Winter in Austalia brings Cancer blues

SAD stands for Seasonal Affective Disorder. I almost wrote 'Season Affective Depression' Does that show where my mind is at today? Well, not today, but certainly earlier this week. As the days of winter draw in and there's less sunlight many people are seriously affected by this; their mood drops.

I certainly like lots of light in my space, but it's not this that 'does me in'.Having long term experience of clinical depression has taught me many valuable lessons. One is that I only drop down into a depressive state when first my body is struggling. And I've met many people who say the same. Can't help wondering if those who claim to help people with depression understand this. Perhaps at the time we've been in their office we haven't yet come to this realization.

For those who have, it's valuable news. I keep tabs on what's happening in my body now - not obsessively, just aware that if I find myself wanting to move away from my usual round of activities that's a sign. It's as if I am moving forward and can see a precipice in the distance. So instead of keeping on in that direction I know how to back off. For me, a day or two in bed may even be indicated. I don't want to  fall off that precipice, remembering too well when, without choice, I slipped so far that I didn't believe I'd ever feel any better.

It's absolutely wonderful that now I know this isn't true for me any more. When I feel the first slip on the path I remind myself that, even if I back off for a while, after some R & R (rest and relaxation) I will feel brighter again.

If you are one who feels creeping up on you an active 'backing off' from things that usually aren't a bother; if for example you start feeling yourself shrinking away when the phone or doorbell rings, you'll already recognize that as one of the telltale signs.

If on the other hand, you don't know what I'm talking about but have someone close to you - or not so close - who acts this way, do something nice for them. Show them you care. Take some of the weight off their shoulders - offer some help for one of the tasks that is making them feel overwhelmed.

One of the ways in which my multiple illnesses, including of course the long term effects of Stage 3 cancer, are having a helpful effect on my life, is that I have given up trying to work 24/7. So, working when I can get the work; not doing those things I hate; recognizing people who are drawing strength away from me; gives me permission (and understanding from those who know of my health challenges) to take a day or two out when I need that.

For those of you who are still able to work - lucky you - there's still a way to lighten your load. Look for the signs that are specifically yours. When you observe the precipice approaching, make a conscious decision to e.g. put your feet up after dinner; crib another 10 minutes in bed in the morning; ASK someone who loves you to do something they normally expect you to do (perhaps they need a reminder that you are not superman/woman); find a quiet place to rest at lunchtime instead of talking to your workmates / shopping / making that phone call to the company you owe money to.

You've probably never had anyone to give you permission to do this before - and possibly didn't know how even a short break is rejuvenating. Now you do. Go get it.

And if you have, or have had cancer, remember, the world can survive without you pushing yourself for a while - but if you push yourself right into the arms of death, this dear (sometimes painful) world of ours will truly be depleted by your absence. Take your welfare into your own hands. Refuse to push yourself so hard that you write a worse future for those you love. Rest!

Best love
Beryl

Jill - A Requiem

JILL - A REQUIEM

(written 7th April 2010)

Tuesday.

Yesterday my friend died.

She wasn't beautiful - except inwardly. But she wasn't 'fat and ugly' as she termed herself in one of our very recent telephone conversations. Actually, she was what my grandfather would have called 'a fine figure of a woman'. In the past, people appreciated that very thin can mean you're coming down with some fatal disease and not likely to live long enough to bring up your children. Yet in 1999, she was able to denigrate herself because of a few kilos.

She was neither very tall nor very short - but she was shorter than she'd been when we first met. The osteoporosis had seen to that. And her several other illnesses were seeing to her being brought down in other ways.

This wasn't Jill's first tough time. When she shared the limelight with me on the Midday Show with Ray Martin on Channel 9 TV it was to show the world at large what can be done to move forward after you've been struck by divorce.

She'd done it tough much of her life. But she'd always kept on keeping on. For years she helped other people move forward after their divorces and widowhood, as the facilitator of a couple of singles social groups.

And she had brought up her two boys. Fine young men now. It was one of them who phoned me with the sad news - as I was driving along North Rd Brighton in fairly heavy traffic (isn't it always, on that road?).

I'm a very careful driver. I want to live as long as possible, now I'm old enough to understand how to get the full measure of living out of every day, every moment. So I pulled to the side of the road before answering my mobile phone.

Sitting at the side of the road with your car still idling, your foot still on the brake, the constant muted roar of hundreds of cars going by, isn't the ideal setting for hearing 'I'm sorry to tell you that my mother died yesterday'.

Wise of them to allow themselves some time to let the grief and loss wash over them before they felt it necessary to start phoning around. That's the right and proper thing to do. The grief of others can never possibly begin to parallel theirs.

