Enough!

I woke up this morning feeling fragile. I often feel somewhat fragile, constant pain can have that effect on a person. But when I got out of bed this morning, and ended up in a heap on the floor as my right leg collapsed, it only got worse. I have had ENOUGH of this god forsaken year and the "challenges" it has brought us.

CHALLENGES?  I have tried so damn hard to look at the things that have gone wrong this year as challenges but let's be honest for a minute and call it as it really is. Metastatic breast cancer is not a challenge it's a death sentence! There is NO CURE just the uncertainty of how long it will take to kill me. The challenge is in trying to remain positive knowing that this disease has burrowed into my bones, has spread throughout my body and is just waiting for the chance to finish me off. The challenge is trying to live some kind of normal life while doing all the "things" that might help keep the beast at bay a little bit longer. Oral chemo is a challenge, three weeks of daily tablets during which time I slowly feel sicker and more fatigued. This followed by a week of no chemo, giving my body a chance to recover slightly in the hope my blood work shows I'm well enough to start another cycle of chemo and then repeat the process. I'm officially in remission now so another challenge is in not knowing how long these drugs will be able to keep me there.

I've had ENOUGH of putting on a brave face and smiling when all I really want to do is cry. I did cry this morning and ranted to Pete and got a lot of things out that I've been bottling up inside. I'm not going to apologise for being upset and angry and I'm not going to keep my feelings quiet so that everyone else can feel more comfortable. I'm angry and confused and very unsure about this journey and the steps I've taken to improve my odds in this fight for life. I don't just want to survive longer - I want to LIVE longer and I'm really not sure that's what I'm doing.

When I was first diagnosed in February I changed my diet completely. We've read so much research showing that consuming animal products will feed hormone positive breast cancer as would eating sugar and carbs. So I went vegan and gave up my beloved coffee, all sugar and all grains. More research followed and I stopped eating fruit because fructose is converted into glucose and glucose feeds cancer. Well I've had ENOUGH of all that too!! My blueberries and raspberries are fruiting right now and I'm going to enjoy them! Yesterday I drove myself crazy craving a piece of cheese. Last night I just wanted a single piece of chocolate.

Another lovely surprise this year had for us was Pete's Myeloma diagnosis in July. Because my illness wasn't ENOUGH for us to be going on with. His stem cell transplant and recovery has meant that we didn't really "do" Christmas this year. We isolated from family and friends to protect him and in all honesty I am too exhausted after his stint in hospital to celebrate in the traditional ways anyway. No way am I up to cooking a full Christmas spread. So we stayed home alone, just Pete and I (and the dogs), and took some Christmas selfies with his chemo bald head for the photo album.

Well that's ENOUGH! There are only four more days left of this horrible, miserable year thankfully. 

This awful year has taken ENOUGH from me already: my health, my husband's health (and therefore my rock), my peace of mind, my sense of control, my optimism, my annual trip to Perth to visit family and friends and the ability to care for our granddaughter (oh don't even get me started on how devastated I was that my treatment shut down Grammy Daycare). I'm not prepared to surrender one more thing to this year and I'll be staying up until midnight on New Year's Eve just to make sure it truly ends.

ENOUGH!

Hope Out Of Fear

Being told you have a terminal illness is terrifying. The moment in February when I heard the words "metastatic bone disease" my brain shut down and adrenaline took over. At the same time my stomach tried to turn itself inside out and I had to fight to keep my breakfast down. Suddenly I was no longer healing too slowly from a fractured vertebra, instead I was dying far too quickly with cancer in my bones. When I got home from the GP Pete and I cried. He held me tightly and we cried until we felt empty, until there were no more tears left(for the time being). 

Later that day, on doctor's orders, Pete rushed me to the Emergency Department for an urgent MRI. I didn't leave the hospital for almost a week. During that time I was scanned, re-scanned, jabbed, medicated, poked, prodded and generally treated like a cancer diagnosis that happened to have a person attached to it. My diagnosis and treatment snowballed without any input from either Pete or I and I started to feel somewhat disconnected.

On my second morning in hospital a dear friend came in to see me (this was just as Covid restrictions were starting to ramp up). She walked in the door and we both burst into tears. We clung to each other as if she could somehow protect me or shield me from the cancer that had invaded my body. They were the first tears I had cried in hospital, and from memory they were also the last.

