When I finished my radiotherapy I thought I’d reached the top of the mountain I’d been climbing. That it was now just a matter of descending safely back down. Little did I know I’d still be climbing the mountain more than one year on.
I am cancer free and while there is only a 2% chance of my cancer returning (because it was favourable and detected early), I have been taking an anti-hormone medication called Tamoxifen, to further minimise the risk of recurrence.
This treatment is standard for the 70% of women diagnosed with oestrogen-receptor positive cancer in Australia. It works by blocking oestrogen to stop or slow the growth of breast cancer cells. But it also stops oestrogen from going to healthy cells in other parts of the body that need it to function properly (i.e. in your brain, bones, joints).
It effects every woman differently and there’s a long and wide ranging list of potential side effects, from hot flushes and night sweats, to fatigue, anxiety, sleeplessness, loss of libido, joint stiffness and pain, brain fog and increased risk of blood clots (although this is rare). The length of treatment is usually 5 years but varies from woman to woman, and there is new research that suggests 10 years is even more effective.
Compliance with Tamoxifen is a huge issue. So much so that 42% of women stop taking it within two years, and more research is needed to better support women through this treatment.
My oncologist says he sees at least three women a day experiencing issues with Tamoxifen and thinks there are more problems with this drug than chemotherapy.
While my doctors all agree that Tamoxifen is a harsh treatment for a young woman to be on, their opinions about my need to be on it are divided. I opted to give it a go, because some women breeze through it, and I’d never forgive myself if my cancer came back and I hadn’t tried.
Initially I was okay. But after a few months just getting myself to work each day was a struggle.
It felt like someone had flicked a switch, cut off my fuel supply, and sucked every ounce of energy out of me with a vacuum.
Just putting one foot in front of the other required huge effort. Despite being exhausted at the end of each day, I was completely wired and unable to sleep. I’d burst into tears for no real reason. And when things reached crisis point I felt like I was in a drunken haze, unable to do basic things like write, or drive my car.
I kept fighting it for months. But my energy levels continued to plummet and the less I was able to do the more I felt frustrated, helpless, depressed, and down right sorry for myself. And then there was the anxiety. I didn’t want to be negative, still talking about the challenges I was going through. But I needed colleagues and friends to understand why I wasn’t myself and why I couldn’t operate at full capacity.
Even the task of trying to pack for a much-anticipated trip to Thailand was too much. I collapsed onto the couch in a heap, crying “f***ing cancer”. That’s not how I had felt, or do feel about my cancer experience, but so intense was the anger and resentment that I felt that this medication was interfering with my ability to get on with my life. This was not how I’d pictured myself one year on from my diagnosis.
Eventually I knew I had to surrender. My body was telling me loud and clear that things were not okay and trying to soldier on was anything but heroic, let alone possible.
And so I stopped working, almost immediately. I took a break from Tamoxifen (on the advice of my oncologist) and within a few weeks felt myself coming to life again, I was on top of the world because I felt ‘normal’ again, I had forgotten what that felt like.
Within a few weeks of being back on the medication the same symptoms set in. While there’s no research to support whether a lower dosage is effective, my oncologist and I agreed that the fact it was having such a severe impact on me indicates it was working, and a lower dosage is better than not at all. So I lowered my dosage, and lowered it again.
While the symptoms weren’t as severe I still had a few days a week where I couldn’t do much. On some days taking the tablet made me feel in control. On others, it would sit there all day until I eventually gave in. And there were days where I flat out refused to take it because it felt like torturing myself and I refused to let it control my life.
I’ve been given a four month break from the medication to get myself feeling good and allow me to make a decision on what to do with a clear mindset. I’m not sure what my solution is. How do you make a choice between quality of life, and the fear of getting cancer again? It is perhaps only now that the reality of living with the life long fear of my cancer coming back has really begun to set in.
For now, I know the best way to help myself is acknowledging and accepting there are going to be days I can’t meet the high expectations I set of myself and creating space for it, because fighting it not only gets me nowhere, but makes things worse.
I’ve given ‘those’ days a name – ‘low energy days’ (original, huh?). I’m slowly learning to be kind to myself and do things that support how I’m feeling instead of getting down for not being able to do all the things I set out to do.
It’s a work in progress, but I’m amazed at what a difference a little bit of self-kindness makes.
My challenge pales in comparison to many other women who have had breast cancer. And it’s not a challenge that is unique to me, or even people who have had cancer.
We’re all facing challenges. But for some reason we seem to be programmed to think we have to keep pushing on, to put on a brave face and pretend everything is okay even if we’re falling apart inside.
Why is it that we put so much pressure on ourselves when what we really need is be kinder to ourselves?
There’s a famous quote by Marianne Williamson that says:
As we let our own light shine, we unconsciously give others permission to do the same.
I think it’s also true that when we have the courage to acknowledge we’re not okay and lean on those around us for support, we give others permission to do the same.
None of us are invincible. Life isn’t always wonderful. And there are times when we all feel vulnerable. It’s what makes us human. If we can allow ourselves to be comfortable with this, then surely we can better understand, support and connect with each other, don’t you think? We all want to feel connected, don’t we?
I’d love to know what you think…
Note: women taking Tamoxifen or any other anti-hormone medication should consult with their doctor before changing their approach to treatment.
If you’d like to know more about how breast cancer effects young women head to www.800youngwomen.org.au