Fight For My Life

Just over eight years ago I was diagnosed with Stage 3 Breast Cancer. I thought it was the end of the world. It was such a rude shock when life had just started to look the way I had always wanted it to. 

I'd already overcome some really serious challenges in my 42 years to date, big stuff like sexual assault, domestic violence, the death of a parent, a divorce, moving across the country several times, a second marriage, a massive emotional breakdown, severe recurring anxiety and depression, chronic insomnia, an almost second divorce and the loss of my first baby. Having overcome all of that I thought surely now it was time for some smooth sailing.

Here I was living in my home town of Perth, Western Australia. In The Swan Valley no less - wineries, cafes and a chocolate factory right at our doorstep! Happily reconciled with my second and forever husband, my best friend, the love of my life, communication between us at an all time high. A well adjusted 8 year old son at school with a close group of amazing friends around him. Retired from my career job in preparation for focusing on my beloved hobby with the hope of turning it into a successful home business. I was surrounded by the most amazing tribe of women friends and of course my mum, sister and other family members.

Unfortunately The Universe believed that I could deal with still more. I was diagnosed with breast cancer in November 2011 and fought it hard for pretty much the whole next year. And at the end of the intensive treatment phase my husband and I started to put together a plan for how we could support our future health and lifestyle best going forward. 

In 2013 a plan was hatched to uproot our little family from suburbia and make a Tree Change. Our idea was to have a little land, some animals, space between us and the neighbours, to be able to grow some of our food and have a more peaceful life. As hubby works from home this was not a problem for his employment and so the search for our very own piece of paradise began in earnest. Fast forward to December 2013 and we packed up and moved to Tasmania where we have family on my husband's side.

It's a wonderful life. We have the peace and serenity we were searching for. I look out any front window to see sweeping views of Mt Wellington and the surrounding hills and valleys. We have goats, chickens and our two dogs. Our home is comfortable not flash like the last one. We truly feel at home here. (If you are interested you can check out the farm on Facebook at CallMeFarmerJane). It really is our dream come true.

Here comes the real kicker folks.  

Two years ago I started experiencing really severe lower back pain. Having already been diagnosed with osteoporosis due to a broken toe and a broken foot I was x-rayed to see whether I had somehow damaged my back. The x-ray showed an "unknown mass" in the L4 vertebra region. Of course I was already under the care of an oncologist here in Tassie for regular check-ups (to monitor my wellness) so she sent me for an urgent MRI to determine what the mass might be. A few days later she informed me that "it's just a broken back". Yes I laughed - I even attempted a happy dance - a fractured L4. I can deal with that!

That was May 2018. Since then I've done everything possible to help my back heal. Physio, careful exercise, reducing my workload on the hobby farm ... to no avail. 

Two weeks ago on Monday, I finally went back to my GP in tears begging for better pain relief. In the past 12 months the pain had escalated from my lower back to my right shoulder, left ribs and upper back also spreading to my right hip and thigh. My GP was concerned at my mental state (desperate) as well as the lack of any strength in the right side of my body. On Tuesday I had my ribs x-rayed and a CT scan of my spine. Follow-up with GP booked for the next week. However on Thursday I received a call from the receptionist asking me to come in the next day (Friday) just before lunch. 

The news was beyond a shock. Metastatic Bone Disease. Just over a week ago at midday I was told I have cancer in my bones. Two masses on my lower spine and one each on two ribs. By 2:30pm I was on my way to the emergency department at the hospital on orders from my oncologist where they gave me an urgent MRI and unexpectedly admitted me to the oncology ward. I stayed there for 5 days and had many more tests and scans while the doctors and nurses tried to stabilise my spine and get my pain under control. Further tests showed additional metastases throughout my body. I'm riddled with cancer. There's currently no  mainstream cure available. Treatment involves shrinking the tumours if possible and keeping my pain controlled, giving me the best quality of life for as long as possible.

So that's brought you all up to date for now. Except for one thing.

I turned 50 in June and that's too young to give up.

