OMG, have just stumbled upon this thread and am SO relieived to find out I am not alone.
To be fair, none of my nearest and dearest have uttered the 'P' word but many others have. I think it is such an accepted word with regards to cancer that it is now almost inbuilt within us.
I was diagnosed in July, had lumpectomy, radio and tamoxifen - I was given the option of chemo but decided against it, something I have not told my family as they wouldn't understand.
Throughout the whole process I have forced myself to slap a smile on my face, brush it aside as a mere annoyance and get on with it. I have never cried in front of anyone or asked for help. I've had 5 days off work in total for my treatment (following my op) as I didn't even want my boss to think I wasn't coping remarkably well.
Keeping up this positve front has been totally exhausting and now I look back on it, detrimental to my health. I am sure it has taken me longer to recover as I refused to accept help or admit any wobbles.
i wish I'd read this at the beginning of my jouney - maybe I wouldn't have felt so alone.
Hi Loolie, another word that really annoys me is the word "Battle" grrrrrrrr , as if cancer is a war ,and depending on how hard we all fight we will either Win or Loose the battle ! (as if we can control our own bodies)
Makes me really cross, I find myself forever biting my lip these days, arghhhhh.
Huge Welcome to BCC Loolie, its a a great place to be able to offload where at least here everyone understands!!
Years ago, that's what people believed. Someone had got cancer because they fell downstairs or had a nasty shock, or had a negative attitude. All rubbish of course. Although having a positive attitude can help us cope better sometimes, there are also times when we need to rant and rail against what is happening to us.
Thankyou, thankyou, thankyou Cornishgirl for putting so beautifully into words what I've been feeling (I joined the forum after reading what you wrote so I could comment). I've had the "be positive" comment from all sides and at one point felt really afraid that I could be making the cancer grow because I was upset. This is so wrong.
I understand that people are trying to be supportive, it's hard to know what to say, but I really wish "be positive" wasn't something that was constantly said to cancer patients. I'm a hopeful but also a realistic person. It's difficult enough to pick yourself up when you've been told "We don't know about longivity" (I've had more unsettling things said by my onc but don't want to go off topic).
I've explained to friends and family that cancer is a disease that I don't have control over. I just wanted them to understand that if I got ill again it wasn't my fault, I can have the treatment but I can't control what happens.
Can I send these comments to ROOM 101 please LOL "Be positive","You've got to fight this thing". The one that sets my teeth on edge is "Kick it's butt". AAAAAGGGGGGHHHHHHH
That's right, Nextstep, but it's different from what happened to a friend of mine who died of bc some twenty years ago. More than one person told her that she should not have held back her feelings about her divorce, and that she would not have got cancer if she hadn't. I was shocked that people would actually say this, but some clearly think it. That's not quite the same as telling someone to be positive.
I have problems with people who tell you to be positive too, because I feel they are advising on a situation they know little about. But I think you are right that it is difficult for them.
It is a while since I have been on the forum and I found this thread quite thought provoking and the original article really interesting. I am what you might call a glass half full person, which could be annoying to others! I think it all comes down to the need of the indvidual and the ability to read that need, which can only come from listening and understanding.
Before my diagnosis I felt there was a chance I had breast cancer and although that was a concern it wasn't even on the first page of my worry list. When I went for my mammogram and they went on to do ultrasound and biopsies I thought there was now a strong chance I had breast cancer and it became a worry, but one I didn't know how to evaluate. When I saw the registrar before I left and pressed him to confirm whether "looks abnormal" meant it was probably cancer then I knew I needed to be prepared for the diagnosis.
So I did my research and decided my chances were very good of achieving a more positive prognosis than death (!) and that there was a range of likely outcomes, some a lot better than others. When I received my diagnosis I was therefore able to feel happy/lucky that although I had cancer, treatment was available and I seemed to be at the favourable end of the range. I looked at my options and decided to go for full mastectomy and sentinel node biopsy rather than WLE and have to have rads. I knew that if the biopsy was clear I wouldn't have to have chemo. It was clear and again I told myself how lucky I was.
For me it was the right thing to regard the loss of my breast as a small price to pay to avoid rads/chemo/ongoing worries about the cancer still lurking. For another person that loss would be huge and be an enormous psychological blow.
