Really not having a good day (or should that be days !!!). I can deal with all the treatment they throw at me, chemo AC x4/Taxotere x4, then surgery, rads. I can also deal with the loss of hair, menopause etc, but what I can’t deal with is the fact that having BC puts a huge question mark over my future. Why do the medical profression talk in multiples of 5 when it comes to survival rates. Will I still be here in 5 or 10 years? My Onc (this man who was a complete stranger 3 months ago and who has now currently become one of the most important people in my life, Someone who will help me to beat this awful disease, so that my three year old daughter doesn’t grow up without a mother. I sit opposite him and try to read between the lines of what he is saying (or not saying), trying to read his face and crying out for some good news. Should I ask him a 1000 questions about my (Triple Negative, Grade 3) BC, will this make a difference to the outcome, is being armed with every piece of information likely to change the path that this cancer will take. Should I just concentrate on how my treatment is going. Being positive, what does that mean exactly. Will being positive tell my cancer cells to drop growing? IEvery says “I know you are going to make it”. How do they know, when I nor my Onc knows the answer to this question. =it seems no-one really wants to talk about the fact that I might not make it. Is death something that can only be spoken about once the consultant says “that’s it, we can’t do any more for you”. Sorry for sounding so down - I do try to be as positive as I can be, but it doesn’t always work !!!
first of all well done on getting through all the treatment.
You are only writing what most of us feel and thats how hard we find the unpredictable nature of this disease.
I know exactely what you mean by our lives being controlled by an oncologist or any of the medical people it is just so alien to me as the last thing i want is to hand over my life to someone to control and appear needy but thats what we are when we have this.
One thing i have found helps me is to find out as much as i can about available treatments and statistics etc. I actually feel my onc listens to me more and spends more time with me and i somehow feel a little more in control…
Don’t start me on the being positive comments. I have had freinds who were the most positive people i have ever known and unfortunately their cancer cells didnt realise it. Its a load of rubbish this being positive will help control the cancer. However I do think it helps us to cope and enjoy the life we have.
Someone said to me last week ‘oh you have a positive attitude that will stop the cancer coming back’ I said ‘well actually I dont have a positive attitude, I am one of the most negative people ever’ but i hope this doesnt mean i am going to get a re-occurrence.
I cannot say i know what its like to have this disease when your child is so young. Mine are older thankfully.
However i do get all edgy when they talk of weddings in years time and grandchildren, first thought is will i be here.
I have sat with friends who usually are older than me and just felt this great jealousy that their lives are so ‘normal’ and i have this cloud over me.
The 5 years 10 years is annoying, but they must have some trials that they have done which prove what they say to us.
I imagine as time goes on and we hopefully remain well we will be less concerned but others may say more on that.
This site is an amazing help to so many and i am sure people wil reply to your posting.
Glad your having a good day Jane and hope the train journey was to something enjoyable. We need to do enjoyable things.
Actually i am concentrating on being selfish (nicely). I definately think BC changes us.
These are all questions I constantly fight with. Everyone says I am a positive person and this positivity will help me…I feel very negative alot of the time, I just don’t voice that negativity. I think we all want someone to say ‘Hallelujah you ae cured’ but that statement never comes - I also have tried to ‘read’ what my Consultants are telling me - even when I ask outright they cannot answer me - and so I agree that for other people to ‘just know’ you are going to be OK is complete cr*p.
I guess the main thing is we have to change, to grow, to adapt to a life with cancer. To live with that uncertainty is a huge ask - and I don’t have any big advice about how to do that as I am struggling myself. I am just finishing my treatment (last Rads today) and feel a bit exposed and rather let down that there is nothing else they will give me (not saying I want to be HER++ either though!!).
I have only just started to voice my fears that this is going to get me in the end. I didn’t have a great prognosis and I just can’t help thinking that I am not going to do and see all the things I wanted to. Most people think ‘Oh she is OK now - done her treatment’ but to be honest I feel like it is only now I am thinking about things more and contemplating life and death.
My personal way forward is counselling (session #2 next week), holidays (as long as they are not planned too far ahead - as I cannot cope with planning more than a few months), not wasting time on cleaning (got someone else to do that!) and spend more time with my two small children.
I hope you have a few more better days as the weeks go by. Wishing you all the best.
Ali
xx
I was first diagnosed in 1995 and met a lady (in her 60’s at the time) who was selling the pink ribbons in The Body Shop just after I’d finished my treatment. She’d had b.c. and I asked her how she dealt with going forward and she said none of us know what’s going to happen to us and why waste all those years worrying about something that hopefully will never happen again and although it was hard at times she was right.
