It’s come to my attention that I didn’t update everyone on my new little family member, and a feeling that’s running quite deep for me of late.
Firstly. I have gotten myself a new little pup. Her name is Lola. She’s a sweetheart. And a lotta work.
Incase any of you are worried at me getting a puppy when I’m probably not going to live long enough, Carly, my daughter, and I decided long ago, when I got Stevie that if I can’t do it at any time or when I die, of course little Lola is her dog.
Secondly. I wrote a reply earlier about Fulvestrant in ano=nother thread, and realised it was a pretty full on reply, because I am feeling very much like I want to give up all treatment.
Here is a copy and paste of something I wrote on the Piqray FB site.
“I need to ask something that might be hard for some of you to hear. It’s about the end. The end of all treatment. So if you don’t want to think about this please don’t read on.
I’ve been thinking about giving up treatment after Piqray. I don’t know who else to talk to you about this.
I’ve talked to my oncologist , he said we could have a break from Alpelesib, but stay on Fulvestrant see how we go. He said I don’t have to make a decision not to go on any more trials. Or not to go on Capecitabine. I’m not sure why I don’t want to go any further. I just feel like I’ve had so much trouble with my hands my mouth my taste.. and I’m sick of wondering at each monthly meeting with the oncologist. Will this be the last? It doesn’t feel like quality of life to me any more. I’m not depressed. I’m loving my life. I could go like this forever. But I know that there’s going to come a time when this treatment is going to stop working.
Do any of you feel like this?
I really don’t want anyone trying to tell me that that I need to get a therapist or anything like that. I’ve done a lot of therapy in my life and I know what depression feels like. I am not depressed.
I know the feeling I’m having now is just having to deal with what really truly is my life in the now.”
END FB post.
I know this post sounds crazy and huge, but I think about THE END a lot. It’s so constant in my mind I feel like I must just want it. And yet why have I not gone off treatment already? This is the question I ask myself whenever I use my hands. (ALWAYS) and my raw fingertips scrape a dry towel and hurt like crazy, or I put my hand in a bag or pu my jeans up and the nails pul back and peel and come off. And the loss of taste. Everything I eat tastes strange. I can’t even begin to explain how it is different. It just is.
And there are so many other none cancer related things wrongs either my body that I never mention here.
O winge winge winge. But I just can’t stand the thought of yet another treatment with yet another list of side effects.
So sorry to bang on. But really. I don’t think my body wants to be here. It’s just being kept alive but all these wonderful crazy medications. Anyway. I’ll stop now.
Love to all of you
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Timtam56
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TimTam, first congratulations on getting a new friend. I took over looking after my parents pets when they died and I found it helped me get over the loss of my parents. Their pets were important to them and their presence after the funerals were invaluable to me.
As for your feeling that your time is coming to an end you are expressing something that I truly believe. Each of us knows when we’ve had enough, done enough or our bodies can do no more. While you haven’t made that call yet, you are pondering it. And why not? It’s an important decision that right now you have autonomy over.
Some people such as the sister of a friend who was dying with a very aggressive breast cancer never came to a place where she contemplated death. She had private care and her oncologist was still planning treatment up until the day she died. Her siblings thought that he was humouring their sister because she remained hopeful that the next drug would be the one because the doctor never mentioned the T word. Later he told her family that he was surprised that she deteriorated so quickly and he didn’t expect her death so quickly which was why he had already planned her next treatment.
Others have had an end to treatment forced upon them because their body can take no more treatment. You probably remember Connie Johnson who was diagnosed with her third primary cancer when she was 33. When she was 11 she had bone cancer and when she was 22 she had a gynaecological cancer. At 40 after her liver indicated it couldn’t go on metabolising the drugs her doctor explained to her that she needed to stop treatment. I’m sure she didn’t want that to happen but she accepted the reality of the situation.
BestBird stopped treatment when she decided she had had enough after 12 years. And there’s been others who have told us that they were stopping treatment for reasons of their own.
