This is a strange story for me to write. It will at times be a sad story, in many ways it will be happy and perhaps even funny. It will be an adventure that entails anxiety, flirting with danger, fortitude in the face of adversity and many attempts to look on the bright side. There will also no doubt be moments of anguish and despair, and a lot of uncertainty. It's a story that will hopefully be cathartic for me, but also interesting and perhaps informative or even entertaining for others.

Tuesday, December 7, 2010

What Not to Say to a Cancer Patient

Cancer patients and survivors deal with many comments made by people with good intentions, but they are often quite hurtful or insensitive. Sometimes these comments are due to the person’s own discomfort and lack of knowing the right thing to say. I understand that.

However, as the receiver of many comments that I would rather not have heard, I have decided to put together the following list of things not to sat to a cancer patient./survivor

§ “Everything will be ok”

(Similar to “don’t stress about it”, “I’m sure the tests will be fine” etc)

You don’t have any way of knowing this so it’s best not to say it. It almost dismisses the reality of facing death.

§ “At least they caught it early”

While this is often a good thing in terms of prognosis, like the above comment this trivialises the serious of having cancer and that no matter how far it has progressed, it is still a deadly disease.

§ “Stay Positive” or “At least you’re being positive”

People regularly told me about all the studies they had read about how a positive attitude helped someone survive cancer. I don’t doubt that being positive is helpful, but it’s not always possible. Therefore, no-one should ever tell us to stay positive. We have cancer, we will not be positive all the time. We are upset, angry, anxious, scared, tired, panicked, in denial etc. We have a right to feel all these things and not always feel positive, without people making us feel like we’re jeopordising our chances of recovery.

§ “Great, your chemo is over. You must feel wonderful”

I think the reality is that it’s quite scary when your treatment is over. While you’re being treated you feel ‘safe’. When it’s over its like you’re on your own, and in some sense it’s like you’re just waiting for the cancer to come back.

Additionally, for a long time after treatment you feel like crap. There are a huge amount of lingering effects (physical and emotional) that don’t go away when the chemo does.

§ “I’m having such a bad hair day”

(“At least you look good bald” or basically any comment about hair!)

This is a very sensitive topic for many cancer patients, particularly women. Hearing other people whinge about their hair being dry or frizzy or not liking the new colour they got is heart-breaking. I hated losing my long hair and felt so ugly and unfeminine without hair. I would have done anything to keep my hair, no matter how dry or frizzy it was. Someone making comments such as these is just plain insensitive.

§ “If there’s anything I can do…”

Don’t ever offer your help or support unless you have every intention of doing something if you’re asked. The reality is that this is just something that comes to people’s minds as the right thing to say. Don’t say it unless you intend to keep your word. Even if they don’t ask for help, think of something and do it. Send flowers, mow their lawn, bring them dinner. Anything that makes them feel loved and will ease the burden for them.

§ “It’s just a bump in the road, you’ll get through it”

I can swerve and avoid a bump in the road, I couldn’t avoid my lymphoma. The living hell that is cancer and its treatment, is much larger than a bump in the road.

§ Don’t talk about someone you know that died of cancer. Don’t talk about death at all.

§ Don’t talk about the alternative medicine you heard of through a friend of a friend that knows someone who beat cancer without treatment. Don’t tell me I got cancer from drinking tap water, or because human’s shouldn’t drink cows milk. It doesn’t help.

§ Last but probably most important, don’t ignore them.

Don’t avoid me at social gatherings because you don’t know what to say, don’t pretend you didn’t see me, don’t stop calling me because it’s awkward. Imagine how tough it is for me and you’re worried about it being uncomfortable. This makes me really quite angry, but even more so it’s incredibly disappointing. Just ask how I’m going.

12 comments:

Pangari said...

