced by Indian / yogic philosophy about life which  helps us to deal with things most of the time  ...  we aim to live in the present and do not harbour grudges for the past or fears for the future ... MOST of the time, it is not something we pull off 100% of the time!

Brigid is a good nurse, she likes to look after me, it seems.  But an important counter-balance to that is that she also gets looked after herself.  One of our friends has taken on specifically the role of taking her out (without me!)  and being her sounding board and putting Brigid  first for the whole duration.  This is a very special gift for a friend to give, to realise the need and to meet it on-demand! Other friends and people at her work also help to care for her.  My parents helped us to buy our caravan near Brigid's school so that she can spend less time commuting when we stay there in the week explicitly to try and make things better for her.  My parents really appreciate the toll it takes on Brigid, to be looking after me, especially when I am in treatment.



So it is a partnership of us two, but also the wider community of people, lovely family and friends,  who look after us both.  If you are part of that, then be sure that it is appreciated.  


Thank-you