Soul Letters For The Cancer Sojourner, #7 When ‘Support’ Means Something Different For Everybody

Last night, I was watching a program about U.S. Navy aircraft carriers commissioned to patrol the seas around the middle east in 2005, just a few years after the fall of the World Trade Centre in New York. At one point, the crew of one carrier discussed the general sense frustration felt at the lack of action or engagement required since they’d been ordered to attend the situation. They were literally all fired up and ready to do….something. Anything. But not nothing. Crew members who knew someone personally affected by the events of September 11, 2001 had written a persons name on each of the bombs which lay in the ships hold. The entire mission was imbued with tension and meaning for all the crew, each highly trained, motivated and passionate in their own way. When asked what the orders from above were, one crew member deflatedly replied “Support. At this time, we’re just providing support.” It seemed the crew of the carrier felt “support” was fairly benign a mission considering what they were capable of, and what they arrived prepared for. However, my feeling was the local residents located within missile reach of the ship probably viewed the ship, the crew, and the reasons for their presence in a completely different way. To them, the “support” the ship was providing had a totally different meaning.

image credit: iStockphoto
image credit: iStockphoto

When we have cancer, folks around us will often rally with their own kinds of “support”, but exactly what “support” entails and how it looks and feels is often a matter of perspective. To the aircraft carrier crew, considering their training, motivation and equipment, providing “support” was a polite way of saying “we’re really doing nothing”. However the exact same “support”, even though it looked like doing nothing, felt very different to someone quite else close to the situation.

Sometimes as person with cancer, the support others are capable of and ready to provide isn’t the kind we actually want, need or expect. They may turn up with their aircraft carrier prepared for an all-out war on cancer, when all we really need is a rowboat and a half-hour of peace and quiet. They may arrive with their comprehensive preparations for battle and even a cancer-fighting bomb with our name on it, when all we really need is just someone to sit close and listen to us talk about our day without mentioning the “C” word. They may come to us all equipped to mop our brow, deal with our various nasty ablutions and talk incessantly positive, when all we really want is someone to bring us a bottle of wine and laugh with us while we drink it. Sometimes, there is a definite mismatch between how we interpret “support” and how the people around us do, and it may well be what we want from them doesn’t feel like “support” to them at all.

And sometimes, folks will actually avoid us completely because they think supporting a person with cancer requires a fully armed, fully equipped aircraft carrier, and they know full well they haven’t got one.

Clearly, this can cause all kinds of problems.

People come to cancer with all kinds of fears, expectations, assumptions and ideas. They also come with their absolutely-good good intentions, which are often fighting for space with the fears and assumptions. As a person with cancer, it’s vital for us to be mindful of how the people around us may be feeling not just about our having cancer, but about their own role in our journey. The kinds of “doing” folks who like to see results and enjoy being busy may feel inadequate and frustrated by the situation if they don’t find ways to channel their energy. Like the crew of the aircraft carrier, they might assume low-key or passive “support”  is a polite way of saying “you’re pretty much useless here”. Conversely, folks who think cancer happening to you is the biggest, most awful thing that’s ever happened to anyone ever might assume they are vastly under-equipped to play any part in it. They may see “support” as too big an ask, and they may just take their little old rowboat right home and quietly stow it out back in shame and disgust with themselves.

What can we do? Well, to be perfectly honest, I’m not sure. Every situation is different. People’s feelings are often so raw around the subject of cancer, many things are said and unsaid almost subconsciously. But being aware of how others see their own capacity to deal with our having cancer is a start. Often, once we broach the uncomfortable silences which can surround cancer and begin to talk about what’s really going on, the solutions become much clearer. Cancer is never greater than our capacity to not let it kill us in a thousand other ways. Trust in what was here before cancer came, and what will remain once its gone whatever the outcome. This I know – one way or another, with all of us willing and able to pull together to do the work cancer requires of us, everything is going to be okay.

*****

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Soul Letters For The Cancer Sojourner #6 – Letting Other People Be Part Of Your Story When You Have Cancer

It can be challenging including others in a cancer experience.