Yet it is slightly strange, in this era of instant communication to know a friend has been gone for twenty four or thirty six hours while you went about your own business, not knowing there was a gaping yawning hole where this person had previously resided in your world. My gosh, we all knew Princess Di was dead sooner than that!

I continued the drive to where I was expected, apologizing for being late and asked Bill for a hug, as I explained the reason. Bill works for an organisation that helps others and I know he's experienced many griefs of his own. He is for me, part of what I would perhaps call a 'circle of hearts'. People I know who understand the difficulties we run into in this tough old life. People who'll just hear what you say, without any false histrionics. 'Your friend has died. You just heard about it, coming here? Do you want to sit down and have a coffee and take a breather? Or do you want to get down to business?'

I was grateful for the choice. 'Let's get into it' and we did. His caring matter of factness gave me the option to also 'fall over' when I was ready for it - when the business was done and I needed to sit down and allow myself to move along with the feelings I was experiencing. 'Every five minutes or so a wave of nausea is washing over me Bill'.

It's so strange sitting at a table, drinking a healing beverage, while other people walk in, say hello, pass a neutral comment, not knowing. And you smile and respond to them, suspending your conversation about death and your only truly conscious thought 'My friend is dead. And I only saw her, spent time with her, laughed, read a poem about death, exactly one week ago'!

I'd taken her my poem because her death was to be no surprise to us. She knew she was going. She'd been told not to expect to see Christmas although she was only 54.

Yet so very soon? I'd thought she had at least another two or three weeks; another two or three phone conversations; another week or two to get used to the idea.

I knew she was doing it tough, breathing had become something of a luxury. And she wasn't the type of person to enjoy being pushed around in a wheelchair. When she'd always been her own 'prime mover'.

On Thursday I will go to her funeral. I expect there to be a very large turn out. Jill was a person who lived her life to the full. 'Am I?' she queried, when I put this to her just last week, sitting by her bed. Then only minutes later her great big wonderful full bodied laugh was rolling out, filling with joy the bedroom she was now confined to. How could she not know, not remember? I do hope that my reminding her - 'Yes, I suppose I did' she'd finally said 'When you put it that way' - gave her at least a little joy, put her back in touch with at least a little of the reality of her previous years when that was true.

To me, even on that day she was living her life very fully. Because she was still making her own decisions, deciding not to fight this last battle as if life on this earth is all there is.
She promised to put a flower in the fly wire screen of my front door, if she can, afterwards, 'Just to prove I'm still out there.' We both laughed heartily at her naming of the 'great frustration'. 'That would be the very worst thing to me' she claimed 'if I could see you all, but wasn't allowed to touch'.

I'm waiting for that flower Jill. I'm waiting. Don't you let me down.

10 tips on what to say/what not to say to someone with cancer

One of the greatest difficulties for people with cancer, or any other major illness, is the constant question of: How are you? -- Do they really want to know or is this just the kneejerk question they've been trained to ask since they were young? Have you considered that every time you ask this question the person who may have been using a lot of energy ignoring their pains and other difficulties has to now think about them? What's wrong with just 'Hello'? Or 'good to see you'?

And when a doctor asks this, isn't that a really stupid question? Would you be there if you were well? Doctors often claim that they don't have time to listen to what their patient needs to tell them, but this has just wasted time. You answer 'Fine thanks' because that's what you've been trained to say. You know it's not true. They know it's not true. So then, after all this, you both have to back track to what you're really there about.

How can you address this? I've been known to say 'Next question'. And if they object to that, that has to be their problem. I'm just trying to protect myself.

And for all you well meaning people who aren't health professionals, here are:


10 TIPS TO HELP PEOPLE WHEN THEY ARE COPING WITH CANCER


1. Don’t ask them ‘How are you?’ How would they be????


2. Do say ‘I’m concerned to know you’re having to go through this terrible experience’


3. Don’t say ‘Let me know if there’s anything I can do for you’. They’re really too tired to have to initiate anything. And they’re not going to feel free to call on you for some undefined benefit.

They need you to make specific offers that they don’t have to think up.


4. Do say ‘I’d like to do something for you, while you’re going through this difficult time. I could do 1 or 2 or 3 ----------- Take your pick’. Then, if they acknowledge a particular thing or things you could do to help, really surprise and please them by adding ‘How often would you like me to do this for you?’


4a. If the answer’s ‘nothing’ at that moment, don’t insist. Just tell them, before you go ‘The offer is on the table. Ask me for anything, any time.’ and you might hand them something with your phone number on it too. They need everything made really easy for them – and don’t want to expend the energy to look up your phone number.


