Breast, secondary cancer

Secondary breast cancer is cancer that has started in the breast and spread to other parts of the body. This group is for people affected by secondary breast cancer to share experiences and get support.

Cancer - We Need to Have Conversations in the Asian Community

Shantiqueen
Posted by

Dear All,

In 2014 I was diagnosed with metastatic breast cancer which had spread to my bones, a horrible and very painful disease as are all cancers.  That's my disease but I AM NOT cancer.  I am a 50 something British Indian Woman.  So what you may say, well in the Indian community no one openly talks about disease, especially something like cancer.  There are many reasons for this, pride, a sort of stiff upper lip, social stigma, shame and gossip.  

When I was first diagnosed the initial reaction from my close family was no-one needs to know, we will deal with this ourselves and support you.  But we did very quickly realise that we did need indeed support and after some gentle persuasion my siblings and I persuaded my mother to tell her siblings and my late father’s closest family.  We all needed someone that we could turn to and talk to.  I first told my oldest and closest friend from school days (she is Asian and has been an amazing support), my siblings told people they needed to tell.  We certainly felt my mother who is her 80s needed support as much as I did and she has indeed received love and comfort from people she can talk to.  However the circle Indian friends/family that know about my condition compared to the non Indian friends I have told and who have supported me through the highs and lows remains small.  

Unfortunately as a community we let ourselves down by not openly talking about problems in particular diseases. This disease, this cancer takes many forms, from curable, manageable and sadly still in many cases terminal.  It is not necessarily the life sentence it may have been decades ago but like my cancer can be managed to live a relatively normal life with the occasional set back. Whatever the type of cancer we have, love and support from others is so crucial in our fight.

So I want to say to any Asians or anyone from a similar background pleases talk, start a dialogue with people in the community.  If we don't talk openly or share our experiences we don't help others by raising awareness, by helping others maybe get diagnosed more quickly, through education and awareness only can we ensure that this isn't something to be ashamed of.  I know many in the community who have no idea what to say and blurt out the most inappropriate or hurtful thing but isn't that due to a lack of understanding which can be remedied.  Very soon after I was first diagnosed and was undergoing radiotherapy I received an unexpected call from a relative, her opening words were "Oh my god, I just heard, did they catch it in time".  It is unfortunate that I was the only one home to pick up the phone and whilst her intentions may have been good, why would you even ask or say such a thing as a greeting??  Another favourite is "Are you in pain?", "How are you feeling today".  If I really told you what would you say to make it better, how would it make me feel better or you for asking?  Just talk to me about normal things, my closest family & friends who have supported me make the effort to take me out, to make me laugh and joke with me, to plan things we could do when I felt up to it, holidays, days out etc.  The majority of Indians would come over with the look of doom and despair on their faces "Oh my god, what has happened" oh wow is me... Gloom and more gloom. I am being brutally honest here, well maybe not as brutal as I could be as I have purposely blanked out some of the more stupid things people have said to me.

I don't understand why our community cannot deal with this better, we are compassionate, our religions teach us to serve, to love, to be good people but so many are just incapable of translating this into love, help and support when dealing with life changing illnesses.  I would say again we can only change this mentality by talking about it more openly.  I don't want my family to worry that when we go to an Asian functions that people are looking and gossiping "oh you know she has cancer, oh it's terrible, HIYA, oh I don't think she has long ...etc etc.."  When they should be saying "she has cancer but look how well she is doing, how amazing her family are!".

Cancer is a disease that I have but I am still ME, I may not have the body I used to but I still want to live a full life, to laugh, to see the world, to wear pretty clothes, to work and be normal.  Don't pity me, my family or anyone else in a similar situation just talk to us about normal everyday things. Be happy with us for everyday we are here, every battle we get through whatever the future may hold. 

I have started this discussion on the breast cancer group but I do welcome anyone from other areas of the on-line community to join this discussion and share their experiences or advice.

Thank you for reading and understanding.

https://www.youtube.com/watch?v=CWzrABouyeE

barbaral
Posted by

What an exceptional post and so true. I'm not from the BC group but I saw your post in the 'new posts' list and wanted to tell you I'm right behind you. Breaking down the barriers of ignorance and 'politeness' that get in the way of people talking about cancer in a positive way is a big challenge for us all.  People I work with know I'm a cancer bore and I'll listen to anything they want to say about their own or their family and friends' experience with the diseases.

Keep in mind that the white British and Irish communities were just like this until a quite recently. It was as if people wouldn't say the 'C-word' out loud as if it were a dirty word.  I would also have to say that the Asian community doesn't have a monopoly on saying incredibly stupid, crass and insensitive things about cancer and people who are living with it. I think everybody does that - even when it comes from a place of kindness, they can still get things SO wrong partly from embarrassment and mostly from panic when confronted with things they don't understand. And of course every person with cancer is different and some want the hugs and prayers and others want to be told to 'snap out of it' and it's hard to predict who will take which path.