When things are at their worst, we want to protect the people we love from feeling the same anxiety and confusion we are. So we smile when we feel like crying. We hide behind a locked door, telling folks it’s “not a good day”. We stay in when we could go out. We change the subject, force a laugh, literally put on a brave face as they walk in the room – and take it off again when they go, collapsing from the exhaustion of trying to be one of those ones everybody brags on who “never complains”.

And then there are the times when we just want to punch people in the head for being so nice.

image credit: iStockphoto
image credit: iStockphoto

Sometimes, being a cancer hero is just bloody hard work.

Nobody wants to be a cancer whiner. We don’t even want to hear about it any more, so why would anyone else? Cancer isn’t very exciting, not nearly as exciting and interesting as others seem to think. Can’t we just change the subject?

“Can I come around and see you?” Can you come around and look at me, you mean. Sure! Bring your friends! You can all go out to lunch afterwards and have something interesting to talk about! OR NOT.

Yep, it’s challenging, knowing how to include others in a cancer experience.

There’s not many things worse than feeling patronised, placated and pussy-footed around. But as someone with a scary disease,  allowing others to come around you and give their little offerings to you in the ways they know how is really important for them. It lets them know they have power against cancer too, because they are shit-scared and feel inadequate and intimidated, just like you. Allowing others near you gives meaning and purpose to them in the cancer, at a time when they may be feeling completely useless and powerless.

They’ll tell you later, “Do you remember when I….”, and you may not even remember what they did and when they did it, but they will. And that matters.

Let go, and let others. Even if it’s only sometimes. There ain’t no medals for this, you know.

*****

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Soul Letters for the Cancer Sojourner – #5 My name is not ‘Cancer’

Before I was diagnosed with stage 3B Non-Hodgkins Lymphoma in July, 2003, my life was pretty great. My husband Ben and I and our four children lived in big house in a gorgeous seaside town, where I ran a well-known furniture and homewares shop. Our children attended the local Christian school, and we were members of a Christian evangelical community church. Pretty darn awesome, really.

Then one day, everything changed. I was teaching a patchwork class in my shop, and was trying to concentrate whilst feeling like someone was throttling me in slow, silent increments. Swallowing was like trying to digest a dry sock. My chest rattled when I breathed. Slowly, my consciousness began to slip away, as if a door to nowhere had opened behind me and I was being sucked into it. A voice in my head said “You need to go now, right now. If you don’t, pretty soon something terrible is going to happen.”

I called Ben, who took me to the nearest hospital. I talked to a concerned looking doctor who sent me for an x-ray. After seven months of being dismissed by my family doctor as a middle-aged woman with a mild case of gout and a major case of peri-menopausal hysteria, within an hour of being at the hospital they found a tumour the size of a saucer in my chest.

“You’re going to need a bigger hospital.” said the doctor.

I was in shock, and that was to be expected. But what was not as expected was how quickly I went from being who I was before they found the cancer inside me to something else entirely. People began to see me and treat me differently, and the change began almost right away.

The doctor at the first hospital who initially greeted me with concern and curiosity, now backed away with a look resembling abject terror on his face. What changed?

The friend who came to visit me in hospital, with whom we’d shared a glass of wine with just the week before, who now stood with his hands in his pockets and a look of rank suspicion on his face. “You don’t look like someone who has cancer,”  he said. Was I was just wasting everyones time?

The visitors who dropped in unannounced whenever it was convenient for them, even though before I had cancer they’d never have come around without calling first. What happened to my privacy?

Being called “darling”, “love”, “pet” and “sweetie” even though I was a grown woman with darlings, loves, pets and sweeties of my own. Was I not still an adult?

Being told what a hero I was, when I hadn’t really done anything except exactly what everyone in charge told me to do, nothing except lie there and take whatever they did to me. I hadn’t been brave. I was scared, confused, angry, often cried like a big sook, told people to go the hell away, and even said I didn’t want any more treatment, even if it meant dying of cancer. Why did everyone keep calling me “brave’?

