I need some advise on how to handle people in my life . So many friends and family i have act like nothing ever happened .Because i haven't changed physically and really try not to talk about it most of the time most people really act like things are back to normal . I understand that people think they are helping me by treating me like they did before which most of the time is ok but sometimes i need to be taken care of . I'm always staying strong for everybody else
My husband never wants to talk about it sits and listens to me talk but i can tell he is not on the same page . He will do anything for me takes me for testing whenever he can but really is trying to ovoid it most of the time .
My life is back to normal most of the time and I'm happy about that but sometimes I'm screaming on the inside and nobody hears me !!
How do you guys deal with your emotions ?
I have wonderful kids and a great husband but they dont understand me
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Anitafazz
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Hi Anita,
I understand what you are saying, because this is how I sometimes feel too. I think friends and family feel more able to care and nurture us when we are undergoing chemotherapy or radiotherapy, as the side effects can be seen and they want to help. But when you are carrying on as normal, still working, have a full head of hair (at least I do! I always wanted fine hair!) and are able to function without a lot of physical support I think some people get the wrong idea and think we do not need as much help. But we do.
If you need support, I would suggest you ask for it specifically. Do you want more support with the cooking, cleaning, paying the bills, or someone to actually sit down and chat with you about how you are feeling having to live with this disease? I would let them know just how you feel and if there is any way in which they can help support you. You mentioned that you have children. Would it help if your husband took on more responsibility on the days you are not feeling up to it? I know that if there is a family crisis and I just don't feel like I can face it I ask my husband to step in. It takes the weight off my shoulders and then I don't become stressed and overwhelmed. We are at a point in our lives where we need to take time out for ourselves and find ways to cope more effectively with stress.
For me, it's the emotional side of things that gets to me. I don't want to be superwoman and carry the whole world on my shoulders. I still want to be a wife, daughter and sister, but I also need time to rest, sleep, relax and have some quiet time to myself where I am not needed by someone else. It sounds like you could also benefit from this.
It's good that your husband will listen to what you have to say, but it sounds like he is not really engaging in the conversation. How about asking about his thoughts? After expressing yourself, why not ask his point of view or if he agrees with what you have just said? That's what I do with my husband. It helps draw him out. He may also be in denial or trying to shield you from his own pain. My husband has let it slip that he would be distraught if he lost me, so I know it's a very painful subject to bring up. Your husband probably feels the same way.
You can also talk to any of us on here, and we can provide you with support whenever you need to talk.
My husband will do whatever i ask of him . He cooks cleans etc. and is always there for me with everything but cancer . I think in his mind he forces himself to think that i will be fine and things will go back to the way it was before .
I have 2 kids that are 31 and 29 and will do anything for me but are a little to positive because that makes them feel better and i don't blame them . I don't know why i feel this way today but just able to type on here is getting it off my chest .
I am not a needy person at all but i guess sometimes you need someone to tell you that it will be ok . Hormones are not my friend either and get the best of me sometimes lol
You're welcome. You sound like you have a very loving husband and children who all care about you very much.
We all need to get things off our chests, so I wouldn't feel guilty. I would just let those closest to you know how they can better help you. I'm sure they would only be too happy to help make your life easier and more manageable.
I think your advice is really helpful to all of us who feel alone at times. Hugs Marlene
Mine are the same although my husband really does listen.
They ask how my treatment went, what my results were by text then I don’t hear from them again until the next month when I get the text again. Pisses me off big time.
I throw myself into growing plants and going to our allotment, made a promise that I have” me time “ and have a little jig about of a day to soul music to clear my head of nasty thoughts. I also make good old vintage Fairie dolls and sell them on eBay.
I’ve decided life is to short and we have to do what we want to do. Sounds like your family are in denial and need someone to talk to them. A professional outside of the family so it can be explained exactly what is going on in your life.
When I was first diagnosed I had all the crocodile tears from family and the sob stories but after a few months they soon forgot and I haven’t heard from 90% of them in well over a year. I’ve been living with MBC for 17 months.
It’s so hard for you emotionally and you need to be asked every day with no fuss if you are ok.
I really hope you can turn this around and I send you virtual hugs. Something we all need.
Oh Cheryl, that's really sad. You must have some good friends out there. I feel very blessed with the friends I have and the people who often tell me they are praying for me.
It used to make me sad Beryl71 but I’m used to it now. I have a son I don’t see and he has 3 daughters. ( long story).
