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!!