i was diagnosed september 08 had lumpectomy and lymph nodes removed had taxotere and radium now feel down and scared that the treatment has finished i was told last night that i should forget all about it as though it has never happened how can people think this is possible or i am i being silly
Cornett,
You are not being silly. you are just being realistic. I am currently half way through treatment and at them moment i feel i am in a safety net. When all treatment has finished people have already made comments well thats it your okay, but in my mind thats when the fear of being alone begins and theydon’t understand that. All i can say is maybe time will help and be a healer but i can’t really say much as i’m not as far down as you are in the processes of BC.
Good luck and don’t let people tell you how you should be feeling if they haven’t gone through it. you have to deal with this the best way you can and accept and find a way to move forward.
Hugs
Sukes
Hi there
I hope you don’t mind but I am going to put up a link to a really well written article about what happens emotionally when treatment finishes.
I hope you find it useful, I know I did
All the best
Cathy
x
Hi There
I am midway through chemo having being diagnosed in Jan and already had mast/recon. I thought I’d just share a ‘classic’ with you. I was stressing to another school mum how my kids (age 5,7&9) are really struggling with the whole thing at the moment and scared that mummy is going to die!. I got a really ‘helpful’ “Don’t worry! just think this time next year all this will be behind you and you won’t have to think about it ever again”. - bless her!!!
xx
Hi Cornett
Of course you aren’t being silly - yesterday I had a conversation with my oncologist along the same lines.
I was dx last November - had mastectomy and node clearance, followed by 4 x chemo, 20 rads, 3 x chemo - and am about to embark on a year of herceptin.
The majority of my family and friends are now starting on the ‘oh you’ve finished your chemo,well that’s it then, you can get back to normal now’ - when I explain about the herceptin, for some reason, apart from my immediate family they all assumed it was some tablet I had to take (though I don’t know why I expect them to know otherwise?!?!). Even so, they just seem to see this as some mild inconvenience but that the ‘worst’ is over.
And it’s driving me nuts. I spoke to my onc at some length about how to deal with this - I know other people can’t be expected to understand how you feel,or comprehend what goes through your mind, to them the treatment is finished and you’re cured. If I try and expain that I’m not cured they think I’m some sort of manic depressive pessimist who can’t get on with life - I’m not - I do want to get on with my life - but it’s never going to be the life I had before - not for a long time.
My onc didn’t have any answers unfortunately - but agreed that it is a common ‘public’ misconception that once the treatment is over, that’s it - all better - now get on with it. This is the biggest complaint, if that’s the right word, that she gets from her patients - the complete and utter lack of understanding after treatment finishes.
Unfortunately, I don’t have any answers either - when people suggest that I’m cured, I just reply that it’s too early to make that sort of assumption - and tell them what my onc tells me - until I walk back in her office in 10, 20, 30 years time - we’ll never know !!
Margaret x
Unfortunately my husband now thinks (due in part to wording of it by my surgeon) that now the cancer has been removed I’ve no longer got it! My prognosis for the next 10 years is better than we both expected but now it doesn’t seem to matter that I’ve ‘only’ got rads and tam to get through and he’s telling people who ask that I’m ‘OK’ and that ‘they managed to get all the cancer’ at the op. I think he thinks I’m ‘cured’ and I’ve tried to explain that there’s no ‘cure’ as such. It’s very maddening and hurtful because I feel he thinks I’m making a mountain out of a molehill. Aaaaaghhhh! I do believe he’s doing his best to see the positives in all this but I’m trying to be realistic - I do hope time will take this fear I have away of it returning and, like many, am dreading ending the treatment and flying solo.