Others might not understand how you feel and that’s okay because it’s an individual choice. On another site an elderly man came to tell us that his wife had torn out all her iv tubings in hospital and doctors told him there was nothing more they could do. His question was ‘what should I do?’ Our answer was that he should take her home to die in her own home surrounded by the people and things she loved. That was what the tearing out of the tubes meant to those of us who might be moved to do something similar in future but her husband was desperate to keep her alive. She didn’t want that. He did take her home and he came back to tell us how happy she was .
Honestly if you really were ready to stop treatment now I think you’d feel definite about it. You’re contemplating it because you’re constantly reminded of the side effects. But at the back of your mind you still have some hope. My uncle was dying of prostate cancer and he was told by his doctor that he had about 8 weeks left. Then that same night the doctor came in to tell us a different test result actually changed eight weeks to two weeks. He was moved to a larger room with extra beds so his family could be with him 24/7. After a few days he decided he’d had enough and he asked for sedation until he died. He was ready to go and doctors facilitated it by stopping all medications for his diabetes etc. The extra days gave his family time to come to terms with his imminent death and he was at peace with his decision.
Now he could have had assisted dying but I don’t think he would have done because he went from having 12 months to two months to two weeks in quick succession.
Time isn’t what determines when we feel ready to go. Quality of life is important and it can’t be overstated. QOL of life is something that we decide for ourselves. Some people appear to have little QOL yet that’s enough for them. Others want much more. Doctors keep telling us that there’s so many options ahead and I’ve heard this a lot lately as I have a new breast lump. Depending upon the next six months I may be looking for a new treatment myself. I won’t be happy about it but I’ve not had thoughts of finishing up with treatment. FOMO is real but if my next treatment has harsh side effects or if it doesn’t work the fear of missing out on life could easily be replaced by the fact that mere existence isn’t enough. We need more than life itself to actually want to be here.
Right now, you’re considering your options but I think what your mind is doing is trying to figure out what the end will look like for you. My mother had Alzheimer’s for many years. It was a rarer form known as PCA and she coped well until my father died and she declined very quickly after that. As she lost basic functions such as the ability to get to the bathroom on her own, or to help out with getting meals or any of the myriad of things we all take for granted she started to tell us she’d rather be dead than to live like she was. She was pretty much unable to get anywhere unaided so she had no autonomy at all. Towards the end it was clear that she didn’t have long and I was able to reassure her that it would soon be over. And it was. Because we’d talked about it my brother and his family and I were in agreement although mum’s sister wasn’t. Her brothers made enquiries with my brother as my aunt thought mum was not getting the right treatment but mum didn’t want to be placed in a nursing home and I could look after her. Mum died in her own bed with her elderly dog leaning against her leg. It was so peaceful that when I shut the bedroom door on him and told him it was time for bed, he looked at the door and back at me and then the door again. Bed is in there, why did you shut the door? Her little dog outlived her by nearly three years and died at the age of 18. He never loved me as much as he loved mum but he knew he could trust me to look after him. He actually showed all the signs of dementia when he died but I had already had experience of that so looking after him wasn’t a chore.
Sorry that’s a bit off topic but all I’m saying is that for your family’s peace of mind you should think about and talk about what your end of life will look like. You’ve done that with Lola’s future already planned but if you become incapacitated and unable to speak which was what happened to mum, it’s easier to decide what to do if you’ve already had frank discussions about it with your family. In mum’s case she’d gradually stopped eating and she was reluctant to drink the Sustagen I offered her frequently through the day. In the end, my sister-in-law suggested it had become pointless and mum didn’t want it. Mum was there when we discussed it and when I agreed that I’d stop offering her anything because she was clearly rejecting it entirely now, mum smiled.
My father died in hospital but mum died at home. They both got what they wanted but that was made possible because we knew what they wanted.
Whatever and whenever you decide what your end of life looks like I hope it all goes well for you, and of course, Lola.
This is a beautiful and spot on (I love the story about the old man taking his wife home after advice from your group, and that that seeemd to be what his wife really most wanted). This is a timely discussion. Right now with current treatment I feel really pretty good and without pain. But in the month while I was waiting to find out what my new treatment plan was going to be, I started to feel really tired and crappy, and pains were returning. I was also having negative thoughts because it's my liver that's the biggest problem now and that's scary because I know it can go downhill fast.
