breast Life after cancer
It’s well documented how difficult treatment for breast cancer can be, but Síana Clifford discovered that the period after is a tricky time too – and that connecting with your own cancer crew is the best medicine.
I know I’m supposed to be in a good mood and feel so lucky it’s all over but I’m in a really bad place and struggling with the side effects. I can’t pretend that this is easy and I feel lucky any more. These last few days have probably been the hardest.
Iwrote this in my journal a few days after I finished radiotherapy treatment for breast cancer last year. I assumed I’d be feeling on top of the world when my treatment was over, celebrating that any cancerous cells inside my body had been vanquished and I was able to resume my “normal” life.
I was supposed to feel happy and grateful. And I was grateful to be done with treatment, hugely grateful for the public health system in Aotearoa New Zealand and so very grateful that the cancer chapter was over, hopefully for good.
But, even as work deadlines ramped up again and I began to fill my calendar back up, it really didn’t feel like that cancer chapter was actually over.
Apart from having burnt, sore and broken post-radiotherapy skin, crippling fatigue (which would last for months) and the beginnings of lymphatic issues in the cancer boob (see red box page 55), it also felt like all the mental and emotional aspects of the experience were only beginning to hit me, just at a time when everyone was expecting to have the normal Síana back.
Down on your luck
The “lucky” I referred to in my journal entry above was very much at odds with what I was feeling too.
Comparatively, there’s no doubt I had been very lucky with my cancer experience. It was discovered in a very serendipitous fashion and was caught super early – if you’re going to get breast cancer, this is the one you want. Treatment-wise, I had a lumpectomy and 15 blasts of radiotherapy, but I didn’t require chemotherapy, the more drastic body alteration that a full mastectomy entails or any ongoing medication.
I was also so lucky to be in probably one of the best places in the world to be experiencing cancer during Covid-19. I was diagnosed two days into the first lockdown and it looked like my surgery might be delayed but then our lockdown worked so well it went ahead on schedule. I knew that all that made me very lucky indeed, and I was sure to express that in every conversation I had about my cancer: it could be worse, I was so fortunate it was found the way it was, etc.
But I still had cancer. And cancer, even the “good” kind, is crap. Having cancer during a global pandemic, so I couldn’t get home to my family in Ireland or have any visitors in hospital, is even crapper.
And the emotional and mental aftermath of all of that crap is what I was feeling rather than the happy days and sweetness and light I had been expecting to feel – and sometimes felt that others were expecting from me.
What the hell was wrong with me that I felt so bad?
Untangling tangled emotions
It turns out that this is not an uncommon way for women to feel once they’ve finished active treatment for breast cancer. One day I put up a post in the Aotearoa Breast Cancer Community Facebook group that I’d been lurking in about how fatigued and down I still felt weeks after radio. The support and empathy came flooding in. I met some of those kind women who had responded for coffee and that’s when I realised that my post-cancer experience was far from abnormal.
Over that coffee, and during chats with many other women in the ‘cancer club’ since, we talked about how while you’re going through treatment you’re juggling all the appointments and the practicalities of the treatment itself. You’re in survival mode, concentrating on getting through each of your treatment steps. Hopefully
“Even as work deadlines ramped up again and I began to fill my calendar back up, it didn’t really feel like that cancer chapter was actually over.”
you have a support crew, who are maybe dropping off meals, sending gift hampers or offering to drive you to treatment, clean your house or look after the kids.
Once all that stops and you actually have time for everything to sink in, and the support crew have fallen away – and that’s fair enough, no shade intended, as far as they’re concerned you’ve beaten cancer now and their job is done – that’s often when your mind and emotions catch up.
Suddenly you’re dealing with the aftermath of this huge event in your life that has led to you confronting the reality of your mortality. There might be anger (why did this happen to me?). There’s often depression, or at least low mood. Your body has changed, which might impact how you feel about being intimate with anyone. For others, there might have been a shift in some of their core relationships after the painful realisation that some of the people in their lives weren’t there when they needed them.
There’s a kind of grieving period involved in all of that. You’re looking at the world, your relationships, your priorities, your body and even yourself as a person differently now. You’re grieving for the life you once lived, the body you once had and the person you used to be. You’re wondering who you are now and what is ahead for you (and yes, whether cancer is going to feature again).
These emotions aren’t easy to process as the person going through them, let alone for those around you to understand, when they were probably expecting only positive emotions from a cancer “survivor”.
On top of that the physical side effects of cancer treatment, don’t neatly end when treatment does. Many still have reconstructions or other aesthetic surgeries ahead of them – I know I still have one more to go. You’ll likely need physio to deal with the aftermath of surgeries and radiotherapy. Lymphoedema (see box right) is an after-effect that can appear in the months or even years after treatment. And the fatigue, oh the fatigue
“The doctors are, as always, pragmatic and your support crew is full of positivity, but in the dead of night in the weeks leading up to that scan, you’re remembering how it wasn’t all right the last time.”
can linger for so long, which can make that “normal” life you’re supposed to be striving to return to feel very out of reach indeed.
The scourge of scanxiety
One of the things that took me by surprise about the end of active treatment is that you don’t get a mammogram to check they’ve got everything. One day you are just… finished. There’s almost a sense of anti-climax, as there’s no appointment with your oncologist where they hold up a scan and proclaim that you’re cured. You have to just have faith that the treatment protocol did its job and all those pesky cancer cells have been cancelled.
That faith can waver of course and for a while, any twinge can send you into a scare spiral that it’s coming back. You’re officially monitored for five years after cancer, so soon enough mammogram time rolls around again. And that’s when the anxiety (or scanxiety) really kicks in – that fear of what might be discovered when the memory of what the last found is so fresh.
The doctors are, as always, pragmatic and your support crew is full of positivity, but in the dead of night in the weeks leading up to that scan, you’re remembering how it wasn’t all right the last time. And so how can you presume it will be this time? It’s undeniably a logical and legitimate fear, yet you don’t want to let the side down by voicing it.
Cancer really is the gift that keeps on giving.
The good news
My mammogram was all clear, yay! It felt great to have that first annual one done and hopefully the next ones will be less anxiety-inducing (ask me again next April).
The even better news is what I know now, about a year since that tough post-treatment period began. I know now that all of the emotions I was feeling (and sometimes still do), as unexpected and difficult as they were, are totally normal. And just knowing that does take some of the weight from them.
I also know now that it was connecting with other women who had and have breast cancer that has made all the difference to me.