Okay, so you’re still reeling from the word cancer and you being intimately connected with it. You may have 100s of questions, maybe you’re numb or maybe you’re in denial and hoping that the tests got mixed up and it’s not really happening. Either way, at some point, most of us are going to have to break the news to loved ones absent from the diagnosis delivery room, where the giant pile of cancer poo screamed its way into your real life.
Everything from now changes.
1. Make sure you actually do have cancer
Self diagnosis after Google-ing your symptoms not only scares the bejesus out of yourself and your loved ones, it does not count as an actual diagnosis. Neither does hearing somebody’s story and convincing yourself it’s happening to you. The only way to have a cancer diagnosis confirmed is by visiting your certified medical facility, having a range of tests and waiting for the results.
2. Practice what you are going to say
Write it down phonetically if necessary before hand. It’s difficult to get your lips around the name of the diseases and tests out there. There is a significant difference between a colonoscopy and a colposcopy for example. Nurses are good at helping with this.
It may not seem like the time for intricate planning but considering the time of day and what the other person (especially on the other end of the phone) may be dealing with can mean less misunderstanding, less repeating yourself and save them from bubbling with snot as they go into a job interview. Yes it’s important, no it’s not urgent.
Consider if you are ready to have the conversation. My husband and I took between hours, days and weeks to notify our loved ones. If phoning, prepare them. Tell them you need to tell them some sad news but it is not urgent. Ask if they are in a safe environment to do that or arrange to call back. Check if they have or need anyone with them and give them time to create a safe space. We sent an SMS before we called to say we needed to discuss some bad news could both the parents please be present. They are going to worry anyway, this way you set up support.
4. Be prepared for bewildering responses.
People are in shock and unless practiced in saying the right thing, often say the very opposite without meaning to. Try and be generous of spirit here, there is enough shit in the pan without throwing more on the fire. Be firm when you need to be, this is about you and yours, not about the egos of other people inclined to make it their own drama. Lots of people will try to placate you, reassure you that it is probably not as bad as you think. Unless they are the experts, just gently remind them that whilst you understand the need to try and fix it, it’s just not helpful right now.
As a nervous giggler I have laughed more than once at terrible news. Let your loved ones know that we all react differently and that’s ok. Let them know they can ask any questions they want, anytime. There are no wrong questions. My kids asked, “how do you know when someone is dead and what do they look like?” Seeing as my husband has a few years ahead of him yet, the questions could be seen as premature. However the gift in creating an environment where their questions are answered calmly and honestly means they can trust you even when the going gets really tough.
5. Be sure who you want to know
It may help to appoint a friend or relative as your communications specialist and direct calls and enquiries through them. Saving you answering the same question over and over again. If people get pissy about this and consider they have more of a right to your time, tell them to get over it. You have cancer now, and with that comes permission (from me at least) to adopt the ‘straight talkin’ option. If there are people you really do not want to know, make that clear to the people you do tell.
6. Be honest.
It seems very harsh to tell young children that this cancer isn’t curable or that Daddy is going die. Lying doesn’t help anyone in the long run. Eventually you will be found out and it may make it harder for your kids to trust you at other times. Use simple language and reassure them there is no right or wrong way to react. The Cancer Council’s talking to kids about cancer has some helpful information.
It’s often helpful to have an indirect conversation instead of a big “sit down I need to talk to you” scenario. I told my children separately as they have distinctly different levels of understanding, one in the car whilst driving and the other whilst walking the dog. It gave them space to not offer an immediate response. You may be surprised, as I was, at how calmly the information was accepted. Let them know you will keep checking in with them, questions are good, and however they are feeling is normal. We all react differently.
7. Don’t over dramatise!
If you have a highly curable or benign diagnosis, it’s still okay to be worried and scared. The whole process of the investigations and medical interventions are enough to induce anxiety. Be honest about how you feel as well as your expected treatment and outcome.
8. Keep it short.
Overwhelming people with too much information is just wasting valuable emotional strength. Be prepared to say something like
“ I have ………………cancer and the outlook is good/not good. I’m still processing and we don’t have much information at the moment, but I wanted to let you know.”
“ I have told/will tell ………………. Can you please talk/not talk to ……………… on my behalf.”
“There is something/nothing you can do right now to help. I will let you know when that changes. I’m going to leave you to let the information sink in for a while. Call me/I will call you at time/date.”
9. Use social media/email
You may wish to get news out quickly to a lot of people, sending a PM or email outlining the news can be helpful. Its much easier to say “I’m not up to talking about this yet” in an email than on the phone. It also means you don’t have to have the same conversation over and over again. Using social media such as a blog or email list can also help keep people up to date with how you’re doing and let them know when you need some specific support.
10. Take the offers of help
Cleaning your bathroom, taking the kids to school or dropping meals into your freezer. Your friends and family feel useless and want to help. Be practical. If you or your partner are up and down to hospital, or just feel crap, maintaining your usual schedule can be an unhelpful pressure. The house gets untidier, the crap food leaves everyone feeling rubbish and you get overwhelmed with how to get the kids to soccer and hold your partners hand at the oncologist at the same time. Accepting help helps everyone. A friend of mine once said, they won’t offer again if they didn’t mean it. So just take people at their word and say yes to the de-stress. Plus other people get to recognise that you are not some superhero parent, it makes you easier to like.
Whilst you are not judging anyone and being supportive of everyone, sometimes you just need to share the hurt. An old overseas friend established herself as my ‘mask-free-zone’. She hasn’t even met my husband, she doesn’t know the majority of the people in my current life, but she knows me well enough to love me warts and all. When I’m feeling less tolerant, I flick off a rant text or email and she calmly reassures me I’m doing fine and pokes my sense of humour. She has my back and I have to no need to explain or excuse my feelings.