I woke up today and decided that after 9 days of giving in to anger, despair, sadness and hopelessness enough is enough. I am NOT done. This is NOT the end of my story. I believe in dreams that come true.

So the real fight starts now. Give me all the information I can get my hands on, give me traditional treatments, alternate therapies, cures in the pipeline, give it all to me and I'm going to fight as hard as I can for as long as I can. I have too much to live for and absolutely no reason to sit back and let this happen.

This is the fight for my life.

The Cost of Chronic Pain

I'm sitting here today trying to make sense of what's happening to me. I'm angry, so damn angry it makes me want to scream.

My jaw hurts from clenching my teeth so hard. My stomach hurts from too much pain medication and my head is ready to implode. Day after day, week after week and month after month I try to deal with this constant, tooth rattling pain. And no matter how positive I try to be there comes a day when enough is enough and it can't be taken in stride any longer.

I'm there now.

My anger wafts around the house in my wake and taints everyone who encounters it. My resilience is at rock bottom. Brave? No I'm not brave. I'm sick and tired of enduring and putting those I love through the wringer day after day as I try to endure. As I try to keep smiling. I'm sick and tired of barely being able to function. Of dealing with one body catastrophe just in time for the next one to hit.

Eight years ago I overcame a cancer that was predicted to kill me. During my treatment I nearly died twice. I now have severe osteoporosis. In the past 6 years I've broken a toe, a foot, 3 ribs and a year and a half ago I suffered a crush fracture in my spine.

Currently I have 3 dislocated ribs, possibly a fourth from last night, and a trapped nerve in my spine. The nerve pain travels from my right shoulder and arm, down my rib cage to my right hip and down the front of my right thigh. Shoulder to knee. Putting any weight on my right leg makes my whole side burn. The dislocated ribs on the left, just to balance things out, make it hurt to cough, to laugh, to bend and even to breathe.

A good friend once asked me who I killed in a previous life to deserve the challenges I've been dealt in this one? Why do these things keep happening to me? I have no idea but I really need to find out. Today we are debating whether to go to the ER where at the very least I can get some heavy duty pain relief and with luck x-rays or scans to seek the problem(s). Tomorrow we have our grand daughter here and I need to find some strength from somewhere before then.

I'm tired. Tired and angry. All I want is to be able to look after my family, my garden and my beautiful grand daughter in relative comfort. This pain is sapping the joy out of my days and the sleep out of my nights. It takes all my energy and shatters my peace. It's too much. Why should I have to deal with this much pain constantly and without respite. My family shouldn't have to deal with the fallout, the anger and tears of despair.

The cost of chronic pain goes far beyond the physical and the price is far too high. Not just for me but also for those I love.

Family

My husband has three sons. I only gave birth to the youngest, but I love them all unconditionally.

I love my husband very much. So from day one it was extremely important for me to make it as easy as possible for him to see his boys as often as possible and to make sure they felt comfortable and welcome when they stayed in our home. It hasn't always been easy, especially early on when there was a lot of misinformation about me going around and a lot of misplaced anger. But we persevered and I now have a really good relationship with both. Being a step parent is much harder than you can imagine unless you're one yourself. Juggling the needs of someone else's children with those of your own child without showing favouritism is particularly difficult and looking back I see how I actually over compensated and it was in fact the youngest son who missed out.

I've known the two older boys (to be fair they are men now) since they were 7 and 10 years old, more than 20 years. I've watched them grow into fine young men and though we don't share blood I couldn't be prouder of them. Both have found amazing women to share their lives with and the eldest now has a child of his own. Yes I'm a grammy now!! That's really what you want for your children (and they ARE my children too) - happiness, love and health. I want them all to have the kind of relationship that I have with their dad.

The youngest son, the one I helped create, is finishing high school in a few weeks and is off to college next year. He's currently learning to drive! He's growing into a fine young man too. He may be  bit too much like me at times (fiery temper comes to mind) but he's also intelligent, sensitive, kind and loving. He's gathering a group of quality friends around him that will hopefully see him through to the end of his teens and into adult life. I'm proud of him too. I want for him what his brothers have found in their relationships and what I have in mine. I hope the family he creates gives him as much joy as mine gives me.

