I’m disappointed with my bone cementing procedure as I’m still in pain but in a different are
The main reason for having it done was so I could be more active..ride and go for walks..now back on painkillers and feeling as if my life is over
My husband is useless..just continues with his nice little life iie golf 3 -4 times a week and seeing his friend whose wife made me a cake last week which I almost threw at him!!
I’m feeling sorry for myself and nobody seems bothered..they’re sick of this new me..I feel as if they want me gone
Do any of you ladies ever feel like this..it’s not like me at all but I’ve had enough
Barb xx
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Barbteeth
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Dear Barb, sorry you are feeling like this! Have you been for your stitches out yet as you need to ask whether the shoulder pain is related. I had it for a couple of months and it did make me feel miserable especially when I was unable to sleep. Mine was probably an old injury flaring up , overdoing things , or possibly Letrozole related, but it did clear up.So hoping that is the same for you! Also have you ever been to Breast cancer Haven ... i think there is one in the Midlands. I travelled to one in Yorkshire and found it useful to meet other people in similar circumstances , just to be able to talk to people going through it . I booked 10 free therapy sessions ( counselling and dietician are options too). I think no matter how caring family are , in their own individual ways ! , no one can really understand what you are going through , other than those in similar situations . Sending you cyber hugs , love Teddie x
I’ve never heard of breast cancer haven so will look it up
I’m having my stitches out tomorrow but not seeing the consultant for another week..I dithered over having this procedure for months and now I wish I hadn’t had it done!!.. it’s onlt 2 weeks though and maybe this is just a settling down process..I’m so impatient and full of hell at the moment..popping over to see a dear friend of mine this afternoon..she’s 80 now and used to ride with me for years and she’s hilarious so she’ll cheer me up!!
I’ve always been so active and busy but now I find I’m by myself a lot and it gets me down..I do sound a misery guts don’t I?
I had some extensions put in my hair on Wednesday..it’s got thinner but now it looks fab..something I’ve never done before but well worth it
The hair extensions sound fab! Mine too has thinned and I cut it much shorter to try make it look a bit fuller and have blond foil highlights. I keep active by walking my 2 dogs in countryside near to my home ... Local dog walkers are all friendly , and I agree with you that spending too much time on your own can only get you down. Even walk without dogs with those walking poles! I am lucky where I live to have found from the Breast Cancer ‘Moving Forward ‘ Classes( run in all major UK towns ) ,that my local Uni exercise science course has exercise classes for breast cancer ladies , which I now attend twice a week for specialised weight bearing exercises/ circuit training . I feel good after these one hour controlled sessions and enjoy meeting up with ladies who are ‘like me !” .But any exercise you are able to do will make you feel that bit better in yourself, and meeting people even more so . Hope you are soon up to it ! x
Sometimes I think of how my husband will get along ok without me and even find another, better? Partner to enjoy his golden years with our hard earned money. I’ve told him he better not give my mother’s jewelry to his new girlfriend. It’s not nice and he says nothing. I kind of mean it about the jewelry, and I get that it’s my problem, being resentful and even jealous of someone who doesn’t exist. Yet. My husband always comes for appointments and does anything I want to do for fun and vacations. He’s also much more social than I and has always gone out with friends without me. For the most part I enjoy my alone time. How can I not hope he has a wonderful life with or without me. I think it’s more about my loss than his. But it is hard to think about some times. I try not to go there in my head.
ha. i just changed my will so that if my husband remarries the newbie gets zip of my estate...controlling from the grave! even though i'm not even close to that....he changed his too so that if i remarry - the bulk of the estate goes to the kids. it bugs me to think of someone moving into my role... so silly, but it is helpful to acknowledge how you feel..and it is totally normal!! it is so weird how we project on the future. try to stay focused. you have no idea how long you will be here and no one gets to predict how things turn out. he probably says nothing because he can't even go there mentally... men just deal differently with stuff like that! xo
I think it is normal to feel this way. I know it sometimes crosses my mind too! I have always been a planner, looking ahead to the future and trying to see how things will pan out. So of course the idea of some other lady coming along also creeps in at times and bothers me! But I also think that we often look ahead to things that do not happen. How many times do we "overthink" something, even to do with this disease and it doesn't work out the way we had planned?
This is so exactly what I’ve been thinking about..about him getting someone else and her getting my money etc..I haven’t sorted a will yet as I find it too morbid but I think I need to do it..my daughters are the most important people in my life
Thanks for your reply..nice to know I’m not on my own
Barb xx
in reply to
Hi Nrocks,
I must admit that I have thought of this too! It is hard not to really. We have had the difficult conversation of what will happen when one of us dies. We always assumed that my husband would die first, as he is 13 years older than me. He still says that he will go first. He has always said that he would not remarry if he was widowed, and I believe him. I feel the same way. But having said that, it is not really possible to know for sure how you would feel until it happens to you.
