It’s a long post of pure venting. So pls forgive me.
I was diagnosed de novo MBC little over 4 years ago, had radiation and am blessed to be on the same systemic therapy (Ibrance+letrozole)
3 years ago I had a spine surgery, however it was too late to prevent spinal cord injury. So I’m in the wheelchair. And have an neuropathy that is painful and negatively affect my balance.
And this is truly unbearable! I completely lost my independence. Can’t do anything so my myself. Depend on my husband and the hired caregiver for dressing, toilet, shower, etc
Can’s go outside without my husband, can’t reach and take care of my garden, especially roses. Need a lot of help to get in/out of the car, so it’s only my husband again.
Missing on a lot of the social things. Most everyone house has stairs to get in.
I’m sorry that I take your time with this post, but I really can’t take it any more. And yes, I’m on Cymbalta and get help by talking to a councilor weekly.
none of it helps to tolerate this situation.
this is not a life. No quality of life. This is worse than cancer.
Thank you for reading this.
wishing all of you all the best!
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Tolife_18
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I’m sorry you are not doing well at the moment. It feels so wrong that you have the cancer under control yet have all the other issues you have to deal with. If you could get the neuropathy pain under control, would it help you to feel better? There are treatments that can help- I have neuropathy in my feet. My oncologist suggested a mild anti epilepsy treatment that blocks the pain. Perhaps tackling one thing at a time may help you cope better. I wish you well and hope things get better for you. Xx
Your situation is really hard to hear and unfortunately there’s not much we can do but listen. It’s good that you are getting assistance but it sucks that you need high level care at your age. You’re a mere spring chicken with the body of a chicken past its prime.
My mother felt a similar way to you as her healthy body was ruled by a deteriorating brain. She had Alzheimer’s and once she became unable to function completely independently she did start to express her feelings about it. She told everyone who would listen that she’d rather be dead than live as she was. She went down hill very quickly but knowing how she felt we were comfortable with taking no steps to extend her life. Living life does imply some participation in activities even if the activities open to us are reduced. Her situation isn’t your situation and I’m not try to conflate your feelings with a desire for a conclusion to your life.
But it’s normal for someone to feel the way you do. Others may not feel the same way as you but that’s not your concern.
Unrelenting pain does become overwhelming and there’s no getting away from that reality. Quality of Life matters. And it’s not wrong to feel that way.
You might feel as though you don’t want to complain to your husband but I know from my experience with my mother that knowing what she was thinking and feeling did help her family. Unfortunately your physical limitations are not going to change but releasing your pent up feelings will help in other ways. I always recommend a course of ugly crying. It’s scientifically proven that it releases harmful chemicals and improves our mental state. I recommended it to someone the other day and she said she’d discovered after crying happy tears that she felt better so maybe both kinds of tears work. I prefer to do it in private because I don’t want to answer questions about it and I usually chose the shower to howl like a wolf at the moon.
It takes courage to spill your guts to anyone but you’ve got courage in spadefuls.
Please never hesitate to share your thoughts and experiences with us. That’s what we’re here for.
Hi Kerry, thank you so much for sharing your mom story with me. It’s really tragic. I’m not familiar with ugly crying, but it may really help to let the feeling out. I’ll look it up.
Kerry loved the pics and the advice. I want to add that I invited a beautiful young mother in a wheel chair to come live with us song with her teen daughter who was friends with my daughter. We learned a lot from them. She was in jer wheel chair from an accident only about 10 years previously at that time. She told me that in her head she was yelling “I broke my fucking back” over and over in her head as she continued to not accept her reality. Seeing someone trapped in her broken body and being so unhappy about it was hard. I tried not to judge and just wished she could get to acceptance like many of us have done… and now we move forward looking for hopeful new treatments or useful old treatments… we try to fill our days seeing friends good stuff and less of the stuff that brings us down. We try to be always looking forward to something… for me it is a first baby grandson coming to the world in feb… being born in Bern Switzerland to be exact!
I hope that T your grandsons can come over regularly. I am sure I will love seeing my grandson when he is tiny… sadly they live so far away. But zoom calls will be nice to see him grow!