Despite feeling better, I recently joined this 6 week special webinar called the Grim Series, offered by Project Life MBC. It was such a good series because with this new fear of death that I had had I felt the need to get clearer about what exactly I need to think about, and how I might prepare in advance for death. And it felt good to confront these things now while I can, and before I might find myself scrambling with limited time.
I wish I could share with others here all the things we covered. Basics like POA's, Wills etc, but also your end of life wishes, exploring what options there are, like, where you would like to spend your last days (options vary everywhere), who will care for you, how you will spend them, planning a funeral for yourself, writing letters to people you love, being clear about all your possessions after your death, and so many other things. It really was helpful because generally people shy away from discussing these things openly but it ultimately makes it so much easier if we do discuss our end of life.
In fact, case in point, my husband and I were recently discussing what we might do the next time our rental expires. We are sure we will be offered a chance to stay longer and we love the place but it is 2 flights of stairs to get inside (and a walk to the house). I've already had painful hip periods where the thought of the stairs made me reduce how many times I've left the apartment, and I worry about eventually becoming housebound. Certainly my husband couldn't carry me up and down if it came to that. I said to him "You know, there's just as much chance all could go to sh!t next year if I go downhill bad, so I feel like we should get a place with an elevator". Oi! He did NOT want to hear that ... but it is reality. So now I know something else I've got to get to work on! .... Preparing my husband
aren’t we also lucky to have each other here? I was so scared to put this post up because I thought some people might be really against what I wanted to talk about. I’ve been feeling like talking to some of you about this for many months, but I haven’t wanted to broach the subject. I’m so glad I did because there might be some people here who also want to consider what we’re all talking about. They’re also the people who don’t want to talk about it and I would say that if I was one of those people you can just read it and move on. So I think response was just so beautiful. And yours. Thank you dear women. Very kind and I feel less alone today than I did yesterday.
I think it’s really sensible to think about things like this when you’ve got flights of stairs to consider. And there are other things. My daughter has been honest enough to tell me that she’s worried about the amount of furniture and belongings that I have. So that gave me the impact to start selling a few things that she didn’t want anyway. Where she lives (with her father who is dying….. also), is very very small and they have their own furniture. She’s going to have to take out a storage unit to put all my stuff have to get it out of here. So there are logistics that we have to think about along the way.
But yes, my thoughts around letting my body go instead of holding on so tight to life when it seems to be fighting hard lately. As I said with so many things going wrong in my I’m getting fed up with all the medication that I have to sort out I have to do a lot of self administration with some of the team that I have because I live alone. So, that in itself is hard because I don’t want to pressure my daughter any more than she has to deal with with her father and I want to be able to be independent or pretty well not at all. That’s my bottom line.
Dearest Kerry. Thank you so much for your beautiful response. How beautiful.. how delicate and how kind you are with your words. I would like to copy and paste them and show some of them to my immediate family. If you don’t mind of course.
Yes, I have talked to my at length about dying, and when I was first diagnosed, I was told that I was dying way back nearly 7 years ago. I remember going into the hospital after being diagnosed and the doctor had told me that I was dying that there would be no hope. This was before I saw the oncologists but they have all been telling me I’m dying anyway. Which of course my body wants to do and I know that I am being kept alive by these treatments that they give us which are wonderful and which we are all grateful for. But yes, I went into the hospital a week after I’ve been diagnosed and I remember the look on the Nurse’s face when I told her what I had. And she said ”I’m so sorry dear” and put her hand on my leg. I have been preparing for seven years.
I guess now you’re correct in saying that I’m weighing all this stuff up. And I have been making plans. And I know that there are some people here who won’t like to hear this but I have already spoken to the voluntary Assist dying people about what I might be able to put in place. I’m not sure yet whether I’ll use it.
But I just need to say thank you once again to you for your beautiful long response so very out and I’m very thankful that I have people like you to talk to.