By the time I got home I was angry, frightened and desperately sad. I went through all the stages of grief multiple times over, in a seemingly never ending cycle, denial, anger, bargaining, depression and finally acceptance. I was angry a lot, angry that The Universe kept throwing these challenges at us but I was so tired. Too tired to rise to the challenge, or so I thought. I went into denial at times, refusing to accept that this was happening to me. After all we had done for our health and lifestyle after my first cancer diagnosis in 2011, including moving across the country to our tree change in Tassie, I couldn't accept that it was going to kill me after all. The final stage was acceptance. While I have accepted the diagnosis now, accepted that I have cancer in my neck, spine, ribs, shoulder, hips and pelvis, I have not accepted that it will kill me as soon as the doctors predict.

Being told that you have a terminal illness can also be a catalyst for positive change, for greater joy in living and gratitude for all the small things in life. After months of grieving I did finally find peace with the disease invading my body. I don't want to die and I certainly haven't stopped fighting. I truly believe I'm too young and have too much to live for to simply let the cancer win. I'm definitely not going to let my health situation stop me living my best life possible. If I only have 3 to 5 years left I'm going to make sure they are jam packed with living, loving, laughing and maybe even some dancing (on my best days). So while I've begun to fight back I've also taken stock and made myself (and Pete) some big promises. 

I promise to keep fighting, to do everything I can to stack the deck in my favour. I promise to live every day rather than merely exist. I promise to keep hoping, to not give in to despair no matter how difficult some days are. I promise to become a better person through this experience. Finally I promise that every single day I will find at least three things to be grateful for and speak them out loud. 

Today I'm grateful for the blue wrens who visit our garden most days, for the sunshine on my face and for my wonderful husband, the father of my children, to celebrate on Father's Day. 

Everyday I'm grateful to have another day. I'm grateful to be able to get out of bed, to prepare delicious and nutritious meals for my family and to have another day to live, laugh and love. I'm grateful for zoom meetings that enable us to "attend" Tai Chi classes from our own living room. I'm grateful for all the information available on the internet that helps us plan ways to support our treatment and give us both better odds than traditional oncology alone is offering. I'm extremely grateful for our local naturopath and our integrative GP who both specialise in oncology support. Grateful for the generosity of friends, family and strangers that has enabled us to afford complimentary therapies which would otherwise have been out of reach. And grateful for the strength and stubborness of my amazing husband who won't let me give up even on really tough days. 

I'm grateful for hope because at the end of the day another 3 to 5 years is not enough.

A Few Words From Pete

Cancer is an insidious c**t. It tries to inflict maximum damage while hiding itself from the body’s natural defences. If you fight it, it comes at you from another angle, always looking for ways to do harm. It really is a horrible, sneaky, vicious little f***er.

As you may have guessed by the more colourful language, this isn’t Sandi doing the blogging, it’s the other half of the team, Pete. I thought that I’d jump in and share some of the spotlight with her this week. If only I had been clever enough to restrict that spotlight sharing to the blogging as will become apparent when you read my ramblings.

Most if not all of you reading this already have some sort of relationship with Sandi. Whether that is a personal friendship or an online relationship through The Facebook and other interweb offerings that I could never really be bothered with. You all know what she’s like as there really is no hidden personality or private vs public Sandi but I will briefly tell you about the Sandi I know.

I first met Sandi over 30 years ago but it was probably 8 or 9 years later before I really got to know her. I fell in love with her shortly after I got to know her and I’ve been in love with her every day since. She really is the most loving caring person that you will ever meet and I feel very lucky and proud to be her husband. You’ll know from this blog that our marriage went through a pretty difficult patch 10 or 12 years ago but I can honestly say that, throughout that time, I still loved her and worked my arse off to fix our problems and get our marriage back on track. Since that time our relationship continues to get stronger each day and I always feel very privileged to have the bond that Sandi and I share. Sandi is the love of my life and there is not a thing that I wouldn’t do for her.