I have only ever been married to my husband, so I don't know what it is like to be widowed.
My mother-in-law was widowed after 34 years of marriage when my husband was just 15 years old (he was the 9th born in his family). She must have felt lonely and in need of companionship, which is why she remarried within 2 years of my father-in-law's death. She was widowed a second time, and is now single. Whereas my dad is different. He and my mum were also married for 34 years until her death in 2004, but he has remained single.
Your husband sounds like mine. We are opposites too! He has always had a more extrovert personality and I am more shy, but that has improved over the years. My husband also wants to be there with me at all my appointments. I told him he doesn't have to be there for everything. For example, he isn't present when I get my blood tests or for my monthly Zoladex injection.
I understand what you mean about your mother's jewellery. That is something that belongs to you and is very personal. I have already thought about that. I plan to sell my mum's jewellery, as I don't have any children to pass it on to. Not long after I was diagnosed I wrote a series of letters, one of which is concerning bequests. I specified where I want my personal belongings to go. I just have to follow this up with a will. I haven't been able to bring myself to execute a will yet. Perhaps it's because I have a lot of fight in me and it would feel like I am admitting defeat (even though I know in my heart of hearts that this isn't true).
Take care,
Sophie x
Hi Barb,
I can understand why you would be feeling down in the dumps. I also find it hard to function properly when I am in pain and it feels like everyone else around me is carrying on as normal with their lives. Are the painkillers helping to control the pain or do you feel that you need to speak to your doctor to see what's going on? I occasionally take paracetamol and ibuprofen when I need to, or codeine when I have had more severe pain (I needed codeine after radiotherapy in August when I had a bad reaction). Hopefully this pain you are experiencing will soon be gone so that you can get back to your normal activities again.
My husband also enjoys golf. He goes golfing every Sunday with a friend if the weather is nice. Have you spoken to your husband about how you are feeling? Maybe he can stay home a bit more with you, especially at this time while you are in pain and down about things.
You're welcome! Sometimes just talking about what's going on is all you need to help you feel better. Enjoy the rest of your weekend! I've got a couple of dogs I have to go see before I have my tea.
Sorry to hear you are feeling so down, I can relate to everything you said.
2 thoughts - did you have a general anaesthetic? As you will know that stays in your system for longer than you would expect and can be a depressant. Also, have you had an antibiotic course? I get really down when I take antibiotics. Some evidence now that gut bacteria affects mood.
It's early days, you are expecting a lot from your back. Just because it isn't better yet doesn't mean that it's not going to improve. Would it be worth seeing an osteopath to get your posture checked? Being in pain for so long can affect posture without you realising and cause more pain. An osteopath or physio should be able to give you some gentle exercises to improve the muscles that support your spine.
Have you thought about counselling? I'm seeing someone at the moment and didn't realise how much pentup frustration I had from my husband. When I started talking the floodgates opened and I found had so many resentments lurking that I hadn't even remembered - e.g. When I was being treated for stage 2, 2 years ago, I heard he'd been discussing in the pub with all and sundry how when (not even if) I died he was going to sell the house etc. I've realised that tension has also had a physical impact. Properly talking about it has been depressing but I don't feel as though I'm carrying such a heavy load.
With apologies if I've repeated what already been said, but there may be partially a mechanical reason for how you are feeling which will lift. Just remember you aren't alone, we are all going through this together
Yes I had a general anaesthetic and antibiotics so I guess that could be contributing to my low mood..just been to get stitches out and the wound is ok..I don’t see the surgeon till next week for a follow up but saw the doctor on duty who prescribed me stronger painkillers..ugh!!..told me pain probably from procedure and to use a heat pad to encourage blood flow
I went to see my horse afterwards..brushed and fed him and had a cuddle (or two!).. pain horrid even after that
I live in Nottingham so there are two centres in Leeds and Solihull which are only an hours drive away so I’ll consider that..I’m not one to ask for help..but stubborn and hate relying on people as I’ve always been independent and a feminist so hate all this stuff as I’m not in control any more
Anyway I’m getting my gladrags on tonight as it’s my friends birthday bash..my hair is nice from my extensions ( very extravagant!! Lol) so I’ll try to buck up and have fun
I know exactly what you mean about being in control, I am the same. The counsellor pointed out to me last week that the need to be in control and to cope, means that people think I am ok and don't want to interfere so don't offer the support needed. I want support but I don't want to lose that independence, it's a tough situation.