Just wanting to add here that the voluntary assist came up in discussion during the series I joined. Someone had gone through all the process ready for that option, though she did say she might not end up choosing it when the time actually comes. I have wondered about that if I end up being in a lot of pain. Which has occurred already, to a certain degree, at various times when my treatments have stopped working, but I know the pain I had then would be nothing to like how it can get at the end . The potential pain is my biggest fear of end of life
Hear you, understand you and just get it. I got parents another dog last Saturday. Am I responsible? Yes. Dad is 100+, Mom has dementia. I travel back and forth every month, half and half to take care of them and then me. It is tough, but gives me strength. When the go, I'll have no regrets. Just hope I last. We'll play it by ear. Praying, not giving in and not giving up until it's obvious. How will I handle it? Haven't a clue. Just enjoying life on a daily basis and living. Agree with Kerry too. Blessings, hugs and hope.
Timtam, in case you don't notice my reply to Kerry above, I agree with her. You might not be depressed per se, but obviously your mind is grappling with the thought of knowing when enough is truly enough. It's not easy. I've found with each progressive time that I have had to change treatments, especially because my liver is the threat at this point, in the last year in particular, that I've got progressively more negative during the treatment transitions.
The fact that I'm suddenly feeling so much better right now has come as a bit of a shock to me, in big contrast to the fact that I was feeling quite negative before I started this treatment. Our emotions are such a seesaw, depending on what we are going through at a given time.
Anyway, not to lose track here, but my point is that it can still be helpful to talk to the right person about things we are struggling with, or confounded by, even if we aren't depressed. I like to think of it as" talking aloud to myself", it gives me clarity to bounce off those who understand the thoughts we have to grappple with as MBC'ers who are having a tough time with treatments. One of the things that came up with the series about end-of-life matters that I just completed is that there are 'death doulas'. People to help us think about whatever related issues we need to deal with or plan for. It might be something to look into. Actually there are even some on Instagram apparently! Tomorrow I can find the links to them and share them with you. They might be helpful for what you're going through right now
Thank you so much 13Plus. I will go immediately to Instagram and have a look for the death Doula thing that you’re talking about.. but just to let you I already have a doula. She even snapped interaction when Stevie died and came around and helped me prepare Stevie’s body for her little grave that we dug outside my window. a beautiful young girl and I can talk to her about anything. I’ve started paying her for a few of the things that we do, but we’ve also become friends and I know that she’ll be there for Carly and my family and friends when I die.
I am aware of the fact that sometimes you can go from one treatment to you’re feeling like shit, but the next treatment can surprise you and make you feel better. So terribly aware of all of these things. I guess I would say that at the moment I’m in a stage. Even my oncologist said to me that last month when I had my scans and I told him what I was thinking about., which was giving up, he said “today is not the day”. But that day will certainly come.
Your interactions with the lovely sounding young woman sound perfect. You're a step (or two!) ahead of me there. I need to look into this for myself at some point.
As for the rest, I hear you. LOL, and there I was last week saying to you how great I was feeling, no pain at all since starting my new treatment 2 month ago. Then what happened?! Maybe it was the strong dog that jumped hard at my back without warning while I was kneeling? (last Thursday). Anyway - went into one of my old muscle pain flares the following day, and been moving gingerly ever since then. Oi! So of course my mood plummeted along with the return of pain. Makes it hard to focus and get anything done, and to remain optimistic during these sucky periods.
It's a great conversation that you started here. Koala hug to you
I've been thinking of you the last few days and was wondering if you had a new fur baby.
I'm happy that you have but I'm sorry that your feeling how you are...although I fully understand and do not mean to condescend upon your state of mind in anyway.
From the day of our diagnosis everything we live from that time on is related to cancer in some way....even on a good day...the fact that we stop to consider our state at all is because of the cancer....we are forever changed.
My very best friend who I've know since we were teens had the experience of seeing her mother suffer and die very young (in her early 40s) from breast cancer.
She told me how she would dread the holidays as there was always a pressure to make everything perfect and to not upset the mother as this might be the last Christmas...birthday...etc.
Ultimately the day would end in tears and guilt. When I was diagnosed I remembered this perspective from the otherside so to say...and made up my mind to make everything as normal as possible for those around me...I've been very open so everyone knew the details from the start and there's no underground whispering...
"Normal" in reality is something we will never be...so may be its better to think of ourselves as being extraordinary!!!
Thinking of you and hoping that you reach an excepting state of being ....or unbeing that works for you.