So for someone talking to me, a blunt conversation along the lines of "it's better than losing something useful like an arm or a leg" would be hugely supportive of my decision. For someone else saying that would be incredibly hurtful and belittling of their loss, which to them is much greater than mine. Someone who has felt that loss would be best placed to advise but does their conversation need to be along the lines of "I can understand how difficult it must be to you, not just to undergo the physical treatment but also that loss of part of your femininity, and to have the worry of it coming back. You need to allow yourself to grieve, we can understand your sadness. If you want to talk about it I am here to listen".
Are we good at communicating our support needs or do we just expect others to know, and if so is that a bit harsh? Would I have known how to support someone in a similar situation - I am not sure I would. I might have been one of those people saying "Try to stay positive" as a way of showing I cared and was being supportive. When people say "Stay positive" I think the majority have read that positivity is a good thing and they are trying to be supportive in an untrained/inexperienced way, and who would think that "I'm worried you are going to die" is a good thing to say, apart from children (who need to express that fear and be reassured).
Maybe we need to feed back to people who say the wrong thing so they will better know how to support us and others in future? Maybe not people who we don't know very well, but those close to us. Perhaps it is for us to provide the training for friends and family.
A friend passed me an article which I have now lost but it went something like this: Imagine the person who's ill in the centre of a series of rings going out from her like the layers of an onion. The outer layers are people she doesn't know very well. The layers next to her are her family and close friends and each layer gets progressively less intimate with her. The point is that the care and listening should be going from the outside towards the person in the middle. The complaining and off loading should be going in the other direction. This is a good model for working out what to say to people who are seriously ill. Unfortunately we "patients" tend to be expected to be cheerful and even sometimes to entertain our visitors! This blocks off effective communication of what we need.
On the other hand, I had to ask myself quite early on with cancer how my illness could be useful to other people, how the experience could improve things. I am still exploring this and am helped by having three daughters who need to have a lot of my experiences shared with them because they may have this diagnosis themselves. Another thing which occurred to me was that I had this sterotype of a "sick person" who doesn't do anything and who is eternally grateful. I have spent most of my life confronting stereotypes, and I have had a brilliant time with this one. This sick person does risky things and makes demands on others. She also tries to give back a lot of what she gets. She shares things which many people consider inappropriate and makes jokes about her condition to the discomfort of her carers(because she can!).
In my case when people tell me how well I look and how positive I sound I think they are expressing surprise that I am animated. In myself I am hoping to turn this animation into joy and peace. And like Jane, I am working on each little thing at a time. For me that is deeply positive. But I am not going to do it to please them in the outside world!
Jane, you are making total sense - I also try to find good things in my day, and my outlook has changed since dx in this respect. But I also agree re the whole Positive thing. It's almost as if people think being positive will help you to be cured, and therefore by implication, if you are negative you are somehow contributing to your eventual downfall. My lovely friend Jenny who died earlier this year was the most cheerful and delightful person I knew. Being positive didn't help her.
For some reason cancer seems to have its own vocabulary. We also 'Battle' cancer - I am not aware that anyone with, say, heart disease, battles that. So for some reason cancer sufferers are expected to fight their illness and be positive, when other life threatening conditions do not have this expectation.
Mel - I realise that today is the anniversary of your daughter's death. My heart goes out to you.
Hi all... going to put my tin hat on....
I agree with you that we have to be allowed to feel how we feel... no-one can tell us how we OUGHT to flippin well feel.... 2 years back at work and every so often something occurs which makes me wobble massively, and I have learnt to allow myself to do so, and to process (by talking) until I can move on again..
But I have to say that while I was going through the mill, I CHOSE to find something to be grateful for every day... even if I felt negative and rubbish... Some days it was easy, cause flowers arrived, or a friend, or... some days it was hard, and went along the lines of "I'm fed up with feeling like poo, I'm fed up with everything tasting horrible, I'm fed up with my mouth being sore, I hate having no hair, BUT I'm not as fed up as I would be if they told me there wasn't any treatment.." And the reason I'm risking saying this on this thread, is that, once I got to the "other end" (do we ever?) I realised that making that choice, finding SOMETHING in each day to be grateful for, made a big difference to the journey, and how I coped with it all. I think that's different from "thinking positive", and I'm certainly not saying there is anything to be grateful for in having cancer (or losing your daughter - can't imagine how awful that might be, my heart goes out to you)... but we can learn to see a gift in each day... sunshine... birds... for me, it was a matter of choice, not feeling. Often the feelings were on a different page, but the choices add up and make a difference. I'm sorry if I'm not making any sense.... Jane
I have also been living with this for years, having just started yet another treatment I went to see my oncologist yesterday not feeling or looking wonderful. When I walked in she said how well I looked, I felt like saying you should have gone to specsavers.
