A Journey to Happiness
Thank you for joining me as I recall my journey of personal growth and healing. I still remember standing back one day and looking at the train wreck my life had become. Then came a moment of pure clarity when something inside me snapped and I decided I would take back control of that "train wreck" and reclaim not just my life but my family, my health and my happiness too.
I hope the telling of my story can be as inspiring for you as I expect it will be cathartic for me.
12 September 2022
It's not dying if you choose to live.
11 October 2021
Asking For Help
In February 2020 I was diagnosed with stage 4 breast cancer which had metastasized to my bones. There is no cure. The disease had spread extensively throughout my skeleton and into the surrounding soft tissue of my lower lumbar spine. I was admitted to hospital on the day I received the diagnosis and treatment began immediately. The initial treatment included radiation to 5 of the worst affected bones and a soft tissue tumour which was compressing a nerve cluster in my lumbar spine. Ongoing treatment included oral chemo, hormone blockers and pain relief with a bone treatment injection all on a 4 week cycle. Follow up scans in August showed further progression. A change of oncologist and the addition of a new drug had me declared stable by November 2020, which was a minor miracle. My treatment continues on a 4 week cycle.
In the meantime, in July 2020 my husband, my rock and the love of my life was diagnosed with myeloma, an incurable blood cancer. The cancer had spread to his bones and, after urgent surgery to remove a soft tissue tumour compressing a nerve cluster in his thoracic spine, he began treatment on a 4 week cycle. In December 2020 he underwent a stem cell transplant which took months to recover from. He was declared stable in March this year and his treatment continues on a 4 week cycle too.
Sure it's stressful dealing with both of our illnesses on a daily basis. And yes it has changed the way we are able to live and function. But for all of the challenges and fears, I was coping really well until August this year when a routine scan showed new "glowy bits" in my neck. Glowy bits are not good. Glowy bits need to be investigated. So I was sent for an ultrasound of my thyroid which was inconclusive. I was then booked in for a biopsy but had to wait more than 2 weeks for a hospital to fit me in. Two weeks to worry, to imagine the worst and work myself up into a bit of a state. That's something I'm good at, winding myself up like an elastic band until I either snap or spin out of control.
Thyroid cancer. The results came back and I was referred to a surgeon but again I had to wait for an appointment. Cue more winding. Before I saw the surgeon I had one of my regular treatments at the hospital and as soon as one of the nurses asked me how I was I broke down. Snap! I mean I really broke down. My BP dropped to 107 and they called the doctor in. She urged me to get help with a mental health care plan and urgent therapy.
So now I'm in therapy. I've been working really hard for the past 5 weeks or so and I'm getting a lot better. I'm doing a Mindfulness course on Mondays, I have CBT therapy on Tuesdays and I'm seeing a psychologist specialising in oncology trauma too. This blog post is actually my homework for tomorrow's CBT session - journalling.
Five weeks ago I was at rock bottom and looking back I can see exactly why my health care team pushed me to ask for help and accept what was offered to me. I couldn't function in any area of my life, I was barely sleeping, the house was a mess and I was avoiding friends and family.
Asking for help was difficult but not as difficult as trying to cope without that help. Now I have 3 more members in my Dream Team and I will try to always ask for help.
28 February 2021
Can I Please Stop? Just For A While.
21 February 2021
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.
27 December 2020
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!
6 September 2020
Hope Out Of Fear
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.