I hear you. And you’re right to feel angry and upset with the situation you’re in through no fault of your own. you’ve been dealt a bum hand, you’re in pain and you’ve lost your independence and You’re in a place where you feel you’ve lost most of the things that are meaningful and give purpose to your life bar that hubbie of yours who is doing his best. And I’m there with you - trying to map my way out of pain and despair of having so much health crap to contend with that limits how I manage the stage4 beast. It’s that first step that’s so hard - to find your mojo that’s going to help you get through this and bring some enjoyment back into to your life as otherwise it will mostly feel like it’s just one unending battle of endurance - and why bother. But You’re not done yet- you just need different ways to get joy and excitement and adventure back into your life to enjoy the days you have —one day at a time. If you just had the cancer it might not kill you for years - what would you do? Again -If you had the spinal issues for years what would you do? You don’t sound like you’ve ever been a person who simply accepts her circumstances. You’re just temporarily torn up. Sounds like you need a life coach /really good friends to help you navigate this - same as for veterans - to get your mojo back after such a bashing - to discover different outlets for your mojo to reemerge. It is all about taking back control and sticking a finger up to fate. Exercise of whatever type, even in a wheelchair, preferably socially - is a starting point as it generates natural pain killing endorphins and feel good. Look at the Paralympic sports for ideas. And if it’s not there, start it for others who also need it. Hypnotherapy and meditation to try to manage and redirect the pain elsewhere. Then work out what your newfound outlet to express your mojo will be. It’s a really tough place but You are the phoenix. You. Go. girl.
So sorry and sad to read of all your issues. I can see why you feel like giving up sometimes. The cancer is a rough journey on its own and then you have all the other issues. Pray that things get a bit better for you. I woke up teary this morning. I also have stage 4 and now cancer caused my femour to snap in half. I have had surgery but also feel dependent on my hubby and it seems to go from one thing to the next. Please take care💕🙏. Theresa
Teresa I have been thinking by of you every day! Bones breaking out of no where is a big fear of mine and now you are facing this. I pray that they can keep you comfortable while the bone heals quickly. Do keep us posted!
I am doing ok. My walker is my best friend. Just came from getting tattoos for radiation. I will have 5 rounds next week. I have scans on Thursday and see my surgeon on Friday.
I’m so sorry to hear what you’re having to go through! I wish I had some advice, but as others have said, venting and crying is a start. I hope that things will get better for you and that there will be glimmers of hope and happiness to come. I know writing (thoughts, worries, anything) helps some people - sort of like a pressure valve. And you can always delete it later if you want to!
Thank you for your kind message. I do write the notes on the phone to let it out. I’ve been very strong my entire life (not easy) and usually not a cryer. But it maybe a good way to vent.
dear woman. Oh my word I am so sorry—-just read this and know you are on my heart today. Oh God— this is not life like she said—give her a peace that passes understanding to be able to live….like this. And we are grateful for her life.
We are listening! No one can step into your personal situation, we can only offer some things that help us but we can do so with love and empathy ( plenty of that on this site!)
1. PLEASE get in touch with your therapist and prescribing provider. There are other meds that may work better for you than the Cymbalta. No shame in trying something new and asking for some extra help to get you through this. They may need to see if something new would help with your pain as well.
2. I have used “Wisemen Frankincense and Myrrh” balm available from Amazon with good results for neuropathy.
3. My other saving grace is an amazing acupuncturist. He helps tremendously with pain, neuropathy and anxiety. He has worked with our cancer center patients for years. If you do decide to try acupuncture look for someone well credentialed.
4. Here’s a strange one from a friend who is dealing with loss of independence as you are. She says the hardest part, emotionally as well as physically, is the bathroom. She has had a toilet seat bidet installed and she is thrilled with it. Hers even came with a remote since her arms are affected. She says it’s wonderful and has made a world of difference for her.
I’m so sorry you are having so many issues to deal with. Your gorgeous roses are amazing and I hope they continue to bring some sweetness to your life.
Thank you for a great advice. I’ll look up the balm on the Amazon and will certainly consider your other suggestions as well. My husband still works, so going to the acupuncturist and/physical therapy is difficult, but again will need to find a way.
A big yes on the bidet toilet - the brand I've seen the most is Toto. In Hawaii they are in almost all the hotels because (I'm told) the Japanese tourists insist on them. I have seen both the full branded toilet with remote and a retrofit add-on to an existing toilet. Sorry to go on and on but I've already told my husband that we are getting this when I need it so I have been researching them. Google it - if only for fun and giggles.
They had the one my friend has at Costco. She calls it her “car wash” as it even has a “dry” function She absolutely loves the independence it gives her for such a personal issue!
I just did a search and Kohler makes a competitive product sold at Lowes. The fully automated Toilet by Toto is $5000 but the "add-on" with remote seats are quite a bit less and easier to install.
Toto washlet elongated bidet toilet seat was $349.99 at Costco but I don’t think that one has the remote….that was the first one she got and loved it but then broke her R wrist and couldn’t reach the control panel.
Her husband then got the remote control model for a second bathroom!
the bidet is a great idea! For all of us facing loss of independence… they were so foreign to me but my mom got it installed and her apt smells fresher. She is 90 and no old lady smell anymore. Plus my daughter got one… so it is for all ages. Good suggestion thank you!
