Tattoo Chronicles #1 – Survivor

My first tattoo. Got it in 2008, five years after surviving cancer.

I drew this design up myself, and the tattoo artist commented it was obvious I wasn’t a tattoo artist – too many fiddly little scrolls.survivor tattoo

I wanted this tattoo more than anything. I needed a permanent reminder to never take my body for granted, and always listen to it when it speaks to me. The non-hodgkins lymphoma was stage 3B by the time it was found, undiagnosed for seven months despite my repeatedly visiting a doctor asking for tests. I knew I was sick. He told me I was just tired and working too hard. I walked into my local hospital emergency department on July 17th 2003 and told them if I was going to die, I wanted to do it in their waiting room, not in my kitchen in front of my kids. They found the saucer sized tumour in my chest within an hour of my arrival. Rushed to a bigger hospital in an ambulance, then airlifted two days later to Sydney. Three months of chemotherapy and two of radiotherapy. I learned a lot about myself in that time.

First thing I learned is my body knows what sometimes my mind and will refuses to admit. I thought I was living a good life, but it was a cacophony of compromises. My body said, fine, go there if you like, but I’m not coming with you.

It took time for me to relearn my body’s signals and to rebuild the trust between it and me. Now, I ask it first before I do anything where it will be required to bear the weight of the consequences. Sometimes it says, hell yes! Sometimes it says, are you kidding? Sometimes my body says, look at your arm, girlfriend. And when I do, I’m sometimes reminded I am not made of iron and stone. I can break. But sometimes looking at my survivor tattoo reminds me I can do very hard things. It reminds me not to expect so little of my body.

And sometimes, my tattoo reminds me becoming a survivor requires one almost die, and then come back from that…..but there be a day when I will not come back. Is this that day? No. This is not that day. Today, I live. Every day, until that day. I live.

Selah, my friends.
Jo xxx

Soul Letters for the Cancer Sojourner, #17 Your Burning, Broken, Beautiful Story

Talking about yourself is hard.

Talking about the worst thing that ever happened to you is even harder.

Talking about yourself, and the worst thing that ever happened to you, which also happens to be the one thing the mere mention of which generally sends people crashing backwards across the room, out the door and halfway down the street is the hardest. I don’t care who you are, it just is.

This is why an awful lot of people – probably more than you realise – will never tell anyone they’ve had cancer. Maybe not even when it’s happening.

Cancer and treatment can be lonely, difficult and stressful. It’s stressful for others around us as well. Often, the reason we don’t want to talk about cancer is because it upsets the people who care about us. Even if we managed to cope quite well with the experience, our having cancer may be the worst thing that ever happened to our friends or family, and they may never want to hear about it again. Not talking about cancer may be our way of assuring folks everything is all right again, and normal life has returned.

Not telling anyone about your having cancer, even when you have it, can have its benefits. But there are times when telling people your story is going to be worth the trouble, if not for you, then for the person you’re telling your story to.

There is more than one way for cancer to make us  “sick.” We can be heart sick. Soul sick. Brain sick. Friend sick. Cancer can hurt us in a plethora of ways, other than the obvious physical ones. I know, because I got all these kinds of sick when I had cancer, and more besides.

When I had these ten kinds of sick because of cancer, I really needed contact with another human being who understood what I was going through. More than I needed to hear the cliche’s like “what doesn’t kill you makes you stronger!”, more than I needed to stay positive or know how much longer I could expect to live beyond my treatment , I really needed someone who would sit with me and tell me I wasn’t broken because of my thoughts and feelings – someone who could say “I know”, and mean it. It was hard for me to find that kind of help, because many of the folks who’d been where I was had kicked out running and never looked back. Many folks who’d been through cancer didn’t want to go back in to that world, because getting better for them meant leaving it behind. But I knew I needed someone who didn’t just read about the ten kinds of sick I had in a book. I needed someone who truly understood, who spoke the language and recognised the landscape. I needed someone who’d been there.

image credit: iStockphoto
image credit: iStockphoto

Now, even though I’ve been through cancer and treatment, I can’t know exactly what you’ve been through. But I do know this. At some stage, someone is going to ask you about it. Someone is going to want to know what you did when you had cancer and how you did it, and it won’t just be a morbid fascination. It’ll be because this one feels as though they’ve just returned from a foreign land, and they just heard you speak a few words of the language. It’ll be because they’re frightened and feel desperately alone, and all the folks they love look so terrified and helpless whenever they try to talk to them about how they feel. It will be because you represent something they desperately want to believe exists.

The future.

You’ll become a symbol of hope.

