a guide

As I return to work, I realize that I can help people who are around me…and pay it forward and help people who don’t even know this information is something they may need one day.

how are you?

For most people, you probably don’t even think about the significance of the words. But asking this question when someone is terminally ill can cause a lot of stress. Do you really mean you want to know, or is it a conversation opener? If it’s just an opener, avoid asking it. And if you really mean it, beware. If you catch me on a day that’s not so good, I might just tell you more than you want to know. And if I say, “I’m fine”. You probably know that I’m not being honest. It’s a no-win situation.

Frankly, I’m not entirely certain that I will be able to tell the difference between an opener and meaning it.

Better things to say are—

  • It’s great to see you/hear from you.
  • How are you feeling today? [The key to above is the word “today” – you’re not leaving it open-ended. I can respond based on how I’m feeling at that moment.]
  • I’m thinking about you.
  • Hi Gayle, can you help with…? [Just avoid the whole opener entirely.]
  • I’m sending you love/prayers/hugs.

Overall, this is how I am: freaked out; emotionally shattered; angry; sad; determined.

you’ll be fine/ you’ll beat this

Please make an effort. Use your imagination. Metastatic cancer is terminal.

Better things to say are—

  • I’m sending you prayers/energy/good mojo/whatever. [Others may hate “prayers”, I don’t. I believe anything is possible and if your deity can help, why not?]
  • Plagiarize – grab a quote from someone you’re inspired by (Winston Churchill’s “Keep buggering on” works for me.)
  • Or, if you can pull it off, make me laugh.
  • Even something like “I’m here with you” is nice to hear.

don’t focus on my cancer or diagnosis/prognosis

Not surprisingly, I don’t want to talk about my cancer 24/7. I get very anxious and stressed about it. I am surrounded by amazing people—friends, family, coworkers—and I get that you want to know what’s going on. Guess what? You can look things up on the internet just as well as I can. And I will keep you apprised as best as possible with this blog.

Here’s a synopsis to get you started—

  • Original diagnosis (August 2006): inflammatory breast cancer in left breast, locally advanced (into my lymph nodes); no other evidence of metastases; hormone positive; HER2 positive.
  • Metastatic breast cancer (March 2020): 1 lung tumor 2.8 cm; 1 brain tumour 5mm; 1 brain tumour 4.6 cm (this is the one that was removed in a craniotomy); we know the metastases is hormone positive, but still waiting on confirmation of HER2 status before I know if there is chemo + aromatase inhibitors or if it’s just aromatase inhibitors.
  • Goal of any treatment at this point: quality of life and extension of life (as long as possible).

the world is going on as it always does

You may think: But my day-to day problems are nothing compared to what they’re going through, surely?

When everything is turned upside down, as it is for me, it is reassuring to hear that the world is going on as it always does.

you don’t look sick

No, I don’t. Isn’t that a kicker? But at some point that will indeed change.

no assumptions

This isn’t about me specifically. I’m not much of a group/crowd person and avoid even the DAG’s seasonal open house. I’m sharing this to pay it forward. To give you future insight/thought.

If you’re planning a gathering, or a trip out, it might be natural to assume that someone with a terminal illness won’t be up to joining in, so you don’t invite that person. Don’t. Ever. Do. This.

Always invite the person with cancer even if you know that person is house-bound or bed-ridden. Make sure they know that there’s no pressure to attend, but that you wanted them to know they are included anyway.

Keep inviting them to everything as if they weren’t sick. Let it be their choice if they can make it or not.

gestures over words

I am so fortunate to be surrounded by amazing people (I’ve said it before and it’s worth repeating). I’ve had many offers of “Let me know if I can do anything.” My standard response has been “Thanks, but all good right now”, followed by no request. And even if I do need something, it means I have to come up with the request and figure out if you’re agreeable to it. Be warned: I HATE asking for anything.

It’s much better to offer something specific. Similar to—

  • I’ve made extra of XXXX [food], would you like some?
  • I’ve made [treats/XXX], when can I drop it off? [Don’t even give me a choice.]
  • When is your next appointment at the cancer clinic? Smart way to get me is to say “I’ll pick you up at XXX.”
  • And if nothing else, never underestimate the power of a card or quick email. A simple, “Stay strong” goes a long way to lifting my spirits. I have one dear friend who sends me Jacquie Lawson ecards regularly.

you should try / have you heard about…/ I read about…

It’s true that there are many things outside of conventional medicine that can have amazing results. If you want to suggest something to me, please remember that I’m trying just about everything I can manage already. I have a whole care team focused on me. We’re trying everything. Please let my doctors do the doctoring.

I’m not against complementary/alternative medicine, but I am using some common sense—

  • Proof? If there’s nothing to prove that it works and nothing that disproves it either (scientific study perhaps?), I’m not interested.
  • It’s important that whatever it is, it cannot cause a loss of effectiveness of the conventional medications prescribed.
  • If I’m spending hundreds to thousands a month, is it really worth it? Not in my opinion.

you’re so brave / you’re so strong

Some people get a little upset hearing these words. Due to a comment below, I’m rethinking how this applies to me.

I know you mean well when you say this, but I don’t feel brave. Bravery is something that happens when someone chooses to take on something scary. I don’t have a choice. Same with being strong. I don’t have a choice.

You’re so stubborn is accurate and somewhat funny to me. Like you’re telling me something I don’t already know.

i know how you feel / I understand / I know what it’s like

Please don’t ever say things like these.

Do you have cancer or other terminal illness? If not, then: No. You. Don’t.

Just because you’ve developed some knowledge and especially empathy due to someone else’s diagnosis, doesn’t mean you know or understand what I’m going through.

it’s okay to say “I don’t know what to say”

Live. Laugh. Thrive ❣

4 thoughts on “a guide

  1. I appreciate you writing this but I would like to respectfully contest one point. You say you’re not brave because you had no choice. You absolutely had a choice.
    Not to be morbid but you chose to do what you could to extend what time you have. You didn’t choose to lay down (and that would have been the no choice path IMHO).
    You are brave, you are a fighter, you are living and you are still (and always have been) one tough cookie (pg verbiage there) and don’t you forget that.
    I am sending you big hugs, huge positive vibes and as much love as I can.
    Stepping down off my soap box now…back to your regularly daily activities.

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