And the worst – being referring to as “the diffused B-cell Non-Hodgkins Lymphoma”. Why did everyone now call me by the same name as the thing I hated, the thing I never asked to get, the thing I was trying so hard to get rid of?

It almost seemed as though everything I did and was before cancer didn’t matter any more. I wasn’t a grown woman, a mum, a wife or businessperson any more, and we were no longer just a family of six – we were now, in others eyes, a tragedy in waiting. I was a a character in a story, an anecdote people told each other, a cancer patient – a hero.

When you’re diagnosed with cancer, it can feel like your identity changes. People often treat and speak to you differently, which can be frustrating, annoying and downright upsetting. People may also view you through the lens of their own beliefs and experience of cancer, and if those beliefs and experiences are negative, it can feel as if you’re walking around with “cancer” written in black marker across your forehead, scaring everyone half to death.

They avoid looking you in the eye, and if they do, it’s as if you already died.

The good news is we don’t have to be  the “cancer victim” or “cancer hero” others want us to be, physically, or socially. We can teach people how we’d like them to treat us.

If I could go back in time to when I had cancer and tell myself one thing, it would be this –

“Jo – You get to choose how you act, what you’re called, and where cancer sits in the bigger picture of your life. Cancer is something that happened to you – but you are not the cancer.”

If someone calls you brave, and you don’t feel brave, tell them you don’t feel brave, and follow up with how you do feel.

If someone uses a diminutive to address you such as “sweetheart” just because you have cancer, and this makes you uncomfortable, it’s okay to say so. Kindly.

If someone insists on dropping by at an inopportune time, or wants to visit and you feel uncomfortable about it, politely decline. It’s okay to say “Thank you, but not right now.” and close the door. It’s okay to insist on privacy even though you’re sick.

And most importantly, find someone you can talk to about how you’re really feeling. This may be an empathic friend, cancer coach, social worker, health professional, counsellor, psychologist or family doctor.

And, as kindly as you can, let folks know whilst cancer is something you’re experiencing right now, it hasn’t become your identity. Cancer is happening to your body, but you’re still “in there” behind those eyes. Your name is not and never will be “cancer”.

*****

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Soul Letters for the Cancer Sojourner, #4 Cancer Never Wins

There is more than one way for cancer to kill you. Resist cancer physically by all means, but also resist allowing it to convince you it’s better or stronger than you. It’s not. Ever. Even if you die, cancer is never your better, not even your equal. There is more to you than just the parts cancer can reach. Cancer never, ever wins.

I made this for you.

cancer never wins purple

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

*****

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Soul Letters For The Cancer Sojourner – #3 You Can Change One Thing Today

When cancer comes, it can have us feeling disempowered and helpless. Where before we felt we had some control over our life even if just to a degree, cancer can have us thinking we have no control at all, and as if any control we thought we had was a lie. But cancer is the liar. Even when something like cancer interrupts and intervenes, we always have choices available to us.

As someone with cancer, we may find ourselves in a position where we need to give power over our body to someone else, but we can still choose to nourish and to nurture ourselves – body, mind and soul. We can choose what or whom we allow to come close to us right now, and what or whom we’d like to keep at a distance. We can choose not to accept the premise cancer is stronger or greater than we are, and we can choose to let some things go and hold other things closer. Whilst some choices may be taken away from us in the wake of a cancer diagnosis, changing our focus can help us recognise those areas where we still have control, and are able to keep ourselves in the drivers seat.

image credit: iStockphoto
image credit: iStockphoto

Our frustrations and strong emotions often signal areas we’re feeling a challenge to our power and sense of control.

Whilst we might feel submitting to the inner work cancer seems to require of us to be a kind of “giving in”, it could well be the issues we’re facing would’ve come up anyway, even if we never had cancer. Illness is often a catalyst for change in areas which are already problematic, but which we’ve been able to avoid until now.

Part of surviving is about learning how to keep yourself behind the wheel of your life as you journey through cancer, whilst still accepting the help and support you’ll need from others. This can be challenging, particularly if you’ve been largely independent, or are someone accustomed to leading or caring for others.