Shortly after we sorted our s**t out and got our marriage back on track we got her first cancer diagnosis. I won’t go into detail as you will have read about it in earlier blog postings but it was a tough, scary time. I don’t know if Sandi always believed but I never had a doubt that we would beat it and sure enough we eventually got to the stage where the cancer had been gone for about 8 years and the future was rosy.

That was until February this year when it returned. Stage 4 with tumours in the bones. Naturally we were both devastated but we weren’t going to let it beat us. We’ve been having the traditional treatment (radiation, chemo, etc.) but we’ve also been exploring everything else we can do to stop the cancer from winning. Diet, exercise, supplementation, hyperthermia, off-label drugs, you name it, we’ve looked at it with the attitude that, as long as it won’t do any harm, we’ll consider it. Only last week we came across what we think may become our new team with a naturopath, integrative GP and medical oncologist that will work together to support both the traditional and complementary therapies to give us the best possible chance to beat this.

And that’s when the horrible little f***er decided on a new plan of attack.

On Thursday last week I was diagnosed with metastatic spinal disease. Never been sick in my life and I get stage 4 bloody cancer! Couldn’t ease into it with stage 1 through 3 I just go straight for the big guns and get stage 4. I told Sandi a few months ago that if I could take the cancer from her and deal with it myself I would but I’ve typically gone about it half arsed and left her with it as well so now we both have to deal with it.

Cancer may think that its finally found a way to beat us. It hasn’t! It may be a bit of a setback but we will beat it. Cancer is about to find out just how strong Sandi and I are together. I’m starting to take the latest attack personally and cancer will find out just how nasty and vicious I can be when I get pissed off. I know that we have a difficult road to travel but I’m determined that there is only one way that this will end and that’s when cancer finally gives up and crawls back under the rock that it came from.

I don’t know how much of this blog will end up on the cutting room floor. Its not really written in the style that Sandi would typically use and it may need to come with a language warning but, whatever you get to read of it, I hope it gives you a little taste of where we are at the moment and how determined we are that this is nowhere near to the end of our story.

x

What I Miss Most.

What do I miss the most since cancer and covid changed the shape of my world? It's not the occasional lamb chop and my morning coffee or even dark chocolate from Coal River Farm. Not freshly baked bread hot out of the oven with butter melting into it. Nor hanging out with the goats and digging in my garden, I miss those things a lot but not more than anything else.

More than anything I miss getting up at stupid o'clock (really!!) to be out the door before 6:30am and driving over to pick up our beautiful grand daughter Phillipa Grace. I miss the excitement on her face when she sees "Grammy" walk in the door. I miss buckling her into her car seat and adjusting the headrest mirror so that I can see her as I drive and she can see me too. I miss putting nursery rhymes on the car stereo and singing all the way back home with Pippa joining in occasionally. I miss watching her do all the actions to Twinkle Twinkle Little Star, we'd sing that one a few times, same with Sing A Rainbow and Galumph Went The Little Green Frog.

I miss getting her out of her car seat and handing her to "Grandad" who always came out to the garage to greet us and her grin at seeing him. I miss gathering up the baby bag and toys and following them inside to prepare breakfast for our little Miss while Grandad took her for a tour of the lounge and office checking everything out. I miss securing her in the highchair and sitting with her, drinking my coffee (thanks Grandad), while she ate some of her breakfast and tried to throw the rest over the side to our beagle. Archer wouldn't move from his spot next to her while there was still food on the tray! I miss wiping messy little fingers and a food smeared face.

I really miss sitting and reading books together: Old MacDonald; There Was An Old Lady Who Swallowed A Fly; Winnie The Pooh; My Book Of Colours. I miss the noisy toys and the animal magnets that never stayed on the fridge. I even miss the nappies and baby wrangling to keep her on the change table!!

I miss a sore shoulder from rocking her to sleep for 20 minutes and sometimes longer. I miss watching her sleeping, her face so relaxed and peaceful with her teddy clutched tightly to her chest. I miss the little noises through the baby monitor that warned us our rest time was at an end. The excitement on her face when I would put my head in the door to say hello and the way she would point at Winnie, Tigger, Piglet and Eyore wanting me to wind up the music mobile. 