In my world family is everything. When I was younger I dreamed of having a daughter, but sadly that just wasn't meant to be. Our daughter, Jessica Rose, never opened her eyes. But now I have not one but TWO daughters-in-law who I love spending time with and a grand daughter that I absolutely adore. What blessings!!

I'm not interested in travelling overseas or going on adventures. I don't need bright lights and big cities or to play tourist. I'm content, no I'm more than content, to spend quality time with family and friends. Inviting all the offspring with their families over for a big homecooked meal makes me happy. Perhaps that's my Italian heritage talking. Hosting Christmas lunch or a barbeque, Sunday lunch or birthday celebrations and welcoming family into our home. That's where I find so much joy. I consider looking after our grand daughter (Grammy Daycare) a huge honour and privilege. Although I am very tired by the end of a day my heart is always so full. 

When people talk about their exciting holidays and tell me I should go there or do that I always wonder why. Why do they think I should? This year I turned 50. I live with the love of my life and the youngest son in our comfortable home on top of a peaceful hill in an absolutely beautiful corner of Australia. I have family and friends here to fill my heart and I have dogs, goats, chickens and a garden to keep me busy. I have a creative space and the time to use it. I'm more than happy with our quiet existance here .... it's more than enough.

Family is everything to me.

Grief - Living With It and Learning From It

It's been a turbulent time for some of my friends lately dealing with illness and grief. It has me thinking of all the things we potentially lose throughout our lives and what we do with our grief.

The obvious place for me to start this discussion is with the loss of a parent, but it could just as well be a grandparent, a sibling or a child. I was 20 when my father died, cancer took him from us when he was just 53 years young. For me that grief hasn't gone away even though nearly 30 years have passed. My grief has changed and I've learned to live with it but it's still there. There are times when I glance at a stranger on the street and something about them reminds me of Dad. Times when I'm talking to my son and wishing like crazy that Dad was here to share his wisdom and humour. And every day I miss having him around. I still feel short changed because he's not here with us.

Looking back there are so many other things I've also lost over the years and for which I still grieve.

There was my first serious crush, I thought I'd never get over him. My high school friends will laugh thinking back on those times but my grief was real and overwhelming at the time. I don't think you ever really get over your first teenage crush and even now I still think of him from time to time but they are happy thoughts. 

My first love was a rollercoaster ride without a doubt ... a ride that spanned a period of maybe 5 years.  It was an on again off again relationship, more off than on, but each time the grief was harder to manage. To deal with that grief I would throw myself into anything new to the point of obsession. But I survived it and over the years I dealt with the grief and learned some important things about myself.  One of those lessons was that it's not always about me! Yep, the on again, off again nature of that relationship had everything to do with his maturity and nothing to do with my worth. I wish I'd learned that one years earlier!

During my teens I lost my innocence when I experienced both sexual assault and then much later domestic violence in my first live-in relationship. That grief took more than 20 years to deal with. It changed me and set me up for any number of negative experiences as an adult. I lost the ability to trust for many years as a result and I set a particularly low value on myself.  I was well into my 40s when I finally understood and believed that I was worthy of love and deserved better. Once I achieved that understanding I was able to release the grief around those situations.

My first marriage ended in divorce after just a year. In some ways that grief was easier to cope with because I felt so much anger at the time. I honestly believe that it's not possible to feel more than one truly extreme emotion at a time. So what I did to deal with that grief was EVERYTHING. I threw myself into so many "bad" or unwise situations that the grief was buried. I'm not sure I fully dealt with that grief until well into my second (current) marriage.