I really don’t think that people who haven’t gone through this, or something similar, themselves have any understanding of what it is like for us. I was diagnosed in April last year. Had WLE, chemo, rads, and now on Arimidex and Herceptin. I have just had my first follow up mammogram and got the results yesterday - “satisfactory”, thank goodness. I had an MRI on Monday and am still waiting to get those results. The waiting has been an absolute nightmare, not really helped by everyone saying that they were sure it would all be ok because I look so well. I didn’t look ill before and there was nothing palpable as the cancer was deep and discovered during routine screening. I hope that as time goes on, perhaps the fear will get less, but I don’t expect to have the nonchalent assumption that I will live to old age that I used to have. How anyone can expect us to forget it has happened, I can’t imagine.
All the best everyone
Anne
thanks to everyone for your comments and support it is so good to realise that there are people who do understand these feelings and and i have said it is now a waiting game because i cannot have hormone treatment or herseptin but thanks to this site i know there are plenty of people who know where i am coming from and this makes such a difference because you dont feel you are being silly mo
I finished Herceptin in April and was incredibly positive all the way through my treatment. However, I’ve now had time to think about the fact I was originally misdiagnosed and for 3 weeks thought all was fine until I had a fibroid removed, which was hiding a tumour. I’m now seeing a clinical psychologist for issues relating to not being able to focus and a lack of confidence. My GP wasn’t going to allow me access to counselling and was overruled by my oncologist and a consultant gynaecologist I was sent to for the menopause; in fact, my GP sent the letter he received from the gynaecologist for filing, marked “no action needed”. I saw another GP after this, who just happens to be my usual GP’s wife and she just looked at me and said “we are all rather surprised you are going down this route”. I was really quite shocked given one of the receptionists is being treated for BC.
It made me feel as if even GPs don’t have any concept of what is in the minds of their patients after cancer. The first GP actually told me back in January that I just needed to turn things round again and be positive, then he gave me 2 weeks supply of Tamazepam, despite the fact I was shaking and visibly distressed.
why do GPS think that because you are getting the physical treatment it makes everything ok and is going to make you feel better when a big part of it is support and understanding the fear and the unknown. That I feel is the worst part and I am now realising I need that support from people who know what is going on.I hope you get the support you deserve and have right to.
Thank you to cathy 59 for the council link i found it good and from someone who understands thanks again mo
Hi there
I think people say things about being cured etc because thinking about and voicing the alternative is just too painful. They want us to be well, they care about us and just can’t contemplate that we have to live with this disease. We have all faced our own mortality and they can’t hope to understand what that means. Telling someone to ‘be positive’ is all very well but when we have bad days, as we all do, you feel worse because you feel like a failure because you can’t be positive. What they don’t realise is that we won’t always feel down and scared we just need them to be understanding when we are. Some of my more sensitive friends know that my husband and I will always have the shadow of BC in our lives. Most of the time I ‘face the sun’ so the shadows are behind me, but even after 3 years there are still times when I’m ‘in the dark’. They do get less and less you’ll be pleased to know.
The article Cathy has posted a link to is really good. It helped me enormously and I gave it to my family to read.
You are not being silly. If you’re brave enough try telling them that those sort of comments aren’t helpful and tell them what is helpful for you.
take care
fantan
Yes Cathy thank you for this link. So helpful even though I am in the middle of treatment.
I have had mastectomy but didn’t need chemo or radiotherapy, the link to the article from Cathy was great, I haven’t finished treatment, have an expander in and will need more surgery, but have been given the ‘all clear’ and everyone thinks I 'm well again,so some of the support is backing off at a time I really need it. I’ll show it to the family, they don’t realise you still have worries.
Thanks for this thread. I have been shocked by n nurse friends who have asked is the treatment working and trying to explain to them the uncertainty. I think the reply I’ll tell you in ten years when the oncologist discharges me is a good one.