Try the haven, I've found it to be a really positive place and no one is sitting round wringing their hands saying how awful or telling you what you should be thinking or feeling. It's good to be in an environment where everyone gets it and you don't have to explain.
Enjoy your night out and don't lose the thought that all this is going to improve, there are physical reasons why you feel low and they will get better, the real you is still there! Xx
I feel that we are similar with wanting to be independent..I remember taking my horse out by myself for the first time after the mbc bombshell diagnosis and people were telling me off for doing this but I’m so bloody minded!!
I also related to your post about your husband telling people about your cancer... mine did exactly the same but after the mbc diagnosis..he told the bloke in the paper shop..people in the pub and a woman who used to live next door..I was absolutely livid..had a big argument and now I feel uncomfortable if I meet these people.. they’re not friends of mine and they give you the ‘look’ which is very upsetting. I spoke to a dear friend of mine who is a retired nurse and she said it’s attention seeking for him. Anyway he’s got the message!!
Men! I have had no privacy from the very start. I don't take my husband to appointments with me and only tell him the things that I would be happy to put in the parish magazine! I've had to accept that it's his way of coping.
My joy is landscape photography and walking. Before the mbc was found I was in severe pain and found walking really hard, once on medication it improved but I still get nagged that I'm doing too much. I just smile sweetly and carry on, and I'm sure you do the same xx
Ps, I haven't been brave enough to ask the oncologist if I can go back to ice skating but I plan to
I don’t take mine to appointments either as I’m quite happy just sitting with a book if the oncologist is running late or I have to wait for lab results..can’t be doing with him sat there fidgeting and looking bored..drives me mad
Yes, “the look.” It really bothered me, but I am finding it more hilarious and ironic. You ask me how I’m doing like the death clock is ticking over my head. Like you’re at my funeral and I’m already a corpse. Well guess what, we’re all mere mortals and the clock is ticking for you too. Maybe that’s what I’ll do next time someone gives me the “look” and solemnly asks how I’m doing. I’ll tilt my head, scrunch my eyebrows together and ask them the same thing. I know people don’t mean to be obtuse, but for Chrissakes, I still have a pulse.
I actually think your friend's comment is funny because it is so true! That's how I tend to think when I see people giving others that look. Yes they mean well, but they don't stop to consider how it makes us feel. And none of them seem to contemplate that they could themselves be sick in the inside and not know it, just as we have all been there! I'm all mentally prepared to one day answer to one of these people, with something like, " Great! I'm still alive today!".
I had a similar experience with my husband telling others of my cancer "so they would understand". I was really annoyed, I've told only a few myself. I don't want The Look either!! He did it for himself, like most he does. It's very selfish actually.
I have to say I love your outlook and your sense of humor. I also wanted to thank you. You responded to a post from me and referred me to Kris Carr. She has made such a difference in how I look at things and find her very inspiring. Thank you so much.
Kim. You are welcome! Did u check out the ongoing Cancer Summit thru Hay House? Each session is free for 24 hours and it’s almost over. I only got to listen to her Dad who went thru pancreatic cancer. Great guy. I tried not to buy the series (my husband just lost his job) but couldn’t keep up so bought the package. All the best 💕
Argh, these types of series frustrate me. There was a week long one called The Truth about Cancer." I hear one. I really wanted to listen to the others but was either too busy or too tired. I can't afford to buy them! And now I just realized I've been missing the Hay House ones too
Just noticed that another response has mentioned that you are in the midlands (U.K.) Breast cancer Haven has places in Hereford and solihul. If you haven't found them, they see any one with breast cancer from anywhere. They offer lots of things to help as well as counselling and they understand exactly what it is to be living with this disease. Well worth making contact if you are within travelling distance.
Hi barbteeth, sorry you are having a rough time. Certainly being in pain makes you think you will never improve. I have had a lousy week. I fainted on Tuesday, banged my head and chest, was sick. My husband called the ambulance and I was taken to Shrewsbury Hospital. Lovely staff there and many tests and hours later I was sent home. I keep napping....exhausted....plus difficult to move as I have v painful ribs ankle and knee. We have cancelled our few days away next week as a result....all rather bloody! I find it helps to chat to friends, on the phone or face to face. It lifts my mood in a flash. If on my own too much the future comes rushing in and I think of contacting Dignitas. Hope your spirits lift soon, thinking of you and your beautiful horse, rotagirl/Fay
Thank you for your reply...you poor thing fainting..that’s one thing I’ve not done yet!!
