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 – #12 Not My Time

Today, a friend asked me:

“Name something you did today with all your heart.”

It was an easy question to answer.

Today I wrote some words about another day a few years ago – the day I decided I wanted to be alive for the rest of my life.

I was about halfway through my radiotherapy treatment, and the most ill I’ve ever been. Three months of chemotherapy, a stem cell harvest, blood transfusion, six weeks away from my family and a very nasty case of shingles on top of everything had pulled me down further than I’d been in my life, physically, emotionally and mentally. I honestly felt like dying was a reasonable, comfortable option, if going on living was going to be anything like that.

I slept – thank God, I slept – and dreamt of swimming. I swam laps and laps, up and down, all the time watching the bottom of the pool, wondering what it would be like to live down there. After swimming laps in my dream for what seemed like hours, I wanted to stop and just rest a while.

At the end of the last lap I don’t tumble turn, instead letting myself just sink into the deep end. I slowly drift to the bottom, unafraid, happy to be at rest. I stop breathing. I let my arms and legs just hang there. I close my eyes and start to drift off. Just what I need – a long, long sleep.

I am startled by a sound – a voice – a muffled scream. I feel a boiling in my throat. It’s my voice. I am screaming.

Image credit: iStockphoto

I shake myself awake from the dream. It’s not my time. This is not when I get to stop living. I must keep on being alive, and only I can do it. Keep swimming, keep going. This will not last forever. Keep breathing. Don’t sleep now.

I dredge my soul up heaving from the bottom of myself. I know it was close, as close as it gets, but here I am.

—–

I love today, every today, because every today I am here to write about that other day when I had the choice whether to hold out for a day like this. I will never cease to be astonished at how bright and close every day is to me now. I don’t have to swim so hard anymore, but the practice has made me lean and strong. Strong enough to hold my own, and others’ too. Strong enough to bear to remember when death whispered in my ear and made me think that sleeping would be better than waking, sinking better than swimming, dying better than surviving.

Name one thing I did today with all my heart?

I lived.

*****

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Some Of My Cancer Photos

Yesterday, as I was editing my blog on my 2011 Bucket List, I was looking at the photos I have on file of when I had cancer. I haven’t got many scanned in, just a few, but in the next few weeks I think I might dig some more out.

I thought perhaps you might like to see some of them.

This is me having my second chemotherapy, I think my first week back from Sydney. This day, I lost it about half an our before this pic was taken. I was in such a hysterical state, Vanessa, my chemo nurse, told me a few years later “You know, when you first came in, I thought you were going to be one of the ones who didn’t make it.” I wasn’t strong, I wasn’t brave and I wasn’t ‘battling cancer’. I was scared shitless and had no idea what was going to happen to me. This photo reminds me that no matter what someone with cancer looks like on the outside, it’s got nothing to do with whats’ happening inside.

This picture was taken a few days after the last one. This is the night my hair fell out.

We were sitting there watching TV when I put my hand to my head and out came a huge clump of my hair. The kids and I and Ben just sat there looking at each other. To try and lighten the situation, I pulled it out in handfuls and we made moustaches out of it. I have another photo not scanned in with all of us with a moustache like this one.

After about 30 minutes of this hilarious fun, and it was, Ben and I slipped out to the garage and he shaved the rest off.

This is a promotional shot I had taken to put up on my website at the time. I was selling a range of patchwork and stitching patterns and needed a picture for my site.

I look well, don’t I!

What a fetching hat. I was pretty much done with chemo at this stage I think and about to go away for radiotherapy.

This is me and some of the friends who made me the quilt you see in front of me. This quilt is my most treasured material possession and still hangs on my wall today. If the house catches fire, this baby comes out with the kids, the dog and my laptop. Husband fends for himself.

This quilt was puked on, cried into, wrapped around me as I slept alone in the hostel while I was away for two months in Sydney having radiotherapy, as well as pawed at and paraded to all and sundry everywhere I went.

This quilt is love with mitred corners.

I have others, but they’re packed away. I’ll try and get them out in the months to come, especially as the book progresses toward being finished.

Thanks for looking :0)

Five tips for dealing with your Mystery Illness, which probably isn’t cancer.

About that mystery illness of yours – I have good news….and bad news. The bad news is that nine years ago,  I too had a mystery illness, which turned out to be cancer. Now for the good news. Ever since, I have had at least twenty-two mystery illnesses which have turned out to be absolutely nothing of consequence at all. So whilst I’ve certainly had the worst case scenario when it comes to mystery illnesses which, happily, I survived, I’ve also had numerous best case scenarios ever since. Many more best case than worst case. Touch wood.