I miss the long, busy, tiring days spent with Pippa and the opportunity to build a special relationship with the small girl who had her Grammy wrapped firmly around her tiny fingers from the moment I met her. I miss the cheeky little Miss who taught me that I was always meant to be a Grammy. All my life was leading up to this, to teaching my grandies how to cook and to grow things, doing messy crafts together and reading lots and lots and lots of books. Singing, dancing, laughing and loving. I wanted to be that person for Pippa and all the grand kids to follow, but cancer and covid are robbing me of the opportunity for all of that. I miss looking forward to the future filled with grand children and adventures.

I miss the innocence of life before cancer.

  

Designing My Treatment Plan

Over the past four months, while I have been undergoing chemotherapy and radiation treatment, Pete and I have done lots of research into metastatic breast cancer, how it grows and how it might be slowed down or even stopped in it's tracks God willing. We researched until our eyes were crossed and our brains were fried and then we researched some more. We continue to research even now.

We've reached the point where we have a reasonable understanding of the way this disease will most likely progress and what that means for my quality of life and survival. My oncology team at the hospital are hoping to slow the progression of my disease enough using mainstream treatment options to give me perhaps 2 or 3 more years. I'm 51 now so, assuming they are close in their estimate, I'll be dead by the time my 54th birthday rolls around.

Obviously Pete and I don't find that outcome acceptable and so we are using our research to find protocols, supplements and drugs that may be used in conjunction with traditional cancer treatments to increase my survival and improve my quality of life. Our goal is to keep me well enough for long enough until a real cure is developed and made accessible.

The problem we are finding with some of these complimentary therapies, apart from the cost, is that you need to have a GP on side who is prepared to prescribe off-label drugs (drugs used for a purpose other than their original function). One example is the diabetes drug Metformin which is used in the UK and USA in some alternative oncology clinics to help starve cancer cells. Unfortunately there are no such clinics in Australia so we need a sympathetic GP who is willing to support us in taking a metabolic approach to killing cancer. We also need a GP who is willing to regularly monitor my liver and kidney function etc because the massive amount of drugs and supplements I need to take will absolutely put a strain on my body.   

Having failed to get my medical oncologist, my family GP and my integrative GP on board I was feeling depressed and desperate earlier this week. With such a short prognosis I don't feel that I can afford to tread water waiting for something to happen. So yesterday, when I somehow stumbled across an integrative oncologist in Hobart who has hyperthermia facilities AND mentions Metformin and other complimentary cancer treatments on his website, I got a teensy bit excited. I immediately sent through a new patient request form and am waiting for a call back. I'm not sure what I will do if this avenue doesn't pan out but I'm not thinking about that for now. 

 Pete and I are convinced that adding a metabolic approach to starving my cancer is critical to increase my life expectancy. We are looking at all the ways cancer can feed in the body and trying to block each identified pathway with a drug or supplement. I made the decision to go vegan way back in February before I was aware of the metabolic approach, but it turns out that methione restriction (the reason I went vegan) addresses one of the pathways. I also cut out refined sugar, wheat (gluten) and all alcohol. 

We are also including in my protocol supplements to support my immune system, repair my gut biome and to help mitigate the side effects of chemotherapy and radiation. I am using home hyperthermia to raise my core body temperature from an unhealthy 35.3 to short periods when it exceeds 37 degrees. I even reached 37.5 on one occasion! My goal is to reach 38 degrees on a regular basis.

Mental health is a huge challenge for everyone during Covid, but for me it has meant not being able to access core support services provided by organisations such as The Cancer Council and Breast Cancer Network Australia. Covid has also meant losing the ability to look after our beautiful 17 month old grand daughter, no close contact with family and friends in Tassie (missing hugs so much) and it also means that my mum and sister cannot fly over to see me. None of this is good for my mental health and when you throw a terminal cancer diagnosis in ... well it's really tough. I'm wait listed for counselling by a psychologist who specialises in breast cancer.

The last piece of the puzzle is achieving better quality sleep.  Having been a severe insomniac for more than 10 years, improving my sleep is especially critical. I'm using mindfulness, meditation and various fancy pillows and supports (and super duper earplugs) to try to achieve 8 hours of quality sleep each night.  Last week we purchased a medical pillow designed for neck support of back sleepers and teamed with my knee wedge pillow I have actually managed 8 hours of good sleep on several occasions now. Progress.