I had 10 good quality years of remission before my cancer came back (3 years ago) but I still enjoy my life because I’m still here. That’s not to say that I don’t have my down days and ‘worry’ days but it’s about the quality of our lives.
Dr Peter Harvey has done an article ‘after treatment has finished - what next?’ and you can find that on previous threads on here or google it.
We all have our off days - so do people who don’t have a life threatening disease. I get fed up with people saying how ‘positive’ I am - how do they know? I think it can heap real pressure on you sometimes especially if you’re not feeling that upbeat. To me, it’s about having certain goals or aims and they can be as little or as big as you want.
One of the first ones after my latest diagnosis was to get into boots with a higher heel - which I managed about a year afterwards! But the feeling was great because I’d achieved it plus it made me realise how far I’d gone since those very dark days in 2004.
I agree with Ali - why waste time with things that aren’t important - it’s a great leveller and makes you realise what is and isn’t important to us.
Jane - really glad to hear you’re having a good day and hope you’ve enjoyed it. You didn’t miss much at the Macmillan event on Friday!
Hi Doyle,
I was so moved by your post that this is my third attempt to reply Others keep disappearing into I don’t know where. The reason I’m replying is not because I have any answers but simply because the same questions you ask whirl around my head too. What exactly does ‘being positive’ mean? Why do do many people who don’t have BC say those words? where did the the notion that being positive/negative could influence Bc come from?
When I ask friends and family why they keep bombarding me with the message stay positive they reply that they are ‘wanting to help me’ I reply that if you truly mean that then just be there for me and just listen to my fears and concerns about the unpredictability of this dreadful disease.I think that is hard for them. So many people simply feel the need to go into ‘doing something’ to help, that many people fail to recognize that ‘just being there’ to listen is equally important
Tomorrow I will meet my onc for the first time and I know that this person. who at the momemt is a stranger ,will play an enormous part in the descision making of my life from hence forth, simply because he /she will have more expert knowledge that I do at the moment. Its quite frightening for a control freak like me to put my life in someone else’s hands.
I also think(and this is simply a personal opinion)that we live in a society where death and the process of dying are hidden behind euphemisms and closed doors
I’m sorry you are having a difficult time at the moment, there are a couple of Breast Cancer Care’s support services that might be of interest to you. The first is Breast Cancer Care’s telephone support group. It’s a chance to get together once a week to talk with people who’ve been there. Linked together by phone in comfortable surroundings, you can express your feelings and discuss the practical and emotional impact of living with breast cancer. The groups will be particularly useful for you if you feel isolated. The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
There is also Breast Cancer Care’s peer support service. The telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding. For more information about both these and our other support services available to you please telephone our helpline on 0808 800 6000 or email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>. You are welcome to call the helpline for further information and support regarding the specific concerns that you have at the moment.
sorry another slip of the finger. I’m not having a good day ICT wise,
I lived and worked in Africa for a number of years and death and the process of dying was seen as a necessary part of living. The visibilty and openess made it all less scary.
I’ve only been on this site for a few weeks and I know there are some who don’t like to be involved in these sort of discussions and some who do.I notice that Jane has responded to your post and I personally have always found her replies to be honest, measured and direct. When I feel down and out I look to her replies as they usually lift me,inspire me to go forward, and give me ‘food for thought’ I hope they do likewise for you.
I consider myself ‘lucky’ in that my children are grown up so my heart as a mum goes out to all you ladies with young children
I thought your post was a breath of fresh air, so honest and true
my very best wishes to you
Trish.
I think others have said much of what I wanted to say when I first read your message yesterday. Like Trish I too think your post is a breath of fresh air in its honesty. 4 plus years on and I still get more depressed by reading all those ‘positive’ stories than I do by reading how people actually really feel. (whether on a good or a bad day)
No your cancer cells won’t listen to you ‘thinking postively’ though as Ruth says on days when you feel good it can be easier to live with the uncertainty which this disaese has brought to ur lives. I don’t call this ‘having a positive attitude’. I call it living with hope, and it is the concept of hope which sustains me rather than the superficial mantra of ‘think positive’. I think hope enables us to hope for small things and set attainable goals and I do believe we can still keep hoping through worsening news(if it happens). But inevitably there are times of despair…but the human spirit is so strong that even then we can find seeds of hope.
I also think Trish is right in what she says about the invisibility of death in this soicety. (Do you know I even feel wary mentioning the word…am I letting the bright optimistic pink world of the happy cancer survivor down!). For me the diagnosis of breast cancer in 2003 focused an interest I already had in mortality issues, in death and its meanings in western society. I even started an OU course last year called Death and Dying which is just brilliant (I stopped it when I got rediagnosed, not because of the subject matter but because I didn’t have the energy to write the essays!) I know what you mean about no one wanting to talk about death and I find this silence a burden…which is not to say that I want to talk about death all the time, or that I am negative or miserable…actually I live well with breast cancer I reckon mainly because of the dark humour I have about it.