How lovely to hear from you. remember when my first “Possible last Christmas” happened and my poor daughter Carly cried and cried. My partner Matt was still alive then and it was his last Christmas. But we didn’t know it then. It was such a sad time and it was a time for me to bring things to the floor and make sure that Carly knew that she could always talk to me truthfully about her sadness and fear of last things with me. In that first year or two, we did so many “last things”. And now it’s just a matter of talking about it bluntly because all of us have become so weary. And that’s another thing that I find. A whole lot of my friends and family have become a little bit complacent because I look so good and well. So I talk to them honestly about how that feels for me. It’s a “thing” I’ve been told by my Palliative Therapist. I can’t remember what it’s called and neither could see the other day when we spoke. But she said a lot of her patience feel the same. They outlive their diagnosis and they feel guilty and they have others around them who have softened in their fear of losing them., and that becomes a thing.
Anyway, I’m getting a little bit tired now so I might have to have a rest from replying to all your beautiful replies. Because that’s another thing I am getting so tired with all the medication I’m on for pain. It does my head in how many hours a day I sleep. I feel like I’m living life like a dog. that I sleep so much, or if I don’t get to sleep that much I certainly want to.
So in that respect, I know that my life is not quality of life any more. I’m nothing like the vibrant person I used to be. She’s long gone.
Hi Timtam56, Congratulations on your new baby!! I have three pups myself and I call them "my little people". Many days have come and gone when they were the only reason I managed on forward. There is no greater, more selfless or honorable love than that of a dog. They are beautiful souls. I hope you have many years to enjoy your precious new baby!
I read your post and then re-read it because I want to be sure to address your question correctly. Yes, I have felt like you are feeling about being done. I was there two years ago and between the cancer and the side effects of the assorted medications, I just couldn't bare to think about going on. I felt like my body was dying at a pretty good clip at that point. I did not need to see a therapist (I've been in therapy for 5 years now and still am), I just was at a point where the quality of my life was so hard, that I could not bare to even think of going on. I (here on Thanksgiving night no less) am so grateful that I decided to give Capecitabine a try. Honestly, it's been the easiest of all the drugs so far, and I think I've tried most at this point. It went gangbusters on my cancer right out of the gate. Markers plummeted immediately, scans looking fabulous. The first two or three weeks I was nauseated.....and then the anti-nausea drugs caused constipation and I thought, "oh God, no more!" My doctor calmed me down and asked me to be patient just a little bit longer and I was......and the nausea disappeared, no constipation, no diarrhea, no mouth sores, and food tasted so good again and I was hungry once again after 3 years of absolute misery from one thing or another....and the only side effect I had was muscle and bone pain, and mild hand and foot, but the bone pain got beyond severe. And my doctor told me to be patient again and we tried different medications to help with the pain. It is two years now and I have had stellar success with Cape, still going strong, clean scans, markers at 0 still, and Gabapentin has stopped all the side effects of pain. All of the other protocols failed very quickly and I was mentally and physically tired.....and then this, a Godsend.
The thing is, each of us is on our own unique journey. Because death is a huge taboo in today's societies and because our loved ones love us so very much, it's hard for them to have meaningful and helpful discussions with us because it hurts their hearts and because it's scary. Everyone dies and the subject of death is so much easier when it can be approached with respect, honor and honest curiosity with a genuine want to be of help for us on our journeys. I have pushed and pushed and pushed for the subject to be a normal every day kind of conversation with my partner and our two daughters. At first my partner would just balk at the notion of talking about how I was feeling and the ultimate impending ending. Because I refused to give up on talking things out, he finally got used to it and has become a great listener. My daughters would sit and cry. After years of gently pushing it forward, it's a normal and o.k. conversation in my home. Ultimately, our bodies are truly our God given gift in life and we have the divine right to live the best life that we choose and we have the divine right to acknowledge and articulate how we are feeling as our time nears. We have a divine right to be heard, understood with compassion and to be honored in our wishes about our own bodies.