And one day, somebody’s eyes will swing around to meet yours, and you’ll see there the familiar fear you’ve faced before, and you’ll want to run away, but your heart will remember that loneliness and terror, and compassion will overcome you. And someone will ask you if you’d mind having your picture taken for the local paper, because they’d like to run a story about cancer to raise awareness, or raise money. Count on it. And one day, you’ll find out that people with cancer in your town can no longer have access to a treatment you were given because someone changed the rules, or someone decided to pull funding, and you’ll become hot with anger and indignation about it, and you’ll want to go and give someone a piece of your mind. And you’ll think about how talking about yourself is hard, and talking about the worst thing which ever happened to you is harder, and talking about yourself and cancer in the same sentence may well be the hardest thing you could ever do. But then you’ll realise you probably already did the hardest thing you’ll ever do. And you’ll know then in that moment, telling your story is just what you need to do.

You survived, you’re surviving, you are a survivor. You did and are doing something very, very hard. People need help, and they also need hope. You don’t learn about how to give people hope out of a book, in a class or from an expert. You learn to give others hope by very almost losing it, and then getting it back again.

You can give people hope. Your story matters. Tell your story.

*****

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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 – #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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Cameron and Heather Von St. James – A Caregivers Story

Again and again, it’s brought home to me the challenges faced by carers and family members when someone they love is diagnosed with cancer. And support can feel pretty thin on the ground, as all focus is often on the person diagnosed. But our own family’s experience taught me how vital it is for all those directly affected by a cancer diagnosis be they family or friends to have access to adequate support. It was almost four years after my diagnosis of lymphoma we became aware Ben was not only clinically depressed, but self-medicating with alcohol. Long after I’d gone into remission, we faced new challenges as Ben dealt with his alcoholism and we very almost divorced. Our “battle with cancer” wasn’t limited to just my being sick. My diagnosis kicked off a chain of events which still has a legacy in our lives.

Todays guest post is from Cameron Von St. James from the Mesothelioma Cancer Alliance, who’s wife Heather was diagnosed with mesothelioma. Cameron and Heathers story really brings home the impacts cancer can have on family. A huge thank you to Cameron for his contribution, and for sharing his and Heathers journey.

*****

Cameron and Heather Von St. James – A Caregivers Story

“My wife, Heather and I started talking recently about her diagnosis with mesothelioma, and she wanted to know what it felt like to from my perspective. While it was difficult at first for either of us to talk about those feelings, we felt it was a positive step, to see what strategies we’d both used to cope.

“Just three months before the date of her diagnosis, we had one of our best days ever, bringing our beautiful daughter Lily into the world , our first and only child. I was ecstatic. However, the happiness soon turned to fear, and then anger when the doctors told me my wife had mesothelioma. I looked at my wife, crying, wondered how on earth we would get through it.

“At first, I was full of anger. I couldn’t believe that this had happened just after we’d been given the gift of our beautiful daughter. However, doctors really don’t let you deliberate too long – we needed to discuss treatment options. I soon realized we were going to have to make some difficult decisions. I wasn’t ready, but the conversation about our options brought me back to reality. How were we going to get through this? What was the plan? That was the first of many times that I felt my head spinning and still had to make a choice I could never have imagined I’d be making .

“As well as my confusion about our options, my emotions were out of control as well. In private and in public, I went through phases of anger, sadness and fear. I didn’t have any way to handle myself at first, and I often lashed out without thinking. However, in my heart, I know that wasn’t the person I wanted to be. I had to be stronger, for my wife and Lily, but also for my own sanity. I had to be there for my family and continue to support them the best way that I possibly could, being their source of optimism and strength.

“There were several to-do lists at first, and it seemed impossible to get through them all at times. While I cared for Lily and our family pets, there were travel plans, hospital times and of course, work. I learned quickly some things were going to come first, and other things would take more time to sort out. I learned to focus on the tasks that needed to get done. One thing that became apparent was how much our family was loved by others. Many people came alongside to help us, and I realized just how blessed we were. So many people wanted to be a part of our experience just by helping.

“As Heather was going through this battle for her life, she couldn’t know what I was going through at that time. I didn’t want her to know, really. Moreover, I wanted her to feel that everything that was okay, that she didn’t have to worry about anything other than getting through her mesothelioma treatment. After her surgery in Boston, Heather went to stay with her parents in South Dakota, where Lily had been during the surgery. Heather went into recovery mode and also prepped for the next treatment phase – chemotherapy and radiation. During this period, I only saw my daughter and wife one time.

