Dear All,
My mental health is so poor at the moment. I can't see any way forward and am thinking of stopping chemo. I can just see a future of uncertainty, chemo , covid dodging with the same outcome as if I stopped treatment now. Thh if I was brave I would end it now. The hospital, GP and husband know how I am feeling.
Has anyone Stopped chemo because of mental health rather than physical health? Has anyone found a way forward from being this low.
I hear you. I’m facing similar challenges myself but not exactly the same. The current treatment isn’t working and there isn’t anything else at present for me. Stopping treatment is not a failure. Stopping treatment actually enables you to feel better and not be at the mercy of side effects. It means you can then prioritise what is important in life and to live your time with more quality . It isn’t treatment at all costs hun. Quality of life has to matter in all of this. Mental health side effects are just as important as physical side effects. We wouldn’t think twice about stopping treatment due to physical issues such as neuropathy, anaemia, neutropenia , osteoporosis etc .. Mental health is so important as it affects your whole body.
Talk it through with your oncologist though. Maybe you need a treatment break and to have a mental health assessment. Perhaps if the low mood was treated first you might feel more confident to make a decision. ❤️Let us know how you get on. I’m sending you lots of love xxx
Are you getting any treatment? My worry is that even if I stop I will still be paralyzed in fear which is stopping me doing anything.
Yes I know that feeling. You’re damned if you do and damned if you don’t stop. I think that what Cathryn said is very important.. you’re not on your own in all of this. In fact, I rang them today because I needed to talk to someone. Keep talking about it and use the support that’s around. It really does help hun. Xx
Hello Sassy196,
Thank you very much for your post and I am sorry to hear how you are feeling at the moment. I am so pleased to hear that you have talked about what you are experiencing right now with your hospital, GP and your husband. Please know that we are here to support you and we are at the end of the phone if you would like to talk things through. You can contact our support services by calling 0800 008 7054 or 07503 682 311. Our support service is available Monday – Friday 10am – 5pm. Alternatively, if you would like us to call you, please send us a private message on the forum and we can arrange this.
Please know that you are not alone and we are here if you would like to talk. We can provide information about resources that we have shared with others who are experiencing similar feelings. If it would be helpful, we can also provide you with information about the support groups that we have at Ovacome, which provide another supportive space to share thoughts and feelings with others. We can also look into local sources of support in your local area if that is something that you would like to know more about.
Take care,
Cathryn
Ovacome Support Services
Thankyou
I don’t know what the answer is SASSY196 but this is your call, no one would think any the less of you if you want to stop either for a short time or forever… I think that quality of life has to be as important as survival. Sending you a big hug 🤗
Sassy196 - Yes, I stopped chemo at the end of Oct. after finishing 4th line.Everyone is different and there is no right or wrong decision. I am just sharing how I approached my decision.
-don't underestimate the side effects of chemo, steroids and other medications, they do impact your thinking. I take an antidepressant and that helps.
-take a month to define what gives YOU quality of life
- write it out so you have clarity about what you want - and need
-talk with your trusted advisors about what you are feeling
-be gentle with yourself, it is ok to be scared
I was so tired, the side effects of a year of continuous chemo and other medications left me mentally & physically drained. I decided (with many frank discussions with my doctor) to have a holiday from chemo. I have focused fully and consciously on quality of life. I found in Nov-to present I am not experiencing as much chemo fog and side effects of the steroid (which really did a number on my mind) I see the world with a lot more clarity & joy in the midst of this oc roller coaster ride.
I was apprehensive about taking a break but I feel (mentally)so much like my old self. It has been a wonderful mental reset. I see the oncologist in March, have done 4 lines in 5yrs. (I have stage IVb). After a 4month break I may not have the option for more chemo or if so I will be able to make a clear decision based on my experience so far. I am so grateful for clarity of mind.