5. Don’t place your expectations, or fears, on them :
e.g. ‘Of course, you’ll be all right’
or ‘You’ll live’.

Please don’t say that. That’s not the truth as they are experiencing it.

And - You don’t know. They don’t know. Even their doctors don’t know.
Such statements make them feel you are trying to tell them what they must do to make you feel less threatened. And that’s such an affront, at the very time they feel least able to stand up for themselves.

6. And PLEASE don’t tell them (me) about your aunt/friend/relative or a friend who had cancer. That has nothing to do with them. And all too often these conversations end up with the story-teller finishing with a story about how that person, or someone else died from cancer. OUCH!

Focus on THEM, not on your own frailty. You need to look after your own needs somewhere else. If you must talk to someone regarding your feelings about the threat of cancer, talk to a counselor. Don’t go to the person fighting for their life in the hope that venting to them will make you feel better.[Yes, I know that's not what you consciously meant to do, but that is an underlying cause often not recognized by the person doing it.]

7. A person threatened with death often has a lot of people around them who are so frightened of what this diagnosis means for them – that the ill person may find themselves counseling and generally psychologically supporting others.

We’d all hate to think that any of our actions or words may actually be making life harder for our friend or family member when they are facing the possibility of losing their life.

I know people do this because they don’t know any better. So that’s why I give people ideas for how to do it better, so the ill person can have the space to allow grieving and healing in themselves. And Yes, I have ‘been there’, so I do know of which I speak.

The two most important words you can use to anyone going through cancer, or any other trauma is ‘Tell me’.

That gives them permission to talk to you about what they are feeling and thinking; creates a supportive environment where they feel free to speak of their fears and hopes and wishes. And you may be the only person making this possible for them. In that role you have a value far greater than you can know.

8. Ask them ‘Is there anything else you want to tell me about?’

9. Don't offer advice unless it's asked for - and then only if you've 'been there'. Even if you have had cancer yourself, be careful to remember it’s their situation you’re talking about at the moment – which may be quite different from your own. So – First – Don’t tell – Ask! And act only on their answer.

I found that those people who had actually had cancer never transgressed these boundaries. If I wanted information about their experience, or how they’d coped with something, I had to ask them. And then I knew that what they told me had relevance.

10. Ask ‘Do you want to talk about your cancer?’ If the answer is No, you might say ‘That’s all right, I’m happy to let you lead the conversation into whatever you’re comfortable with.’

Sometimes this will actually lead them into speaking of their thoughts and feelings about what’s happening to them, if that’s their need. If not, just know that you are giving your friend, family member, whoever, the chance to have a break from what is weighing them down. Remember, they’re not only a cancer patient – they are, in most ways, the person they always were, with the same interests and ability to get excited about the things that have always interested and excited them. What a blessing!

And for yourself - Think about this:

When you’ve been threatened by the possibility of dying REALLY SOON, life takes on a different meaning.

[ And if you are the one trying to stretch your personal resources beyond your own cancer, this last bit is also a gentle reminder for you. ]

It’s not just about whether we live or die. It’s about how fully we live This Moment, of This Hour, of This Day. Because, when you live each moment consciously your life feels longer anyway than if you were living without paying attention to this time you are given.

Don’t give away the ‘now’ by concentrating so hard on what you want or plan for your future that you don’t notice what’s happening right at this moment.

Live the life you have, inspired by who you are way down in your spirit. And remember, of all that makes life worthwhile, love is the greatest - whether it's someone else loving you, or you loving them. The power of love goes in a circle, it enriches those who receive and those who give.

Life's a gift, for however long we have it. Love each day for itself and when you come to the last one you'll be able to count the good fortune of having experienced it fully.

I wish you all much love and kindness if your own life. And remember the advice given by flight attendants 'Put your own oxygen mask on first'.

Want help or advice? send me an email berylshaw@netspace.net.au

My Cancer Wakeup Call - This is why I do it

Why I do it

Years ago I christened myself ‘Boots and all Beryl’ because that’s how I’ve lived my life. Many of the experiences of my life have landed me in positions where I felt I had no choice, plunged into situations I’d never have chosen. I now realise that, even  in those situations, I did jump into them boots and all. Boots and all into hanging on, making the best of a bad deal. That too has its value - and now I can see that everything I do relies on the experience and insights I’ve gathered during those times, because every day it helps me understand what others are going through when they're in trouble.

      How blessed I am that, alongside these trials and traumas I was apparently also born with a gift for creativity. 

'Another Life' ceremonies

All my experiences now flow into what I offer others, whether in my books and presentations, or for the special ceremonies I create. 

      Recently I created one of my 'signature' Another Life Ceremonies for a mother and son separated by adoption many years ago.They spoke of their losses, and now their gains in knowing one another. They made plans for keeping their loving friendship moving along more easily now they'd 'vented' their feelings. I loved being able to put all the necessary elements together to gift them with this special ceremony for the individuals they are.