My other son who I adore lives in Australia with his wife and daughter. I speak to them. I also have a 35 year old Stepdaughter who hasn’t got a clue. We see her when she wants something.
Life’s a bitch at times but I have a wonderful husband and a dear Mum who is 93. We speak every day.
Yes, life does seem like a bitch at times... And yes there are so many people who don't actually care about others but it is wonderful to have a few people around who do care and that makes the struggle easier. It made me smile knowing you have a lovely mom who is alive at 93. That is a really big blessing.
I just connected with an old friend who I didn't really think really cared to keep in touch. We did keep in touch by sharing a newsy Christmas card but that just became an annual obligation. So we let our friendship sort of dry up. Since we have many shared experiences raising children alone in a small community I have never forgotten her. So the memories of our times together drew me back to her. I went to visit her yesterday and could see that she is having some struggles too. The result was a very wonderful reunion. Just a warm and happy reconnect and trip down memory lane.
My friend is a hermit - sort of - living off the grid on a gulf island and is getting frail and doesn't always get the help she needs. She has a loving daughter who is ill too and grand children who live in far away places, like Australia. So she struggles on alone a lot of the time. But, my visit with her and her daughter was really joyful and I realized that they cared for me. It was just such a warm and positive day for all of us. I had my own daughter's cousin with me and she also enjoyed her visit with us all. Going deep into the West Coast wilderness with all its wild forests and ocean is in itself a healing experience. So my reaching out to my friend them made me feel wonderful and now I realize that sometimes I can forget about my own struggle and be a source of comfort to someone else. That is going to help me feel less despair about my own health. Seeing her again has raised my awareness as to how I can be apart of some one else's healing. Many people have very serious struggles in their lives and I actually think that I wouldn't trade with them even though mbc is a real bitch to have to deal with. I have advised my friends daughter to let me know if her mom needs me. That makes me feel good. And I now can let my own daughter know that her long ago pal is also suffering. We all need each other. And just like this group we can give each other comfort. It is easy to forget others as we struggle to stay well. I am now going to make the effort to get back often to see my friend. Even though all this mbc stuff drains me I have promised myself to stay happy and positive. Hugs to you and your lovely 93 year old mom. Marlene.
That’s such good news Marlene. You know when you have good friends by not speaking for a while, picking up the phone and talking as though you had spoken just yesterday.
It’s great that you can now find comfort in each other and enjoy each other’s company. Sounds as though she lives in a wonderful place that’s good to visit.
MBC is draining both emotionally and physically. All we can do is push ourselves to the best of our ability. I walk to the hospital with my husband. It’s a four mile round trip and up hill going. I tell myself I’m not sure I can do it the day before my apppointment but, I always manage it with ease. Just fear of the unknown. Sometimes my breathing lets me down and that’s why I’m sure.
Yes it’s great having Mum still here with us. She is healthier than me thank God. We lost Dad 18 months ago. He was 93. He survived Cancer, a massive Stroke at 65 and still kept smiling. He just gave up in the end. His organs failed.
One thing will always stay with me, cheeky fella started to hide his meds down the side of his recliner chair and Mum didn’t know. She only found them when he passed away bless him. He really had enough of living the way he was although he was compos mentis when he died. An intelligent man.
Thank you for responding to my long winded stories.
Yes, my dear friend lives in a very serene west coast environment on a little gulf island. Few people in the world today can live in such picturesque isolation. But she is getting older and I wonder if she can stay there forever. She might need more help. I have promised myself to keep closer tabs on her. We have a cottage on our property that stays empty during the late fall and winter months so I will offer it to her if we get really snowy weather. I learned from her daughter that she was trapped in her place one year during a long snowy winter. That is not good. I know she is proud but I will keep and eye out now that I can see her getting a bit more frail. But, yes, it was a real joy to spend time with her. Friends are just so precious. They are a real healing balm.
Yes, you are lucky to still have your mom. My mom and I didn't always see eye to eye but I do miss her. She lived until she was 94 but was plagued with a broken spine and that ended her life. I think of her as one of the original hippies. She was very conscious of her impact on the earth and in my younger years I didn't appreciate that but of course now I think she was ahead of her time.
Even though you lost your dad it must be a very big comfort to know he lived a long life. And it is wonderful that he was still able to use his mind to live life to the fullest. Yes, that was cheeky - hiding his medications.
