SHARE Metastatic Breast Cancer
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Why can’t i talk about this cancer?

I have been following these posts, but this is the first time I’ve posted anything. I was diagnosed in Jan 2017 with MBC. My Mets are to the sternum, spine, pelvis and hip, with two spots on my liver and two on my skull. I’ve had what some consider a miraculous recovery when my pet scan last April showed the main tumors gone. I take femara and Ibrance daily. I’m due for another scan soon.

My issue is that I find I am avoiding people since I cannot talk about my cancer without getting upset and crying. It’s very uncomfortable for me when someone asks how I am doing. I’m constipated, nauseous, bloated and terrified, but I don’t want to talk or even think about it. I definitely don’t want pity. Is anyone else dealing with this?

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Dear Voneil

Better question is, is there anyone who hasn’t gone thru this? My own story. .Diagnosed 2014 with lung Mets. I was stunned. I knew plenty of women, my mother, two aunts and a cousin who had breast cancer and beat it. Not only stunned, but panic and depression — I had suicidal thoughts, wrapped myself up in a blanket and sat on the couch and shook for weeks. I didn’t see my mother or sister for months. I couldn’t face them. I hid from almost everyone except my husband and my beautiful SIL who came over and sat with me for two weeks. I went to therapy, got on antidepressants, took Xanax when I felt myself spinning out of control. After at least 3 months I figured I couldn’t live my life like this and slowly came out of hiding. I took months off from work while undergoing chemo. Symptoms not bad but I couldn’t face people at work. One day I was a healthy middle aged woman with a full life and plans and now I was a Cancer patient and my mortality wasn’t what I planned. I’m back at my job, I’m pretty social and I’ve travelled a lot. Ironically I had been afraid to fly, but now I know for sure somethings going to get me so I might as well live a full life as long as I can. Isn’t that what everyone should do? Cancer has upended all my assumptions. Something that really helped me was talking to a peer “buddy” thru SHARE. They will try to set you up with a person who shares your clinical picture. These women walk the walk. Therapy helps me a lot. Sometimes it’s a battle to stay sane and normal, whatever that is, and not let Cancer define you. This disease is challenging, and even women with over 10 years in have their moments. Please call SHARE. If you can deal with it, find a support group. SHARE has a telephone group chat weekly. There’s also Living Beyond Breast Cancer. As for crying, my dear if you didn’t cry I’d really worry about you. Is there anyone on this board who doesn’t cry over this? I have found comfort in Buddhism, travel, and not taking any good moment for granted. You will find the things that lift you up if you reach out. Be kind to yourself. Have a few responses ready for when people ask how you feel. I usually don’t get into it with casual acquaintances, a polite benign answer and thank them for asking. People mean well. They feel awkward too. Stay connected on this board. You can share as much or as little as you want and you will be supported by your online family. Sorry to go on so long.

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Couldn’t have said it better myself. Thank you.

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Awesome reply!!

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Glad u finally posted your thoughts. It took me a long time before I posted anything also. We r dealing with a scary disease but still have to find meaning and joy from life as long as we can. No one really knows what tomorrow brings, deal with things day by day. Try to find small things that bring a smile to your face and most of all surround yourself with people who love and support you. U r still u despite this diagnosis and u don’t owe any explanations to people about your circumstances unless you think it will help u feel better. Glad u posted.

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I have been dealing with cancer for 20 years, stage 3 and then 4 more recently. This is what I discovered early on. The more I tell people I have cancer, (and even those I don't know! Anyone and everyone!), the less threatening it sounds. After a while you think, "big deal". Sounds crazy but it works. Now with that said, I am Italian and emotional about everything! So, I cry a lot and crying is not always a bad thing. Look online for tapping youtube videos, put your emotion in the title and try tapping for tremendous, immediate relief of that emotion, that works as well. This is a bitch and it is very difficult to stay positive and when someone else tells me just stay positive, I want to slap their face. My other personal favorite line is "live every day to the fullest". Yes, I want to strangle people that say that as well. We all know these things but it is easy to say and not so easy to do every minute of every day when you are faced with the reality we live with. And we already know all of that!! So, first try telling people you don't know and don't care about and don't mind crying--who cares you don't know them anyway! And it will become easier to talk about it. Then incorporate a mantra into you moment to moment living for every time you think of a negative thought--such as dying--replace it immediately with a positive affirmation about yourself. That really helps. Lots of other things but have to go. Good luck, this sucks be we all do what we can.

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People don't Know how to express concern. I am so rude to people, apologises. But they say you look great. Of course I do. My job is to take of this body, sleep eat de-stress. But I am coaching people to say. It's good to see you! That's uplifting.