I’ve actually just gotten home from the doctor myself, because I’ve been sick for the last 36 hours. You’re right – It’s probably nothing. But you’ll have to forgive me…old Dr. Do-Nothing told me that for seven months in 2003 before I was finally diagnosed with late stage lymphoma, the bastard. I should have sued.  No thanks for the anxiety disorder, jerk.

Anyway, being as I am the expert when it comes to dealing with mystery illnesses, here are my top 5 tips:

#1 – Never,  Ever Google your symptoms.

Even though I do this myself every single time, I strenuously advocate against it. I’ve found that when it comes to the internet, when it comes to horrible diseases matching your symptoms, you’ll inevitably find precisely what you’re looking for. In the last twelve months, I’ve diagnosed myself with nasal cancer, labyrithitis, vocal cord nodules, multiple sclerosis and migratory arthritis. I’m fairly certain I could also diagnose myself within the next fifteen minutes with mid-life crisis, a panic disorder or three and most certainly leukaemia. Don’t try this at home. Just take yourself off to a doctor and tell him everything.

#2 – Make a record of the illness.

Write down exactly what’s happening to you in a diary, and include the date and other details such as your temperature, whether you vomited, had diarrhoea and any other relevant information. This will help if the illness is recurring and you can’t remember what exactly happened before, and help you remember how long it’s been going on. It may transpire that your illness has something to do with environmental or seasonal factors, or even with other cycles going on in your body, and a diary or journal will help you to recognise this. It can also help when you need to check exactly how many times before this exact same set of problems turned out to be nothing. But don’t show anyone your illness journal unless they are your very good friend, or they may think you are plotting munchausens-by-proxy. Google that.

Hint #3 – See your doctor soon. And see the same doctor as you’ve been seeing.

Your doctor has a record of things you’ve been to see him about in the past, and when you saw him about them. Many illnesses take time to develop into something nasty, and if you stay away from your doctor, or go to see another one because you didn’t get any action last time, you’re interupting the continuity of your medical record. True, I went to see a doctor for many months with serious symptoms, and he didn’t diagnose me with the cancer I had, but the cockles of my heart are warmed no end knowing he has on file a record of my determination to find out what was wrong with me, a record which is available to my current doctor, should he need proof I am not an insane hypochondriac. And I like to think that file keeps my old Dr. Dumb-Dumb awake at night wondering what he might have done differently.

Hint #4 – Be honest

Don’t exaggerate or your doctor will think you are actually an insane hypochondriac.

Hint #5 – Take Paracetamol and wait 24 hours

Don’t bother presenting yourself to the emergency department after you’ve just been feeling a bit off colour for three hours. You have to be expelling a lung out of your mouth and bleeding from every other orifice for them to even show an interest in you in the first place. I went to the hospital once with a couple of broken ribs, and it wasn’t until I had been hyperventilating in the waiting room for three hours and actually passed out on the floor they even noticed I was there. And it wasn’t the staffs fault. They had a waiting room full of everything from the sniffles to fractured ankles to deal with in order of urgency. I’d have been better off unconcious in the comfort of my own living room, except that fainting in the waiting room conveniently got me some morphine.

NOTE  – Traumatic and accidental injuries, anything which causes loss of conciousness, slurring of speech, bleeding and/or chest pain must be seen as a matter of urgency. In the event you experience these symptoms, call 000 (Australia) or 911 (USA), and present to your nearest hospital as soon as possible.

Most other problems can wait until you can get to a doctor, and may even pass within twenty four hours. So don’t panic. In fact, not panicking is actually number 6 on this list, and should perhaps be number 1.

Today, my doctor – I changed doctors after my cancer diagnosis, by the way – ordered some blood tests, which he very well knows is one way to make me feel much better already. I’m blessed to have a GP who is understanding of both my real and very colourful medical history, and my penchant for illness-related anxiety.  He’s patient, and very firm with me. I’ll get my blood tests, but he’s told me more than once to get on my bike when I’ve asked for CT’s, biopsies and a radioactive iodine scan, or two. Besides, if I have one more scan, I’ll probably be responsible for my own leukaemia.

Good luck 🙂

 

Things Not To Say To Someone Who Has Cancer

In July 2003, I was diagnosed with aggressive Non-Hodgkins Lymphoma. At stage 3B (there are only 4 stages, and B means it had begun spreading around my body) the tumour in my chest was as big as a saucer. My treatment consisted of three months of chemotherapy and six weeks of radiotherapy. During this time, we had the wonderful opportunity to be supported by a church community who cooked my family hot meals most evenings and provided nothing less than amazing support.