I was in a coffee shop one day - some years ago with a very old lady - probably my age now - but at the time that seemed to me to be very old. We started to talk and she told me about her mom who lived to a ripe old age. She said that her mom was diagnosed with a serious illness and for many years received prescriptions for the medicine which was supposed to treat her condition. One day her daughter told me that she was helping her mom clean out her cabinets and found many un-opened bottles of medicine. When she approached her mom about this horde of drugs her mom told her that she didn't think she needed all the medicines but she filled the prescriptions anyway so her doctor wouldn't feel bad. Heh...heh.....I think I laughed out loud. I love that story because it makes me feel that women are strong in so many ways and they make their own decisions. It takes a certain strength to say no to drug treatments. I also love that story because it makes me aware that we have choices. Apparently, her mom lived a very long life and I guess she must have known that the medicine was not really going to help her.
I sometimes wish I had that courage to say "no". But right now I do believe my meds and my doctors are helping me to live a reasonably happy life. I do get tired of taking drugs and I get all tense when I have to talk to the doctor and take my tests and scans but I do believe in my medicine and as long as I do think it is helping I will take it. I try to eat a healthy diet and I like to tell myself that I am healing.
I believe that there is genuine care going into the treatments we now get for mbc. Now, many women live a really long time with this illness. So, while I do think we have to be careful about what we are taking we also have to respect the research that we are now blessed with that is helping us to live a long time.
I think we would not be here if we were diagnosed about 25 years ago. I am pleased that we live in a very research oriented scientific world where there is such a strong drive to help people with serious illnesses. Even though we have disagreements I think our societies are much more caring over all about finding cures for the serious illnesses that plague us today.
I certainly share your stress level when you have to visit your doctor or go for tests. I will be having more scans next week and I am already beginning to feel my stress level climb. When they are all completed I am like someone who has completed a marathon - I am happy again - and ready to face the future with quite a bit of optimism. We must never despair - no matter our diagnosis - because if we want to live a long life I believe we have a good chance.
I enjoy talking to you and hope you can stay happy and healthy for a long time. Take care and focus on healing. I refuse to believe that mbc is incurable. I believe it is curable. Hugs Marlene
I understand but not sure I can give any advice. With my husband I find it too painful to talk about the future I have lost and that I probably won’t get to spend retirement with him. I want to tell him not to grieve for to long once I’m gone and to try to find happiness somehow but it is just too painful. We are not the kind of couple that would be comfortable with talking to a therapist (or similar) so I don’t see how we will ever get to the point of having an open discussion. Perhaps it doesn’t have to be said...
My kids (23, 21 & 18) don’t really get it. They have their lives to live and don’t believe I won’t be “one of the lucky ones”. My back pain has improved on treatment and being diagnosed de novo they haven’t seen that “cancer patient” person either. I don’t want to frighten them but I want them to be realistic. Perhaps with time they will come to accept the situation.
I guess the answer to your question is that I don’t deal with it well. It breaks my heart, I internalise things and occasionally have tearful days. MBC really does suck! But it does give us the gift of enjoying every moment we can.
Having this board and knowing others here “get it” is also a coping mechanisms.
Let's hope you are one of the lucky ones. Believing is important! I'm not sure what is best, talking about a future that is suddenly cut short or not being able to plan. My husband died very quickly from prostate cancer a year after diagnosis. He died the year I retired. Life is full of surprises many not so good. There are no certainties. At least we have a warning that allows us to make the best of what we have. xx
Carolyn, thank you. It is important to have hope. I am so sorry to learn your husband passed away. I want to say the untimely passing, but of course there is no period of time which makes it okay. I can’t imagine how you coped with his loss. You are so right though, life has no certainty or guarantees so we learn to make the most of it while we can. xx
I can tell by your name that you are a very magical woman. Of course you are going to get well. You can do it. But first you have to reconnect to your own magic.
Every morning when you wake up tell yourself that you are healing. Repeat it over and over again. Let the words seep into your being. You believe in magic because your name is Stardust. There is magic in star dust. Fairies sprinkle star dust on people when they want good things to happen. Even if you feel like hell in the morning and even if your tests say scary things - just keep saying "I am healing". Another good technique is to look into the mirror and smile and look into your own eyes and make sure they are smiling. Your body is going to get a bit confused but then it will begin moving you into a healing direction.
Then add hopeful pictures into your life. Keep picturing all the wonderful things you are going to be doing with your husband during retirement. Even make plans and if at all possible and talk about the things you would love to do with your husband. Make him think that you will be with him for a long time. There should no death for us until we are gone.
