For me, next month will mark my first. For the uninitiated it sounds like a triumph- one year better. For those of us who have crossed the line, it's terrifying and confusing. Triple Negative Breast Cancer is rare and aggressive. It can't be treated with hormone therapies like any of the other subtypes. In essence, once we have completed our initial treatment, TNBC survivors can feel like sitting ducks as we also have the highest rate of recurrence in the first three to six years post diagnosis. It doesn't come back in all cases and is very much dependent on the stage and grade but while I am glad to be marking one year of survival, forgive me for feeling apprehensive too.
Those of you who have read this blog before will know I always like to do something for other sufferers, so with that in mind, I've put together a list of things survivors might want you to know but don't tell you.
1. It can take ages to find our way again, be patient
Many survivors feel pressure to be a plate spinner once treatment ends- we don't have cancer in our bodies so we should start losing the weight treatment gave us, we should exercise, we should eat an ultra healthy diet, we should get back to work, we should. should, should and preferably all at the same time. Accept us while we experiment with this new life we've been given. I know I surprised a few people when, in the space of months, I went from setting up a monetised blog to completely turning my back on professional writing but it wasn't a job that others valued me for and I made peace with the fact I wasn''t as good as I'll ever want to be. There are plenty of other things to try.
2. We have lots of ups and downs
Yes, cancer has left out system but the memories remain. More than this, fears of it returning combined with the reality and gravity of treatment make for some really down days. Add into the mix our self-confidence being non-existant as hair takes ages to grow (it takes roughly a year after chemo to have a complete coverage), weight gain, skin changes, thinned eyebrows and lashes- getting out of the house in spite of it all can be a real achievement. Encourage us to remember what we've been through and be gentle with us. Please do not remind us that we're lucky to be alive or should be grateful - you are not providing us with insight, just helping us to exercise our self-control from telling you to button it.
3. Don't leave
One of the toughest things I've had to cope with since finishing treatment, and I know I'm not alone, is everybody getting back to routine (and assuming I have too). We've just had months of pilgrimages, phone calls and messages, yet once survivors are told we're better, it's often the case that the contact drops off. In fact the occasional check-in is really handy to see if we're ok. Particularly bad times can come from a cancer story in the paper, which leads me on to my next point....
4. We're not Cancer specialists
Something funny happens when you survive cancer. People want to tell you A LOT about other people with cancer, or people who have died from cancer. My least favourites are the people who tell me about someone they know who thought they had the all clear and then the cancer came back. Thanks for adding on a new dimension to the 3am panic attacks!
5. We think about dying more than you know
You know when you're playing a game where you pretend not to look and then you look quickly to catch the other person out? That's what being post cancer is like.
Some of us can understandablY think any sign of infection, disease, twinge, ache etc is a sign of cancer. In my case, I get the odd mortality reminder at crappy times like when one of my children does something particularly funny or clever or bright or tells me how they love me more than anything in the world (and I am inwardly terrified that I, who would do anything and everything for those precious humans, will be the one to destroy them).
6 We think life should take on a more profound meaning and we see it as meaningless all at once
Some days I think about retraining to be a doctor (which is what I've wanted to do since I watched Jimmy's when I was a little girl) and other days I have to do something boring like washing up and I'm tempted to throw away all the dishes because what a waste of life it is. It can be really hard seeing the rest of you going about the trivialities of life in a fog of blissful ignorance.
7.We've seen more of life than most people we know yet can accept we know less than we thought
You people have meetings, clubs, societies, hobbies and are happy to plan things in the distant future. We've had a biological grenade and fended off the reaper. Life doesn't look the ssame from where we are standing and we no longer see the future like you do- an inevitability. For us, the future is 'as long as nothing else comes up and gets in the way.'
I visited my breast care nurse today for a
I learned the Spring will bring new life and most likely the rest of my hair and that the fertility side of things normally stays shut down for about two years afterwards. Persoanlly I thought this fact could have been illustrated better by the nurse breaking in to song,,,"noooooooooooo, bodyfor-m, no bodyform for youuuuuu," but she didn't agree.
As for tiredness, it's perfectly normal to feel tired for months after treatment. This particularly was music to my ears as I've been fighting exhaustion lately and pushing myself to make each day count. Turns out it's not as lazy as I thought to want to rest.