However, as well as the good, there was the bad and the downright ugly. There were times when I wondered what belief systems people limp around with, and about what was being preached in churches and printed in books about sickness and supportive care. For the information of those wishing to be a support to those with cancer or other life-threatening illnesses, I offer the following. This list will be based on actual statements which were made to me either whilst I had cancer or in the months following my successful treatment.

What doesn’t kill you makes you stronger. This comes from the idea that adversity breeds resilience. Often and ideally it can do just that. However, what doesn’t kill you can still frighten you witless. Being told you have cancer and may not see the year out, let alone never your children grow to adulthood, is a soul-withering concept, often accompanied with a varying range of intense emotions which may last days, weeks and even months. Being told that if you don’t die, at least you may end up having a more highly evolved character is not particularly comforting. Being told there is a chemotherapy that will get rid of your cancer is.

My friend/cousin/uncle/neighbour had that, and they died. A clear example of how the truth doesn’t always set you free.

Just pray, and God will heal you. Sometimes people recover from cancer, and sometimes they don’t. Sometimes, people pray and cancer goes away, sometimes nobody prays and cancer goes away. Instead of the above, tell them sincerely “I will pray for you”, then go away and actually do it.

You must have unconfessed sin in your life/family lineage/household. This statement serves no purpose whatsoever, as condemnation has always failed in facilitating repentance anyway. The precursor for cancer is possession of a human body in a messed up world. If you believe and plan to say the above statement, be prepared to back it up with Scripture. Because you can’t, and you and I both know it, I am already primed to come to your house and punch you in the mouth if you actually go ahead.

God is trying to teach you something through this. When I was little, my mother taught me to avoid touching the hot stove by holding my hand on the heat until I screamed in pain and had to be hospitalised for months. Not really. My mum loves me. She found other ways to teach me which wouldn’t leave me permanently disfigured and hate her forever.

You don’t need chemotherapy, you just need faith. David was assured by God he would be valiant over Goliath, but he still used a rock and a sling. And he finished the job with Goliaths own sword. If you have issue with “worldly” medicine, I say fight fire with fire: after all, disease is not a condition that occurs in heaven.

I would love to come around and see you. What you probably mean is “I would love to come around and look at you. I would like you to see my sad face, and my “coffin eyes”. I would like you to hear all the things God/my neighbour/the internet has told me about your disease and how to become better.” The last thing someone who has cancer wants to be is an exhibit. Don’t get a committee together from the church for a drop-in and expect to be welcomed. We had to put a sign on our door to stop people just wandering into our home uninvited to “see” me. Having cancer does not cancel out a person’s dignity or right to privacy.

I have a book for you. Please do not take your book, especially if it is about special cancer curing food, juice or vitamin supplements. Most cancer patients have a television, a phone, a car, the internet, and access to every store that you do. Offer to get them anything they would like that they can’t seem to be able to get for themselves. If they want to know about the Praise Jesus Diet or some Guatemalan beetle juice, then they will call you and ask you to get it for them.

I can make a lasagne. Anything but lasagne. They have probably had as much pasta bake as they can eat brought by well-meaning friends and relatives. Be creative, call first with the offer, and actually follow through. And please don’t expect them to remember that you sent it in Aunty Betty’s special wedding present casserole dish. Stress does funny things to the memory. They will be hard pressed thanking you, let alone getting your heirloom back to your house.

Tell me everything. I knew people understood what I was really going through when they didn’t ask me to tell them.. After being prodded, poked and punctured, and having my bodily dysfunctions discussed in minute detail the last thing I wanted to converse about was cancer. I wanted someone to look into my face and really see me, the person inside the body. Now some people like to talk about their disease, treatment and operations with great animation and detail: they may be enemy focussed, and if this helps them, well, great. I find that most people with cancer will enjoy an opportunity to talk about the outside world, the place where living occurs: normal life. Indulge them, not your own morbid fascinations.

Well, we all have to die from something. If you had walked among the dying, you would never speak of death so lightly.

I lived with a man who in his last weeks of life was dealing with the fact he caused his own lung cancer and would soon be leaving his teenage son behind. I also lived with a couple who had saved up all their working lives so they could travel, only to have the husband diagnosed with brain cancer two months after retiring. I met countless young women who lost the breasts they nurtured their children at, and the partners they conceived them with, because of what cancer brought into their world. I know a woman who died of mouth cancer who I am sure would rather have died of anything else. In the end, her face was eaten away, and she was unable to eat or kiss her husband, who remained faithfully at her side until she died. Six months later, he was diagnosed with prostate cancer.