All that being said, I really hope that you give Cape a try. You never know.....I honestly felt my time was done two years ago.....I was just so tired and wanted to throw my arms up to the sky and just let go. I am so very glad I didn't because in the last twelve months in particular, I have felt physically and mentally better than I have in over 8 years. I am hoping and praying that if you give it a try, you will have a similar experience and find yourself with a beautiful long road of feeling whole, able and well again. This is such a hard disease to live with. I don't think most people understand the underpinnings of metastatic breast cancer. We look fine, but we are not in many cases. You are not alone in how you are feeling. I think it's quite normal, a person can only take so much..... I do wish you well, and I hope you find a way to be o.k. in your journey, wherever it takes you. God bless.
Firstly, I love that idea of little people . Secondly, I’m gonna take my time looking at the rest of your post and I will respond at some stage.. I’m absolutely blown away by the amount of responses I’ve had to this post and I have to take it slowly because it’s a lot of responding that I have to do isn’t it?.
Hi Timtam-I hope you are doing well. I very rarely post on this site, but was so touched by your story that I felt I wanted to share. I have been stage IV for 7+ years and although it seems everyone kept telling me how great I looked and from a medical standpoint was really “doing well”, slowly I started to hunger for how I used to feel and realized that over time I started accepting more and more pain and more and more unpleasant side effects as normal. I also realized this was not like when I was diagnosed the first time around. It was no picnic then either, but I knew it was just temporary and then I would be good again. But this was different. I would never “be good again”. And after so long on treatment every side effects just started taking a larger a larger toll on my body. I started getting really sad and talked frequently with my oncologist about stopping everything. She and all my nurses kept encouraging me and when I broke down in her office about the prospect of losing all my hair again, for the 3rd time, it all is a sudden became so clear to me that this REALLY was MY journey and regardless of how much I liked and respected my medical team they would NEVER be able to know how it felt in my shoes.
Sorry for being so long winded, but it seems like that was the moment that changed everything for me. To make this incredibly long story as short as possible, that was when I asked her for a break….from everything! We agreed on a two month break and then we would start the fulvestrant alone for 1-2 months and then start adding Ibrance back in starting with the lowest dose and working it back up slowly. I felt really terrible for the first couple of weeks, detoxing, I guess, and then, not to be overly dramatic, but it seemed like a shade had been lifted and I started feeling better EVERY day! By the time came to go back, I was feeling amazing, almost like I never had cancer. But, I held up my end of the bargain and had my injections 2 months in a row. When I went back the 3rd month I said, “no thank you, tell me about hospice please.” Sooooo, that is where I am now. Feeling really good and welcoming hospice into my home. I could go on….but I am sure that is enough of my story. If I did continue, chapter 2 would be called “Now what”?? I have been on hospice for two months and knew right away that I didn’t really fit and was not.sick enough for hospice, LOL. You are reevaluated every 3 months and if you do not show enough “decline” (I cannot tell you how much I hate that word or the fact that they are so comfortable using it with their patients!!!) anyhow without showing enough decline I will eventually be “graduated “ from hospice?? I guess I will cross that bridge when I get to it. I have no idea how long I will continue to feel this good, but finally I am not complaining. My prayers are with you! I believe every journey is different. I think you just really need to trust yourself ❤️
This response really hit home with me. I had a break over the summer from IV chemo and I felt so free and so much better. I am almost ready to say "no more" because these side effects are awful - and the treatments are not good for your liver yet my cancer is there...it makes no sense. My sister died from breast cancer in 2017. She fought so hard to stay alive for her 2 boys but the cancer was in her brain and she was getting crazier every day. It was finally my pleas to the doctors that convinced her/them to stop her treatments so we could slow down the crazy and try to have some peace at the end. I think about that every day and I don't want my husband to have to deal with this. It is true it is such a personal decision and I love the caring and detailed responses everyone is giving TimTam. This IS a WONDERFUL community.
Somehow amidst all of the responses I missed your reply to me. I’m so sorry. How terrible of me? But there are a lot of responses here, and responses to responses to get through.
Firstly please never apologize for a long winded response. It was such a beautiful response to read. And so rich and deeply moving because, oh my god, you are going through so much. I don’t even know where to start. It sounds a little bit like a nightmare to me and yet I’m glad to hear that you’re doing well. But how do we tell people how it feels to expect to be on your last legs all the time, for years and years it goes on and on? I don’t mention the word here normally. It feels so incredibly delicate to say the word ‘dying’, but I’m gonna say it here to you, for me, I use the word ‘dying’ a lot. Because they told me I was dying when I first started this journey. And my head honcho oncologist has never held back in telling me that she can’t save me. She can only make me feel better while I’m here and slow down my process. So your journey sounds so very much like all the stuff that I’m going through, and some of the stuff that I’m already in.