I actually don’t really suffer from much fatigue although a lot of you ladies seem to do I guess I should be thankful for that..glad you’re recovering from your traumatic Tuesday
Do you take Ibrance and letrazole?.. I’m on these now and managing on the 100mg Ibrance..have had an outbreak of cold sores and look a sight!!.. not sure if there’s a connection..I suppose the immune system doesn’t cope as well on these drugs
Ibrance can cause cold sores. I talked with the pharmacist and used a cream that's called Abreva here in the US. It cleared them up within 2 or 3 days! The tube of the cream is small--maybe half the size of my smallest finger, and seemed expensive, though not prohibitive, but I only used a tiny portion of it. I hope you can find something similar. I was going to write to you when I finish reading the other responses and will do that, so more later! Ta!
Hi, thanks for quick reply. Funnily enough the week before fainting I felt so well that I thought the meds couldn't be working! So many unexpected blips in this treatment. I am on 125 Palbociclib and letrozole. I had a CT scan this week so will be interesting to see what is happening. I sometimes think of the future and what my husband will be doing and who with....but it gets a bit depressing. I am 78 and he is 75 so who knows? Hard isn't it. Fayx
It’s awful for us all..I feel that my husband thinks I’m boring..he’s very selfish and thinks that because I’m having treatment then I should be just how I was..well I can’t despite my best efforts..I really need to get this out in the open
Hi Barb, sorry to hear about your condition after vertebroplasty. Would you like to try a drug free pain killer? Try a medical device called Paingone. I think it cost you $50. This device work on piezo electric pulse which help kill your pain effectively. You may search the Web for detail. Hope it helps. Take care
Hi Barb, I'm so sorry to hear about your pain following your procedure. I wish I could offer you some practical advice, but I can't. I have not had that procedure, yet.
However, I can totally relate to the husband comments. I feel for you, especially about the golf. Mine, too, is useless most of the time. Since being diagnosed 5 years ago, he has barely deviated from his routine - each day out the door at 5:15am and back home around 8:00pm (for work). He does not have to work these long hours - he chooses to. The routine hardly ever changes no matter how I am feeling or what appointments I have.
I feel the same way as a lot of the ladies about leaving money. I created a living trust and named my three children (19,23, and 25) as the beneficiaries of the trust for some of the money that is in my name, which I inherited from my parents. I feel empowered by some of the comments and realize I have not done enough. I'm going to change my will (and my husband can change his) about what would happen if he remarried.
I'm really hoping that you get some relief soon from your procedure. It's bad enough living with the emotional aspect of metastatic breast cancer. Adding pain to the situation can be all too much.
I’m Barbara as well but I get called Babs,,barb,B and Barbie!. So I answer to any
Thank you for your reply..I just thought it was me feeling like this about my husband .. now I realise a lot of you ladies feel the same or similar which cheers me up
I must be morbid but one of the first things I did after chemo was to make a will actually a joint will unfortunately my one child, a son, is irresponsible so had to step out just how and when he gets our money. I have my son as a beneficiary on some things. I am trusting my husband to do what I’ve asked but think I will put it in a letter with my will. I’m going to start giving away some of my moms jewelry that I don’t wear to my SIL who has a daughter to pass it down to. SIL was a wonderful and surprising presence when I was first diagnosed and fell apart. I have a sister and brother but sadly they’re not there for me.
So many things to say to you....wish I were close enough so I could come over and bring a nice bottle of wine, some chocolate and a pretty knitted wrap for you to cozy up in! I joke that sometimes I just want my mommy! She could always make me feel better when I was small. I've had a couple of back surgeries, unrelated to the cancer, and my experience was that it really does take awhile for everything to heal, and when we have procedures on our bones, other parts have to adjust to the changes and that can cause more aches and pains until our ol' bodies sort it all out. Not fun to live thru! I haven't been on a horse in years but had horses when I was a teenager and sure understand the longing to get back up there. And I miss physical activity--so much loss comes with this blasted cancer, you might call it this bloody cancer! I understand what others are saying here about wanting to feel strong and independent and in control of things! One of my first reactions to this diagnosis, and a move for control I'm quite sure, was buying the biggest 3 ring binder I could find along with a bunch of dividers for it, and started a breast cancer book for myself. I kept a journal of my thoughts and feelings but also notes from every medical appointment, procedure, etc and got copies of all my test reports. I also kept a list of things friends offered to do for me, and a list of resources I heard about for learning more about cancer, breast cancer and living with mbc. I took the binder with me to all my oncology appointments and filled the binder within less than a year! I started a second binder. Now, I'm over ten years behind in filing things in it, but it sure helped me cope for the first few years! Alot.