So why spend time being sad - it isn't helpful. Sadness is okay for a wee bit of time because we need to mourn but then we need the healing to begin. You then need to tell yourself that you are going to be happy. That will help you to keep going.
There is so much science out there that is telling us to use positive imagery to help ourselves heal. It works. If your children are feeling lost you could tell them that you are focusing on healing. That might help them cope. Even if they don't show their concern it is likely that your condition is hard on them. I was thirty years old when my dad was dying of cancer. I didn't understand anything about what he was going through and didn't have a clue as to how to help him. I felt horrible and during that period of time I made bad personal decisions. I believe that was my way of coping with his illness. When he died I was devastated and made more dumb decisions. I wish he could have talked to me about how he was feeling and I wish he had enlisted me in some kind of conversation that would have allowed me to bring out my fears and show my love. I believe he knew I loved him but I could never find a door way into having a real heart to heart with him. It might have helped him fight harder and do things to survive. I believe my dad let the cancer take him. He refused treatments because he felt that he didn't want to be less of a man. My mom told me this later. If I had know that I would have pointed out to him that he was a man and I would have told him to look at his three daughters as proof. It might have made a difference.
We have so much power to help others and to heal ourselves. But it is important to find a doorway to get communication happening. So I hope you can find a gentle way to share your feelings with your family. All the best.
Thanks for your comment on my board name. I had thought about changing it as I had meant to chose a name from one of my girls tooth fairy names from when they were little. We didn’t have any pets at the time I joined. It turns out I got the name wrong! The tooth fairy names were Starlight, Moonbeam and Twinkle. I would leave a tiny handwritten note, a sprinkling of those glitter stars and a £1 coin each time my daughters lost a tooth. As they got older my daughters would leave notes with their tooth asking more and more intricate questions on the life of a tooth fairy. On a few occasions the tooth fairy (me) would wake in the middle of the night and realise she had forgotten so would drag herself out of bed to do the whole business. On one occasion she did actually forget - due to a broken wing! I have kept all these notes. 🧚♀️
I am generally a cup half full type of person and do enjoy my life. As with most of us here I have some difficult moments but they do pass. I really appreciate your post and positivity and I also believe in positive thought. My health is definitely much improved with the treatment I am on but it seem likely that eventually this disease will be my demise. One thing in life we are guaranteed is that none of us is getting out of this alive!
Thank you for sharing your experience with your father’s passing. I am working on the family communication for their sakes.
What a wonderful mom you are and were. Your lovely daughters are never going to forget their tooth fairies. You are not very old stardust so you should be thinking 'cure'. It never hurt to be positive. Every day somewhere is working on a cure and we also can be searching for answers. So I still spend most of my time hopeful and positive. I do have my down times but I don't stay there very long. According to some astronomers we were actually created from star dust. I love that thought.
I know what you mean. I am lucky to have a very good friend who asks how I am feeling and is ready to talk and listen. Some think I am back to normal, so i just slip into the conversation from time to time that I will always be on medication and I don't know how long it will work. But also I have changed my mindset to one where I try to think normal and forget what's going on but having come to terms with it. After all many people are living with unpredictable conditions. And some may just go out one day and have an accident, a heart attack or something else. So life for us all is unpredictable and precious. I read somewhere that we cannot change what has happened but we can change how we deal with it. But I know that can be very hard.
Have you thought of registering for support with your local cancer centre? If you live in the UK Macmillan have a buddy scheme where you can have someone to talk to.
I do hope you can find the support you need, particularly as you appear to be meeting the needs of others. I imagine they are all keeping their feelings in and don't know how to help. That's why skilled support is probably best.
I can so relate. It's such an uncomfortable subject to discuss with anyone, even those closest to us. I tend to clam up and internalize it all. I've brought up our "future" a few times with my husband. He's ever the optimist with this, surprisingly, since he's always the glass half empty guy. I think it's too hard for him to try to imagine a future without me. This forum is where I voice my true feelings. Bring up uncomfortable subjects. It just makes people too sad, in real life, to talk about. We have a lovely cancer retreat very near my house. I'm patiently awaiting the reopening so I can get in some group therapy with other MBC patients and get some counseling. They're currently doing only zoom meetings which feels uncomfortable jumping into an established group of women for me. Maybe you have some local resources where you can meet some like-minded people to connect with?