At the end of 2011 came my cancer diagnosis and a lengthy period of intensive treatment. I've spoken about this time before and probably will again in the future but here, just now, I only want to discuss the grief associated with my whole cancer journey. It might surprise you to know that the biggest source of grief was not the physical scars, or the loss of my hair. It wasn't grief for loss of physical ability or feeling well. It wasn't even the grief over friends who disappeared from my life because they couldn't deal with either my illness or how I tried to cope with it. The greatest grief I experienced during, and after, my cancer treatment was/is the loss of feeling invulnerable. Until my diagnosis I had never considered my mortality, even having been beside my dad as he fought, and lost, his own battle. But suddenly I had a life threatening illness and no guarantees that I would survive it. Even after all I went through in my teens and early 20s I still had a degree of innocence until the Big C struck. The most difficult part of surviving cancer for me has been dealing with my own mortality. And though I have learned to keep it in check for the most part I still grieve for the time when I could look years ahead into my future and make plans with no question marks.

If I'm being totally honest with myself, and with you, I still grieve the loss of innocence through each stage of my life but that grief has now morphed into a determination to make every day count. I make a conscious effort to celebrate every achievement, and every birthday, to hold my friends and family as close as I can and show them how much they mean to me and to NOT put things off for another day. To not wait for better weather, not wait until we can better afford something, not wait until some other criteria is met. I've turned that grief into purpose and motivation and gratitude.

Whatever grief you are experiencing, please don't let it take away your purpose, your joy or your future. Use it to fuel your passion and motivate you to do things, learn from it and grow!

Connie Johnson said it perfectly: "Now is awesome".

Glass half nothing.

For the past 7 years I haven't looked at my glass as either half empty or half full. I've just been truly grateful to have a glass at all.  Cancer did it's best to shatter my glass and grind the pieces into oblivion.  I can honestly say that most days, the overwhelming majority of days, I'm just so grateful to be alive that I don't dwell on my health struggles. But rarely, on days like today, I question The Universe and all it has thrown at me.

Cancer treatments vanquished the evil that tried to take over my body but they left their henchmen behind  to continually collect payment for it.  Some days the payment involves chronic pain in my muscles and joints. Some days it's broken bones seemingly out of the blue. Anxiety attacks, depression, inexplicable anger, nerve pain flares and painful scars.

Today it's the fatigue. Overwhelming and suddenly extreme fatigue. I've lived with fatigue for the past 7 years and in a way I've become accustomed to it. But this morning when I got out of bed I was already exhausted. And tonight I am so exhausted that I can't control the tears. My muscles are shaking and everything hurts. Every single cell in my body is crying out for a break.

Now I am in no way a negative person and I mostly don't feel sorry for myself.  But tonight I need to give myself permission to be angry at the hand I've been dealt. Tonight I'm asking The Universe "why me?"  and "when can I expect to catch a break?". And I'm not going to feel guilty for thinking/feeling this way either. I've earned a good cry and maybe even a good scream. Hopefully it'll be cathartic and perhaps tomorrow I'll be able to pick myself up and continue to be thankful that I still have a glass at all.

A Little Bit From Somewhere In The Book

She sat in the busy waiting room feeling incredibly alone. Her mind kept revisiting the path she had traveled to reach this moment in her life. Trying not to think of what the next half hour might hold she preferred to look back. Lost in her thoughts the time passed quickly and she didn’t hear as her name was called.

Life was looking really good. After a turbulent ten years almost ending in divorce, Sue and her husband Paul had been working hard on rebuilding their marriage and it was paying off big time. Not only were they finally starting to communicate effectively with each other, along the way they had discovered that they actually really liked each other as people and were building an awesome friendship within their marriage.

Paul and Sue were both career I.T. professionals. In fact that was how they had met all those years ago, working together on a government project. Working in I.T. was the last obvious cause of Sue’s recurring anxiety attacks. She only needed anxiety medication on the days that she traveled into the office with Paul. They soon agreed that a career in I.T. was no longer a positive influence on her health and therefore the health of the entire family. So with that, after more than 24 years in the industry, Sue had resigned.  She was ready to focus all of her energy on building her passion, her paper crafting hobby, into a home business. It was just a matter of days since she had become officially unemployed.

