some advice about how to talk to people with cancer about cancer

NOTE! this is general advice that i’ve though i should collate in one space, as a few people have mentioned that they’d gotten good ideas out of other blog posts about talking about cancer. a lot of this is about how i would like people to talk to me about cancer. i think a lot of other people will have different needs. i think it’s important to ask them what they need in terms of communicating about their condition because everyone is so different – and most of these suggestions are more about how to communicate rather than what to say, if that makes sense. if any other people who have had, or do have suggestions of things that have helped them, please just let me know. this may not be particularly interesting either.  i hesitate to publish it for that reason.

1.  it is ok to not know what to say, and it is ok to say that. it’s ok to think that whatever you say is not going to mean anything – but you know what? it really really does. saying ‘i’m thinking of you’ or ‘i’m so sorry to hear what has happened, please let me know if there’s anything i can do to help’ DOES help.  it is easy to feel helpless when someone you care about is diagnosed with cancer. but saying that you care is a really, really important thing to do, and each time i hear it, i remember that it is worth keeping going, and that i have a lot of people watching my back, witnessing, and helping in so many ways. even just by saying that you care.

2. if you would like to pray for someone, i would suggest asking if they are ok with that first. i’ve made it clear that i am ok with prayers, but i know that for a variety of reasons some people are not, and may find it offensive.  if your faith means you will pray anyway, that’s cool, i guess, but maybe just don’t communicate it to the person if they’ve specifically requested that they do not want prayers.

3. during the initial stages of diagnosis, i would very much recommend staying away from stories of gory details of cancer treatment, or the death of loved ones who are of a similar age.   different people will react very differently to discussing death, and the very real presence it now has, and i think the way you feel about it shifts and changes as you move through different stages of understanding your diagnosis.  if you are a person who has, or has had cancer – or if you have great stories of survival, they are more appropriate and hopeful to share, but check and ask first. for me, it is harder to hear stories of survival from people with early stage cancer, because i know my chances of being cured are very very slim – my cancer is advanced, and although it is not a ‘death sentence’ i am smart enough to know that it will shorten my life, and most likely, at some point kill me.  for me, hope is something i struggle to cling on to, and those stories of people similar to me, at a similar point along the cancer spectrum who have kept living despite all things – it is one of the most helpful things you can do. each person’s story is different, but i like stories, and i am at a point where hopeful stories are rich, and provide me with the capacity to think and plan for life beyond this first intense stage of treatment.

4.  if you doctor-google information to help yourself or your loved one with cancer, make sure you pass on information only from reputable sources, and most importantly, no things like death rates or survival rates, unless you are completely sure they are ok to hear this.  i’ve had people provide me with some wonderful links to things that have given me a greater insight into cancer treatment.  that’s good! or personal insights – things like how to sleep with a portacath bag full of chemo (a weirdly huge worry of mine), and shared with me how hard it is when your poo goes rogue – and different calorie loading ideas to help with the weight loss –  but the process of moving through cancer treatment means there are times where you are not ready for information unless my oncologist or surgeon thinks i need to  know it – and i communicate with them VERY clearly about how i need them to tell me things, as they communicate back to me how they tend to impart information. this is something i do when i have a new supervisor at work – i like to discuss our communication styles and needs, because that way, we can more effectively and gently talk to each other, with less confusion.  i have not been given a long term survival rate number of years yet, because they have no way of knowing any individual’s number at the early stages – pre-treatment, or early treatment, there are so many unknowns.  the chemo may shrink every tumour to nothing. it may do nothing at all. it might shrink them a bit. the lung tumours might start growing super fast and spread through my body, or they may not grow at all.  these are all unknowns. some people may take comfort in this information, but please tread carefully and take your guidance from what they say, rather than what you think might be helpful.  right now, for the love of god, do NOT tell me long term survival rates for a 30 year old with stage 4 cancer, under any circumstance. (no one has done this. please, continue to be awesome and not tell me).

5.  if you can, listen to them talk about their cancer – and if you don’t/can’t/are not able to do so, let them know that you would like to talk about something else. sometimes it’s really valuable to have a friend tell you that we’re not focussing on it – if it comes up, acknowledge gently, and then gently change the subject.  as a friend of someone with cancer, it is NOT your obligation to be their Cancer Buddy who listens to nothing but long rants about the portacath or being scared of dying. i have a blog for that, you know? and lots of friends who are in a position to listen to me rant about it for hours. but if you can listen, and you are ok to talk about it, listening can help so much.  it means, for me, that i can repeat information – it makes it more real to me when i say that i have cancer.  it’s a difficult thing to integrate into your narrative.  i would recommend thinking about what kind of support you are able to give to them – and it is ok if that support does not include being a listener. make sure you also make your own needs clear, in a gentle but articulate manner. you may have had a parent pass away from cancer, or a dear friend, and hearing about it could be very painful.  it’s ok to say that, and even though for the person with cancer it might FEEL like it’s all about us (i know it does to me sometimes) it’s not. your feelings and experiences matter too.