“On a Friday directly after work, I decided to drive 11 hours to South Dakota. I didn’t expect to go through a snowstorm in the middle of the night. As I tried to sleep in my car while the plows cleared the roads, I wondered if I was going to get any time with them before coming back for work on Monday morning. The clouds parted and I found myself in South Dakota on Saturday, spending the rest of the day with my wife and daughter, and a few hours on the Sunday, before I headed back. These were moments that I cherished. While it was difficult, I’ve never looked back at this time and wondered what I would have done differently. I don’t have any regrets about the choices that we made, because they were necessary. I was thankful to have the ability to make choices and also still have some control in what was a life-changing and largely uncontrollable situation.

“I learned a lot during this time. I needed help from other people. I took comfort in my ability to make the tough decisions. Now, more than six years later, Heather is still here, healthy and enjoying life with Lily and me. Looking back on everything, it’s an inspiration to me that my wife is so strong, and has been an inspiration to others who have gone through cancer and treatment.”

*****

When we talk about the effects of cancer and treatment, often we’re talking about the person who’s been diagnosed. If a crisis phase kicks in after diagnosis, all eyes are on the person with the cancer, and all support is directed towards helping them. But when cancer comes, it doesn’t just affect the one with the diagnosis.

Image credit: iStockphoto

I suggest family members, close friends and carers access support services for themselves independent of the person with the cancer, if possible. I have seen how carers who accompany the person with the cancer to a support group will often hold back when it comes to sharing their own feelings, because they feel the spotlight ought to be on their loved one rather than themselves.

I recommend carers seek out a support group or counselling service empathic to the issues carers face. The Cancer Council NSW can be contacted on 13 11 20 (within Australia) and can refer you to carer support groups, and other services for carers, as well as providing information on many of the challenges you’ll face. Cancer Coaching is another option – in cancer coaching, I offer a place where carers and those close to a person with cancer can share about the issues they’re facing, debrief and receive some encouragement for the journey ahead.

For more information about Cancer Coaching, either in person or online, contact me at info@johilder.com or via the contact page.

 

Vale to another cancer sojourner. (“Lynn” from Chapter Seven)

If you’ve read my book Things Not To Say To Someone Who Has Cancer, you may remember “Lynn” from Chapter 7. She’s the lady with ovarian cancer who imagined her chemo to be little soldiers rampaging through her system, killing off those pesky cancer cells.

“Lynn was a formidable personality. Her strong Scottish accent coupled with her sturdy, square shouldered frame created the impression this was a woman not to be messed with. The ovarian cancer she was diagnosed with was in remission when she started coming along to our support group. We facilitated discussion around our circle by allowing each participant a few minutes speaking time, during which we re-introduced ourselves to any new members and updated our stories. Lynn loved to tell us how she lay in the recliner chair during her chemotherapy treatments, closing her eyes and imagining the toxic chemical “soldiers” rampaging through her bloodstream “taking out” any rogue cancer cells they happened across with their little machine guns. She firmly believed this helped her recover from cancer, and it provided comfort for her when she feared it might return.”

The cancer did return.

I’m saddened to report dear “Lynn” very recently passed away. She gave the bastard ovarian cancer a run for it’s stupid money, I can tell you.

Whilst “Lynn” died, she did not “lose her battle with cancer”. Cancer did not win. You see, “Lynn” lives on. While that dumb old cancer died and will stay absolutely dead and be forgotten, “Lynn” remains very much alive in the hearts of her family and friends, and her fighting spirit is immortalised on the pages of my book, where it will continue to inspire others who must walk the same path as she did.

Vale, “Lynn” – I love you still, always will. xxxx

What TO SAY To Someone Who Has Cancer

An excerpt from my book – Things Not To Say To Someone Who Has Cancer”

The Three Questions

“So…what do I say to someone who has cancer?”


It’s a great question, and if you’re asking it, especially after everything I’ve told you so far, well done. It shows you’re thinking. A lot of people don’t even do that. This doesn’t just apply to things to say to people diagnosed with cancer by the way – it’s hard to know what to say to anyone with a chronic or acute disease or condition. But rather than simply thinking “There must be something I can say”, I think it would be great if people stopped to think about what a person with an illness might like to say to them. Someone who has considered their own mortality could probably provide a few interesting insights. They might say something like live for the moment, eat more chocolate and fewer beans, or something as simple as thank you so much for listening.