I am scared sometimes, happy, calm most but not overwhelmed. I am living 
Valerie
So you have focused on quality of life? I am in a sort of paralysed state, unable to enjoy anything. How did you overcome fear? I am on 3rd chemo in just over 2 years delivered in about 30 sessions with last break of 3 months.
I do both sassy, take the chemo and then stop the treatments. At my last gem Cis chemo in the September I was overwhelmed with exhaustion and tears. I was mentally unable to do more.
Making the holiday plan was wonderful. I knew in November that things were not going well for me snd more treatment was needed. I went to bed thinking about cancer and my first thought in the morning was how do I feel, is this it? I pushed through by taking the day and the week. Planning in short amounts of time. I tried to think about what I could do for my family and friends and make fun memories . And though in my head I was scared, I was able to do things as I was not taking chemo.
You’ve had such a lot of chemo in the last few years. Barely any breathing space. We all talk about the effect chemo has on our bodies - the hair loss, mouth sores, etc it doesn’t just make us sick, it messes up our minds too.
Why don’t you ask your husband if there was one place he’d like to visit? A type of food he’d love to eat but hadn’t been able to? Then why not plan a day when you do? Even if it’s weeks away. When I did things my fears reduced, maybe yours can too?
I’m on weekly taxol now. It’s not at all nice. I am scared. Please don’t think I’ve got it all figured out and have overcome the fear. It’s more that I refuse to stay in that space all the time. And for me, making plans, doing fun stuff really does distract me.
Rosie x
Hi, I'm also on weekly Taxol .I had 3 months after carbo/ caelyx and then bowel blocked. So started taxol, had 8 sessions.
Also I finished treatment September but by December my bowel was blocked and had pleural effusion and ascites. All in about 3 month break.
Hi darling. Just a question to you - how they sorted your bowel blockage? Want to hug you very much xxx
30 sessions, I hear you & well done Sassy196. Paralyzed is a good description. It is such a long haul, topped off with covid. You haven't had a break.
Re: Focusing QofL I tried to just sit with a notepad a little bit everyday, when I felt like it, no pressure (that's why it took me a whole month) I wrote down what I used to enjoy, what I missed the most, what I would like to be able to do, what I didn't want, what gives you joy, what makes you calm. Small or big, what makes your life good. It also helped me to write down what I didn't want too: pain, being alone, not being mobile, being afraid. I review my list periodically to maintain clarity and it keeps me in the present. Fear comes when we are in the future or the past.
Absolutely yes, I am fearful at times but I try to remember emotions are just like waves, they will pass over us. If panic sneaks in I try to breathe and remember what makes me feel calm...my garden, my cat, warm bath... If it gets too hard your doctor can prescribe anti anxiety meds like xanax. I know it's there IF I really needed it but I haven't used it yet. I admit I am a control freak but that is enough to know I have an option. The key is to try different self care, coping ideas to find what speaks to you Sassy.
Remember you are not alone - you are loved
Valerie
I guess my worry is that in the 3 month break I had between chemos I got blocked bowel, pleural effusion and ascites. The cancer just went crazy
I got this silver bracelets in Morse code " Fuck the cancer". It helps when am looking at it ))) xxx
Hi SassyI also know how you feel. I was diagnosed with stage2 breast cancer in 2019. I had heavy duty chemo and monoclonal antibodies for 2 years and then at the end of my treatment in January 2021, I was diagnosed with stage 3C ovarian cancer. More chemo then suboptimal surgery (he couldn't get it all) more chemo, now Avastin (but CA 125 on the rise) and now avastin with daily low dose chemo pills(cyclophosphamide). I haven't had a break but I sure do need one. I go tomorrow to see if any of this poison is actually doing anything. Living with the fear and not knowing what is happening inside our bodies can be mentally devastating, and at times I feel that way. I take medical marijuana, that can raise my spirits a bit. Others that I know are on antidepressants like ativan. It helps with sleeping too. Otherwise, I am not in pain, and I try to ignore the fear and focus on NOW, but the demons definitely pop up. It's very difficult making decisions about quitting treatment, particularly when you are in the throes of it. You keep hoping something will work!