6. if your cancer-friend has a carer/partner/etc make SURE they are also cared for.  they need support just as much as the person with cancer does.  make time out to see them alone and to distract them – make time to see the person who has cancer on their own, so again, the carer has some time off – offer to do some of the tasks the carer would otherwise have to do, like cleaning, cooking (unless said carer finds cooking soothing which is my case!), dog walking, lifts, and light exercise together.  and sometimes, babysitting the person with cancer – that’s something i tend to need a fair bit of, because i find it much harder being alone at night, unless it is raining, because i feel safe when it rains.  (what? i never said i was rational). if the person with cancer has food restrictions due to treatment, offer to take the carer out to dinner somewhere, or to cook them dinner with food they love and their partner cannot stand the smell of, or invite the person with cancer to your house so you can cook them a meal with the weird diet needs, and the carer can eat what they feel like for a change!

7. sometimes you need to be lead by what the person with cancer is ok with discussing.  this can be hard if they are not like me, and can easily communicate what i do, and do not feel comfortable with, but try and watch for body language hints – and if that’s something you are not good at, ask for clarification.  for example, as i’ve stated before, alternative therapies upset me.  to be more specific – therapies that say i should not have chemotherapy, and that my cancer can be cured by something other than medical intervention.  suggesting say, a diet that helped keep a family member’s strength up, or a combination of herbs or oils that relieved some chemo symptoms, or suggestions of foods that you can eat when on chemo, or the fact that massage or acupuncture relieves stress?  all completely fine.  my issue is with cures and causes. ie. a study saying fluoride causes cancer when in our water supply – that drinking booze causes cancer (which is a thing. i know that. most people do) – that stress has caused your cancer, and so on. anything that in any way blames the person with cancer for their cancer is really unfair and hurtful.  do not blame the person with cancer for their cancer, and do not tell them that their doctors are wrong,  because if we are going down a medical path, we need desperately to have faith in our medical teams. again, some individuals may rather do alternative medicine treatments rather than medical ones – that is a decision each person with cancer needs to make for themselves.  it is their body, their choices.  in fact, even at my point, i can choose to not be treated – it has been made clear to me that i choose my treatment plan – that i can stop at any time, and that i control my life, and my future.  i afford that same respect to any other person with cancer, as much as i may not make that decision myself. however, just as i would not tell someone treating cancer only with meditation and green juice that they were an idiot and were killing themselves, i expect the same for my decision to take a medical path. things that will help me on that path are fine.  but this is something else i would advise checking too – a simple ‘i heard that (insert name of juice, treatment, herb) can really help with recovery – and my (aunt, sister, partner, cousin) really got through her chemo better with it – would you be interested in hearing more about it’ is a good way of making sure that they are receptive to hearing your suggestions. be guided by your friend’s needs and wants. for me, i appreciate that, because i need all the diet help i can get to gain some weight!

8. optimism and definitive ‘you will get better’ statements are something you should again follow the lead of the person with cancer.  for me, hearing things like, ‘don’t worry, you’ll get through this and be fine!’ is difficult because… well… i mightn’t. i need to be honest and true to myself and my understanding of my illness. i am going to do my best, by following treatment and managing my pain and anxiety levels to live as long as i can through this. i would love to one day be told i am cancer free. but i am also realistic. this might not happen. i could die. pretending otherwise will not help me, and honestly, it won’t help the person saying it if they honestly believe it. my dear, dear mum is the worst at it – she tells me not to worry, and that the chemo will definitely work, with a cheery note in her voice. and every time, i need to gently remind her that this isn’t a given.  it is likely to work, from scientific literature my partner has studied –  and if it does not work, there’s still a lot of options. but there is also a chance that none of those options will work.  i am hoping that this won’t happen or at least not for awhile, and i will do everything i can – push my treatment as far as i can for as long as i can – to avoid this. but someone pretending that dying isn’t an option is more upsetting to me than someone being realistic and saying ‘all my hopes are with you for a speedy recovery’ or ‘i hope the treatment goes well’.  we don’t need to constantly acknowledge that i might die – but the idea that blind positivity that doesn’t take into account the real risks and the seriousness of the illness isn’t healthy for me.  but the key point is – please also discuss this with the person who has cancer. they may need you to remain optimistic at all times – they may need to hear that they WILL get better, and they will ‘beat it’.  and be a ‘survivor’.  for me, i know that any of us could be ‘victims’ rather than ‘survivors’.  which is why i don’t fight cancer.  the cancer is a part of me, and i just need to work with my doctors to make it go away.  this is why i dislike the fight metaphor because it implies that there are survivors and their are victims who do not survive the battle.  that’s not how cancer works.  it’s just about cells and bodies and things that stop organs working like they should.

9. humour is weird.  make sure that you follow the lead, once again, of the person with cancer. personally, i love making dumb jokes about all of it. bum jokes, liver jokes, cancer jokes, general jokes about the whole nasty business.  some people joke about other aspects of it.  some people can’t joke about it at all.  try and gauge how they feel, and if you have trouble doing that, again, just ask.