But a dark humour may be easier for me…nearly 59 no chilldren. Breast cancer is awful at any age- recently there seem to have been a spate of newpsaper articles about how life for women in their 50s and 60s is so wonderfully different than it was a generation ago…women like me who have/had careers, have comfortable incomes etc…and I feel like a ratty old bag that I don’t have that other essential component for the good life…health. But for younger women like you with young children my heart burns with anger at the changed lives you must face, and the worry and despair that you may not see your chilldren grow up. Too easy to say ‘don’t worry’ because most of us do worry.
I think while you are having treatment the wrorries are that more intense because you simply have no idea what the future may bring. In my experience once tretament was over I still worried…with intensity each time a 3 month check up came…but it got eaiser. I was 3 and a half years after diagnosis when my recurrence happened and by then yes I was hoping I was on the good side of my rotten stats (I remember on these forums someone quoted me as an example of a triple negative survivor with a poor prognosis on the day I found the lump in my shoulder). Now my hopes are different and yes the dark days are back, but I claw what joy I can from the every day. I too have found counselling/therapy helps…I was getting on a train yesterday to see a great therpaist I have seen regularly since my first diagnossi (the ex career woman can afford it…not everyone woth cancer has my financial security). And then I lunched and went to the Russian exhibition at the Royal Academy…a must for anyone into art. Small pleasures remind me I am alive though cancer is always on my mind.
Trish you ask why the ‘you must be positive’ stuff is so popular. I could write a book on why…on the cultural pressures and the history of cancer which has led to this point, on the publication of Bernie Seigal’s book Love, Medicine, and Miracles in 1986…which I think has had an incredibly pernicious impact on the promotion of a trite self help industry…but this post is probably not for that.
Doylej…go gently with yourself…life is complicated, having cancer is complicated and none of us can ‘be positive’ all the time. Not being positive doesn’t mean you are ‘being negative’ or ‘giving up’. I hope today you are having a better day.
I am sorry to hear you are having such a bad day, I haven’t much more to add to the already good advice on this thread other than a few weeks ago I could have been the writer of your post (Except for the 3 year old daughter) . Today is a good day for me and I’ll wait to see what tomorrow brings.
Take care,and I hope you are feeling better that when you first posted.
Your post was heartbreaking to read but very honest and you have shouted out loud what a lot of us feel or have felt. It is two days away to the anniversary of my daughter’s death from cancer, she was just 4 years of age. I was diagnosed 3 months after her death, whilst 30 weeks pregnant, and do you know people still told me to be positive and still do!!! Cancer is the only illness I know where people seem to have thrust upon them the ‘be positive’ message. It may help some people get by but I think the majority of us would like to see this phrase banned from the cancer vocabulary but how do we go about doing this? There are other cliches I cringe at:-
Battling/beating cancer - how exactly do you battle this disease? If you can tell me how to beat it then I will be first in the queue to do this.
You’ll be fine my friends say, oh yeah just like you say, how do they know, they turn into would be oncologists overnight, have they found a cure that my oncologist doesn’t yet know about?
It’ll grow back - as if my hair is going to grow back overnight, well it doesn’t, it takes several months and there is at least one lady who posts on this site whose hair has not come back.
I may not be a fully paid up member of the be positive brigade but just like janeRA states above, it doesn’t mean I am negative nor do I sit at home being a misery moo. Although this is not the forum to discuss my daughter, she inspires me with her ‘just get on with it’ attitude. A childrens oncology ward is a very humbling place to be and although my daughter is no longer with us, I learn from her and I seize the day. I have my husband and two children aged 1 and 3 to care for and although you will never be as happy as you were before diagnosis, you will find a different level of happiness, but this will take time. Your diagnosis is still raw. When my daughter was diagnosed a phrase that I remember helped me to cope was ‘Don’t let the worries of tomorrow spoil the happiness of today’. In time, I hope you can take some strength from that phrase. As for mortality, well we all know we are going to die at some point but we don’t camp outside that cemetery trying to get in - hope you can seize the day at some point in the future. Lots of Love xxx
Thank you for sharing your experience, that is real food for thought for us all. Although I stand by wanting to use the ‘positive’ remark I do empathise with other phrases you point out. I personally hate ‘victim of cancer’ I prefer living with cancer. And thank you for passing on the phrase ‘Don’t let the worries of tomorrow spoil the happiness of today’ it sums up my thoughts.
Doylej I hope you too have found Swismiss and others advice inspiring.