Accepting help, change and rest isn’t “giving in to cancer”. It’s part of helping keep yourself strong. Despite how afraid you may feel at the moment, especially if you have more time on your hands than you’re used to, don’t be afraid to look inwards – cancer won’t be found in those deep, inner places. Remember, your body is just one part of you, and there are places – parts of your mind, spirit and soul – cancer cannot touch. In fact, those places may just be about to justify their existence. Don’t fear the work. You are stronger, braver and kinder than you probably have been led to believe.

The changes cancer brings can seem overwhelming and catastrophic, particularly at first. Experiencing cancer may seem to take more than we believe we have to throw at it. But you can do this. Just take one step at a time. You can, if you will, change one thing today – one thing which could make all the difference to you, and to others. One small decision could turn this thing right on its head. Exchange one choice you know compromises you for another one which brings you closer to where you want to be. Taking the best care of yourself possible is not selfishness. You need you to take care of you more than ever before.

Don’t look out there for the difference here – look to yourself. It’s not them, or that, or those, or there. It’s you. It’s in your head, in your heart, in your hands – that’s where your future healing and wholeness is, whatever the outcome of the cancer.

Look to your creativity and to your imagination, and not to your past or your history, for the answer to the question “What one change can I make today which will create a difference in this situation for me?”

Today, decide you’ll spend a moment to recognize you are the small difference needed in this situation. Don’t wait for circumstances or for others to change. Cancer is not in control. You are. Cancer only knows how to do one thing – but you are capable of way, way more.

You can’t change the world right now. But you can change one thing today.

*****

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Soul Letters For The Cancer Sojourner – #2 Choose Your Own Cancer Adventure

Everyone’s experience of cancer is different, except for the parts which seem almost universal.

One thing I’ve noticed which seems almost the same for everyone diagnosed with cancer is the widespread perception amongst the people around them there has to be a moral to the story. You know – a point, a lesson or a conclusion to be drawn from cancer.

I think there are two reasons we feel we need an answer to cancer –

1) We believe everything that happens in life is there to teach us something.

2) We want to believe everything has a positive side, if we choose to see it.

image credit: iStockphoto
image credit: iStockphoto

When it comes to cancer, both these can certainly be true. For some, attaching a sense of purpose can give cancer some meaning, and God knows, sometimes we need to feel there’s a meaning, otherwise we’d need a psychologist as well as an oncologist. And many do.

But a lot of people with cancer don’t want to see a meaning. For them, cancer isn’t the most amazing or interesting thing that’s ever happened to them. A lot of folks don’t want to see a deeper purpose in cancer, or allow themselves to be changed or defined by it.

After a cancer diagnosis, ours or someone else’s, we may (naturally) feel confused and upset. We might lose some perspective on life, and often a sense of panic sets in. Those surrounding a cancer experience will often spend quite some time thinking of ways of making cancer seem less frightening and more under control – for ours, and for their own benefit – and this can have them compacting cancer down into a cliche, or else scrambling to find a way to attach some kind of deeper meaning to it. In validating cancer as a meaningful experience, it’s less frightening somehow.

There’s nothing wrong with this: it’s simply a coping mechanism.

However, as cancer sojourners we need to be mindful we don’t simply absorb or accept others projections and conclusions about what our having cancer means and what lessons we’re supposed to draw from it. We can work out our own conclusions. We also have to be careful not to apply subtle pressure on ourselves to “get it all worked out”, or feel obliged to explain to others what deep meaning our having cancer holds, particularly if we don’t feel it has one.

It’s perfectly okay to see cancer as a waste of time, totally unfair, and utterly pointless.

When you have cancer, people often like to say things such as “The Universe/God is trying to teach you something by giving you cancer. There’s a lesson in this for you.”. And sometimes, rather than a polite nod and an appreciative smile, the appropriate response to these kinds of remarks is “Really? Then The Universe/God is an asshole.”

