Hi all I don’t come on here much. I have crippling depression and feeling so low at the moment. I have literally no support. Not a family member or friend. I have been having terrible mood swings and I feel so frustrated in how I feel. I have alot of selfish people around me. However I am not backwards in coming forward I seem to say it how it is and don’t have a filter. I just don’t know what’s wrong with me. I’m not wrong and I am being treated badly. However I am reacting badly to it. This seems to give them the ultimate excuse to dispell what they have done and focus on my outlash of a response.
I am 45. I lost my mum to FTD dementia. This dementia is rare and tthe most challenging. It occurs in people in there middle ages. My mum started showing signs at 55/56. She died age 62. I was her main carer for four years. To say it was difficult was an understatement. I live in a flat on the second floor with no lift. It’s an victorian building and the stairs are very tiny, very ickledy pickledy. The actual width is a size 3 step. Seriously I have to go down them side wides. My mum was 5"7 size 16. She lost her mobility due to parkinsonism on top of the dementia. My mum also suffered with a constant infection which affected her behaviour. The shock of seeing someone you love change the way she did literally shocked my system. I felt I went into a denial. It was a survival mechanism. Mum wpuld lash out and was very demanding…she never slept and hit me if she wanted something and I didn’t do it straight away. I was my mum’s life when she was well. She was my rock. She was a 24 hour mum. I relied heavly on her. Now the roles had reversed. I was mum and she was like my child. Her symptoms could be horrible. I felt so heart broken as she was the most loving soft hearted beautiful lady. She never swore. She never judged anyone. She never gossiped. She was someone people respected. Now she was swearing throwing things etc. My family were awful. They took her symptoms personally…not only was I trying to get my head around this and looking after mum I was also studying mum’s disease and trying to get it into people’s head she was sick and didn’t mean what she was doing. I also went into shock as they knew mum they knew this wasn’t her. Why didn’t they have patients or tolerance or understanding. She was there sister auntie cousin mum partner. Why am I having to do this. The stress was mounting up on me. I was constantly exhausted. There was no rest with mum. Some days I wanted to scream. And all the time not one person was there for me. My closest child hood friends also seem to think that it how could I be going through all that. Becuase on the very rare occasions they visited they only saw mum for an hour. They would sit there and say “oh she’s ok” sometimes it made me feel like I was a liar and I was making it up how bad things where. It came to a point that I noticed a month had gone by and not one of them had called texted to see how we where. It complete frustration I sent a text telling them a few home truths. To me you can’t dress the truth up or how you feel. So they took that as thr perfect opportunity to use it as completely not to bother with me and mum. From that day not any of them have spoken to me. I also said I wanted nothing more to do with them.
However mum passed away last August. Then in December I was diagnosed with breast cancer. I had a size of a tennis ball in my right breast. Stage two ductal breast cancer IDC. Still not one of them contacted me. A neighbour contacted my brother when I had my first course of chemotherapy as I was so sick. Home alone. I had not one of them come and visit. He did but I could feel they had all ganged up on me like a pack of hyiegners. Pls don’t think I’m mad. I promise you I had that strong women’s intuition. I felt it of him. He had betrayed me like you wouldn’t believe.
I had a mastectomy 7 weeks ago. Still at home alone. I feel a bit suicidal. I don’t get how cruel they are all being. I will never forgive them. I don’t want them in.my life but they are also all I know. I need to find some groups for women with cancer. I cry for mum every day. I miss her so so so much my heart is broken. I’m bald with one breast and look awful. I feel in so much pain in my right armpit arm and chest wall. I have IBS frobramalgia arthritis scriosist. I’m sorry to go on. But I’m in my flat day in day out as I feel so poorly. I don’t know what to do anymore. I feel so low…I just want my mum and for all this to go away…I have been through all this alone. I can’t believe how they have treated me … I was always there for them. I was always the one fixing people. My best friend when she spilt with her partner. I decorated her whole flat. I sat up with her every night. I looked after her daughter etc. She met someone else just when my mum fell Ill and off she went. Am I expecting to much? I feel so ashamed having to wrote this. I feel so desperate and lonely…scared and heart broken. I was hard work I own that. I was just under so much pressure the last five years. I don’t know how much I can take thanks for reading this. Sorry to be so negative. I have no one to talk to anymore.
I have just read your post and wanted to just let you know that we are all here for you on this forum. I really do not know what else to say that will be of help, but I wonder if it might help you to call the helpline number where you will be able to speak to someone who might be able to give you help and support.