Thanks for your post.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Shantiqueen
Posted by

Dear Barbaral,

Thank you so much for your reply.  It was so difficult to write this post and to hit the Post button, your positive feedback means so much to me.  

I understand what you are saying about communication issues and this not being just an Asian issue.  I have many friends from different cultures and countries and my experience to date has been generally very positive with my non-Indian friends. I have noticed that some people say nothing as they do not know what to say or are scared of saying the wrong thing which is fine.  My family have been very careful when sharing the news amoungst our Indian family and friends, telling those who would be expected to be loving and supportive but we still found the odd rogue element . Over the last year I find I keep encouraging Mum to just tell people and not worry about the reaction. I think Indians generally think this is not a good news story so why shout about it.

When I was first diagnosed I did not see the need to tell too many people but just people who I was close to, I hated to talk about my disease.  But over time I have changed my own attitude and come to realise that we do need to share our experiences if only to try to improve outcomes. I had a particularly difficult experience getting diagnosed which I think many people do and unless we talk openly about the positives and negatives we can't change things for others. 

I think you are right that as a community we are probably many years behind others in attitude and mentality which fills me with hope that things can change. Also I have had some positive experiences too with family and friends which give me hope but there is such a long way to go yet. 

Thank you again for your supportive response and feedback. 

Xx 

Leolady56
Posted by

What an amazing read. Thoughtful and inspirational too.

I must say in my experience there are swear words people are happier to use than the word 'cancer'. I am a little naughty and tend to use the 'cancer' word if people are openly not using it - sorry that is almost a contradiction in terms.

Do please keep writing wonderful pieces like this for all communities.

Wishing you continued strength to make others in your community and all communities the ability to speak openly and frankly about cancer.

Take care

Leolady56 aka Lindsay

 What is a Community Champion? How to add to you profile Life is like a boxing match, defeat is declared not when you fall ..... But when you refuse to stand up again ....... So, I get knocked down but I get up again. x

barbaral
Posted by

Hello again

I've been off googling for you and found this group of women based in the London area. Probably not the right geography for you, but I can imagine if you were to give them a call, they might well have wider connections to identify if there's anything similar where you live.  They are clearly dealing with issues similar to yours and I hope they might be able to help you too.

Thinking about it, it's strange that cancer should still be so stigmatised. There are other illnesses - life changing or life limiting ones like diabetes - that are very big problems in the Asian community but it seems people can handle that or heart disease so much better as a socially 'ok to talk about' topics.

But you're absolutely right that the problem of not talking about cancer won't be solved by not talking about cancer.

Every time a celebrity is diagnosed and 'comes out' as a cancer patient (which is ridiculous in itself - it's nothing to be ashamed about) the public do start to talk if only to say "I never would have thought HE would get that". My husband had to get his prostate checked out with a nasty biopsy and said the doctors told him lots of men had been getting prostate checks because of Bill Turnbull and bowel checks because of George Aligiah  so every person who speaks openly about their cancer makes a difference to others.

That said, NOBODY should ever feel they HAVE to talk about it if they don't want to.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Shantiqueen
Posted by

Hello

Thank you for the group link, I will look into it. I am based in the Midlands but as you say the organisation will probably know of a similar group more local.

Yesterday was my monthly hospital visit, a day if needles and seeing my consultant, collecting meds etc.. a long tiring day so hope you will forgive my tardy response.

I have shared my post with friends and family and have received very positive support as I have from the on-line responses and likes which is really touching.

Whilst the community deal with some illnesses sort of adequately my cousin pointed out

"Asians are rubbish about talking about ANYTHING
- grief, emotions, being gay, illness, depression, alcoholism, divorce..... the list goes on and everyone suffers in the end"

We can only hope that each conversation and each generation will change these backwards ridiculous attitudes.

Thank you.

Xx 

Shantiqueen
Posted by

Hi Lindsay,

Thank you for your reply, it made me chuckle. Good for you, whilst most of us probably do swear a lot in our heads at these people, I love that you are teaching them to use the word they are most scared of CANCER.  You never know what sort of response you will get when you first tell people, some break down, some (oops change that to most) say something stupid, but the best have been yup ok right so when you feel up to how about and launch into a list of things we could do. 

I tend to message people now rather than have a face to face discussion which can be overwhelming for some. Hopefully thid allows them to process the information and if they want and are comfortable to say something then they will, if they don't then that is fine too. Everyone is different, I started this journey not wanting to talk about the disease and now probably talk too much about it.

We have just had 5 mins of rain.. I don't think it's made any impact on the poor garden.

Anyway thank you again and I hope everyone is enjoying this amazing summer and coping with the heat ok.

Xx