Diplomat

 Am I a Diplomat?  I am certainly a lot less confrontational than I used to be, and will let things go if ther is no point in the argument.

I just did an on-line personality quiz which told me I am a diplomat! 

Isort of think there is some truth in this.  I am surprised how often I have been told that I motivate or inspire people.  I hope it is true, anyway!  

You may or may not like people, but people like you. You are a natural born leader, whether you think it or not. Ask your friends and you will see. People greatly value your opinion, and often come to you for help. You can be inspirational without even trying, often motivating others to better themselves simply by being who you are.

New pages

The brother of a friend of mine wrote this -  it sums up a lot of my attitudes, so with their permission I have "stolen" it:


I’ve just been reminded that, while in our heads we are halfway through the book of our lives with many blank pages yet to be filled, we are Infact, every day, on the last page.
No further pages exist for tomorrow, only plans and hopes for a continued story.
We have no idea if our book will be thick or thin, only that as each day passes, another page is added.
If we live for the things we want, the houses, the cars, the holidays, then we spend all our time living for a story yet to be written on pages that don’t exist.
If we live every day for what we love and believe, every page is filled with our efforts.
Every page is rich.
A thick book doesn’t mean a better story or a thinner book a story unfinished. The quality of the story is determined by the spiritual quality of our life; in love; in effort; in making the most of what we have on the pages we write today.
And at the end of the day, thanking God for the pages we’ve had and acknowledging that it’s his power, not ours that will give us another day and another page tomorrow.

--------------------

Many thanks to Rachel Bown and David Thomas

New Year

Facebook is filled with sappys stuff, especially at Christmas and the New Year, but I realy liked this one

I have decided to do this in a little diary that a friend gave me for Christmas.

I will reflect each day on the pleasures the day has offered which will give me a good mental exercise at the end of each day.

Then as the year goes on I can dip back into it and remind myself of the richness and joy my daily life offers ... Neat idea innit
x

letter for lisa RIP

Hello.  I was sad to read you are confined to bed.  Things might even have changed since then.

I have recently read (the anti-cancer guru) Dr Shervan-Schreiber's book about the last stages of his life.  It is called the Not the Last Goodbye .. and he reflects on this business of saying goodbye to people and knowing each time that it might be the last one.

And for as long as possible it may NOT the last one, but we can sometimes say goodbye as though it IS the last one, just to make sure we say the things we need to say. We never know when the really last one will be, and that is fine ...  it is fine just  to keep saying our last goodbyes .. 

I hope this is not our last goodbye, Lisa, but just in case it turns out that way, I am coming into a private space to tell you that I will miss you.  I have valued your inter-net friendship and enjoyed your writing very much. Thank-you. 

Your voice comes across clear and spirited, always so full of wit and wisdom.  You model a way of living with cancer that  motivates and inspires many of us, and I am grateful to you for that. Your blog will go on after you and continue to do that for strangers you will never know.

I only know of your personal life that which you choose to write about, and it is a fascinating read, for sure.  I am especially glad when I read of you making your peace with people and being so proud of your kids, because that must bring peace to your heart.

I hope you pass away with peace in your heart.  You are so young it must be very hard to let go of the anger ... very hard indeed.  

There is a deep sadness  (that you know yourself ) when people on the same cancer train are taken by it.  You and I started out on this at about the same time and it is so unfathomable how it can go differently for a while.  I am doing pretty good just now,  but the damned thing is there and waiting for us both .. It is so  much  closer to you now, and that  chills me and angers me, but I will not lay that out for you in detail, there is no point now.  Reading your experiences will certainly help me when my turn comes.

All I can say is that I have struggled to find the words for this, and I hope I have not offended you in some way ..  it is  hard to know what might seem wrong in these uncharted waters .. it is all well-meant, though, and I wanted you to know that I will miss you and grieve for you. 

With deep regard and kindest thought, Lisa. 

From Susan xxxxx

Peaceful Thoughts

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

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.

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

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.

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! 

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! 

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 ...     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

death, dying, terminal

death, dying, terminal
For some reason these words have invaded my brian and consciousness, the daily vocaublary of the fears and future. I'm pretty matter of fact on them ... mostly, but today has been a thoughtful one.

Q: Things you'll miss, suze, are they not bothering you a bit?
Strangely not, and certainly not in the way a fellow traveller told me she was distraught at the thought of missing land-marks as her kids grow up. I don't have kids to miss, for a start. Tho I do feel sad that the nephews will miss their aunty and I will probably never know what great feats they will achieve, unless they get off to a very brisk start! I do allow myself to get sad for leaving them from time to time.

There must be something you'll miss most? Really, yeah I guess there is ... I can't imagine not being here to comfort B shen she is upset ... who can do that job for me? Who will be here when she is rattling round this familiar territory that we crafted between us? I fear that my very absence will be tangible to her .... and she will be sad, daily stumbling over sprinkled detritus of my daily pulse in our home and all that we've accumulated and shared here.

I hope the memories and layers here can make her happy in rememberance of how lucky we've been, and not cast her ever downwards ....

I fear I would be very cast downwards if it were me left behind ..... I'm sorry missis, so sorry to be leaving you .... I would never imagine leaving you any other way than this one, one I cannot choose to avoid .....

Late

Late home, one night, I found

she was not yet home herself.

So I got into bed and waited

under my blanket mound,

until I heard her come in

and hurry upstairs.

My back was to the door.

Without turning round,

I greeted her, but my voice

made only a hollow, parched-throated

k-, k-, k- sound,

which I could not convert into words

and which, anyway, lacked

the force to carry.

Nonplussed, but not distraught,

I listened to her undress,

then sidle along the far side

of our bed and lift the covers.

Of course, I’d forgotten she’d died.

