Friday, 30 October 2015

Breast cancer awareness month: "But I don't know what to say"

Author: Anonymous

A recurring theme among my breast cancer chums is how we lose friends and acquaintances after we get diagnosed. Some people, who we least expect, step up and are amazing. Others who we'd normally consider really good friends fall by the wayside. Some of us have found that once our treatments finish those same friends expect to pick up where they left off and this is difficult for us. We've witnessed that when the chips are down they didn't have our backs.

Don't get me wrong some of the phrases that I'm mentioning have probably crossed my own lips before, but let's say after my diagnosis and subsequent treatment I'm a little....let's say.....more aware of what I say.

It's really hard for us to know that you've been avoiding us simply because you didn't know what to say or do. When all is said and done, you know your friend, you know which of these tips applies to your friend with breast cancer. Most of these are personal to me, some have been inspired by my breast cancer friends. I hope they help you understand a little bit more about how your friend is feeling. Above all else, when the chips are down it doesn't matter what you say or do as long as you carry on saying and doing something - anything. We lose so many friends and that's really sad.

So let's crack on!

That head tilt!'s ok to feel sorry for someone with cancer, it sucks after all, but sorry is an apology and you have nothing to apologise for. It isn't your fault. It isn't anyone's fault. Instead think about saying "I'm so sorry this has happened to you, can I do anything/would you like to talk about it". We know you mean well but that head tilt speaks volumes to someone diagnosed with cancer.
Cancer isn't a fight, it's a bloody endurance test and yes we need encouragement to get through treatment and surgeries but we need support above all else. Saying things will be fine is belittling our situation. We never know it will be fine and what makes me more of a fighter than someone who lost their life to cancer?.... Did they not fight hard enough? Instead think about saying "I hope everything turns out ok" or "I'm praying for you" or simply "Do you want to talk about it?"
We won't ask! We're stubborn creatures but we are also independent and feel we should be at the prime of life. Nothing blows your self esteem than having to ask for help. If you want to help, pop around with a lasagne for the family, we need to eat well. Ring us on a Saturday and ask if the kids or us want to go to the park. Ring us when you are in the supermarket and ask us what we need. If you've come around for a cuppa and you feel inclined go ahead and make the tea and possibly do that bit of washing up. We will be forever grateful for your help but we probably wont ask and we'll probably say "oh it's ok I don't need any help but thanks for offering."

Surgery options, treatment options, reliving diagnosis, worries, fears or just generally wanting a whinge. No opinions needed just a kind ear.
We want to know what's going on in your lives. Nothing sucks more as a cancer patient than being the last to know anything. We want to know what's up with you right now. We want to be able to help and advise as we always have. We are still your friend first and foremost and to be honest it takes our mind off of us a little at your expense but it's nice to have something to think about other than cancer.

For one thing it's always beneficial to have a second set of ears. Hospitals are horrible and a lot of time is spent just waiting. Take her to chemo and keep her occupied. Take notes of what is said. Hold her hand.

A lot of cancer patients feel like all their decisions are being made for them and the truth is they probably are. If you have a party/lunch date/dinner planned don't assume that they won't want to come because they are having treatment. Invite them as you always would. A patient can feel fine one minute and dreadful the next. It helps them to have a focus and plans in place and if they cancel at the last minute don't be mad just rearrange. A lot of cancer patients believe it or not lose friends because they become less reliable than they used to be for obvious reasons. It won't last forever but their recollections of how you handled those situations will last a lifetime for them.

Lots of us blog our experiences. Read them.......all of them. You'll probably learn a lot.

We of all people understand what it's like to feel poorly and to be honest most of the time our immune systems are so trashed the sniffles for you could mean a hospital stay for us - but the internet is a wonderful thing and so is connecting to the people you love. We want to know what's going on in your life. So think about Skype or FaceTime it's a wonderful way to connect and chat that doesn't make our numb fingers ache. If life has been manic fair enough but you know what there's always a minute for a quick text even if it is just to say "things are manic, catch up soon" - you probably would have before.

That may be true, but give us some credit our bodies are going through hell and so are we. We might be pretty cruddy friends right now but we're still your friend and to be honest the chemo fog makes it hard to remember our own names let alone yours. Sorry!

It's not all doom and gloom. We still like a laugh as much as we ever did. Joke about things when appropriate to do so. If she's worried about going out in her wig do your hair up so hideously that no one will be looking at her. You'll laugh! I bet.

Truth of the matter is cancer is lonely. We lose people because they feel they don't know what to say or do. Send us messages, arrange visits, ask us out for coffee no matter what we'll be grateful for the company and change of scenery.

So talk about the weather, tell us about the shoes you bought for your date on Saturday.........tell us about the date on Saturday! Tell us about the annoying woman at work who went around all afternoon with bog roll stuck to her shoe! We wanna know! We're interested in life outside of cancer too. It's your company and most of all your friendship we want not an in depth profound conversation on the meaning of life.

With anything! Just anything. Little gifts, cards, letters, magazines, DVDs, pamper sessions, conversation.

Well that feeling is mutual but please don't lay any unnecessary guilt on us. We already feel guilty for upsetting the lives of our family/friends/kids/partners.

Yes please! Please help us to nourish ourselves when we're probably too tired/feeling too rubbish to do it ourselves. Co-ordinate with your other friends so we don't end up with 6 dinners on one night. Flowers and chocolates are lovely also but you can't beat a home cooked meal.