I cannot imagine what you are going through. Venting here is safe and also your counselor. Many good suggestions have been made. I wonder if there is a support group that meets in your area for perhaps Paraplegic patients as that is very close to your situation.
Please God wrap your arms around Tolife and let calm and peace flow threw her so that she might feel your love and strength. Wishing the very best for you. Hugs, Hannah
sorry to hear this as I was in a similar state after a failed mastectomy and my lungs being trapped. I bought myself a Rubicon electric scooter . 40 pounds heavy, folds up like a baby stroller and is operated on battery and a joy stick. It’s also airline approved. I love mine and have so much independence especially by myself . I eventually improved to where I only use it for long dostsnces
Tolife, it absolutely takes courage to vent and I’m glad you did so you can receive some words of encouragement from this wonderful group. I’ve been in a wheelchair since March after three months in the hospital for spinal fusion surgery and am in PT learning to walk again hopefully with a walker. I can totally relate to your feelings-I watched my beloved gardens lay in a state of disrepair this summer, couldn’t go swimming or do anything living on a lake brings. Along with the guilt of having my husband do what he can, the overwhelming feeling of being useless is crushing.
I have stage IV MBC and in the words of my new oncologist at City of Hope my cancer has “decimated” my spine. Not knowing where your faith is I will just tell you to keep talking with your counselor but also search God’s word for help, guidance and strength. Maybe reach out to a Christian friend or feel free to message me as I can extend an ear that understands too. We all have to take one day at a time and be grateful every day, even if it is for just one simple thing. Please know you are loved, too. I will continue to pray for you. Your inner strength is still there, and I pray you will find it and peace in dealing with the place you never asked to be in. We’re here for you!
I don't have a lot of advice to give you, but I just wanted to thank you for sharing your story and trusting the community to rally behind you. Thanks to all the ladies that have shared their insight and experiences. What a wonderful community! I am amazed that you have the ability to wish us all well and send us a rose even in your pain and grief. You are a blessing to us all! You will be in my prayers.
Hello Tolife, I am so very sorry you are dealing with everything, pain is a very real problem. I have neuropathy and the pain never stops 24/7. My neuropathy is from tumors that damaged my nerves permanently. I am on opiate therapy and it helps with the worst of it. I am on palliative care for the opiate therapy. Are you on palliative care? (My palliative care team has been great in helping me plus I have a social worker that listens like a therapist and she's wonderful). I take a long acting 30 mg morphine and gabapentin 3 times a day and that prevents the sharp, shooting electrical pains in my left arm and hand. I have difficulty using my arm and hand though nothing like what you deal with for your entire body. I also take short acting morphine 15 mg for break through pain which for me is about 4 times a day. If I want to really use my arm and hand to do anything I can take two of the short acting morphine and then I can do things like for example wrap a gift. Though touching paper is very painful on my left hand. Ugh. Maybe you can ask your oncology team or nurse (if you are not on pain management) for an opiate therapy for your neuropathy. I know constant pain really gets to us and anything to help alleviate at least some of it is worth looking into. I am also on an anti-depressant too miztrazipine and it helps with sleep and some of the pain for me at night. I used to not be able to sleep because of the pain and if I moved or rolled over in my sleep it woke me up. (Also other posters mentioned Cymbalta may not be enough for you). If I miss taking my medications on time I am then sorry because the pain gets high. So I keep the level of meds steady in my body so it's not too difficult to get on top of the break through pain. My pain level is not below a 4-5 (mostly a 5) but it beats the 9-10 levels before opiate therapy. I just wanted to share this with you the neuropathy pain and a way through it. If you can get on top of your pain with the neuropathy it is a small victory. I hope you don't mind my sharing this with you. Hugs 🤗 Alicia
Dear Alicia, I’m so sorry that you’re constantly experiencing the pain and that your left arm/hand function is diminished. It’s so brave of you to share your story.
I’m not taking opioids yet. Very good advice to contact palliative team. Will make the appointment soon.
Hope you’re getting all the help you need and feel better.
I am so sorry that you have all of this to deal with- none of this fair’’. We are on a trip that no one wants. I hope that you can find something that gives you some pleasure. Lou Anne
That's awful for you. I really can't imagine how unbearable it is. Hopefully in time you will manage to adjust and find some happiness again. I'm in the uk and hospices are really helpful in helping with pain management. If you could get help to get the pain under control life might seem a little brighter x
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She absolutely loves the independence it gives her for such a personal issue!
Scans, and a new life in the shape of a fur ball.
Struggling
So afraid I won’t be able to take the faslodex injections anymore. Bad rash ! What then 😢