I have decided that people really don't know what to say and if it was the other way round I would probably be the same. Its impossible to be upbeat all the time although like most of us I try to be for others especially family.
Not going to mention that word.
Thanks L for putting into words everything I'd like to say but havnt the energy to those 'friends' who like to tell you positive thinking will conquer all.
What an interesting thread you've started. I had a look at the Susan Sontaq book reviews. I did my nurse training not too long ago, and they still teach about 'the sick role', which may have a lot to answer for in some of the attitudes we encounter......
I've never said this 'out loud' before, but my first thought at diagnosis was 'oh for crying out loud, why did it have to be this girly girly illness?' (as in, why not a 'proper' cancer, like pancreatic?!!!) No, I dont have an identity crisis, (but I may be off my nut) and I hope I'm not hijacking this thread, the point is, I think the real reason was all the f*****ng PINK sh*t.
Can we ban Pink as well as Positive Please?
I so agree with this thread. Ever since I was diagnosed in June 2012 I've had people telling me that I have to be 'positive' - as someone previously said, unless you've been through it yourself, you can have NO idea of what it's like. I sometimes think that my work colleagues especially think I'm just a miserable old cow who always looks at the dark side of things, but I think I'm a realist - I know what the score is and although I hope and pray the cancer never comes back, I also know that there's a possiblility it will. At the end of the day, if 'positive' thinking made such a difference, we'd have found a cure - problem solved! I do however, think that if you can summom up some positive thoughts, it makes the whole thing easier to deal with - easy to say, but not always easy to do as we all have our dark days.
Anyone who tells you to be positive needs a smack in the chops!
Personally I am glad to be alive and glad that so far my cancer spread and that I am nearing the end of treatment. Cancer has to some extent changed my outlook and perspective - I live more in the moment and don't worry as much about the long term future as I don't know how long I might have.
If my cancer spreads, THEN I will get depressed.
But that is just me - I think I've a bit lucky with my treatment so far anyway.
Anyone can respond how they like and no one should tell them how they should feel. "Never criticism until you've walked a mile in someone's moccasins".
So anyone without cancer who tells you to be positive should stick their positive thinking!
Hello everyone ,
Another annoying thing that people say is " You do look well ". Yes, but I may not always feel it ! I just do not think that anyone who has NOT had Cancer can begin to imagine the psychological trauma that a Cancer diagnosis gives us. We try and be normal , we try and be positive during the treatment but afterwards we are left with the stress of it all and the last thing we want is to be told to be Positive. I totally agree with you all. BUT .....I do feel for people who dont really know what to say to us and bereavement is another area when we cannot comprehend what another person is feeling, and I send my love to you Mel at this time of year. I saw a lady in town yesterday, I worked with her hubby who died at 51 and I just could not bring myself to try and speak to her. I know I should have done. I wanted to , but I just did not know what to say to her. He was such a vibrant, energetic, warm loving man that I know she and her children will miss him beyond compare and that their lives will never be the same again. And we feel the same after the Cancer , as we are left with a constant nagging doubt that it may return . SO we act brave and strong , we put a smile on our faces and we try and face the world the best we can .
Sending everyone love and warm wishes. Tracy xxx
Massive hugs to you Mel, going through all this rubbish is bad enough but to loose a daughter aswell must be unbearable, i cannot imagine what you are going through , people are so flippant sometimes with their comments , no one should judge others or tell them how to be untill they have walked in thier shoes, am always here if you want to talk to someone , sending you lots of love and hugs .
Hi. I was constantly told to be "positive" throughout my cancer treatment. I was diagnosed in 2007 and then a year later on the 20th December I lost my 18 year old daughter to Meningitis and lately I have been told again that I should find a "positive" to help me get through this time of year. Well I'm sorry but I can't see any "positive" thing about having cancer and certainly can't find a blooming "positive" about losing my daughter or find one to think about that will help me through this time of year. Sometimes you just have to let it all out and say exactly how you are feeling and it's OK to scream and allow yourself to be down and dare I say it "negative" for a while. No one should tell another person how they should feel and that they must be positive . As Linda said that may be OK in some everyday situations but there are times when it just isn't. If someone wants to be positive about having cancer and it helps them get through all the crap that goes with it then good on them, that's great for them, but no one should be made to feel that they have to adopt a positive attitude to whatever they are going through.