So… here in Australia, we don’t call it Hospice. Hospice is a place that we go to die. Like a hospital for palliative care. But we call hospice palliative care. And I’m already using the services of palliative care …. since the time that I came off Ibrance last November.
Anyway, I’d better stop now. You are so incredible giving all this info, and I’m so thankful for all of you here.
I am so happy you got a new little puppy. I truly believe that caring for pets can increase our positivity, resolve, strength and happiness as now you have someone who relies on you every day for their care. I don't think it is unusual to think about the end of treatment and the final end. I agree with Kerryd22 that quality of life is important and that each of us knows when we have had enough of new treatments, side effects, etc. that may extend our life but hinder the quality we experience. You need to do what is best for you and your family. I think Kerry's post sums up what many of us feel and I love that she shared specific stories. Please know that you are in my thoughts and prayers. Enjoy your time with Lola and your family.
And that's what I will do love2golfwell. I will take into account my family, and I will take into account my own self. I have fought so hard for so long. But my poor body is so tired.
Yes, little Lola gives me so much will to live, but I also know that my daughter adores her and they will both give each other so much whne I am gone.
So happy about your puppy news - I am trying to get my hubby to get a dog for his mental health when I am gone butt we are in the desert with coyotes, bobcats, and hawks to worry about so....I think it will be better for him but the logistics are a tad overwhelming right now.
Thank you also for your response to my whining about Enhertu. I feel like such an old timer on here sometimes and it is always nice to hear from you.
These ladies have given you so many wonderful responses.
Having a pup is such hard work you know. But it’s worth every little hug I get. I’ll move from my iPad to my computer later and try and sort this photo business out and put one up. Because Lola is a black version of what Stevie was. And hopefully a little smaller. Although she’s growing very fast and it’s scaring me that she’s so healthy and heavy. But she is an absolute delight.
Haven’t they given me some gorgeous responses? I’m overwhelmed actually almost to tears right now. No, I am crying, fully crying. And at your beautiful of coyotes, bobcats, and hawks in the desert. Such a far cry away from where I am living in the heart of the in downtown Melbourne.
I have felt very much alone on this site lately because a few of the people that I really had strong connection with heavy either died or left the site. I used to really love the honesty that we had. And I have felt a little bit like an outsider here because of my thoughts of giving up. So all of these responses are like little gems falling into my hands and I’m gonna carry them around with me for the rest of the day.
I think pondering is a wonderful thing to do when you’re unsure. And I know I have been unsure. But sometimes we need to really think these things through to get clarity. I think clarity is one of the greatest gifts in life. I haven’t been feeling clear at all about anything.
Hi Timtam,I so understand where you are. I feel the same way. I am so tired and no one truly understands, because I don't look sick or complain. My feelings about life with cancer needs to come out, but folks don't want to hear about it and they don't need to be burdened with my health problems. It's a downer. Discontinuing treatment is not suicide . I am a Christian and God won't take anyone until He is ready for you. Your post made me realize that my thoughts and feelings are heading in the same direction as yours. We are tired. Prayers for all of us as we deal with our realities. Having these feelings may be the Lord's way of preparing us. Much love to all of you. Blessings, Hannah
Lilywallytootsie. What a beautiful username. I was called Lily by my late partner. That was his loving name for me. And we’ll put all those together!!! Wow.
I’m so glad I put this post up. I’m so glad it’s given us all rise to be able to talk to each other about how we feel. I so hope that no one here takes offence and I am so thankful that maybe I can be here for you if you ever want to talk about your feelings. Because honestly, my friends are sick of hearing me banging on about this all the time. I really have been talking about dying for seven years as well. Because I’ve been living with Cancer, but we’re also dying with Cancer aren’t we? If we’re not with words.
Anyway if anyone here wants to private message me and talk about this more deeply I’m certainly willing to be a part of that. Because I’ve been really needing someone to talk about some of your thoughts here have made me feel much more like I have community around my feelings.