You have come through so much and done so well with everything that you have been through and no one can ever take that away from you.
Just sending you a lovely hug and hope that you can find the help and support you need. Dont stop coming on here and talking to us, that is what this forum is all about.
l know how hard it is to get on with breast cancer and I have a family. My mother and sister died within 11months of each other. My mother died from old age and my sister struggled with cancer for four yrears. I also was the main carer for my mother in law and she died 3 weeks before my sister. I had travelled many miles over some years trying to care for them, so it seemed like a cruel reward when breast cancer was diagnosed… No mum or sister - missed them more than ever.
lt was my friends who got me through it all , family are too traumatised, Mum isn’t supposed to be ill and husbands can’t cope.
So where can you find support, particularly female.
Is there a WI or something similar you could join. They are friendly with meetings and clubs to join. I hadn’t been a member long but they were so supportive… Any breast cancer or Macmillan groups near you?
You say you are bald with one breast, well you are not alone there , but you are only 7 weeks post op so don’t expect too much.
It may be that you could try and make contact with some former friends. Explain how you felt, see if bridges could be built . If just one of them contacted you back it’s a start. Perhaps you will have more insight into their rejection of you.
I probably have been no use, but I wish you well . You must still be under the care of a medical team or GP. Time to be honest with them, they might be able to help as well.
This forum is a friendly place .I am sure someone else will come up with ideas , better than mine.
Lady bowler thanks so much for the reply. I really find it hard to reach out that’s always been a thing I always try and just get on. But lately I find that I am need of some connection with people that understand. As I feel the people around haven’t even wanted to try. I just wpuld like to find a nice group a support group. I also feel I need some therapy of some sort. I have been in touch with macmillan. However this evening it’s all hit me really hard. I jsut needed to reach out. It was so hard writing all that. I know how it all seems however I really am feeling no matter what when someone gets cancer surely people leave stuff to one side to be there. Then I remember how they treated my mum so why should I be any different.
I need to start my life again…I need to let all this go. I want to heal from all of it. I welcome any support right now. It feels like I need to smash my pride and ask. As I said this isn’t easy…also to go through all this awful famiky stuff as well its been a really hard time. Thank you for being here tonight and reaching out. Xxx
So sorry to hear how you’re feeling, it is tough enough going through cancer treatment anyway, let alone what you went through with your mum & family as well. Sadly, family & friends sometimes are not helpful, but that’s not your fault, rather it’s more about them. It certainly sounds like it’s just all rather caught up with you a bit, but you are not alone.
Glad to see you have been in touch with Macmillan, there may also be volunteer support available if you feel that might be helpful, your treatment team may also be able to advise on this.
Also, there is the helpline above to talk things through if you need to.
Do come & chat here whenever you want to & take care.
Over 70. Ahhh I’m so so sorry for your loses. I did also mean to say two months after month my best friend died of a blood clot suddenly. That was also a shock beyond belief. I am willing to join as many groups as poss. I have ask macmillan and they have reffered me to counselling jsut waiting to hear now. I so relate to you when you said getting breast cancer as a reward for caring the way you did. That’s exactly how I feel. I do believe the stress of everything didn’t help with my own health. However I wouldn’t change it for the world. I miss my mum terribly. I really don’t want to contact people who have treated me the way they have. I did nothing wrong apart from asking them about there behaviours. Like I said to lady bowler I need to start a fresh. I need like minded people and I need to get positive in my life. I can’t thank you enough for reaching out…just to know someone who has been through similar and understand means alot. I don’t have a partner and I have cut alot of people out my life. When I was caring for my.mum with dementia I knew I couldn’t ever be the same with these people again. I’m too heart broken the way they treated my mum. She never deserved that. As I said tonight it hit me…I’m in so much disbelief that this is all happens that I’m getting like these flashes of it all and it’s so so painful and hard to cope with it alone. I have two friends that are there. They are both really busy. Ones a nurse. The other a mum with two autistic kids. So we all have a lot on our plates. They both can’t believe what I’ve been through. Thanks you so much I miss my mum so much. I’m so sorry about you mum sister and mother in law. It sounds like you have been incredible person and I can’t believe you managed all of that. I hope your being taken care of. I know men can’t cope. However its still nice to have that other person there day and night…I wish I had someone like a partner in my corner. Your husband must be so proud of you and so grateful for what you did. I don’t know about you but the cancer stuff I feel hasn’t even hit me properly and I’m still back there with mum and digesting all that. Also mourning her. To be in mourning and cancer is so strange. How do we find that strength?? It’s hard enough losing your mum let alone this on top! Are you having counselling? I need to speak to my nurse they do know. They feel I have PTSD from mum and the whole situation. Anyway sending you a massive hug and thank you so much again xxxx
Hi anne thanks so much for reaching out and for your lovely message. .I Hooe your ok and well? . another day and trying to be more positive however in alot of pain as well…I’ve just spoke macmillan and they are going to try and rush the counselling through. I feel so alone right now. May be I deserve this. I am not sure of anything anymore. It’s been such an intense five years that I feel I’ve really had enough. Really looking at what I shared with all you lovely ladies is only the half of it. Anyway I’ll have to save it for therapy. I nearly called the samaritans last night as I couldn’t sleep and I’ve only had 3 hours so feel so drained. I’m not eating properly either. I forgot the last time someone cooked for me. Or I went out for dinner etc. Although to be honest I can’t handle public places. I can’t stand the stares and I also get over whelmed quickly and just want to get home. When I do get home I’m absolutely exhausted and then it takes me at least three days to recover. I don’t drink alcohol. I do still smoke as I have awful anxiety. I need to stop and the more I tell myself that the more anxious I get as I know I should have well given up by now.
