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.

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.