Asking for help has been a huge hurdle for me! One place I started was the grocery store! lol When I check out, I ask for help getting my purchases into my car and I have had some very nice conversations with the young people who work at the store and do this for me. One just got back from spending 6 months in Africa doing missionary work--he is really interesting to chat with and I never would have heard any of his stories if I hadn't started asking for help there--I keep telling myself that! My husband's brother is staying with us right now and that's been wonderful for my husband. They are both retired and we live on ten acres of mostly woods and they manage to stay busy and have been remodeling and expanding our barn. There are days when I have to ask them for help getting dinner prepared and that has been a challenge but that's mostly because of what's in my head about being useful and independent. Men and women often handle this stuff so differently! My husband would like to be able to wrestle or shoot the cancer cells and help me that way but has a very hard time talking about it! He will do anything I ask him to do and always comes to appointments with me when there is likely to be some change to talk about but I like to go to the more routine appts by myself--that independence thing. And I'm grateful to have women friends and daughters to talk with about how I am feeling. I let my husband know when I'm in pain, either physical or emotional, just so he knows I'm having a bad day, but I know he won't be able to have the kind of talk about it that I can have with women. We had each been married before and had grown daughters when we got married and we had the how do we leave our money and possessions talk before we got married and wrote wills very soon after! I was single for a long time before meeting him (over twenty years) and neither of us expected to get married again, and I suspect that gives us a perspective on our marriage that is different than if we had been married for 50 years. I've told him that I hope he will remarry after I die! He's a man who really needs a wife to feel complete! And I don't want him to feel as though he is being somehow unfaithful to me if he falls in love again! I've told all our kids that, too. Living ith this cancer is sure difficult in so many ways. I am tired and just cannot do what I used to do or what I had hoped to do when I retired. I would like to be traveling alot! If I had the money and the energy, I'd go to London every year! With an extra week or two to travel around. We honeymooned in London and York, my third visit to London. My ancestry is mostly British, with some German and a wee bit of French. Please keep us posted about how you are doing....I hope the pain either stops on its own or gets controlled with meds and whatever else it takes. Sending a boatload of friendship across the ATlantic to you!
Greetings Sister, and yesssssss Warrrior I/We know pain can be so difficult to bare, but I pray God will find a way to provide the relief you so need . I had a T-bone accident almost 18 years ago. I had to be cut out of my small sedan car , and I was unconscious for 30 minutes. I had 2 herniated disc, and 2 bulging discs. The pain was unbearable. I had a concussion, and couldn't string a sentence together. I couldn't comprehend anything I was easily able to accomplish before the accident. I was referred to a chiropractor that I thought back then were all quacks. Well my God sent very accomplished chiropractor had me completely pain freeeeeeeeeee in 3-4 months. I had light treatment, tens unit treatment, back bone, and neck adjustments, and manual massage 3 times a week. I sooooooooo miss those massages. My God sent Doctor/ Chiropractor, even gave me a tens unit to take home to keep. To this day I have a chin up bar in my kitchen entry way, that I use to use before my breast cancer diagnoses, and lymph node removal. I do other exercises that strengthens my back, to make sure that horrible pain never ever comes back. Also try to take natural anti-inflammatory's like Bromelaine, Curcumin, Tart cherry extract, Celery seed extract, etc. See if your doctor will give you a prescription to see a chiropractor, who could show you how to use a tens unit at home. You can now purchase a Tens unit online for about $100-$200. Ten's units have come along way, and you can now get a ten's unit vest, which my friend uses, and it got him off the addictive pain killers. I pray this post has helped you and has lifted your spirits Amen XoXoXoX
Just a thought regarding your mom's jewelry. If you have children, you could start passing it to them right away. If not, and there's nobody in your family to give it to, you could have it sold and the money given to your charity of choice. It's just a thought. I'm very sorry to hear that you're still experiencing pain. Is it possible to lay low for a while? My husband refused to do so after his kyphoplasty and was in constant pain until he got sepsis which forced him to bed for a month or two. After that, his back was as good as new!
I also had that vetebroplasty dome in June. Maybe didn't lay low enough, but have been in a lot of pain the past 2 1/2 months. I am seeing a chiropractor now. Twice a week. Hoping it will help.
Thank you for your kind wishes..still in pain but my oncologist said it’s probably referred pain from procedure..she told me to take shortec (morphine) for the pain but I’m reluctant!!.. however I think I might do and get back on my horse..will cheer me up..life’s too short
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One year down - PET scan results
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