I am writing this in response to Jen’s post Talking about cancer – you can read her original post HERE. Jen is taking part in a campaign by Macmillan to identify some of the phrases to avoid when talking about cancer.
Like Jen says, I do not want to upset anyone and make them think they have said something “wrong”, but more to challenge old ideas and habitual phrases. I am guilty of using some of the phrases myself. I know that I have called Jen “inspirational” due to her outlook on life and the way she challenges my own thoughts about cancer, and I try to learn from her way of thinking. I have since learned that not everyone wants that label.
Related post: Cancer Anniversaries
The advice from Macmillan, if you’re not sure what phrases to avoid, is to listen to the language the patient (or their family) uses and to use the same language yourself.
It’s ok to be
not okay sh*t
When the patient is a child, they don’t always have the necessary vocabulary to explain what’s going on. When my son (age 6) was very ill during radiotherapy, but not able to express himself that well, a fellow parent said to him “Do you feel like sh*t? Cos it’s ok to say that if you do!”, which was brilliant I thought. I felt that by allowing him the use of a ‘rude’ word it was giving him permission to recognise that this was something different to what healthy people have to deal with, as well as telling him that it is ok to be not ok.
Strong … or just coping the best you can
I have been called “strong” more than once, but I am far from strong really. Another Mum and I would frequently exchange text messages saying, “stay strong”, even though we both recognised that we couldn’t be strong all the time. It was our way of saying, “You’re doing great, but I am here for you anytime, because I understand.” We were (mostly) strong in front of our children, but behind the scenes was a totally different story. We watched our children being taken apart and put back together again by chemotherapy and highly invasive surgery. Some parents recover from that, others do not. I have completely fallen apart in fact, and I remain stuck in the trauma. So, do you still think I am strong, or am I now weak?
It was all meant to be
Really? Because firstly I am feeling pretty guilty that I couldn’t prevent this happening to my child, and now I’m wondering what an innocent child can possibly have done to deserve all this in the first place?
And please, please, please don’t ever tell me that there was a silver lining because I have yet to find a lasting positive from all the pain and suffering. Although I did try : https://marieceline.co.uk/childhood-cancer-finding-the-positives
Just gotta keep on keeping onFirst Aid Kit – My Silver Lining
I don’t know how you do it
People have said “I don’t know how you do it” adding “I wouldn’t be able to”, but that can feel like “I’m glad it’s not me going through this hell” rather than “I admire the way you are handling this situation.”
The truth is that everyone can do it, because what other choice is there? I love my son and I wasn’t going to hand him back to the stork/midwife and say, “this one’s broken, can I get a refund?” But at the same time, don’t you think I ever felt jealous of all those people doing mundane things with their healthy families? Because I feel angry and cheated and resentful about everything my family has been through, while others have been carrying on as normal. I wanted a piece of that. I wanted my life as a mother to be what I signed up for it to be, and it is far from that. I wanted my son to be like all the other children he started school with. To do the same things as them. To have a carefree and happy childhood.
Don’t add to the pressure
I do want to stress again here that I am very grateful to anyone and everyone who has shown an interest in my son’s story, and I am sure that nobody has ever said anything intentionally to upset me. I am purely adding my voice to those in this video below by Macmillan.
This discussion is about how the language we use can add pressure to an already stressful situation, and just because these phrases have been handed down through the generations, doesn’t always make them right.
Over to Jen once more
I will leave the last words to Jen, because she says it so much better than me,
If in doubt it’s safe to steer clear of saying:https://thecancerchronicles.blog/2019/03/04/talking-about-cancer/
Oh you have cancer? My aunt had cancer and she died. What caused yours? You’re so strong, you’ll beat this. You just need to fight, then you’ll be a survivor and you won’t lose the battle. Don’t say you’re scared, you’re an inspiring brave warrior. And don’t worry at all, just be positive!