I know I’ll get there yet I feel it’s a massive mountain in front of me. I don’t know where to start. I suppose counselling would be the first step. I really hope it helps with these horrible feelings I have … just feel like I’m existing at the moment. Thanks to all of you for being here for me. I can’t tell you how much it means xxx
Oh wow Joan you sound like a proper soilder! You’ve inspired me as well. Your so positive and what after you’ve also been through I feel embarrassed that I’m so weak compared to you. I never been strong and I’ve always been sensitive. So the intense stress over the last five years has completely floored me…I hate the way I look…I’m single and after mum passed away I was thinking it would be a nice time to may be meet someone. This C put an end to that. I use to get a bit of attention. I was a size 8 long dark hair and looked ok for my age. Now I’ve seemed to have ballooned out?? My stomach is so swollen. I have wirey grey skin head and one boob. I can’t wear a bra to even it out as I’m still in so much pain from the op…its been two months and it doesn’t seem to be getting any better?? It’s only 8 weeks so may be it’s still early?? So I don’t feel I stand a chance of meeting anyone any time soon. I haven’t had a boyfriend for 7 years and I miss that as well.
Oh well I must start some where. Therapy will be the first step. Thank you Joan for being here for me. Your amazing inspiration. Pls stay in touch love nicki xxxx
Hello Nicky
Thought I would just pop in and say hello really …you have had so many lovely replies and support there is not much more I can say.
This forum is a good support network with real people that understand what you are going through. Hopefully you will find a lot more threads that you can join in with too. There’s something for every treatment …chemo, rads etc and once you get to know the ladies …there might be someone here living nearby that you can meet for a coffee.
I have met some lovely ladies here …we have lunch and coffee/ cake and really enjoy a good natter and moan about our worries.
Well that’s about all I can offer at the moment.
Carolyn
Hey Caroline…what a beautiful supportive hopeful message…It brought tears to my eyes. I would love to meet up with women like me for the support and even just a little social get out! I will join in on some of the other threads as well. I spoke to someone at macmillan today and they have promised me they are going to push for some counselling for me. If I feel that bad I could also go to A&E to a on point psychiatrist. Hoping it doesn’t come to that. I did feel better today for finally building up the courage to come on here last night and share where I’m at and how bad I feel. I am also going to join a mindfulness course at a Buddhist centre in Bethnal Green. So I’m looking forward to that. I’ve also seen some courses I would like to do in September god willing I’m stronger. Funny enough it’s learning hypnosis for anxiety and then become a fully qualified hypnotists. Although I don’t feel well and don’t feel strong at all. I keep getting really breathless I know this is not anxiety. I’ve had this since the chemotherapy. My body still feels so fragile. I’ve just started taking my dog back out for walks up the Thames. Although I get back home and I’m absolutely exhausted for the rest of the day. I have to see a rheumatologist next week as it’s looking like I’m suffering with chronic fatigue/frobramalgia. So I have other stuff going on as well as C treatment. I started feeling the fatigue when I was my mum’s carer. I’m so gutted as it Really restricts you. Your mind says you can do this and that…when you do this stuff your body says no. I just think my body is exhausted and I have been told after having to lift my mum push her in her wheel chair for those years I now need to rest a bit. I just get itchie as I feel I should be doing something so I’m never really relaxing…its like I’ve got to relearn how to relax and not feel guilty…I never stopped with mum. Also I have my daughter and my beautiful granddaughter whos 16 months. She’s a new mum and obviously you need your mum with your first baby. However I feel like I’ve let her down as this **bleep** disease has put a pressure on her and she shouldn’t have to go through that. Where she’s young as well she doesn’t seem to take in what’s happened to me…don’t know if it’s denial or she’s young and thinks mum is invincible. Haha. Probably a bit of both. So sorry To go on not had anyone to talk too. So its all coming out here…I really hope your well Carolyn?? How’s everything going for you. Sound like you have met some truly amazing women. What a lovely way not to feel alone with this. I’m still so scared. Even though I got the all clear. I still feel terrified now. Lots of love and thank you so much for your thoughtful message. If anyone has a thread to suggest would really welcome it thank lady’s you have all been amazing and I feel a bit better xxxxxxx
Glad that my humble posting helped a bit. If you go to the main menu you will find a thread called going through treatment …there is several chemo threads there to help you with side effects of the treatment u r going through at the moment …day at a time …baby steps .