If she says struggling with the house work suggest a cleaner, phone around some and ask for quotes or see what local charities offer the services, if you can tell she's generally not herself suggest she seek counselling which is available to nearly all people diagnosed. Or again look up local charities, the Haven offer specifically tailored courses for women with breast cancer. Encourage her to accept all help that's offered to her. It can be a very hard thing to accept that you need help- support her through it.

Who wants any sort of cancer?! No cancer is good cancer. People die from breast cancer. Nearly 12,000 women a year in fact. There are lots of treatment options, but for some women those options run out. Just no!

Well thanks, maybe I will and maybe it'll hurt less than major surgery or Tax chemo aches!

The worst thing that can happen when you feel like pouring your heart out is being told "don't talk like that, you've got to stay positive". We do try to stay optimistic on the whole but sometimes it's good to let it out. If we want to talk about worst case scenarios or who we want to look after our dogs if we're not here one day then just let us say it. We're both hoping it won't come to that.

Take her out, take her kids out, do the school run, take the dog for a walk. Cancer affects not only the person diagnosed but all those around them too. Try to help her make day to day life as normal as possible for everyone else.

Well it is a bonus not having to shave but not having hair, lashes or brows sucks! I don't care if I have a nice shaped head! I want my long locks back and I want to have to spend 1/2 and hours tousling my tresses before a night out!

Thanks for these little nuggets. For now I'd like to form my own opinions based on medical facts, thought through and discussed with my oncologist. I'm not dismissing your ideas but please don't ask me to accept your ideas as medical fact. It's a minefield as it is learning a whole new medical dialect. Find me a leaflet and I'll have a read if and when I'm ready.

Nothing is screaming out of a cancer patients head more than the thought of death and dying. Lots of people die from cancer, that's a horrific fact. We've probably lost people we know and love from it too. Just don't say anything on that subject at all.

Hair cutting before chemo, throw a party. Birthday, throw a party. End of treatment, throw a party. Good test results, throw a party. We love nothing better than a good excuse to be around the people that we love.

There will be times when we still continue to look pretty amazing, it normally takes some effort, makeup, wigs or withstanding the cold cap. But don't presume because we can look well that we are. A lot of people especially those with secondary breast cancer can look really well a lot of the time. The honest truth is we normally get tired very easily, can pick up bugs pretty swiftly and that's not to mention the psychological impact we're going through. Instead say something like "you are looking well today, how are you feeling".

Tell that to the 6 month old baby with leukaemia. Cancer doesn't give a damn about your age. We can't say I'm sorry Mr Cancer sir but I can't have you because I'm only in my 30's so go away.......if only.

Yes! Friends do ask. Reconstructions after a mastectomy aren't at all like having an augmentation. We may learn to live with our scars and grow to be proud of them but early on they cause us an array of emotions, they are red and sore. Most of all we all pretty much liked our boobs just how they were thanks very much. If we want to show you we'll ask if you want to see.

If we've just had chemo probably be in our pj's looking and feeling a bit rubbish but your effort counts a ton. We might not be up to much conversation especially in the early days after chemo but we love seeing you and yes we'd love a sandwich and a cup of know where the kitchen is.

The best any breast cancer patient can hope for is NED - no evidence of disease. Breast cancer has a funny little habit of rearing its ugly head even years down the line. We don't get given the all clear -we get sent away with a list of symptoms to look out for for possible recurrences and we have yearly mammograms to check for recurrence. And even if my body is cancer free now, my mind will never be.

No one knows! We've probably racked our brains, calculated every contraceptive pill we've ever taken. Recollected every bump our boobs have taken. Analysed every morsel of food and drink that's passed our lips. Unless we are diagnosed with a gene mutation which could give us a greater risk there's just no way of knowing. Unless we bring it up let's let sleeping dogs lay.

Surgeries, steroids, anti sickness drugs and chemo not only knock us on our backsides and make some of us less active. The steroids and anti sickness meds actually fuel our appetites. Not all women are the same - some lose, some gain and some stay the same.

I go back to the "all women are different" comment and also add all chemos are different. Some people sail through chemo, some end up so sick with it that they can't even have all of their treatments. Don't make your friend feel bad for not living up to your expectations.

If there's anything your friend could do with, especially if she has no hair, has gained weight, is loosing her nails, has no brows or lashes, it is an ego boost. Compliment her on how fab her wig is, or her new sunglasses. Try to avoid saying things like your new hair cut really suits you, FYI it's not a cut and we didn't choose it. But we like compliments just like the next person.

No no no no no! Just don't ask. We aren't told. How long is a piece of string. Unless we say otherwise we are gonna live till we are old ok.

We're fighting for our lives here. Please don't dismiss yours with a flippant remark. 

You could and you would if you had to. Brave is making a choice to do something that scares you. I suppose in a way we do make a choice to endure the treatments but the alternative is much scarier so in that case I'm actually a great big scaredy cat......see what I did there.

It's not a walk in the park for us either but we're hoping this is just a blip. Sometimes in life you have to face difficult situations.

................ We need you now more than ever!

So there it is. I'm sure there are many, many more that I haven't thought about. Feel free to add them in the comments.

Like I said before though these are just tips if you are finding it difficult to know what to say and what not to say but at the end of the day we just want to stay friends and for at least one aspect of our lives not to change forever.


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