These are all small steps individually but added together we are hoping and praying that they will be life changing (life saving).

So for those of you who have been asking how we're coping with my new diagnosis, here's your answer. We have thrown ourselves into this fight 150% and we won't be backing down. I refuse to die so young and Pete refuses to let me. Bring it on!!

What Does Dying Look Like?

Yesterday yet another person told me how well I look with a surprised expression on their face.  A week ago someone told me that I looked amazing and more vibrant than they had expected. Over the past four months, since my terminal cancer diagnosis, I've heard on many occasions how well I look. Don't get me wrong, I take it as compliment. It's nice to know that apart from the walking stick or wheelie walker I look just like anyone else. Neither my face nor my demeanor shout "I'm dying" and that's my intention. I work hard to make it so (see what I did there? Star Trek's Captain Picard - one of my favourites).

Eight years ago when I underwent chemotherapy I lost all my hair, eyebrows and eyelashes included. Sure it was nice not to have to shave my legs all through summer but it was tough trying to not look sick. The chemo also gave me a rounded face and blotchy skin ... it was obvious to anyone who looked at me that I was very sick. There was one other thing, a BIG thing, that set me apart from "well" people and that was attitude. 

My first cancer diagnosis was stage three hormone positive breast cancer. I was told that although it had been detected early it had already reached my lymph nodes. Many lymph nodes. I was so shocked to hear my diagnosis that I think my brain shut down. I was also terrified and so I followed the advice of my oncology team without question. They hit my cancer hard from every angle - surgery, chemo and radiation and then told me I had an eighty percent chance of the cancer recurring within five years. The shock and the fear were overwhelming and I allowed myself to wallow in self pity. I think it was that more than anything else that contributed to me looking sick.

Fast forward eight years, three years beyond that five year prognosis. I truly believed I was out of danger even though I got nervous every six months at check up time. Each year past the five of my prognosis I became more confident that I had beaten the beast and why shouldn't I have? I was doing everything I knew of to improve my odds and my health. I was eating much better (although I was never a "bad" eater), I was making a conscious effort do more for me and we'd moved across the country for a tree change and a slower, healthier lifestyle. I was growing more and more of our food every year, spending more time outside in nature with our beautiful animals and reconnecting with Pete's older children and the rest of his family.

So when I was told I had metastatic bone disease it was a total shock. I felt it had come out of nowhere. In hindsight there were so many clues over the past two years that were overlooked but that's another story. Five hours after getting the news I was admitted to hospital via the Emergency Department. After a whirlwind of scans and doctors and medications I was released the following week with the understanding that the only treatments available to me would at best prolong my life but not cure my cancer. It was at this point that Pete and I put our despair aside and resolved to fight for my life in any and every way we can, because, no matter how we look at it, two or three more years of life is simply just not enough. What ensued was weeks and months of research into alternate therapies to fight stage 4 breast cancer. We are still researching every day. And when we find something that really speaks to us we do our best to add it to my protocol which I am doing alongside the usual/traditional cancer treatments.

This is the biggest difference between my first cancer journey and this one. Pete dragged me through the first one kicking and screaming. This time we are a team united in our determination to win against massive odds and to celebrate our eightieth and ninetieth birthdays together (that's thirty years from now for those of you who don't know). And so I get out of bed every morning even when I don't know how I will manage it. Some days it might be after 10am but I still get up, shower and get dressed. Some days all I can do is curl up in my favourite chair with a puppy and a good book but that's okay. I don't want to be sick so I try not to be.

A terminal cancer diagnosis is no reason to give up. It's definitely not a reason to let days pass without living and enjoying the life I have. It's about balancing doing with rest, it's about determination and hope. It's about living the life I love everyday in some way.

So no, I don't look like I'm dying, thanks for noticing xox

Hospice

I didn't even know that Hospice existed until cancer struck my family. I was just twenty years old when my father succumbed to brain cancer.  He spent the final three and a half weeks of his life in hospice care.

