Over the last 12 months my personal Facebook has gone off. I feel like I am the new cool kid on the block. I have had an influx of friend requests from people that I have not seen for 20 years (take note that I am only 23!). Friend requests from friends of friends. Friend requests from my sister’s friend’s sister. And friend requests from complete strangers. I apologise now for deleting 90% of these requests.
As you can guess, I haven’t been short of people offering love and support to me over the last 12 months. I have the most amazing family and friends who have been with me every moment of the journey. But unfortunately, I have lost some friends along the way and shed many tears over what some people consider being supportive.
Everyone wants to be helpful and supportive. Most of the conversations I have are very encouraging, but on the other hand, some are less then helpful.
Over the last little while, I have started to document some of the silly things that people say to me. I am now at the point in my cancer journey that I can laugh about the crazy things people say and do, but it has taken me a long time to get to this point.
I want to highlight now that I understand completely that it is difficult for people to know what to say to someone experiencing great hurt in their life. What may be offensive to one person may not be offensive to the next. This post is not about shaming, but it is a post that I hope people can relate to. I also hope that this may help guide you in how you support someone through this difficult time.
Most of the points below are mine, but I have also included suggestions from my Facebook post last night (https://www.facebook.com/dearmelanoma1).
Stay positive/Keep on fighting – This one is a shocker! I am not going to lie, this is one that I don’t ‘grin and bare’. As I was leaving an appointment one day I was told, by someone who should know better, that I should stay positive and that they know people in my situation who have lived for 10 years (this is just after I had been told I had 3 months to live). I promptly turned around and said in my usual delicate way; ‘I think I am pretty bloody positive for a 22 year old that has just been told they are dying!’
Many people ask me what has been the most difficult part of my diagnosis. My response is always the same - I struggle when people tell me to ‘stay positive’ or ‘keep fighting’. Even though people mean well by saying these words, every time I hear them I feel that I am not trying hard enough or doing everything I can do to survive this disease. You don’t want to live the little time that you have feeling this way.
‘When am I seeing you?’ – I remember in the first few months after my diagnosis that there was a lot of pressure from people to catch up. I felt, and was even told directly by someone, that people wanted to catch up with me straightaway because I was dying and would not have much time. There should never be pressure put on someone to catch up. No matter where you are in your cancer journey, you are going to have up and down days and won’t feel like catching up with people… definitely when it means that you will have to recount the same old cancer story every time. And if the person doesn’t have much time, it is their choice how they spend their last however long. You should not take offense, but concentrate on the time that you have had with this person. They will contact you if/when they are ready.
Do not just send a Facebook friend request – Remember that just because the person has cancer, it doesn’t mean that they have lost their privacy and dignity. I suggest you think before you send a request. Are you sending the request for a genuine reason? Or do you just want to see what happens in the life of someone with cancer? My suggestion is that you send a message to them and leave it up to them to add you. No one wants to feel like a performing animal in a circus!
Did your parents not use sunscreen when you were young? –This is just horrendous! Never blame the person, or their family, for having caused their cancer! This one can come down to ignorance and lack of knowledge of melanoma – Melanoma is not only a result of sun damage, but can be due to a genetic pre-disposition. But you can use a bit of tact. Asking this question in a different way would be a lot less troublesome.
You don’t look sick/You look so healthy - I hear this one all the time, and in some ways it makes me feel really good about myself. Who doesn’t like being told they are looking great?! However, when this statement comes with the person doubting whether you are actually sick, it completely changes meaning. No one wants to feel that people doubt the seriousness of their illness. I feel very lucky that I am on a treatment that has limited side effects and that my metastasis are only causing pain and are not hindering the function of any of my organs. But, it is really difficult to feel the need to justify what is happening in your body, and that you indeed have stage 4 melanoma. No lies here!
You are so brave, how do you do it? – It is quite simple… we don’t have a choice! Instead of making it a patronising question, you could send a text and tell the person that they are doing really well and that they are so brave. You don’t have to add the rhetorical question to the end.
Your doctors are liars – I received a letter a few months ago where somebody (with no qualifications relevant to cancer) had spent a whole page explaining why my doctors are liars. This upset me because I believe that the most important person in your cancer journey, apart from yourself, is your doctor, opposed to Dr Google or an untrained self-labelled ‘expert’. You want to have complete trust in your doctor or you will spend your days questioning your treatment. It is your job as a support person not to question this trust.