Sometimes, people also like to let you know exactly what lesson they believe your cancer experience has for them, regardless of what your actual experience may have been. After I went into remission I was asked often to speak to groups and at functions about my having cancer. At first I said yes to every invitation – I really wanted to help and inspire others. But after a few engagements, I became more wary. I realised many folks didn’t actually want me to tell the truth about my cancer story – they wanted me to tell the story they wanted to hear about cancer. They wanted to hear my personal transformation story, and I didn’t have one. You see, despite the fact I survived cancer physically, I was significantly traumatised by six months of treatment. I entered remission with a shiny new anxiety disorder and a pathological fear of going anywhere more than fifty kilometres from my home. My husband was diagnosed with depression, and was prescribed anti-depressants. I was most definitely not a better person because of cancer, and I found there were people who most definitely did not like to hear about that, not one little bit.

After a while, I stopped accepting invitations to speak at events if I suspected they were going to practically hand me a script with what I was supposed to say to make them feel better about my having cancer. I simply didn’t feel that way, and I didn’t feel like lying about it. I wanted to explain to people how having cancer wasn’t always heroic, transformative or noble, and how nobody really understood what “fighting cancer” even meant, and how people who had cancer were tired of being told to ‘be positive’. But nobody wanted to hear that message.

We can learn a lot from the bad things that happen to us, but only if we want to, and only if there’s something to be learned. Sometimes the shit is just the shit, and there’s no point or any higher meaning. Sometimes it’s just terrible, ugly and sad, and all we can do is simply allow ourselves to go with it. At times we can extrapolate purpose from our trials, and that is often wonderful, but it isn’t ever compulsory.

We all get to choose our own cancer adventure, and it may well be cancer turns out to be the greatest lesson we’ve ever learned. But in releasing our expectations of what cancer must mean, must teach us and must look like, we also release ourselves into our own unique capacity to define cancer in the way which suits us best, instead of allowing cancer to always define who and what we are.

We are always, always better and greater than cancer. And nobody likes being dictated to by something they consider lesser than themselves.

Let go of the script which prescribes how you’re supposed to think and act as someone with cancer, and don’t feel obliged to interpret your cancer journey for others. Let them make of it what they will. You get to choose your own cancer adventure, and do this any way you please – noble or cowardly, heroic or needy, changed or unchanged. This I know – cancer doesn’t always have a moral or a point at the end of it. Sometimes it’s just a big, fat, waste of time, and that’s perfectly okay. Let yourself off the hook, and give yourself a small break. You, and the folks around you, need it now, more than ever.
*****

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Soul Letters For The Cancer Sojourner – #1 This Is The Beginning

A cancer diagnosis feels nothing like a beginning.

It feels like a door just slammed shut.

It feels like your dreams for the future have been cancelled.

It feels as if you’ve been put off a train at a station in a place not particularly pleasant or interesting, while everyone else gets to stay on the train and keep going somewhere green and lovely and exciting. And you don’t know if the train will ever be back again.

image credit: iStockphoto
image credit: iStockphoto

Cancer feels like the end of something. Of everything.

Or just the end, full stop.

And you’re right, it is the end.

It’s the end of the part of your life before this one.

It’s the end of the way things used to be.

It’s the end of – God knows what. And that’s the frustration, isn’t it? You know it’s the end of something, but you can’t know all the ways just yet. All you do know is what you hope it isn’t the end of.

Cancer is the end of not speaking the unspeakable.

Cancer certainly is the end of some things. Cancer is the end of pretending these kinds of things don’t happen to us. It’s the end of thinking you have plenty of time to travel, to change, to forgive or to put it right. Cancer is the end of believing it doesn’t matter how you treat your body, your body will always bounce back.

Cancer can also be the end of thinking your body is you.

You are not merely what constitutes your body. Your body is one part of you, and unfortunately, that part isn’t working very well right now. However, there are other parts of you cancer cannot reach, and those parts may be about to come into their own. But only if you like, and only if you choose.

Cancer can feel like the end of you being the boss of you, or you knowing where you’re going, of self-determination and autonomy. It can feel as though you’ve been forced into a process of personal transformation when you weren’t ready for it, didn’t ask for it, and thought everything was perfectly okay before cancer came along, thank you very much.