I love this page! I don't have cancer but my 16 month old son does. In fact he has the same rare liver tumour that Mikayla Francis had, Hepatoblastoma. With Casper being so young, I am the one that hears all the things on this page and it is so upsetting at times. Especially the one about "be positive". Of course I try to be positive all the time but like you say that is not possible and so then when I am not able to be I start to blame myself as though my inability to be permanently positive has somehow meant that the universe blames me! Like my weakness is the cause of his cancer! The one you forgot though is the one where people say or send you stuff about studies they have read about food etc that cause cancer...obviously I ate the cancer into my son!!! Or all cancer victims must have done it to themself by bad diet!!! Not helpful people! Cancer is crap and it does not discriminate by gender, race or orientation. If you get it you are just bloody unlucky! Best thing you can do for someone battling cancer is just listen and offer hugs where needed. Or else if you feel the need to do something for them, cook a meal for them, take them to a movie, mow their lawn. And if you feel awkward and don't know what to say then just say so, or say nothing at all! The rest will take care of itself!

RIP beautiful Mikayla! You are my inspiration and I tell Casper about your beautiful spirit every day.

Riaane said...

Thank you for comment Fiona. I'm sorry to hear of your son's cancer. You and your family are now in my thoughts. All the best xx

Anonymous said...

Oops sorry Riz.
Love Mel
ps water and milk thing is weird

Anonymous said...

I hope everyone we know gets to read this page Riaane. This is the most incredible piece of writing Ive seen by a cancer patient. These issues also apply to many other challenging health conditions whereby some people cannot stop thinking about themselves long enough to acknowledge what it might actually be like for the person involved. The horrific silence that comes from so-called friends is just as devastating as the tests or treatment.

The other side of that are the beautiful new people that come into your life as a small blessing in contrast to all the emotional & physical pain. If only that holding your chin up or being positive was the solution to cancer treatment - you are one of the most practical and positive people Ive met. Quite a few family & friends of mine would still be here if it was that easy.

Thank you so much Riaane for lifting the lid on such a personal but common problem - too much has been kept private so that other people could continue to live in denial & not get out of their comfort zone whilst other people suffer. You are a true chanmpion Riaane. xxx LR

Anonymous said...

Hi Riaane, i know just what you mean. I have a mental illness and have had scores of thoughtless things well-meaning people said to me cos they don't know better. Sometimes i felt like punching them there and then :D but when i finally calmed down, I realise they are just ignorant.

Anonymous said...

Hi Riaane, i know just what you mean. I have a mental illness and have had scores of thoughtless things well-meaning people said to me cos they don't know better. Sometimes i felt like punching them there and then :D but when i finally calmed down, I realise they are just ignorant.

Anonymous said...

Thank you for this post. Someone very dear to me was recently diagnosed with a cancer similar to yours. I sure do not know what to say to her. This list helps a lot.

Anonymous said...

After reading all the different posts on this subject, it really makea me wonder what the hell I am supposed to say. I can't say I'm there if you ever need to talk or that I'm sorry for what you are going through. Can't say you are looking really good or tell you that my aunt had a succesful alternative treatment for the same thing? It sounds like you just want everyone to think you are a dick. How about a few articles on what we are allowed to say. Maybe "you are so much stronger amd tougher and better than me in every single way."

Riaane said...

Anonymous, that is the whole point. There's nothing you can say. Basically you've just got to be there and be supportive and treat them like normal.

THis post was just a list of things that upset or annoyed me and may others I had spoken to. If you don't like it, don't pay any attention to it.

Riaane said...

Anonymous, that is the whole point. There's nothing you can say. Basically you've just got to be there and be supportive and treat them like normal.

THis post was just a list of things that upset or annoyed me and may others I had spoken to. If you don't like it, don't pay any attention to it.

Riaane said...

Anonymous, that is the whole point. There's nothing you can say. Basically you've just got to be there and be supportive and treat them like normal.

THis post was just a list of things that upset or annoyed me and may others I had spoken to. If you don't like it, don't pay any attention to it.

Anonymous said...

Another one to add "at least it'll grow back" when I mentioned my unhappiness about my thick long hair falling out in clumps. Of course I knew it would come out and I know it will grow back but this doesn't affect the way I feel about myself.