Image Credit: Flickr - Twitchy Fingers

When I tell people the title of my book they will often say well, that’s all great, but what do I say to someone who has cancer? Nobody wants to say the wrong thing. Everybody means well. I think what you can say to someone who has cancer – if you are planning on helping them in any way – is going to be anything that doesn’t spring from your shock about their diagnosis, your fear about their future, your presumptions about how they feel or your assumptions about what needs to be done next. What will help most is you remaining calm. What will help is you behaving as if the ball is in their court now – ask them, what do you want to say? What will help is you creating some space around what’s just happened with your mindful presence and silence and allowing them to fill that space, rather than you feeling you need to fill in that space for them with emotions, super-spiritual babble, cliché’s and platitudes.
After you hear about their diagnosis, let the friend or family member know you are available, and that even though everything seems to have changed, nothing has changed between you. Let them then lead off in deciding how this thing will look – will having cancer be a big deal? Maybe they don’t want it to be. Maybe they don’t want this to be a huge, life-changing experience. Maybe they don’t want to be treated or seen differently. But maybe they want the whole world to stop turning and everyone to look and listen just for a minute, because something very, very bad has just happened. Maybe this is the only time in their lives that it has ever been all about them, and they need it to be, and you need to acknowledge that and be a part of it. Maybe most of the time their having cancer is okay, but every once in a while it will be fucking awful and they will need you to listen to them complain and bitch and moan before they can find what they need to pick themselves up and move on. Maybe it’s always been all about them and cancer is one more way for them to be the centre of attention. Maybe you’ll need to pull back, or maybe you’ll need to lean in. Maybe you’ll need to walk away and say “this is too much for me to deal with right now” and you need to be honest about that. Maybe you’ll need to think about whether this is one of those times it’s okay for someone to be totally self-absorbed, and decide that just for this time, you’re going to let them do that, no matter how painful it becomes. Or not. That is one of the decisions you’ll need to make. I can do this. Or, I cannot. If you have a family and responsibilities, then maybe you need to think seriously about whether all the promises you made at the beginning when you were consumed by shock and fear are what you really want or are able to do. Be honest with yourself, and your friend. Cancer may be the best thing that ever happened to your relationship, but then again, it may expose the thing for what it really is, and you may learn a lot about each other in this in this time. It may be awesome. But then again, you may not like it. This is not Beaches, and you are not Bette Midler. This is real life.
The fact is that a lot if people think they know what it’s like to have cancer because they’ve seen it in movies, but often it isn’t like that at all. Sometimes it’s much worse, but then again, sometimes it’s no big deal. There are probably people in your world right now who have cancer, but they will never tell you because they tried telling someone once and it got them a reaction they didn’t find appealing. Like pity. Or sobbing. Or lasagna. And some people just hate any kind of fuss. Many of our reactions to cancer come because we think we know what that person is thinking and feeling, but often we are very wrong about that. That’s why it’s vital to allow the person with the cancer to dictate how this thing will be for them.
Sometimes a person with cancers expectations of us or of others, or even of their own prognosis, may be unrealistic. But while it’s natural to put boundaries up and not allow ourselves to be taken advantage of, we ought never tell someone this is how it is, and this is how it will be, this is what it will look like and this is what you will do. The person with the cancer must be allowed to decide how their own cancer journey will look, feel and progress, what action they will and will not take, and what they believe the meaning of the whole experience is. Your job is to decide how you might fit into that. This can be particularly hard when the person has a poor prognosis, yet they have more hope than you do. Nevertheless, the support persons’ role is always to support the person with the disease, and not to drive or dictate to them how it ought to be.