I am happy to hear that your husband is being positive. You definitely need that kind of support. All my family and friends are treating me with lots of positive thoughts and they are very supportive. All this is helping me cope. I hope you can get to the cancer retreat center soon. All the best. Marlene
My cancer has just jumped from my bones to my liver. While it was in my bones I was pretty up but now I am having a harder time coping with the realities of not being around for my children and especially my grandchildren . My oncologist immediately suggested he get me in to talk to the palliative care nurse, not that I am that close to the end, but because she can help with just talking and antidepressants. I’m taking him up on it because I hate to dump it on my husband who I know will have a hard time with it anyway. He is extremely helpful and says he will be here for me but I feel bad because I feel like I am the one who should be here for him. Short story, get help from your cancer center. I have my first appointment with the nurse next week, I’ll report back afterward. Elaine
So sorry about your increase in disease. That is always a blow but as you say you will be around for awhile longer and will have time to enjoy your family. Hope all goes well with the nurse. Glad you will let us know. I think there is great help available for us.
All the best with your appointment with the palliative care nurse next week. I hope you will receive lots of encouragement and practical support. I know what you mean about offloading to your husband. I feel the same way.
And I thought I was the only one going through the same experience. My kids expect me to be constantly baking, cooking and cleaning for them despite the constant tiredness that plagues me. The worst part is that the two older ones are in their twenties. Having undergone radiotherapy to my pelvis a month ago, I felt my body was finally starting to adjust after the numerous side effects that were wracking it. Two weeks ago I came down with shingles. According to my GP, the radiotherapy hit a nerve, causing the dormant chicken pox to break out as shingles. In addition, being on Ibrance, had also aggravated the shingles.
I just wanted to lie down and die quietly. Part of me wanted to scream or simply run away. My husband is just frustrated. He tries to help by doing the work too but even he tends to listen with 'half an ear'.
You are not alone. Sometimes I retreat to the lounge, try and watch something on netflix or amazon that makes me laugh my socks off or lose myself in reading, crossword and codeword puzzles.
Shingles and Cancer!! Wow and you are still doing everything? What would happen if you stopped and said to your kids, I made dinner today but I can't do this anymore. I need help. Who wants to take over the cooking and who wants to try the baking? If no one answers then they do without. I am sure after a week they would pitch in and at least help. They can chop veggies or better still do groceries. They will survive and be better for it.
Good heavens you need to hire a housekeeper, (you will love it) and get more rest. Just my thinking. Hope it helps.
I'm with you! Housekeepers and cleaning ladies can make our lives so much brighter. The house is pleasant to be in and it is someone else's responsibility to keep it that way.
Yes, all of that and the important part is you are relieved of a huge chore and can look after ourselves. Very important. We need more 'me' time.
Yes, it is expensive but well worth it. My cleaning ladies come once a month. They are just terrific. Trustworthy and doing a great job. I can manage small clean ups in between. Saves me for other things.
I am shocked at your family's attitude towards you. They still expect you to wait on them despite everything you are going through? I hardly know what to say. I would put a stop to that and let them know that they need to step up and support you. Can they share the cooking, cleaning and baking? You need to have time each day to rest, not feel like you have chores to do on top of everything you are going through. We're not like healthy people who can have a little rest and then they are energised and ready to go again. We need rest each and every day, even when we do not always feel tired. It's still important to rest and put your feet up. I make time each day to rest. I felt very tired earlier. But I took the time to lay down and rest.
Before my diagnosis I would feel exhausted for no apparent reason. The fatigue was overwhelming, so I did not have any energy to clean or cook on a regular basis. I put it down to a severe vitamin D deficiency I had (which was treated). My husband thought I was being lazy. But when I was diagnosed I felt vindicated, so he could see I was not being lazy. I was just too exhausted after finishing work to do anything else, and even when I would sleep I did not feel refreshed or rejuvenated. Just putting one foot in front of the other was a chore at times. He is now more understanding and does not expect a spotless house or an evening meal prepared every day. So even though all of that is under control and I do generally have more energy I am mindful of how things could be if I neglect my physical and mental health. They are so important! So no more putting myself last anymore!
I think you need to have a serious talk with your family and let them know you cannot carry on like this. You will burn out. If they are healthy and young then they can learn to look after themselves. Or maybe you can compromise in some ways. I batch cook and put several containers in the freezer so there is often a healthy ready meal available on days I don't feel like cooking. I also let my husband know when I need help.