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Thats the social hard part of this diagnosis. When i was first diagnosed, i cried everytime i dpoke of my "situation." My friends clearly understood why. The "oh no" that you get is people's honest reaction to a situation uncomfortable to them. Consider it good they aren't celebrating😉 it's hard to know how to react to our news. The good news is, as everyone here has written, it gets way easier as time passes. When you cry when you're sad, it gets the emotion out in the appropriate place and others understand, and you heal a little bit more.

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Everyone is different, It’s ok to not want to go into details with everyone, I didn’t, and while people said I needed therapy, needed to “talk it out”, that was not me. I did, and do not, want to hear “it will be ok”, “oh, I’m so sorry”, “really?”....or the dreaded “look” you give someone as they pass on. I have a journal, my emotions go there. Do what feels right for you. There isn’t a manual or rule book to follow, Follow your mind, heart and feelings. I think, as you live longer, (and I am sure you will) with stage IV, you may open up to your friends more, or not. I’ve been stage IV for 10 years. Only three of four people know of my diagnosis. I opened up at work just last year. While it was a bit strange (feeling secretive) I explained to those close why I chose to not make cancer part of my story. I opened up to offer support to someone going through similar. I LIVE for my life, not for my cancer. May God bless you and guide you in this crazy journey. Just remember, while all of our paths are different, our final destination is the same, Live for you. 💜

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Thank you for sharing.reading long term survivors stories gives me lots of hope. Bless you

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I had to tell people at work because I had to retire earlier than planned..I also told my horsey friends because I stopped riding (planning to get back in the saddle soon though!)

However my husband has been telling people of my disease e.g the bloke in the paper shop..a vague acquaintance people in the pub etc.. I was so mad with him has no right to tell people without my permission

Am I being unreasonable?.. I know he cares for me and is upset about my diagnosis

Barb

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Barb, . I would ask, does it really matter if he tells the bike in the store? As survivors, we “own”our disease,, bu do consider his involvement and how it has affected him also, Spouses have a connection to our story, and that connection is what is making him feel it ok to share your (yours and his) story. Also, what I found is spouses are looking for someone to say “oh, that’s so hard on you”, and “oh you have a lot on your plate, how are you doing?” In other words, some sympathy and attention.

Secondly, I would explain how appreciative you are of the support you have been given. I would also explain to him that you don’t want him sharing this with everyone, and you understand he is telling his story too when telling yours, but this story is a bit to,personal to you to have him sharing.,, Best of luck and love.

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Thanks for your reply..good to get someone’s opinion as it’s too close to home to be rational

He’s got the message and I hope he doesn’t repeat this or I will be very cross..I want people to treat me normal!!

Interesting how you mentioned attention seeking..my friend whose a nurse said the same

X

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Have you spoken to him and asked him not to do this? I don’t mean to sound like Dr Phil but sounds like he’s scared and trying to dissipate his own anxiety by unburdening. I did a lot of this in the beginning. Now I regret sharing this most serious and intimate detail of my life with people who may mean well but aren’t close to me.

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I was diagnosed with metastatic BC end of November 20017 and I was exactly like that on the first 2 months. Get over it, think of it as a chronic disease and not as a death sentence. Don't isolate yourself. I had big problems with fatigue but I'm feeling better know I don't know if is because the treatment seems to be working and/or because I'm taking lots of supplements. Remember we will never ever give up! F...you bastard(cancer) we will fight you for ever.We are fighters and survivers, we will never give. God bless you all and good luck. Xx

Ps:reading long term survivors stories helped me to have some hope. Support groups like this one, help a lot as well

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Hello Voneil,

I can really relate to how you are feeling. I have only recently found this site, and before that I did not talk much about what I call "the disease". I almost feel that if I distance myself from it, then it does not define who I am as a person. I was diagnosed on 19th March, but it was another month or so before I had told my dad and friends. I found it hard to deal with the endless questions without crying too, but I know it's because people care.

What I found useful was to tell a few friends that I preferred text messages rather than calling me or asking me in person how I was getting on. Then you can answer when you feel able to in a non-confrontational manner. Or you can just tell friends and family not to bring it up unless you initiate the conversation. I find that I feel better if I am the one to bring up the subject. After all, we have to live with this disease all the time, so an extra reminder from people is not always helpful. It's also nice to be treated "normally" rather than a "cancer patient".

With regard to your symptoms, I would talk to your oncologist or GP about them. You should not have to suffer. Could you add some extra fibre to your diet to help ease the constipation? I often start out the day with porridge, with 2 tablespoons of flaxseeds, 2-3 pieces of chopped up fruit and some dried prunes. I have also recently upped my water intake from 2 litres to 3, sometimes 3.5 litres. I'm always running to the toilet, but it is worth it!

Take care,

Sophie x

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