Sitting alone in the crowded waiting room Sue was thinking ahead too. There was so much to look forward to in the next few years. Not only was their little family back together and becoming happier and stronger than ever, but soon it would increase in size by one member. The cutest, tiny puppy would soon become part of their family. At 8 years old Alex had never had a pet at home, other than fish that is, and her son was radiating excitement like a supernova. They had first met the litter of pups when they were just 2 weeks old and had visited twice more since then, when the puppies were 4 and 6 weeks old. It really had been love at first sight with the curly little girl choosing them every time. Each time they placed her back with her litter she made her way over again and into a lap. This weekend they were going shopping for a bed, bowl, collar and toys for the little girl who had already wormed her way firmly into the hearts of all family members.

There was also Sue’s paper crafting hobby. She loved everything about it from the buying of supplies to dreaming up and creating projects for classes as well as finished items for customers. Nothing spoke of a day well spent better than ink stains on fingers and glitter specks on your face!  The lovely people she had met through her paper crafting hobby all shared her passion for paper and ink, glitter and glue and became like extended family to her. Their friendship and support gave her the warm fuzzies in a really big way, they were like minds with hearts of gold.

Glancing up at the clock on the wall she sighed and wondered if she’d get back in time to pick Alex up from school. Maybe she should send a message to Laura and ask her to take him home with her after school. Laura’s son was Alex’s best friend at school and they lived just a block from the school. Yes, she should send that message before she went in to the GPs office.

Message sent she got lost once more in thoughts of how she had arrived at this moment in her life. Her mind went back to the weekend which had been busy but reasonably uneventful. They had gone out for a lovely family lunch at a local winery and then caught up on some long overdue jobs around the house. One of those jobs was moving some furniture between the 2 spare bedrooms. The larger room was to become her crafting space and though she probably shouldn't have been lifting the heavy pieces of furniture with Paul, she really wanted to move into her space. Somehow Sue had managed to hit her right breast and the front of her shoulder on a solid timber bookshelf. It hurt like holy hell when it happened but she really didn't give it much thought for the rest of the weekend. When it was still very painful on Monday morning it did start to worry her a little.

Sue had been up early as was always the case on weekdays. Even though she no longer had to prepare herself for a day in the office there was still Alex to get ready for school and breakfasts to prepare. As soon as Paul had left for work she had walked Alex up to school and then headed down to the oval for a walk with her friend Donna. Leisurely laps of the grassy oval and much conversation, sunshine and fresh air, friendship and freedom, nothing could dampen the happiness of the day. They had chatted constantly as they walked and Sue had mentioned her injury and that it was still painful. Donna had volunteered the name of her female GP as Sue was absolutely not prepared to go to her young, good looking, male GP and bare all to have a sore spot on her breast checked out. Silly perhaps, but having preferred female GPs all her life it felt more comfortable. After the walk she had gone home and phoned, expecting a lengthy wait for an appointment, but was pleasantly surprised that they had a cancellation. There was an appointment available the next morning so she had booked herself in.

Tuesday morning had arrived and Sue cheerfully headed off to meet the new female GP.  Thinking back she wasn’t sure exactly what she had been expecting but it wasn't what actually happened on the day. Having showed the doctor the sore spot on her breast, which coincided with what she had assumed was a small patch of eczema on her skin, she found herself being referred.  At the ripe old age of 42 she was told to book in for her first ever mammogram and possibly an ultrasound to follow. Interesting how the human mind works but somehow she hadn’t been concerned at all. Not concerned at being referred for a mammogram, not concerned that the referral was to a private radiology clinic in order skip waiting lists. It just hadn't seemed unusual or concerning. When she got home Sue had phoned the clinic and was told they couldn't fit bookings for both together but could do the mammogram on its own the next day.  Of course she had taken the booking thinking she could always go back the following week for the ultrasound if it was required.