One night at Whittle Ward, sitting by my father' s bedside, I knew how it felt to despair. I had taken to sleeping at the hospital in a reclining chair next to his bed, spending night after night praying for a miracle, and exhausted from the constant vigil. I needed help. No other family members were there that night so it was up to me to make sure Dad was not left alone. Then a lady, whose name I did not know until I met her again years later, came quietly into the room. She offered to sit with Dad while I made myself a coffee and freshened up. That "small" gesture and those fifteen minutes made an enormous difference to my emotional state at the time and has continued to impact on my life over the past thirty years and more.

After my father died I was determined to become a volunteer with The Hospice Care Association. I wanted to make a difference for others just as that lady had for me that night. Initially the association rejected my application, several times, because they believed my own grief was too new. Instead of waiting I decided to put myself through the training at TAFE and then apply again with qualifications. I know they still hesitated - how could a twenty year old girl, still dealing with her own grief, help others in their time of need? But I was persistent and eventually they welcomed me as a volunteer. I spent a rewarding nine years working both in the hospital and behind the scenes.

The work I did as a volunteer ranged from spending time with patients or their families at the hospital, giving public information and awareness sessions, editing the volunteer quarterly newsletter and helping to produce flyers and advertising material as needed. All of it very important to the association.

In the hospital I enjoyed spending time with the patients, giving hand massages, reading to them, talking or just sitting with them quietly. I also spent time with members of the families when needed, did ironing, made tea and coffee and assisting the nurses with non-nursing tasks. My favourite activity was hand massage using aromatherapy, it was relaxing for both myself and the recipient and was a great distraction allowing them to talk if they felt like it.

All this work was very rewarding and I often feel that I gained so much more from the experience than those I cared for. However one day I went into a small business in town run by close friends of mine. They had been speaking with a client of theirs whose mother was in Whittle Ward at the time. She had been telling my friends of a young girl who had been visiting her Mum in hospital, massaging her hands and keeping her company. She told of how her mother looked forward to these regular visits enormously. All the family wanted to meet this 'exceptional' young girl and thank her for her kindness. 

Of course the girl was me - and I was/am in no way exceptional. As a hospice volunteer I did whatever I could to help those in care, their families and the staff caring for them. That feedback just reinforced for me how important it is to help. To be kind.

I'm still that same person, though an additional thirty years of life has left many more scars on my body and soul. I still believe that it's better to give than to receive and I still try to be kind, always. With my current health situation I'm finally learning to accept help with grace, I already know how it feels from the other side.

Be kind. Always.

Four Weeks In

It's not yet four weeks since I was told that my absolute worst nightmare had become reality. Metastatic Bone Disease.

Week 1 was pretty much just shock, horror and an unexpected hospital stay. There was no time at all for processing what was going on. We actually felt that everything was happening around us and to us with no real input ourselves. Our heads were spinning and we couldn't tell up from down. If I'm honest I still feel that way at times.

Week 2 was mostly anger, denial and fear with daily hospital visits. It was a very busy week with lots of driving between hospital and home and lots of time in waiting rooms. We asked lots of questions like "how?" and "why?" but didn't really get any answers. It was a week of serious information overload, exhausting physically and mentally. I was given the first round of radiation therapy on my spine and the fatigue kicked in very quickly. I'm still fatigued now as I prepare for the next round of treatment. And we're still looking for answers.

Week 3 started with a long weekend here in Tassie which was really nice. Three whole days away from the hospital and finally a chance to do some bits and pieces around the home and farm - carefully of course! I helped cook a meal and watered my pot plants, everyday things I used to take for granted. We also got to see some of our extended family. Over the long weekend we did our best to not think about cancer - with mixed success.

The past week has been the hardest one yet. After reading/researching so much information in weeks 2 and 3 I now feel totally overloaded and overwhelmed. A friend recently asked me if I'd given any thought as to why this happened to me both 8 years ago and again now ... do I have any feeling for what may have caused/contributed to my having cancer? Of course I've given it thought ... a lot of thought. Perhaps far too much thought. So now I'm searching for ways to calm my mind and find some emotional and spiritual balance, to find some peace instead of turmoil.

Cancer has already taken so much from me and my family, I can't let it destroy my heart and soul too. So for the next little while I am going to try to focus on my mental well-being and on getting a good night's sleep. The questions will wait.

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.