I’d like to tell you when it comes to cancer, there may be a few things you lose some control over. But lets get this straight – the personal transformation part is totally optional. If you choose not to give cancer the power to improve you, just as I’m sure you’ve no wish to give cancer the power to lessen you, then good for you. But I’d also like to tell you what I’ve learned about cancer, and that is it changes things. It may change the way you see the world, your idea of the way things really are, or your perceptions about the kinds of things which can happen to people. Cancer may change your body, or force you to have it changed in order to make cancer go away, and this can feel unfair, because it is. Cancer may increase your sense of fear, or your capacity for courage. Cancer changes things, and sometimes the thing they change is us.

Some of the things cancer changes can’t be changed back to the way they were, and this is cause for grief and regret. But sometimes the change is exactly what you want or need to happen. Some of the things cancer changes you may feel have to change, and it’s about time, and some you may want to change. Being made to change by a force you can’t control can make you feel angry and cheated, and many people defy the changes cancer forces upon them. But there are some kinds of change which may put you ahead of cancer, and help you feel on top of it instead of under it. Every time we make or allow a change, it’s a new beginning, and with new beginning come endings too. There may be anger. There may be resentment and resistance. But the choice about how much change you allow or welcome always remains with you.

In a way, cancer is a kind of beginning. Cancer can be the end of one way of thinking and being, and the start of another one.

This is the beginning of your cancer journey.

Think of one of those roadside maps, the ones with the big arrow pointing to a dot which says “You are here”. Well, you are here.

And in order to go forward – and not simply sit down in the road and wait for something to happen – those of us who make this particular journey must pull on some boots, pack a rucksack, make a map, and just get started.

It may seem like everything you thought was sure and certain is falling apart and coming undone, and all you see are walls closing in around you. Perhaps this is the darkest time you’ve ever faced in your life. Please know that despite what’s happening in your world, what it may feel like to you and where your future may seem to be heading, this is not the end.

Now, I can’t know exactly what circumstances brought you here, but I do know what brought me here.

Love. For you.

I’ve been where you are now, and I’m here to tell my story. You’ll have the opportunity to tell yours as well. Above all else, please know – your story matters. It matters to me, and I’m not the only one it matters to.

You may think you need to be concerned about where exactly you’re going, and how on earth you’ll get there, but at the moment, you don’t need to worry about that. What’s important is starting – and here you are, just about to do it. The road is stretched out before you, and what went on before now is behind you. You may never have the opportunity to begin again like this, and you know, that’s exactly what’s happening. Regardless of what lies ahead, and how long you’ll be journeying for – with or without cancer -you’re beginning again.

This is the beginning.

To see this as a beginning, you may have to use your imagination a little. Everything you think you know about cancer could be telling you all kinds of things about how this is likely to go. Our memory and our history is there to protect us from danger, to keep us safe from harm. But your history isn’t going to help you this time. Your memory and what you think you know about what it means to have cancer don’t have anything good to say about this, and what you really need isn’t what your memory has to offer. You need something only your imagination can give you, and that’s hope. Hope is living out of your imagination instead of from your memory and your history.

You have the opportunity right now to begin living from your imagination instead of your history.

You can begin to change what you think you know about yourself, about having cancer, about the others and your life and the way things are in the world. You have a chance to change your mind, and even to change your self.

Many people never get a chance to do this. And here you are with exactly this opportunity.

Look up. You are here.

Dear friend, here’s what I really want you to know, and what I’ll be here to remind you of for the next thirty days as we journey together. Despite what you may have thought about what it means to have cancer, and despite where this road leads and how long you journey for from here on in, this is not the end.

This is the beginning.

*****

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Soul Letters For The Cancer Sojourner – #20 Something Needs To Change

Something needs to change, and you know it.

You’re ready for things to be different. So, so ready.

The next step for you isn’t finding out what you need to latch on to, but determining what you need to let go of.

What’s holding you back isn’t a lack of momentum. It’s an attachment to things which once kept you safe and anonymous. Safety and anonymity aren’t luxuries you can afford any longer.

Face that fear, and send it simpering into the shadows from whence it came.

You were born to change your world.

Let go. Let go. Let go.