Adjusting my arm for the usual

cuddle and caress,

I felt mattress and bedboards

welcome her weight

as she rolled and settled towards me,

but, before I caught her,

it was already too late

and she’d wisped clean away.

------------------------------------------


I've saved this poem here because Brigid told me she had head it on Radio 4 this week.

The poet turns out the be a man, Christopher Reid, who lost his wife to brain cancer and subsequently wrote this collection of poems about the experience. This article in The Telegraph can tell you more.

For me, this poem makes tears stream down my face . . . it says so much about loss to me, about how the familiar sounds and movements of everyday life seem to turn traitor in death.

Anyone who has had a loving partner and a close relationship in life will know the fear that one day or other one of you is going to be left bereft by loss, by that resounding empty, silent space where your lover used to live.

-------------------------------

On Friday, when B was telling me about this poem and hearing it on the Radio on her way to work I felt chilled and tearful myself, and asked her if it had made her cry. She said no, no it hadn't made her cry. For some reason it had had an opposite effect, it had made her feel reminded of how common it is. How common it is to be left bereaved. She seemed to take some comfort in that.

I hope she continues to be so strong.

It is common. Death, loss, bereavment, common and entirely natural and a part of the deal we get when we get a life to live.

But, for me, I still think being left is worse than dying.

snowy

tapestry

a peaceful occupation

my last one:

cycling

Cycling along yesterday and I was reminded what a privilege it is to be here, now.

It is the tail end of Autumn and it's easy to feel gloomy in these short grey days, but today, even though the sun was watery and the trees were bare ... the sky was bright and the branches make interesting shapes against it ...

I live in the city but ridiculously close to fields full of wildlife and ponies; air by the canal is clear and sweet.

Blessings.

pull it back on

So, yes, it was NOT good news from the scans in October.

Yes, we do need all our resolve again.

And yes, I will be resolved and not lose sight of the amazing privilege it is to have my life regardless of illness ..

I am well provided for in financial and emotional ways and really couldn't ask for more.


What will be will be ... .... ....

gosh

It is over a year since I wrote in here, which isn't to say I've not been continuing my efforts -- just not recorded them.


Just now I am feeling very scared and shakey. CT scan results due tomorrow and my tried and tested coping strategies seem to have left the building.

If it is bad news I will have to pull them back in and put them to use. Meanwhile I have been trying to stay calm.

Breathing.

A great thing!

Satsang

I have started to go back to my satsang on Tuesdays.

Satsang: (Sanskrit: sat = true, sanga = company) sitting in the company of truth. A traditional activity in the Indian spiritual context, meaning "being with good/righteous companions." Satsang is a sitting together with an enlightened person who usually gives a short speech and then answers questions.

Any strength that I've shown through the last two years is directly linked to joining a satsang, at Anandi Anant, which B and I first started to do about 7 years ago. It felt amazing to be back there with some of the same people who have been gathering at Anadi's each week for this privilege for many years.

I hope to post some of the ideas from there in here over the coming weeks.

I love that fact that, with any sort of spiritual lesson or experience. wherever you are in your own life you can take some lesson which seems to suit you, or fit your current situation. All the other people in a satsang might take away some slightly different experience, based on their previous knowledge and their current life. We all can feel touched or inspired by our teacher and her words, but it will be slightly different for all of us.

For me, this week, Anadi's talk seemed to be mostly about going to work. It was about lots of other things too, but this was the element which most connected to me, for where I am now.

Anadi had a quotation on the board from Swami Vivekananda (to be fair she said it wasn't an exact quotation, but the gist of one which I think I only roughly copied) is was along these lines:

• "Our immediate work, the work at hand, if we complete it well: it increases and slowly raises our own capacity. We can be fortunate enough to get opportunities to do the most prestigious work for society and life itself."

Anadi developed this idea to say we can all increase our capacity to work, and to make good contribution to our society by doing what we do to the best of our ability. Rather like athletes who train hard to achieve more, we can do that with our own work. I also warmed to the idea that working to the best of my ability is pretigious work. This is true whatever sort of work you do.

Anadi also talked about how to deal with criticism at work, which is a big theme for teachers who often resent lesson observations and results reviews at this time of the year. She advised: "When you are criticised try to think how you can improve, how you can GAIN from the criticism." She went on to say, "Be careful not to claim that you have 'done your best' when you know you haven't really." I really recognised myself when she said "Criticism often rankles most when you feel it is justified." I know that I do this about comments in lesson observations, and I am going to try to give this up! I think it will be very positive to be more relaxed about reviews and critques and to use them creatively, as they are meant to be used, not as a reason to retreat into self-justification and excuses.

I was talking this over with Brigid later, and we usually do after a satsang and she added an anecdote that her Headteacher had used in a staff meeting at the start of term. He has been impressed with the success of both his own school and the British cycling team at the Olympics and had done some reading around about the team. Apparently the GB cycling team was offered a certain amount of cash to support 40-odd riders and they went back to the funding body and said: Thanks, we'll take the dosh, but use if for 20-odd riders cos we only want to work with people who have real medal potential, not with ppl who are going to come 4th to 8th."

Well that sounds very harsh, but it seems that they were basing this in research about the mental outlook of ppl who place 4th to 8th in a range of sports. When asked why they didn't achieve in the top three these people are far more likely to blame external factors and other issues rather than accept responsibility for their own performance.

This obviously paid off for the GB cycling team in the Olympics. They also used a psychologist as a big part of their training regime. It obviously meant that the cyclists were constantly in the presence of other riders who take repsonsibility for achieveing their own best, and don't hide behind other factors if they don't reach it and work on their mental strength as well as their physical strength.

Anyrate, I've gone far from the original satsang, but this is what I have learnt this week.

• I hope it helps