I hope things start to improve for you at home.
Take care,
Sophie
P.S. Shingles and cancer are a nasty combination. I'm so sorry to hear that.
I hear you, my daughter never was with me through all my diagnosis. Her excuse, it’s hard to watch your mom go through it and the thought of her getting it. I call it BS...
My husband and I haven’t been together since 2007.
Now that I’m MBC my daughter talks about when I’m not here... I have a grandson ( my daughters son that I’ve raised since 5 yrs old he is now 21...22 in Oct.
He does the best he can with me. He now has his own issues that just suddenly appeared.
I understand you wanting to lie down and die quietly. I feel the same way at times.
I am so tired of being a cancer patient for 15 yrs now...
Please I’m here and we are going through a life changing experience that we together understand. Reach out any time.
You are courageous Cherie. But perhaps you are expecting too much of yourself. I believe it is time to get those kids to help.
I am thinking about you and your family and realizie that you do need to develop some coping skills. You are carrying a heavy load. But until that happens you need to learn how to cope with your kids. They need to take over for you. Yes, take over. They need to know that you need help if you are going to heal.
I do believe even if your tests say progression that doesn't mean you cannot reverse that trend. You still have a chance to heal. So don't give up . Make those children learn how to cook and clean. It will be so good for them. Sit them down, the way they do it in the movies, and tell them you need them to help you. Let them choose the menus and help with the shopping and then go from there. Teach them how to do laundry and vaccum the house. And tell them you expect them all to do it diligently. Let them draw schedules - don't do that for them. Just tell them what needs to be done and let them work it out.
And let them know about your scans. Tell them that they are giving you a chance to rest completely so that your medicines can work. After bringing them into the picture you won't have to feel guilty about lying around reading novels or watching schlock on TV. You deserve months and months of complete rest and relaxation if you are to heal. If you are on a special diet you might want to let them know that you cannot eat burgers and junk food. Let them know you will make up your own diet. Cancer patients need top notch quality nutrition so take care of that yourself. That way you will get the nutrients you need. Don't worry about your kids nutritional level at this time because as they become better cooks they will want quality food. I know all of this is hard to accomplish. But I want you to love yourself enough to do this. Tell your husband to help organize the kids. I know I am bossy but you sound like you need help. All these years you and I and thousands of other mbc women have been carrying the load and it just might be why we are ill.
Love yourself. I am learning these things myself. It is hard but it is worth it. I have a hard time letting others help me. So I know that it is hard but you need to do this and you will soon find yourself healing.
They may well understand but are trying to be “up” for you. My daughter is the “glass half empty” type and I find myself telling her great survival stories. That is not what she wants. But she tells me so. Maybe you can sit your family down and really tell them what you need. And I do think support groups with people going through your same issues are helpful. Right now my daughter is not talking to me because I called her therapist when she threatened suicide two weeks ago and then took off. Left her two babies in middle of cooking dinner with her husband and me. She went to a hotel and thinks I was the bad one. I have nothing to apologize for.
Your family loves you and I think they feel they can keep you well by wishing it and showing you positivity and normalcy
I guess the problem we must deal with is that we know things won't "go back to normal." That's gone. And it should be grieved. It is a giant loss. With your family/friends, they may not speak of it because it's hard on them as well. What I have done, is just say it when I'm feeling horrible (emotionally). It will be hard for them to hear, but they will then know it's not normal times anymore. What I found is that with time, the need to express becomes less and less, but those close to me understand that my health can change on a dime, and every set of scans brings about horrifying anxiety. So, they know when scan time draws near, I'm on pins and needles and they adjust for it (new normal). Also, as part of the process, I try to always be very thankful when people accomodate me for my issues. That way, they know they are helping me. For those who can't understand my health and the worries that come with it; I just move on.
If you can get them to treat you normal then that’s great. That’s what I would want. First is all I wouldn’t want them to feel sad for me or for me to weigh them down with my troubles. Your husband would be the best person for taking care of you or a best friend that will listen when you need it. When I was first diagnosed and told everyone they really have never treated me the same. Always they were asking about it or thinking I would die in a month. Almost two years have passed and no I don’t feel the need for anyone except occasionally so I can live life or try to feel better. Things will not be the same ! Ever and I long for the pre diagnosis days. Carefree without these meds that suck. I am alive and I am grateful. I don’t want to suffer but it is what it is. I wish the best for you and hope that you can feel better by having what you need. We are here and thank God for this group that makes it easier as we are in this together. Be strong! 🙏❤️🌹
Hi Anita; Would it help to keep a journal or even just write down some of your feelings? Of course you can do that here. You can write us or write yourself and then toss it out if you want the next day or keep it.