I know how to cure your cancer! – I may not know the person yet, but I promise you that I can tell you who it will be… it will be an oncologist and I will be among the first to be told! I have so many people offer their advice on how I can cure my cancer – Go to Mexico! Drink green smoothies! Ingest liquid cannabis! Go and see this woman who cured her own cancer!
People mean well by sharing their knowledge and what they have heard along the grapevine, but this kind of advice should only be given when welcomed.
Steer clear of using ‘at least’ or ‘only’ – Using these words never seem to end well. Here are some examples:
'You are lucky that it is only melanoma.'
'At least it is only breast cancer; wait until you get bowel cancer.'
Need I say more? I think you get the picture.
You are so young! – A regular response that I get when people hear that I have cancer is, ‘you are sooooooo young!’ followed by, ‘that is so unfair’. Yes, I am aware that I am young. And yes, I am aware that life is unfair. It is quite patronising and I also do not need to be reminded on how shit it is that (a) I have cancer, and (b) I have cancer at 23.
Don’t put your own needs before the needs of the person directly affected by cancer – This is a really difficult one for family and friends because everyone is affected by a cancer diagnosis. However, it is important to recognise that your feelings should come second… or even third or fourth, depending on how close you are to the person. Mamamia published a fantastic article earlier in the year explaining this (http://www.mamamia.com.au/social/saying-the-right-thing-to-someone-with-cancer/)
It is in God’s will/God will heal you – For many, religion provides comfort through difficult times, like a cancer diagnosis, but be aware that this is not the case for everyone. Instead of telling someone with cancer that ‘it is in God’s will’ or that ‘God will heal you’, simply let someone know that you are praying for them and that they are in your thoughts. For me, these statements make me question if there is indeed a God, why would he have given me cancer? Be aware that people may have similar feelings.
We are only given what we are strong enough to handle – If that is the case, I wish I was a hell of a lot weaker than I am!
One positive scan – so you are cured now? – I love this one. I have scans six weekly and every time I have a positive result, some of the more elderly people in my family like to think that I am now going to be miraculously cured. I have a giggle about this, but deep down it is difficult. You don’t want to have to explain to someone every six months that melanoma is still going to get me in the end.
Don’t compare their experience with cancer to anyone else’s –Do not whip out a story about your sister’s friend’s best friend who died from cancer. Hearing a story about how cancer has killed their friend or relative is not what you want to hear when battling cancer. On the hand, sharing a survival story can also be difficult. Everyone’s cancer story is different and should never be compared.
As I said at the beginning of this post, I have some pretty amazing friends and family. Based on my experience, here are some suggestions on how to navigate this difficult time.
Ask the person directly what they want from you – I remember early on in the year I was having a difficult time with some friends putting a lot of pressure on me to see them and update them on everything that was happening in my life (CANCER, CANCER, and more CANCER). One dear friend called me and asked me directly what I wanted from her in terms of support. I told her to call when she can, text when she wanted to, but to not expect that I will reply every time. Knowing that she was there and thinking of me meant so much.
Send a text, letter, leave a voicemail, but don’t expect a reply – It means the world!
Know your friends and family, and know who is best suited for each situation – This was so important to learn early on in my cancer journey. Some of my best friends I do not go to for emotional support, because I know that it is too hard for them. But these people are the best people to go to when I want to forget about cancer. On the other hand, I have friends that I know I can talk to about every single detail of what is happening in my body, and I know that they can handle it. Be strategic.
Dealing with a cancer diagnosis is not easy for anyone involved. It is normally our support people that hold us together in this difficult time. It is often these people that go unrecognised and them who sacrifice their feelings in order to be the best support to the person in need. Unfortunately sometimes what one person can think is supportive, may not translate to the person receiving the support. It is also extremely difficult to know what to say to someone with cancer. I hope this post helps those providing support to a loved family member or friend fighting cancer.
Jo Hilder has written an ENTIRE book dedicated to discussing the dos and don’ts on this topic. Her book is ‘Things Not To Say To Someone Who Has Cancer’. Take a look!