On Wednesday Paul had taken the afternoon off work so that he could drive her to the radiology clinic (even though she had been more than positive there was nothing to worry about) and off they had gone, oblivious to what lay ahead. After checking in, Paul was left sitting in the main waiting room while Sue was taken through to change into a not very glamorous hospital gown. Once changed, she had waited alone in a different area until called through for the scan. She shivered slightly recalling the whole excruciating experience.  After the scans were finished and the doctor had looked them over she’d been told not to get dressed but to sit in the little waiting area again while they tried to squeeze her in for an ultrasound between patients. At this point warning bells would have started ringing wouldn’t they? Nerves would kick in? Nope. Nada. Sue thought they were being very nice trying saving her the trouble of coming back the following week. It never entered her mind that something was wrong, very, very wrong. Denial is a safe and happy place to live.

 

Ultrasound over she had been told to change out of the lovely hospital gown, pay the account and then wait in the main area for the films to be printed. As they waited in line to pay a nurse had come over with the films and told them not to worry about the account as it would be bulk billed.  What? Was bulk billing even done in a private clinic? (Sue had later discovered this is often done for oncology patients). The nurse had said to go back to the GP the following day for the results. Sue had laughed. Local GPs usually had a wait of at least a week for appointments, but apparently the radiology doctor had already spoken to Sue’s new GP and she would definitely see her tomorrow. She had thought that a bit strange, interesting even, but there were still no alarm bells ringing. Denial is a crazy place to be.

And so here she was sitting in the waiting room alone. Paul had offered to come with her, so had her best friend Kayla, but she’d decided there was no need for hand holding or moral support, she wasn't sick. So she had come here alone. In a room full of people she was feeling very much alone. She didn’t hear when her GP appeared at the entrance to the waiting room and called her name. She looked up as a shadow fell across her face, “Sue, you can come through now”, her GP was smiling down at her kindly.

Finally they were sitting together in a closed office and the doctor started talking very gently. At first Sue didn't really hear what was being said, didn't comprehend the words. But looking up into the doctor’s face as she spoke, Sue started to hear through the haze of denial. When she saw the tears glistening in the doctor’s eyes, suddenly she could hear her words and understand them:

"I'm so sorry Sue, you have breast cancer".

What Makes It A Good Day?

I am not a lazy person, I never have been. It's not in my nature to be still for long. My preference has always been to keep moving, doing and achieving.  Constantly writing page long lists and furiously crossing items off one after another after another.  The more items crossed off, the better the day. My natural inclination is to be busy and to fill every moment in a day until it's time to sleep. And having moved, done and achieved a lot then to sleep soundly before waking up the next morning ready to do it all again. That was what a good day looked like to me.

But that was then. That was before anxiety and depression. Before chronic insomnia. That was before the ongoing fall-out from intensive cancer treatment. Before adrenal fatigue and chronic pain. That was before.

Now a good day looks very different to me. A good day is one that doesn't involve taking pain medication simply to be able to get out of bed. On a good day I feed my family and my animals, get my son to and from the school bus and maybe cross one additional thing off my list. That list, that page of writing, covers a span of a week or more now, not just a single day.  Now a good day is one without tears of anger or frustration and without anxiety.

I understand that it could be easy for someone else to see my stillness, my lack of activity or achievement, and assume that I'm a lazy person. Even those closest to me don't see the real struggle, because I always try to stay positive and keep smiling. I don't complain often, at least I try my best not to, because I know how lucky I am to still be here, sleepless nights and chronic pain aside. It's a huge mental shift to go from "Wonder Woman" constantly achieving to "Mrs Average"(or is that "Mrs Below Average"?) just getting through the day. To go from over-achiever to barely-achiever. 

The best piece of advice I was given when I started my cancer journey was to "learn to embrace the new you". Simple huh? It really is great advice and although it sounds simple it's actually incredibly difficult to do. What it comes down to, I think, is finding peace with those limitations I can't remove. It's about accepting that I can no longer do all the things I was used to doing myself and most importantly accepting help from others so those things can still get done even if not by me. It is incredibly difficult to do but very slowly I am beginning to understand my limitations. I think I get better at it every year. 

I'm not a lazy person. What I am is a survivor finding and trying to accept "the new me". Finding isn't so hard, it's accepting that's still a work in progress.