Be the best support person
It was a Thursday in July when I got the call from my sister to tell me that she had breast cancer. I can't recall the actual words she used, but I do recall herring the fear and shock in her voice, and feeling fear and shock in my own body.
All I wanted to do was get on a plane, fly to her, hold her tight and tell her that everything was going to be Ok. Because it had to be. But I was stuck at home recovering from some now inconsequential surgery myself, unable to fly for another 10 days. So the best I could do was text her some stupid inspirational quote about everything being alright. I normally hate those inspirational posters. But it was apt. It seemed the longest 10 days. For me. Yet how long it was for her, I can't begin to imagine. One surgery turned into two when cancer was found in the lymph nodes.
'They' say that when you get a diagnosis of breast cancer it's a roller coaster - I think they mean the biggest, fastest, most terrifying roller coaster in the world - without any of the fun associated with going on one.
It felt awful for all of us in her life who were mere bystanders, as supportive and loving as we could be, strapped in for a ride no one wanted to be on; least of all my sister.
I don't want to write about the events of those 6 months in great detail. Those members on here who have been through treatment know enough about it not to have someone who has not been through it write about it. what I want to tell you all is what I think a support person needs to be, based on my experience. I hope that by sharing my experience, it might encourage those going through treatment to tell their loved ones what they want or need; that this may change at any given moment.
You see, I had three people say to me, in different conversations, when I talked about some of the emotional difficulties of a breast cancer diagnosis and treatment
'well it's not just about her - there are other people in her life who are affected by this'
Really? I was dumbfounded. Sure there are other people affected - but if it is not all about her then dammit it is 99.9% about her and her needs. I had no hesitation in telling well meaning people to put their own emotional needs to one side for just a moment and find out what she needed from them in that moment rather than being upset if she was upset or angry. I am far from perfect and made mistakes, but here are my best tips for being a support person - remember everyone is different and you must decide what works for her, with your support:
- Show up - if you say you're going to do something do it
- Don't ask 'what can I do' all the time - do SOMETHING, be proactive. For example, asking 'would you like me to hang this washing out' is a dumb question unless you like your washing to go mouldy.
- Sometimes just sitting in quiet contemplation is all she needs - don't feel the need to fill the silence
- If you can take a day off work to hang out and help around the house then just do it - tell her that you don't want to talk all day unless it is what she wants to do. Make yourself busy in the house and cook a meal, vacuum, tidy up.
- During the worst of the post chemo days, prepare easy to reheat meals for one - even if she has a family, she may not feel like eating a full meal that the family eats. Soups are great for this - nutritious, easy to defrost and heat, easy to digest and easy on the old tastebuds that have taken a battering.
- On that note, don't 'baby' the rest of the family - this is their time to step up and if necessary, feel free to tell them this.
- Be prepared to get up close and personal - following surgery one of the nicest things is to have your hair washed. If she can't have a shower yet, sit her in a chair outside or near a sink and gently wash her hair. Offer to be with her while she showers when she is able
- Be a 'gatekeeper' if necessary, especially in the early days. Answer the phone and the door, with her permission. In the early days, it is awful to have to tell the whole story again - check with her if she wants to see or speak to someone, and if not explain she is not up to it and that she will call later. Remember it is her call.
- Find something to laugh about - a bad joke, a silly movie, Facebook post or youtube video. Laughter is important at any time in life. I recall we were hell bent on writing a coffee table book of 'stupid things people say when you have cancer' but never got around to it. But we had a secret code via text message and we called it 'cancer bingo'. It was always good for a laugh.
- Accept that you will make mistakes and forgive yourself - I recall complaining about the humidity affecting my hair and got a rolled eye response from my then hairless sister. I felt about as low as a snake's ribcage at that point. On that note see the link to 'How not to say the wrong thing' below. All family members and friends should read this article!
- Be prepared to be a pincushion - if you are close, you may be the one person she can complain to or get angry with. Don't take it personally. In fact, offer to put a pillow on your head if she needs to punch someone or something.
- Remember that when chemo and/or radiation are finished, life does not go back to 'normal'. There is no 'normal' now. She will have good days and bad - so continue to check in, text, phone, just see if she needs a shoulder to cry on or an ear for listening. If she doesn't how fantastic - I would still rather ask than think everything is ok.
- Find a way for chemo day to be something else other than chemo day - I took to buying my sister a new pair of earrings to give to her each time. It gave her something to look forward to amongst the dread of what was to come (even though it was not as bad as she had imagined). It might be as simple as a letter to open each time, a flower delivery, a small gift waiting for her at home - it doesn't have to be expensive to be effective.
- If you are intuitive and sense abnormal anxiety let someone know to call - knowing others care is very important.
- Be strong - there is no point being squeamish about scars, stitches, drains, chemo, or radiation. Show that the external scars of breast cancer don't affect you; that yo are there for her regardless of anything else
My sister came through her treatment with flying colours. She would have done so without me or the other support people in her life. However, I feel privileged to have been able to be by her side and by the phone when she needed me.
And on that note, here is the link to 'How not to say the wrong thing' or the kvetching rings as it has come to be known and compulsory reading. In short 'comfort in; dump out'.