10.  please, please, please – never worry that your concerns are suddenly trivial because THEY HAVE CANCER. if you are mad at your boyfriend, or your cat died, or you need a new phone, or your housemates are shitting you off – that’s fine. you don’t need to feel bad because someone you care about has cancer. ‘perspective’ is true, yeah. but it doesn’t diminish your life.  i mean, if someone breaks a leg, it doesn’t mean that it shouldn’t be fixed just because other people have cancer or AIDS or hep c.  and one of the things i love most is when people tell me about their day, or the things happening in their lives. especially in emails. even if i can’t always write back or respond to it. hearing about someone’s garden, or powerlifting goals, or the dinner they had last night, or a new friendship, or expecting a baby and preparing for that?  hearing about this is my idea of heaven.  again, though – your milage may vary.  there are so many mixed emotions with cancer. some days, you know what? i don’t care about your fucking broken phone. which is MY problem, and no one else’s issue.  your life goes on.  when other people i’ve know have had similar illnesses, i’ve felt sad, and really broken, and wanted to help, and my life still went on.  and i still had feelings about my life, and felt guilty for caring about lost phones. that’s garbage.  it’s like first world problems. (don’t get me started on how much i hate that phrase.  people who are from third world countries have answered why it’s fucked up far better than i have).  say ‘life threatening illness’ is the first world problem.  writing off your car in a minor accident is a third world problem.  both of these things are issues. the broken car is no less of a pain in the arse because someone else has cancer. and, if someone with cancer’s car broke down, it would also be a fucking problem too.  if that makes sense? but yeah. again, go with what the person in your life wants to hear about. listen to them if they say that they actually REALLY want every day details.  and don’t feel bad about sharing them. ever. i want to hear them, badly.i want at least a break from cancer.

so that is my list.

a lot of people don’t easily pick up on subtle cues, body language and facial expressions for various reasons. that can make working out how to talk to someone about their cancer experiences much harder. i would advice, if in doubt, communicate your concern. if you need to, do it in writing, and do it to articulate that you want to help, but you are not sure how, or what sort of emotional support they can provide, and you are unsure of what they need from you.  it is also perfectly ok NOT to be able to provide a great deal of emotional support – there are many things cancer could trigger for you, or your emotions could be too strong for you to say a lot.  yep, cancer is about the person with the diagnosis. but it’s also about every single other person who loves and cares for that person with cancer.  at the end of the day, i really think that the emotional needs of the person with cancer should definitely be taken into account, but the support network also have needs and a background and a history with the many types of cancer as well as their own comfort levels in discussing Big Issues like this.

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About elizabeth

various things.
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12 Responses to some advice about how to talk to people with cancer about cancer

  1. greenspace01 says:

    off topic, do you collect vintage books at all? vintage paperbacks on topics you might be interested in?

    • veritas says:

      i have very specific collecting interests – in order to prevent the Collection getting out of hand… mostly modern firsts, and early editions of Byron and Shelley, and firsts of children’s classics.

      • greenspace01 says:

        yes, it is sensible to set parameters for a collection. I was thinking of a classic Penguin book of knitting, but that sounds as if it’s outside your interests?
        my sister and I both collect children’s books, particularly vintage Puffins, anything illustrated by Charles Keeping, and books we loved as kids but gave away in our 20s.

      • veritas says:

        i love knitting books for use rather than just for collection. they are a dual collection item. plus, when it comes to books, i don’t care what they are if they are gifts. because books are the most sacred gift.

      • greenspace01 says:

        that’s a lovely way of putting it – books are sacred gift indeed.

  2. Mani Kais says:

    Elizabeth, thanks. For writing this. It’s something a lot of us need to hear. Something I worry about. Wanting to say or be something useful or effective for a person and having no idea what to do, how to support. What an amazing person you are to take the time to share this kind of insight (which let’s face it, most of us don’t have) to help so many people. There are so many “aha” moments (like “My God, that should be obvious; why didn’t I realise that?”) while reading your words. Especially today. This is so important that I would really like to be able to share it if that’s okay? xxx

  3. Dani says:

    How is that you are so young and so very wise? Such a thoughtful, unselfish, practical and very very wise post. I see it’s had a lot of shares, and sharing is, I think, something you are very good at, and something you are very good at inspiring in others. Go well, and I hope we’ll catch up again soon.

    • veritas says:

      i’d love to catch up soon. i’m hoping once i’m settled into the next stage (the diagnosis and planning stage is The Worst) and into treatment, i might actually be sort of able to return somewhat to normal in terms of outings and adventures.

      thanks so much for your comment. i don’t feel very wise! x

  4. katiedavis says:

    What struck me when I read this post was how much of it was externally focused. That you have so much concern for others, for the impact of your illness on others; that you care about the every day (and my smashed phone… which really is smashed)… These things make you a remarkable person. x

    • veritas says:

      thank you so much. it’s one of the biggest things with cancer though that i’ve found from talking to other people who have, or have had cancer – it effects a LOT more people than just yourself – and how you can help them help you, also helps them. if that makes sense? i wouldn’t mind writing a post about how someone with cancer can help the people in their lives, in a way which also helps them, if that makes sense? it’s really really hard sometimes to let people give you things. you have to learn to accept kindness when you might not feel like you deserve it. that can be the hardest bit.

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