Cher 96 (Joan)
Hi Sassy, you can say no more chemo. But Thinking about it there is an alternative to staying on chemo or stopping and that perhaps is to stop for a period of time? Can you chat to your oncologist about this? Mental health is so important. Pausing might give you space and you can go out, make plans with your husband? See how well all those covid vaccines hold up.
It sounds like you’re in a really tough place. May be you just need to shout at the unfairness of it all. This is definitely a safe forum to do this.
I’ve had moments of profound despair. I ended a course of gem/Cis chemo after 5 treatments rather than 6. I spent a month recovering some strength and went to Malta with my family. It was wonderful. I’m back on new weekly treatments but that 4 month pause was extra special. Good times with my family, a lovely Christmas break.
Please speak to your oncologist.
Rosie x
I don't think that option will exist for me as my bowel blocked beginning of December after about 3 months of stopping chemo.
It is your call absolutely. I would ask you to write down your fears in a list form and then next to each fear and reason to stop chemo that you have write down what evidence you have to support that fear or reason. Come back and write another column when you re-read your fear and your evidence and write if your own evidence can really support your reason. I have been where you are but for me the thoughts passed when I weighed a few of my fears up ,in the way I described above. I had no evidence to support anything repeating itself and also no evidence that because last chemo didn't clear everything that the next lot wouldn't. I was prepared to take the risks for the chance to live a bit longer. I have now just started a maintenance drug. Currently suffering with side effects but hopeful it settles enough for me to stay on it. I know I still have further chemo options if this doesn't work so until the oncologist tell me I have no options I aim to carry on but that is always open to review by ME nobody else as it is for you. Wishing you clarity of thought to come to your descion. Xxx
hi sassy, i'm not in your position - i was operated on, had chemo, got all clear, cancer returned all in under a year. now NED again. i feel that i am mentally strong but am not even certain if i'm just in denial as i've been told the two cancers i have are 80% likely to recur.
but what i know is that a friend is suffering as you are. she has pancreatic cancer and is a real fighter. after chemo and RT, the hospital wanted to stop all treatment but she asked if she could try chemo again. they said they will give it to her as long as her body can take it. her body isn't really taking it. four times she's been rushed to A&E; she now has ascites (been drained twice/7 litres each time); is still in hospital. now she has diabetes as well. she's had stents blocked, needed an iron infusion. every day seems to bring another challenge. fighting cancer and trying to staying alive is all she can do/does. and the hospital has not suggested any alternative even though it is widely recognised that the second round of chemo is much harder than the first (for PC ).
i don't know what to suggest. yes. quality of life is so important.
find out what the consultant thinks about pausing treatment, dealing with your related health issues, whether you will be able to take it up again after a break or whether they can offer anything else that will cause fewer side effects. maybe you've already asked all these questions.
i like what tillymint says too.
wishing you all the best and hope some of what these ladies will help you to make a decision.
xx
Virtual hugs can feel pretty empty, but just know one is coming your way all the way from Los Angeles ❤️
Try a break from chemo and spend the time healing and becoming a person again then when you go back to chemo it is with purpose and a good mental framework love from paris
I understand why you feel paralyzed because you are terrified about the cancer going wild if you pause chemo on the one hand and on the other continuing the taxol and feeling like crap. I am wondering if you have tried antidepressants? I know they take time to work. The suggestion of writing down the pros and cons is a good one. Also if you could really talk it through with someone. Does your oncologist think a two week or month long break would be disastrous? I hope you can reach some kind of peace with your situation. Xx
hello my husband told the consultant he couldn't cope with his chemotherapy anymore.so they tweaked it for him and have been very supportive . I hope your team are as supportive. he wasn't going to finish his course he was so low . he is now on his last round nearly there . sending you lots of love .
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