Once u settle in with the forum and get to know the other ladies …you might just find a buddy to meet up with you but sadly it won’t be me as I don’t live anywhere near you in bethnal green !!!
I don’t post here very often but hang around the secondary bc threads mostly but I will dip in here to keep up with your posts etc.
Anyway …try to stay close to your daughter and granddaughter …you will find her a tower of strength and you will be surprised just how much it will help.
Thank you Ann…your have been so understanding and I thank you for that. It feels like people don’t even give you a break with cancer these days…its just a horrible place to be in. I gone a bit low again tonight…its like waves…its so so lonely…its tom just need a hug and someone to say everything will be ok. Well I have got that here. Will try those threads out. I’ve been that hormone drug tamoxifen not sure if I spelt that right? Anyway I have had some awful body aches last couple of days…as I said I have arthritis so I’m not sure if this is going to make it worst…they took a bone scan to check my bones and it did come back I had server arthritis. That’s why I’m not sure why my oncologist put me on this one? I’ll come over and ask about. Thanks Ann…how are you?? Are you ok?? Read hope all is going well in your corner. Xxxx
Thanks so much for asking, Nicky. I’m absolutely fine & have felt back to normal for a while now. I did not need chemo, so my recovery has been quite straightforward. I had my first year all clear in March.
I’m also on tamoxifen & have been fine on it, but for others, side effects can be more troublesome, so its good you have spoken to your onc about it. The helpline on the top of this page will also advise on this. Some ladies here have found that mild anti-depressant treatment can help with side effects, see the venlafaxine thread in hormone treatment.
take care
ann x
Ahhh well done Helen for the win with the ladies and making it through. Congrats! Sounds like so much fun. How you feeling? I’ve found a bump in my right arm pit. It’s like a swollen ball but may be something to do with my lymph nodes being taken out and all around that area hasn’t healed properly yet. I’ve let my nurse know and they want me in to do an ultra scan Monday. It’s a good thing as they can have a look to check at where the pain is too. I got the all clear fron my lymph nodes and everywhere else so it can’t be nothing. Anyway I’m going for a nap as feeling so tired today. Not sleeping at all. Thanks Helen sorry I feel like I’m being selfish. Sorry if I am.
Niki, Wondering how you are feeling? Have you found any grieving support groups or breast cancer support. I remember when I was diagnosed with my primary breast cancer I felt OK and didn’t feel I need support. Then when it came back in my lungs I felt entirely different. Friends and family don’t get it!! They don’t understand how lonely you can feel. It is not easy living this life! Part of my losing weight, beginning exercises and making a change every week was to help me concentrate on other things and keep my act together. My latest change is trying to find some little inexpensive things to do. I like nature and enjoy getting outside.Do you have any hobbies or activities you enjoy? Please tell us more about you! Hugs! Hang in there! FF
All of a sudden I’m finding I can’t cope with my diagnosis of sBC. I am being treated for major depression which I had before this happened. Any tips on coping?
Hi Nicky sorry to read you are feeling like this. On my primary BC journey I joined my local support group and activities like yoga and aquacise through Macmillan. You will eventually make some lovely new friends to share your journey laughter and tears with. What area of the country do you live? Sending you warm positive thoughts Nicky x