Yes, everyone must die sometime, of something. The fortunate ones are blessed with the time and the opportunity to ask themselves the following three questions: Is this my time to die? If not, am I able to do what is required to survive? If this is my time, am I prepared? If you are in a position to be beside someone who is faced with these questions, pray for wisdom to help them find their answers, and for the strength to walk beside them through their valley of the shadow. And remember, whenever you are with them, it really is all about them.

No, It Isn’t Breast Cancer – Raising Awareness of the Issues Caused By Raising Awareness

I want to share with you just one part of a particular conversation I seem to have quite regularly. It usually begins when someone says to me, “Did you hear, such-and-such has cancer. Isn’t it terrible?” and I might say something like,”I heard. Did you know I had cancer?” “Oh really? When was that?” “In July 2003.” “Oh my God. Are you all right now?” “Yes, thanks, I am.” “Did you have treatment?” “Chemotherapy and radiotherapy.” “Wow, and you have how many children?” “Four.” “Oh, that’s awful. I can’t believe it.” And then, the inevitable. “And which breast was it in? Did you have to have a mastectomy? Do you have a prosthesis?” “Well, no, actually, it wasn’t breast cancer.” Blank expression. “Oh…….really?” Because everyone knows; the only cancer women get is breast cancer, right?

Donate to the NSW Cancer Councils Pink Ribbon Day to help raise money for breast cancer research.

Now before I go any further, I will at this moment bestow well-deserved kudos of heroic proportions to the millions of men and women who have campaigned and still campaign to increase awareness of breast cancer worldwide. God knows, it needs to happen. Breast cancer is an insidious, sometimes disfiguring, always frightening cancer that can rob families of their mothers, partners, wives and daughters. Breast cancer is a horrific disease that, thankfully, we are learning more and more about every day, due to the billions of dollars raised by communities all over this planet, and thanks to ever-improving early screening and detection programs. The lives of breast cancer patients are not just being saved but also salvaged, thanks to greater understanding of the psycho-social effects of breast cancer on women, their carers and their communities, lives, livelihoods and relationships.

Having said that, I will return to the point, because everything I have just mentioned isn’t actually my point. Increasing public awareness of breast cancer, it could be said, has been a resounding triumph overall. It could also be said that breast cancer and all the various products and services related to it now have such a high media profile that breast cancer has become almost commodified in itself. Associating your event or brand with breast cancer in some way is likely to increase your profits and positive consumer sentiment toward your product like few other actions could. Unlike a lot of very disgruntled prostate cancer advocates, I stop short of calling breast cancer the ‘sexy cancer’, but you have to admit it has all the hallmarks. When I worked in advertising, I learned that either fear or sex will sell just about anything. Somehow combine the two and you have an advertisers dream. The female breast holds a veritable hemisphere of marketing power in our society. However, unlike ads which are aimed at increasing awareness of the link between lung cancer and smoking, we never see a single image of an actual diseased breast. We save boobies for the beer ads. It’s all about brand association, and the brand for breast cancer is the colour pink.

Long associated with all things pertaining to youthful, sweet, feminine innocence, pink has been universally substituted for any actual physical images pertaining to the disease of breast cancer. Pink ribbons, pink t-shirts, pink logos and cricket stumps and bandannas. Now, as I see it, two obvious problems associated with identifying everything to do with breast cancer with the colour pink are: 1) Not all women who get breast cancer can identify with the colour pink and what it represents – submissive, baby-like femininity. And 2) Not all people who get breast cancer are actually female. Some of them, more than you probably think, are men.

Here’s another conversation I’d like to relay to you. My friend Gary has something resembling the following interchange every other day of his life. “Did you hear? Frank just got told he has cancer.””I heard. Did you know, I had cancer?” “No way, really?” “Yes, actually, I’ve just finished treatment.” “That’s terrible, mate, I’m sorry to hear that. What kind of cancer was it? Prostate? Bowel?” “Actually, I had breast cancer.” Incredulous stare, awkward silence. Do men really get breast cancer? Where do you go with a conversation after that? Well, yes, men most certainly do get breast cancer. And Gary has really nowhere to go with it, in just about every real sense. Nowhere in conversation, nowhere in the community, and certainly nowhere for the most part in terms of supportive care and services for his type of cancer.

Many hospitals in this country now have, thanks to the militant findraising efforts of outfits like the McGrath Foundation, breast cancer or breast care nurses on staff. Female nurses; attuned primarily to the issues female breast cancer patients have with their disease, Gary feels. Issues such as body image, as concerning women in a society where breasts are worshipped and commodified. But male breasts have no such commodifiaction attached, except perhaps for the negative social connotations of man-boobiness, which can be made even worse when telling someone you have what is primarily considered a womens disease.