I find writing very therapeutic but that is just me. My family is very good and they want to be helpful but they don't understand.
My two daughters and my son gave me a great gift for my birthday last June. It is called StoryWorth and every Monday they get to ask me a question and I can write the answers. They get to see my answers and they are kept by the company. At the end of the year, (or however long you want) they will put the questions and answers in a book for us.
It has been wonderful as they started out asking me about my earliest memory and other childhood experiences. My kids choose the questions each week taking turns. It is the perfect gift as it was for my 80th birthday. I have written about this before but wasn't sure you would have seen it.
That may not be for you but writing down our feelings sometimes helps. All the best to you.
I love writing about my feelings . Sometime writing down how you feel is easier then saying it . I had a long talk with my husband on how I feel and I understand how he feels also .
I want to thank everybody for all the help I received .
Around Scan time I get a little more emotional and everything is worse for me I guess . I know having you guys to talk to made it easier for me !!!
Hi Anitafazz. I do hear you and I have often felt the same way.
Sometimes I wish my friends and family were a bit more aware that my health is not one hundred percent. They need to be aware that Stage 1V is serious. But maybe we should give them some slack. Maybe they really think we will recover. And I always try to keep that belief alive in myself. But I do want to be treated very gently.
But, I realize that it must be hard to look at someone who looks great and who acts normal and then treat them as if they are sick. So, I remind people in subtle ways be saying things like I need to go for my nap. I also tell people that in the afternoons I go on my Wave Mat and read my book. That helps them stay aware. It seems to shut the door on telephone calls and visitors. I tell my husband to let the telephone callers know I am resting. That helps keep people at bay. I don't want to be alone with this. I love my friends and family but I do want people to respect that emotionally I have a big load on my shoulders and need an extra bit of consideration. So maybe you could figure out ways to keep some of your friends aware that mbc is a very big battle. In your own heart keep believing you will get well. Don't spend time on statistics just believe and tell yourself every day that you are healing. This is just my way of dealing with all of this. Most of the time this strategy keeps me feeling good. I hope you stay feeling good too. Hugs Marlene
Well, everybody needs to be seen and heard and empathized with. If you don't find in in your family, 100%, you have us here and also you might have some friends that are there for you. Or even neighbors. My family is also quite distanced from my case and they are all positive and think there is nothing wrong with me.
Hallaluyeah (spelling?) to that! I too love this beautiful place with all of you. We genuinely care for each other and don't have to explain oursevelves before getting to the nitty gritty. We are already at the down and dirty otherwise known as the bare truth. There are some beautiful truths written on this communal diary.
Isn’t it interesting that we can want different things. I was so excited the other day when I forgot to get my weekly labs done. I had actually forgotten the next day was a chemo day! No one had mentioned it in days and I felt rather normal (except for the bald head and mask).
I have learned that if you want people to treat you a certain way you have to communicate it to them. It is hard. We want others to read us, to know us. But I don’t even know myself some days.
As a mom we have learned to give and give and give. It is a change to learn to receive. I felt so awkward when my church family started bringing meals. But it was lovely, and it was an easy way to let my husband and daughter know that when those meals stopped it would be lovely if they pitched in. So now they do meals on certain nights and some nights its leftovers or take out and we all realize what a treat that is.
I still have to remind them that I can’t do what I use to. I have to remind myself that sometimes. I went to the mall the other day and was barely able to make it back to the car. I was exhausted. I had to sit for a few minutes before driving home.
Don’t assume. Show grace. Communicate with love. This is a new normal for everyone.
I think some really and truly do understand and can sympathize with you when you’re not feeling well. And give you that comfort when you need it. But that’s a very small percentage:
Our family can imagine our pain and truly do care but are completely in denial.
And then you have those who say “I’m here if you need anything” but you know they really don’t give a shit. Like my husband who told me he loved me just the day before and that we’d grow old together but somehow overnight some demon possessed him to call it quits the next day because “HE couldn’t handle my cancer”.
I say..... voice what you’re feeling to someone that you know will give you that shoulder you need once in awhile. Even having just that one person to cry with is enough.
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