Whoever it was that said it above here, about writing letter letters, to loved ones etc., has really made me think about some of the letters I do want to write. I had started writing a book of letters to all the people that I love, about five years ago. And I’ve got some lovely thoughts written there but I haven’t recent ones so I might go back to that.
Lily is our baby (dog). Wally and Tootsie are the dogs before Lily. We are definitely dog people. I would love to chat with you after the holidays. Awesome once told me how to private message. Maybe I can figure it out again. Thank you so much for bringing this topic up. Hugs Hannah
hi Tim tam- I am so happy to talk to you about this! Because I went off treatment on Sept 24th .., my Dr wanted me off until we explored my low heart rate with 2 week holter monitor, visits to specialists and finally waiting for a cancelation for a procedure to fix it. I thought is was great! TIL it wasn’t… things turned south quick… now my belly is so full of fluid I can’t eat or feel comfortable… now I can’t wait to get back on chemo… onc says the chemo is like salt and pepper all over my belly which has gummed up my lymph nodes… now they won’t drain… but my heart got fixed a few days ago with a zap! Next up in 2 days I go in for a Tap to get all this fluid off. I can’t wait! Then I am to start Enhertu… and hoping to feel much better. I hear what you are saying but I think you should try the capecitabine as it is easy to take orally and some people tolerate it well withough HFS..insist on starting with a manageable dose and see how you go. I liked it except for HFS.. your taste buds should go back to normal if you aren’t on a huge high dose you should have plenty of energy. I was on it for 18 months and sad to see it go because that meant the beginning of IVs… but then I started on Doxil and came to like thst one becuse it was just once month and not much side effects( prob kept me on a low dose… but the point is the time period that I have felt the worse has been this 9 weeks off from chemo… and now I am anxious to get going to get back onto chemo and my dr is telling me to be patient as the insurance company drags their feet to pay for $$ new therapies so may be a few more weeks… I’m sure the time will come for all of us when we say enough but I think while you still have a relatively easy oral treatment… you should give it a whirl! Thst just me and others may have different perspectives…I would miss reading your comments here too.
Dearest Betty. OMG!. You are being put through the ringer aren't you?
I hear you. But it's all up to each of us as to what it's worth to stay here on this planet, or what it means to us to leave. Isn't it?????? And I am finding it hard. I have no partner. My daughter has me going through this, AND her father is as sick as anything. I don't know how he is still alive. He had cancer in the brain, then they operated on him and made a mistake. It lsft him with the worst seizures anyone can possibly have with the hightest seizure meds he can take. So he cannot be operated on for anything and he has so many other problems with his health. So she has so muc to worry about and both of us going through huge stuff.
Cut to..... I am not living a full life anymore. I know none of them will agree, but my friends all see me as differrent, I'm not the person I used to be, and since Covid, And the environment falling into such disarray...... not to even mention politics and war..... I am tired. Over it.
And I don't feel like putting my body through anymore. I also have so many other health issues besides MBC, and some of them brought on by the different meds..... REALLY????
Tim Tam- even just in the day or so since I wrote you last things got worse for me… I got admitted to the hospital and had 6 litre of fluid pulled off my belly( first time) I was horrified by this.. but felt so well… for half a day.. now filling again. Dr has warned I can’t have fluid taken off for at least a week! So I anticipate being very uncomfortable… can you believe that this week I was still lap swimming my 400 yds even the night before my heart ablation… so it is hard to think about being so suddenly really sick… but of course as I have had no chemo for months! I need to restart chemo asap… I’m still hopeful but while I was writhing in discomfort with all the fluid on board, I did think some dark thoughts… but I am hopeful to try Enhertu and see if I can turn this train around…I know I have to give up going to San Antonio breast conference next week cuz I am so unwell… but I still can’t imagine not going to Nz in jan… hoping to be discharged home tomorrow!
Timtam, Please don;t give up you got a puppy to take care of. As far as Capecitabine i could not take it because ny feet and hands were swollen and no appetite, But everyone is different.
Like I said everyone is different Capecitabine might be different for you, And you can always be taken off this medicine if it is to rough for you, I did I couldn't. LOL to you and Lola
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