All the best and I wish you a peaceful Xmas and new year x
I can assure you that cancer patients aren't the only ones to keep being told "Be Positive". I have RA, Sjogren's Syndrome, Bronchiectasis with pseudomonas colonies and Osteopenia. I belong to several different forums for these conditions and guess what the biggest complaint it? People telling us to be/keep/stay positive! I think anyone with a long term and lifelong (i.e. incurable) illness has the same problem.
Hi Dawn, Thank you for the hugs , have not been on the forums much lately as have been feeling really low with it all , am just hopeing and praying that the wound finaly heals now, i get the drain out tomorrow then the stiches a week after , i feel like ive been living in a nightmare that i cannot wake up from , still cannot believe everything that has happened , Just hope things turn around now as it has really knocked my confidence and trust in my medical team at the moment.
Hope you are doing ok dawn, huge hugs to you too.
Thanks for sharing the article Cornishgirl. I have printed it out to read right now. Dr Peter Hervey understands and expresses these things so wonderfully well.
Gosh cornishgirl that really was a cry from the heart and so eloquently put. I am sorry I had no idea you had been through such a rough time lately and do hope you are starting to come out the right side of it. Sending massive (((((((((((((((-))))))))))))))) to you.
Thanks Ladies, im glad im not the only person to feel this way , its very easy for others not walking in our shoes to be so flippant sometimes , i really do find the positive word patronising at times, think if one more person says you must be positive to me i may very well smack them!!!
Hope you are both doing ok
I have often wondered why it is that as cancer patients we are continually told (no doubt by well meaning people I know ) that we MUST be Positive , I've thought long and hard about this in my own yrs of cancer treatments and have come to realize that amongst all the illnesses and all the disease in this world, it seems Cancer is the "only" disease that the Positive Thinking mantra exists , I have never heard of people with diabetes being told to be positive, I have never heard of people with MS being told to be positive, in fact I have never heard of people with any other illness being told to be Positive, so why as Cancer patients are we exhorted by others to be Positive?
Being told to constantly be Positive shuts down communication, it closes down conversations at a time when we need to express our inner most worries and fears, more importantly we need others to acknowledge those worries and fears as very real, we need understanding not dismissing of what its really like having to live with cancer and the uncertainties in our futures that it all brings,
Its a very lonely place having cancer at times, if we cannot express our true emotions in our darkest moments because we always feel that we have to put on a brave face and must have that "fighting spirit" to make things easier for others then its makes all this cancer rubbish so much more difficult for any of us to bear , I really hate many of the ill thought out words in cancer world, but I think one of the most unhelpfull and irritating words (to me anyway) is the "you must be positive " mantra ,because really it is just a word used by others to make them feel better , it doesn't make ME feel better , I like many others here have been having a pretty thought time of things of late ,with a recon gone wrong ,a serious life threatening infection which resulted in sepsis and going into toxic shock, a large open wound in my chest , which had to be packed every other day , 3 further breast surgeries added to my previous 2 breast surgeries ,and 4 hospital admissions all in 3 mths ,its truly been horrific ,and the worst part for me has been seeing part of my body just rotting away in front of my eyes, no one should have to see that and it has hit me very hard emotionally, it has finally resulted in me having to have a Mastectomy last Monday , but I was still being told by "some " well meaning people in hospital only this week (not friends and family I might add) that I must be Positive, Well , S*d being Positive, I'm really not right now and to be honest I am ALLOWED to feel the way that I do
Please ladies don't get me wrong, I'm NOT a negative person in any way , I live my life to the full and I just get on with what life has thrown at me, but SOMETIMES we all NEED to cry, SOMETIMES we all NEED to just shout and scream , SOMETIMES we all NEED just to let it all out ,and SOMETIMES we all need to just express our darkest fears and our very deepest emotions, SO PLEASE , to all you people living in non cancerworld ,THINK before you use the Positive mantra to a cancer patient, it isn't helpfull , Yes sometimes it may help us in our day to day lives , but it doesn't make us feel better , and it certainly wont and cannot cure our cancers , all it does is makes this journey much harder for us , Its OK not to feel POSITVE , personally i much prefer the word "Hopefull" or "Constructive Copeing" as expressed by Dr Peter Harvey in this article that i can relate too, and to be honest what is so wrong with NOT always feeling Positive anyway?
Thanks for letting me offload ,we all need to sometimes ,best wishes to all