Can I Please Stop? Just For A While.

I really want to stop. I know I can't but I want to.

I want to stop having my days and weeks dictated by cancer treatment and my life defined by fighting cancer. I know remission is an amazing achievement, and I do want to stay here as long as possible, but it's hard work. It's overwhelming and all consuming and leaves me little time or energy for living a life that I love.

I miss all day breakfast with Kylie. I miss bottomless cups of coffee with Loz. I miss sneaky visits from Dee squeezed into already busy trips. I miss having a beetroot latte with my sister before fruit and veg shopping together. I miss sitting at the kitchen table with friends for long and honest conversations. I miss their kids. I miss my mum.

The only person who really understands how depleted I am right now, how emotionally broken, is Pete. And he can't fix me. He loves me and holds me while I cry, he forgives me for getting unreasonably angry over stupid things. He tries to take away any practical burdens that he can and encourages me to be kind to myself. But he can't fix my dark mood and exhaustion.

I am unbelievably grateful to be in remission but I'm tired. 

I'm more tired than I can express or anyone can possibly comprehend. I'm tired from cancer treatment, from the side effects and complications, from pain and insomnia. I really want to stop and rest but I know I can't.  

I'm just so very tired.

Living With Incurable Cancer

Exactly one year ago today (21 Feb 2020) I received the news that the breast cancer I was treated for in 2011-2012 had returned but this time in my bones. Metastatic Bone Disease. Currently there is no cure for it and at the time of my diagnosis average survival was measured in a mere handful of years – less than 3.5 in fact.

I spent the first six months being angry and anxious. And terrified. I panicked and spent hours and days and probably weeks researching ways to beat the odds. Obsessed would be an accurate description … and terrified. Did I mention that I was terrified ALL THE TIME? Every minute of every day I obsessed over the things I could do that might increase my lifespan and along the way I forgot to keep living. I was frightened of food and anything that wasn’t designed specifically to foil the cancer that had invaded my body. It’s fair to say that when Pete was diagnosed with Myeloma in July my fear, anxiety and anger went up exponentially.

Fast forward to August and a switch to a new oncologist and into the private health system. After feeling like just another number in the public system, and questioning why it took more than 2 years to diagnose my various pains correctly, I decided to look elsewhere for better care.  No longer content with a standard of care based on statistics and the government budget, rather than on me as an individual, I found a new specialist.

He’s a cracker. Slightly socially awkward, quirky and highly intelligent. I liked him immediately and felt at ease. At my first meeting with him he got straight to business with a thorough physical exam and a referral for a scan he was shocked hadn’t already been ordered under my previous specialist. He explained his plan for how he would like to proceed, asked for our agreement and answered our questions. I immediately felt better supported and listened to than I had for the previous 6 months. I also felt hopeful for the first time.

The scan showed that the cancer had spread further even with the treatment I was having. Obviously the standard treatment was not working well for me so my new oncologist added another drug to my protocol. The result was nothing short of miraculous with a follow up scan in October showing that the addition of the new drug had put me into remission. That means that the cancer has not only stopped spreading but has been rendered inactive by the treatment. It’s still there but not doing anything. Eventually the treatment will stop working and I will no longer be in remission, the cancer will become active again and I will change over to a new treatment protocol. With luck the next treatment will also work for a while, keeping the cancer at bay, and the cycle will continue until there are no more treatments to try.

Being in remission means I have more time. The longer I stay in remission the longer I keep living. Another scan this past week shows that I’m still in remission which is amazing and wonderful. I’ll have another scan in 6 months.

What all this means for me is that I no longer feel like I’m dying from cancer but that I’m living with it. My pain is mostly controlled, my treatment has fallen into a steady routine and I feel hopeful of surviving much longer than my original prognosis. It doesn’t mean I don’t still have challenges to face or that the treatment is particularly easy to endure. Just this week a routine injection resulted in internal bleeding from a clipped artery in my abdomen. A few weeks ago I spent a very long day in Accident and Emergency with chest pains. I’ve had allergic reactions to various pain medications and I don’t sleep well most nights. I take several medications to combat the side effects of the cancer treatments. Sometimes my leg loses strength completely and unexpectedly. But for every challenge I face I’m finding more and more reasons to love the life I have.

Living with incurable cancer isn’t so bad when there’s less pain and more hope. I’m blessed with the love and support of an amazing husband, a loving family and more than my fair share of incredible friends. I now have a naturopath, an integrative GP and an oncologist on my care team and they are all open to using traditional and complimentary therapies together. I have a fantastic metastatic breast care nurse from the McGrath Foundation who checks in with me regularly and whom I can call anytime with questions or just to unload.

One year since my diagnosis and I can finally look forward to living well in the months and years ahead. For all it’s challenges life is good.

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!!