Crispy
Yes Cathy, thanks so much for putting the link up. I keep printing it out, and then giving it away as it is so good, have printed some more copies now. How I echo everything that has been said here. Even yesterday I was talking to someone who is a “high up” in a cancer charity and he was saying how wonderful the treatment is for breast cancer now, and how people are cured etc etc. I replied by quoting the statistics for those who do die every year from breast cancer, and all the wonderful ladies I talk to here who are facing a very uncertain future, or living with secondaries, and all the friends I have lost to breast cancer. Yes, the outlook is better than ever before, yes thankfully very many (most) of us will never have to revisit treatment for breast cancer. But the dreadful thing is the uncertainty, that none of us know for sure which path we will be taking, only that we have no control over it. I think it is so important that people (medical and otherwise) really take on board the reality of the shadow that this uncertainty casts over us all. So many people have been saying to me recently (I am midway through rads) “then it will all be behind you”. Well no, actually. They want to think that, but it’s just not the situation, and I tend to have been telling them that! How maddening the lack of understanding from GPs - I posted on another thread about their reluctance to refer to counsellors/psychologists - it is almost as though they “expect” you to go through a dark time, so you just have to get through it. How unhelpful, and ignorant is that. I actually do feel very hopeful about the future, but I find I’m getting frustrated about other people’s assumption that all will be well. All we can do is keep speaking out! Good luck everyone. Sarah
Hi
I just thought I would add my feelings to all the others. I had WLE and nodes removed, tumour was hormone+ and with possible lympho-vascular invasion I finished chemo and rads at the end of 2007, and yes people have been telling me to get back to normal. to move on and leave it all behind me. The problem is every time I have a bath I see the scars and I am reminded, every time I have a hot flush, which is about 10 times a day and caused by the hormone treatment, I am reminded, every time I try and do simple tasks, like weeding the garden or mowing the lawn, my joints feel like I have aged 30 years overnight and I am reminded. every time I look at my left arm,where there is still a large bingo wing from the removal of my lymph nodes, I am reminded, every time i look at my right arm which has ridges in where my veins have collapsed from the chemo, I am reminded and if I touch my left breast, which feels rock hard from the rads and totally alien to my body, I am reminded. I could go on. It is that simple, you cannot get away from your own body, you cannot put your body behind you and your body has changed, you no longer feel safe in it. So to get back to ‘normal’ is impossible. you have to find a new normal and you have to accept that you will never be the same again, and this takes some doing. The article mentioned in the link i have found really helpful, it is the people who expect you to be the same who are unrealistic because they do not understand what you have been through and the fear of recurrence is very real and constantly at the back of your mind and however much people would like to say we are cured, no doctor will ever tell you that only that at the time they examine you or run tests on you there is no evidence of disease. I know these are early days for me and I hope I will become less fearful as time passes but for now I accept that however I feel about what has happened is real to me and I have a right to feel any way I like regardless of other peoples opinions.
Best wishes
Dawne
Hi Dawne - You are so right in all you say. I agree so much with all your sentiments (as you will have seen from my posting above). In time, I am sure we will come to feel more safe, more comfortable and more confident in our changed bodies - but we have to be able to grieve for what has gone before we can fully accept, even come to love, what we have now. Hope you can get some sleep soon - Sarah x
Yes Dawne u r so right in all u say sums it up very well it annoys me too when people think because u u have surgery treatment etc u r cured nonsence no such a word where cancer is involved, but it is hard for people to know the right things to say to u. It depends on my mood how i handle it, one of the things that annoy me the most is when people say just think positive and u will b alright it actually makes me laugh sarcastically of course, sometimes i say no need for treatment then as all i need is positive thinking. Regarding how long it takes to try and put it behind you all i can say is how long is a piece of string takes a long time i know because i had it 16yrs ago then it came back last year but it was always on my mind albeit as the time goes on u get a bit more confidant and feel a lot better about it, but the feeling never leave you. That,s what i feel anyway.
Take care everyone and this is a good thread because we all feel the same one way or another.
Reneexx.
All your comments have made me feel i am not being soft and i can let the mask drop because when you are with family and freinds i have this mask which makes them think i am coping so well when really all i want to do is scream. and somtimes i feel i am protecting them rather than thinking of me. thank you all again hugs from mo