I’m 24 and have got bone sec. The comments below may sounds a bit childish and mad. Need some of you going through similar situation to confirm my feelings are “normal” and tell me what I should do.
When my friends and family heard about my diag, they were shocked and not accepting it. Fair enough, everyone need to go through those stages. However, some of them were - and still is - suggesting all sorts of treatments other than the one I’ve chosen. Yes, I chose chemo and now it’s finished and I’m on Tamoxifen. But they were and still are suggesting all sorts of other alternative treatments, saying how horrible chemo is, it can kill you, how the treatment they know are so much better. Nearly everytime I speak to them, they say those things to me. I felt like I’m an advertizing target. OK, well intended, you might say, I should try everything out there to get better, I’m too young to give up on life. But there is no need for downgrading chemo so much. I’ve been through it. And I’m certainly not refusing treatment, just not the treatment they wanted for me. I’m sure so much of you ladies have been through chemo, too. It’s not that bad, it didn’t kill any of us.
Sorry for going on… Another problem, just had another shouting match with mum yesterday - the last thing I wanted. From the start, one min she blamed me for not looking after myself properly, next min she blamed herself for not looking after me properly. She says if I obeyed her from the start, I wouldn’t have bc. That sounds like it’s my own fault I’ve got this horrible illness. That’s not fair. I can understand that she’s going through the same things and must be feeling terrible, maybe worse than me. But, it’s not fair to get angry at me and saying I’m not obedient. Am I behaving like a teenageer? Sorry, I’m very upset about this blame game and want to know what to say…
Sorry you are in this position especially so young. Im not in same position so cant offer you any advice on treatment. Im sure people who are mums will say that its really hard to see your child go through this i know my parents have struggled but sounds like you are just both upset and angry. I really hope your treatment works and you get the right advice from the doctors who are the experts. arguments will at least let you get things out in open and let off some steam as it sounds like you are having a lot to deal with not just yourself but from others
Hope some people come along soon and offer support but didnt want to not post.
Hi m1yu, I have got bone secondaries too. I had BC first when I was 39 and ten years later found it was in my bones. I have had bone mets for over ten years now and have recently completed an 8 month course of chemo, Cappacitabine. I am not on Tamoxifen now, but have been on other hormone drugs and have recently started Femara. I am sorry you are having to deal with all this hassle from friends and family. I presume you trust the advice your Consultant have given you about treatments. They are the ones I trust in helping me make decisions about treatments. But I do have two daughters myself, one is 27 and the other is 34. I do not know how I would cope if they got diagnosed with BC but I hope my experience would help them through it, not hinder them. If I can be of any help please just ask. I am on the forum everyday so keep in touch. I am so sorry that you are having to deal with this. Hugs and love coming your way, love Val
It sounds like you’re having a really tough time. May I suggest you give the BCC helpline a call and talk things through with one of our trained members of staff. All the staff on the helpline are either breast care nurses or have experience of breast cancer and will be able to offer you a listening ear as well as support and information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturday 9am to 2pm.
You have so much on your plate and you are so young.Far too young to be dealing with this.
You need to make it clear to your friends that you will be taking the advice of your medical team only.
Your Mum is hurting and angry seeing you go through this,and when we are angry we sometimes lash out at those we love the most.She would love to find some blame for what has happened to you but unfortunately there isn’t one.
Give the helpline a call,maybe suggest your Mum doe the same.
Or is there a Maggies Centre or similar near you where you can chat to someone?
Love n hugs
Dot
xxx
I’ve just read your post and really feel for you. It seems to me that this disease can be so frightening for some people that they respond in all sorts of different ways. For some it’s suggesting different cures or looking where to put the blame or being distant or wanting to actively do something to help etc.
What you could do with is someone in your life who is calm and can take things one step at a time with you. Is there anyone like that you can depend on? If not, I think it will be about educating those around you and telling them what you want.
I know that’s not easy but you sound remarkably clear and level headed in spite of your situation.
Your mum sounds like she needs support too. I’m 45 but I can tell you that my mum was absolutely devastated when I got diagnosed with breast cancer. I don’t know if Macmillan or anywhere offer this (?)but I do know that your mum can ring the BCC helpline if she wants.
Ultimately you need to look after yourself as a priority. If you don’t want those conversations about chemo and alternative therapies with your friends etc then tell them (whilst letting them know how much you appreciate their concern). You have a life that isn’t just all about cancer.
very sorry to hear about your diagnosis and also having to deal with everybody’s reactions - that’s really tough as it’s hard enough having to deal with your own emotions and thoughts let alone other peoples. I think if it were me, I’d say something along the lines of thank you for you advice which I will bear in mind however I prefer not to discuss it right now and I’m happy with the treatment I’m receiving.