Gary has been lobbying the local breast cancer support group to allow men to join in their meetings. The groups management were initially resistant, and Gary believes only changed their minds when they realised the legal implications of excluding him and other men like him. He came back to the general cancer support I facilitate to report to us that they had, in the end decided to allow men to attend their previously exclusively female meetings, and had even changed the wording on their brochure. But Gary decided he felt more comfortable in our group, because we are not cancer or gender specific or exclusive. Yes, there is such a thing as cancer snobbery, believe me.

Increased awareness around breast cancer is a double edged sword; it seems the very changes in perception and awareness concerning breast cancer that continue to save lives have also created a set of assumptions which are perhaps as dangerous as the initial ignorance ever was. Many women seem to assume breast cancer is the only kind of cancer women are in danger of dying from. However, cancers previously mainly associated with men such as lung cancer are killing increasingly more women, as young women continue to take up smoking in greater numbers. It is interesting to nore that while breast cancer is a disease which threatens to physically disfigure, many others cancer, such as bowel and lung cancer, are perhaps percieved to have invisible and perhaps less disfiguring consequences. Women don’t seem to believe lung cancer or bowel cancer would affect them the way breast cancer might. They fear having a breast taken more than they fear having a section of bowel or part of a lung removed.

Research shows that many women actually continue to smoke because they believe it will keep them thin and attractive. I can tell you, I lived with a woman who had mouth cancer during the last few months of her life, and while she certainly kept her trim figure, it was mainly because she could no longer eat solid food through the rotting crevasse that was her mouth. I find it to be a peculiar conundrum that despite the graphic pictures on cigarette packets, women are more afraid of losing their breasts than having lung, head or neck cancers. The sad fact is that most breast cancer, caught early enough, can be treated and even cured, but by the time most lung cancers are detected, it is usually too late.

Women these days are very well-trained to check their breasts, but I wonder if this has given women generally a false sense of confidence regarding the early self-detection of cancer. While we are busy feeling ourselves up in the shower, are we ignoring that weird mole, or pretending we didn’t see the blood in our bowel motions? I think women are being programmed to believe that breast cancer is the only cancer they need to worry about, particularly if they are young and otherwise healthy. I was diagnosed with stage 3B (there are only four stages, and B means it had begun metastasizing) Non-HodgkinsLymphoma in my mid-thirties, and even my doctor was unable to be convinced there was anything wrong with me…until I presented to the emergency department of my local hospital on the verge of collapse. I had a perfectly healthy pair of d-cups – pity about the tumour the size of a saucer lying 3cm deeper under my sternum. But no one thought to check in there.

I have a friend who, like me, was diagnosed a few years ago with cancer in an advanced state. However, unlike me, she can’t talk about her diagnosis in general conversation, because no one wants to talk about vulval cancer. She didn’t even know there was such a thing. However, gynacological and blood cancers are not considered to be statistically rare in women. Not rare….just unheard of – literally..

So, this month being breast cancer awareness month, I would like to advocate another kind of awareness. While we are pinning on pink ribbons and passing around sentimental chain emails, I would like everyone to remember that not all the cancers women are diagnosed with are breast cancers. Check your boobies by all means, but check your moles and your motions too. Check your rashes, your rude bits, your lumps and your bumps, where ever they may be. Take that funny cough off to the doctor too, and for crying out loud, stop smoking. Also, please be aware that not everyone diagnosed with breast cancer is female. Many breast cancer patients are men and will never be acknowledged, serviced, celebrated or lauded the way many female breast cancer patients and survivors are. They are more likely to be isolated from support services and treatments, marginalised by stigma, and sometimes even ridiculed because of their disease. They face many of the same issues that women breast cancer patients do, but in reality have access to fewer resources and less information which is gender specific to their disease.

Personally, I will be thinking of the many friends I have lost to breast cancer, the amazing and heroic people I am blessed to count as friends who have survived, and those I know who are currently having treatment. I will also be remembering the hundreds of people I know who have journeyed through many different kinds of cancers, some of which you may never have even heard of; people who are not pop stars, or wives of cricket players or even particularly special or brave. Their cancers will be just as unfair and tragic and disfiguring and painful as the ones you’ll see on TV this month. I actually wish there were a month for every kind of cancer, but there aren’t even enough days in a year for that.

I ask of you all just two things: 1) That you may remember not every person diagnosed with breast cancer is female, and 2) That not every woman diagnosed with cancer has breast cancer. I actually hope to increase awareness that increasing awareness of cancer is only one side of the story. The other side is the responsibility we all have to become aware of the scope and effect all kinds of cancer have on a diagnosed person’s family and friends, on the community and on our society as a whole. Now that’s what I call cancer awareness.