        I see patterns in the ‘shape’ of each ceremony, as we work together on creating something useful that the participants love. Something to help in moving forward with strength, transcending all the old patterns that need to be put aside.

        I love my clients as I love life. You are the reason I get up in the morning.

        I’ve been designing and running these trade marked ‘Another Life’ Ceremonies since 1993, for people who had separated, divorced, or had a loved one die.

 Ceremonies for people who've 'walked through the flame' of cancer

    

My own experience with cancer became the catalyst for my beginning a new design, for people who have been faced with their own ‘life defining moment’. And now I'm looking for people with the right kind of experience to learn how to present these ceremonies in other places.There's only one of me, and so many who need this help. You can see more about the design behind these ceremonies on my website anotherlife.com.au

 Happy days in Dallas 

I've just returned from delivering two 75 minute workshops for health professionals in Dallas, Texas. I really stirred up these doctors - and others in positions of power in the health system - giving them lots to think about. Getting them to mentally put themselves in the position of their patient and asking them what memories and emotions this exercise stirs up for them is a pretty risky exercise for me. But, Hey, they followed along and joined me in some learning.

      That's one of the ways my experiences - and my expertise as a wordsmith - make me more useful to everyone else who's ever experienced illness or disaster.

Cancer Patients in Disaster - What's happening?

Cancer Patients in Disaster - What's happening?

Another disaster - this time in New Zealand, Australia's sister-country.

Since I shifted across from using my skills for those divorced, widowed, single parents (I call them all 'solos') into the field of helping others with cancer after my own near death from colon cancer I have, every time there is a disaster somewhere, been very aware of the additional toll that will be visited on people going through cancer treatments and other major illnesses which need ongoing care.

What if an earthquake strikes just when you are  halfway through a week of daily chemotherapy? If the hospital where you receive treatment is demolished by a 'quake? Or if all your support services shift into crisis mode and you worry that this means you will be left without the help you need? This is when our wonderful present day services truly come into play. Countries like Australia and New Zealand are blessed - as are many other modern communities : we band together across States, across land masses, across the sea.

Australians have, since the beginning of the last century, fought in common teams with New Zealanders across a world at war. That's where the name ANZAC comes from, the Australian and New Zealand Army Corps.

As I type, we have so far 150 fully equipped and self supported members of search and rescue teams in New Zealand helping them after their latest earthquake, plus teams of doctors and police. We naturally responded with our Prime Minister, Julie Gillard's offer "Whatever you need, we will give it".

In Australia we have just come out of some months of widespread devastation ourselves - Cyclones and floods in Queensland, floods in Victoria, fires in Western Australia, another cyclone down across from the North West. And right  now another cyclone in Western Australia. That is unfortunately the country we live in. "a land of droughts and flooding rains" as was chronicled in an iconic poem 'My Country' written by Dorothea Mackellar more than a century ago.

The upside of this has been that these very disasters have developed highly trained - and ready to go - teams of search and rescue men and women; body identification teams; armed services with tremendous engineering and personal skills and heavy equipment that are constantly used across our Pacific region (Indonesia, Ache, Malaysia etc etc over recent years), wherever they are needed. And our professional and armed forces teams are always in there in large numbers.

Our professionals services are backed up by deeply trained volunteer services that we call on during our own disasters. That's the way Australians have always been; we don't wait to be asked, but automatically move in to help.

I just saw on my TV one of the workers in New Zealand, striding out of a damaged building, calling out 'What do you need?'. And that's the cry we are all responding to, reaching out from one person to another. Nationalities dissolve at such times, but it's only those who have been caught up with cancer at some time whose first thoughts go to the plight of those having to navigate their way though this extra fog of concern.

When I'm in the US in less than a month to deliver 2 x 75 minute workshops for health professionals at '12th Annual International Summit on Improving Patient Care in the Office Practice and the Community' for IHI (Institute for Healthcare Improvement) in Dallas, Texas. Titled:  The Doctor-Patient Relationship: Improving Care Through Dynamic Communication, I'll keep in mind these concerns. What I offer in such professional environments is desperately needed, even more in times of great difficulty, when the wrong word can cause catastrophic trauma to someone in need.

I visualise a world where eventually all in need will be supported. When the 'rolling strife' across so many Arab States at this moment comes to and end, when all have the opportunity to vote and live a life governed by true concern for each individual's rights. May they also have what we have. It's tough enough having cancer or any other major illness. Let's all work toward a world at peace where at least natural disasters and inevitable ill health will be our only worries.

Much love

Beryl