In terms of your mum, I remember when my mum found out about me - other members of the family knew first as I knew she would be the hardest to deal with - for quite a while I felt she was angry with me. She buried her head in the sand and continued working and was really caught up with that and stuff going on at work. It came to a head one day where I got really upset and told her that she had to come to a particular important appointment with me and that I needed her and I hadn’t really felt she’d been there for me. She was very upset and annoyed by that and after she left her job, she made it clear that she was around to look after me and get me through treatment. It’s really tough on others around who feel helpless and in my mum’s case seemed angry at what felt like at me but I don’t think this was really the case it was just her way of dealing with it.
Hope some of mine and other people’s comments help and no I don’t think you’re being childish or anything like that, in fact far from it, if you read other posts, you will see that people of all ages have to deal with other people who really are very naive about things.
I wanted to add that the cancer isn’t your fault. They still don’t know the actual cause of breast cancer only things that may put some of us at increased risk. That is your mum lashing out because she’s upset and frightened. Might be worth taking your mum to your next Onc appointment and getting him/her to explain that to her if she continues to say those things. Elinda x
Hi m1yu. It sees to me that you are coping incredibly well with everything that has happened to you for somebody so young. I am struggling and I am 50. I can sort of see your situation with your mum from both sides really. I was 15 when my sister who was 18 died. My mum was absolutely devestated didnt cope at all. afterwards she was protective of me to a ridiculous degree. As a consequence my relationship with my mum was fraught to say the least. With your mum she is having to face up to the prospect of losing you and she is angry. I am a mum now my daughter is 18 and I would do anything to prevent her from suffering. So I now have more understanding of why my mum behaved the way she did. Your mum is probably feeling that she has failed you in some way. mums are supposed to make their children better. Its a really tough one but I can only advise you to keep talking try to tell your mum how she is making you feel. does your mum have someone who is supporting her she will need a sounding board to express her feelings so that she can be more supportive to you. She might even need to see her doctor if she really cant cope You after all are the one who really needs support your mum should be able to find the strength to cope with this for your sake.
I feel for you - and your mum
As for everybody else tell them to take a running jump. you and your treatment team are in charge of your body and what happens to it
hi m1yu,
i’m not in the same position as you and am older at 35 but wanted to respond as your comments really touched me. Since my primary diagnosis my mum has been treating me like her child again sometimes over protective, over bearing and over-nagging. But i know its because she loves me and as the youngest i’m still her little girl.
Its amazing how many people become experts when you mention you have cancer and how many friends of friends who have ‘cured’ it by eating baking soda, meditating and standing on their heads reciting ABBA songs!!! (not really but you know what i mean!). People feel so helpless and in their own way i suppose its them trying to do their bit. I usually nod and agree to do the things they say - have even followed through and tried a couple, cos mostly it can’t hurt. People will have their opinions about chemo and other treatments but ultimately you and your team of specialists know what is best for you, so just stand by your guns…accept their wonder cures graciously and tell them you will discuss it with your oncologist. I’ve been taking some complimentary medicines alongside my chemo to help with the side effects so its not all bad.
Im the only smoker in the family so others have suggested this is why i got it. My mum has fought my corner with the rest of the family telling them what the BCN told us - that i could have lived the life of a nun and still got it, its nothing i did or didnt do and to get it at this age is just one of those things! Then in the next breath she’s telling me off for smoking and saying ‘no wonder u have cancer!’
But thats mums for you, they just want the best and are trying to do their best in their own way. I guess we always take it out on the people closest to us and that is usually our mums and visa-versa. But i’m sure, like mine, yours will always be there for you to mop up the tears, be your emotional punchbag and at times nag and moan at you. And i guess they need us to hold their hands and support them through this as best as we can.
You sound like an amazing strong and mature woman and i wish you all the best with your treatments.
x
I’m so sorry you have found yourself here. From what you say you come across as extrememly mature for someone of 24.
I suspect your friends are finding it difficult to come to terms with your diagnosis and think their suggestions are helpful. Perhaps you could tell them that you’ve listened and thought about what they say but feel comfortable with the treatment your medical team have to offer. Eleven years since my initial diagnosis I still come across people who have wonderful cures and advice for me. I do listen in case they do have some useful information but mainly carry on in my own sweet way.
My own daughter is 24 and I know I would be completely devastated if she was diagnosed with breast cancer (even more than I was with my own diagnosis). Motherhood makes you instinctively protective towards your children, something I’ve found doesn’t diminish as they, and you, grow older. My own mother’s reaction when I was initially diagnosed in 1999 at the age of 43 was to angrily ask “how on earth have you caught that?” She treated me as if I’d been a careless child forgetting to put on my vest in the depth of winter! She was extemely upset and couldn’t talk to me at all. However she had lots of support from her friends and GP and came to terms with my disease. She accepted the news of me being diagnosed with bone mets in 2003 much more easily. I’m not trying to defend your mum but think she’ll have to accept your diagnosis before she can become supportive. Do you have a McMillan nurse? As others have suggested you could ask her, or your breast care nurse, to speak to your mum if you wished. Also she could ring the BCC care line herself.
Hope you are finding the comments here helpful. Take care and be kind to yourself.