For those who are supporting someone who has arrived at the real pointy end of a cancer diagnosis who want to say something helpful and have not just the opportunity but also the relationship conducive to the conversation that may follow, I do have a suggestion. Three actually.
Think about these questions –
Do you think this is your time?
If not, can you do what is required to survive?
If this is your time, are you prepared for it?
I didn’t think these three questions up myself, in fact, I heard someone speak on this subject a few years ago and these suggestions, in one form or another, were part of their message. I hadn’t heard anything as simple, appropriate or practical before, and I haven’t since. These questions open up so many others, and negate the need for some of redundant things people sometimes say that can really make a mess of things.
When you ask “is this your time?” you give people permission to decide for themselves where they stand in relation to what’s happening to them. It gives the person with the illness an opportunity to think about where this experience is situated in their life, and subsequently choose to resist death, or prepare for it. You’re empowering them by showing you believe in their ability to succeed in their choice, whatever that may be, and you also have an opportunity to offer them your support, should you feel able to provide it. Additionally, when you ask someone if they are ready to die, you’re suggesting not just that there is a way to be ready for it, but you also normalize death as being another part of life. Death is coming to all of us at some time, and it does not have to be terrible, wrong, or bad. It’s far more important to help people die with acceptance and peace than it is to try and deny it, or convince the one doing it they must resist it at all costs. Sometimes the most difficult thing and yet most important things you can say to someone who has cancer is it’s okay – I am ready to let you go. This comes up more often than you may think. I know of cases where someone suffering an illness was not just terminal but also quite ready to die, however, they were unable to allow themselves to because they knew the people who loved them were not ready to let them go. The person who is living must transfer their own need for support to someone else other than the person who is dying, although this will never be an easy thing to do.
The second question, “If not, can you do what is required to survive?” is designed to prompt the person to consider what they think it will take to get through this. It’s far less leading or patronizing than encouraging a person to “be brave” or “fight the good fight.” A lot of people who have cancer don’t use these kinds of descriptions, and will resist you if you do. Let the person decide how they would like to now move forward, and dictate both the methods and the language they wish to use. Take your cues from them, and ask them what role if any you can play. It may well be that what you want to offer them isn’t actually what they want from you, and you’ll have to be prepared to either adapt your own expectations, or even accept a refusal of your offer of support. If this happens, try and not be hurt, but just accept that this is one of the biggest calls a person ever has to make in their lives, and it’s probably not meant to offend you. If you are offering your support, do so after careful consideration. Think pragmatically about what you have available to offer – emotionally, physically, spiritually – and do not commit to anything you don’t think you’ll be able to follow through on. It’s far better they be disappointed in you early in the piece than have you pull out at a time when they really need you. Know your limitations, and do not exceed them. You won’t be helping anyone if you do.
The third question, “If this is your time, are you prepared for it?” is only to be asked if the answer to the first question is “yes.” However, It is not an opportunity for you to subject them to your particular convictions concerning the eternal destiny of human beings. If you haven’t asked either of the first two questions, don’t ask the third unless they’ve broached the subject first. And even if they do, don’t shove your own religion or faith system down their throat, unless you shared it in the first place. While the conversation may turn to spiritual things, don’t resort to cliché’s and platitudes such as “God is trying to teach you something,” or “Everything happens for a reason.” These are circular statements and absolutely do not help.
Asking are you ready? opens up the topic of what happens next to the person, not just after death, but in the time leading up to when it occurs, and again, this for the person to decide. It might mean they want to cease treatment, resolve unfinished issues or get busy with their bucket list. Ask them what they need from you, if anything. Offer to pray for them, or with them if you think it’s appropriate, but please, not for their salvation, unless they specifically ask you to. Pray instead that God will grant them strength to endure whatever they may face next, and ask that He will encourage and comfort them. He will do it.
Let the person then decide what role you might play in this chapter of their life, and be prepared to accept their decision. I have had many friends who refused to see me when they were dying, even though I would very much have liked to see them one more time. In each instance I was given a message saying that they wanted me to remember them as they had been the last time we were together, which inevitably had been when they were looking much better and we’d been having fun together. Now if I know someone is particularly unwell, and I’m not in their inner circle of family or friends, I don’t ask to see them, instead, I tell someone close to them that I will come if they would like me to.
One thing I’ve noticed about people when they’re dying is that given the time, they will close down their life in increments, until all that is left is the most inner circle of what is important and dear to them. You may have to accept that you’re not part of that circle, and let them go in your heart way before they actually pass away. Do not make demands on a person who is dying. Unless you are the closest friend or most intimate family, allow them to let go of you when they are ready to, not when you feel you are.
You know, what it probably comes down to is that what someone who has cancer really needs the most from you isn’t actually in anything you can say to them. A person with cancer needs what we all need – compassion, support, acceptance, friendship and love, and these can be wordless. The art of being a good friend is in knowing when not to say anything, when not to do anything, and when to simply be and let others be – be here, be somewhere else, be a crybaby, a complete jerk, a nurse, a friend, or even just be the strong one for a while. However, don’t set yourself up to be the strong one all of the time either. In tough times, strength is like a dance – you both get to have some cool moves, sometimes one leads, and sometimes it’s the others turn. Sometimes, one dances and the other one sits it out. Sometimes no one dances, things are crap, and everyone goes home cranky. But you will both dance again – as long as you have the love, the opportunity, the moves and the energy, you’ll dance.
One thing I do know, if you have someone in your life with cancer, things are going to get very strange sometimes, and you need to be ready for it. People are going to say weird things, and do weird things, and the best you can hope for is that it not be you that says or does them – but it might be. In these instances, what you need is grace, both for others and for yourself. Cancer is an opportunity to learn a lot of things, and one of them is how to be gracious. Remind yourself often that you and everyone else is just doing the very best they can. Forgive often, remember the good parts, and definitely, eat much more ice cream and far less beans.

 

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