Sending you a big hug
Judith
xxx
The others here have all given good advice. We all know how frustrating it is when other people seem to think there’s an easy solution and that this is somehow all our own fault. My mum has cancer too so I haven’t had to deal with that kind of stuff from her but my 3 sisters have all done it to both of us to some extent.
My mum was diagnosed 4 months before me and something I managed to work out from my own reaction to that is that people are often desperate to help but don’t know how. It’s that feeling of helplessness that makes them offer unwanted advice. Do explain to them that you trust your medical team and will only listen to them about your treatment. However, if there is something practical you would like them to do to help, try to divert their intentions to that. I got my sisters to help with my housework on a rota and they look after my dog when I’m not fit.
Your mum will be finding it very hard. Telling my mum about my diagnosis was the hardest thing I’ve ever done. I agree with the others that she might benefit from talking to either BCC or MacMillan helplines.
Best wishes for a good outcome with your treatment. Hopefully with some of the advice from the ladies here you can get the support you need from friends and family in future. Jan xx
Thanks everybody for supporting… Feeling a bit better now.
What doesn’t help is that mum is miles away in another country and I live in England for a few years now. The culture differences in dealing with this kind of illness is another thing to fan the flame… ( Do I sound a bit foreign there:)? And by the way, I’m with BUPA, so not draining the NHS and still paying taxes for the salary I get. ) So, yes, that shouting match was over the phone!
Yes, yes, yes, mum wants to help. She was here with me for a few months to help out and she did lots of pratical things to help me, like cooking, washing up, etc. But now she’s back home, and she can’t do anything materially to help. (or can she?) I need some emotional support from her and at the moment I’m getting none. How could I? I think she’s coping with it worse than me emotionally! And now I think she’s feeling a bit bad about making me upset.
So, I’ve suggested her to join a forum like this for emotional support (over the email, just in case we have another shouting match). If she takes that on broad rather than thinking I’m being silly or I’m joking, hopefully she’ll get some needed support like me.
Will let you know how she takes it. And certainly will phone the helpline when I’m a bit calmer.
Oh, and certainly will take the advice on broad about discussing with my onc about some weird and wonderful miraculous cures they’ve suggested. If it helps, great! If it doesn’t, then at least they can stop acusing me of not trying.
I am so sorry you have had these distressing problems. People want to help but don’t realise how upsetting it is. My friends keep sending me their alternative healers - sometimes I go along with it as it can’t do any harm, but I don’t believe in it and often feel I am tiring myself out just to make my friends feel better, but it is very hard to say no. What I have found easier is to keep my cancer discussions to only a close circle who are on my wavelength, and to everyone else just give minimal information that doesn’t invite further inquiry - I’m getting the knack of this now.
As you mentioned you were on BUPA, I wondered if your onc had mentioned Avastin for the bone met? I know not all insurance companies pay for it - it is new and massively expensive. We pushed our onc to get me on it with PPP/Axa, as she didn’t initially consider it as part of my regime - first they said yes, then no, now it looks like they will pay (I’m going to do it anyway, will pay myself if I have to). This can be taken with Tamoxifen. It can’t do any harm to ask. I hope this doesn’t come across like your friends suggesting alternatives - I was just very surprised this so called “wonder drug” was now available in the UK, and haven’t come across anyone else on these boards that has been offered it.
Do you have anyone that can intervene with your mum - a brother or sister maybe that could let her know how upsetting it for you? I hope you resolve this soon - my very best wishes to you.
To me that explains even more why your mum is behaving as she is - she’s not even in the same country as you so probably feeling completely useless. The fact she is reacting the way she is, even though hard for you, does show she cares.
Sometimes those close to us need to be told what we want from them at times like this. When you feel calmer could you perhaps think about saying something along the lines of ‘it really helps me when you …’ or ‘our telephone conversations and e-mail are so important to me…’. Similarly I would say something like ‘it makes me feel very low and sad when you blame the cancer on me.’
Sorry if the above suggestions aren’t helpful to your situation. The direct approach has worked for me with my family but it’s not for everyone.
Finty: I had Avastin when I was on Chemo, then BUPA refused to pay for it when my chemo stopped, quoting that it’s not proved to be effective on its own… just another stress along the way and to get angry about. I guess I’m a lot luckier than you. You don’t even know what’s going to happen to you. Hope that get sorted soon. I’m also on the bone strengthener Zometa, which my onc gave all the praises for my bones showing signs of healing at the last checkup. Has your onc mentioned that to you?
Just Couldn’t believe I’m having all those problems after chemo has finished. I thought that was the worst bit.
Like you, I only chose to tell friends who are close to me and that’s how I dealt with it at work. But families are different, aren’t they? When they knew it, they ask their friends for help. Hence all those wired and wonderful alternatives. Oh, I’m the only child, no bro + sis, hence I can understand why they are so despite and every bit of new info they get is like a new lifeline. Just don’t know what to do to make them feel better. Anyway, really hope they’ll take my suggestion on broad and go to a forum or some professionals to get some needed support.
Thanks for all your support and letting me to unload those emotions. Not sure mum will be able to take them if they are directed towards her.