Hi everyone, there is no need to reply to this message but I just want to write how I am feeling.
I booked a holiday ten days ago, two weeks in Turkey 5* all inclusive in June. Since booking it I have thought nothing but dark thoughts and been unable to sleep for fear of passing in the night.
Am on caelyx and my body aches all over. Gp gave me morphine last week but I never told him my true feelings. I cry a lot. I’m thinking why am I bothering trying to fight this awful condition that will get me in the end. Then I feel guilty as two of our precious ladies on here have been given devastating news recently.
I know my husband wants to tell me to stop being stupid and I know he is right. I just have to get out from under this black cloud.
Thanks for letting me have this moan. I’ll be back soon. Love to all. Xxx
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Maggiemo19
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We are at similar stages with treatment caeylx as I recall chatting before.
Just a thought, I feel very down when I come down from my steroid block.
Not that you need a reason! It’s crap I know.
I’m Day 12 so got the lump feeling in throat, body fatigue and pain. This time I’ve got sores underarms and around abdo scar. Feet still ok!
I had my surgery at City like you, but I’m at Good Hope, heartlands sister hosp. I imagine we have the same CNS. Who is wonderful, give her a call. She’s always encouraged me to xxx
Yes I have the lump in throat, sore mouth and the tiredness. I have patches of sore skin around my hips and around my upper scar. I also now have a midriff hernia. I think your cns is Vanessa who is lovely but I have Julie who is just as lovely. Xxx
You are not being stupid at all....this is an appalling disease and it is so hard to try to ‘be normal ‘ around it. I find myself isolated because I so often feel that even well meaning others have no idea. This forum and my lovely Macmillan support centre have been invaluable when I’m down...much love Lxx
Two weeks 5* sounds wonderful. Every day is a precious moment no matter what. We all have a sell by date it’s only having cancer that makes us think of our mortality in a different way.
Morphine is well known for bad dreams so that could be why. I locked our bedroom door the other night after a particularly bad nightmare. Although most of the dreams are a bit weird and full of people I don’t know
It’s always good to write down what worries you it stops it becoming huge. Then in a good moment read it back looking for a counter argument. It does work
Well said regarding the mortality bit LA. people often say to me 'how do you cope' to which I usually reply that I hate to break it to you but nobody gets out of life alive' those of us with a cancer diagnosis are forced to face our mortality. Hope your felling bit better today xx
we all have dark thoughts no matter where we are in all of this, but, if you feel ok and you are getting by, do things to cheer yourself up, a candle lit soak in the bath, a walk in the winter sunshine, anything you enjoy doing to lift your mood.
I have a large part in my grandkids life, I enjoy knitting, concerts, music, gardening, decorating anything to lift my mood. If you are finding it all too much, ring the nurse on this site for some advice or contact Macmillan or maybe arrange some councelling.
You have a lovely holiday to look forward to and worrying about passing in the night is not going to help a good nights sleep.
You need your rest to get re cooperating, I haven’t had Caelyx, so I don’t know what that is like, but hope you get help from the other ladies that have,
Don’t think nobody will reply we always will especially when someone needs encouragement. My special person has been in dark places when she was on Carbo/Gem she thought her family were going to die even being in the same room with her. She’s dramatic but this was on another level. It might be worth going back to your GP and see if he/she can prescribe some antidepressants nothing major but just a little something on a short term basis to help lift you from this place. As LA has said write down how you feel then it won’t turn into anything big, also look forward to that holiday you’ll have an amazing time! If you can try and book a couple of nights away in between I’m 100% sure the change of scenery will help you too. Xxx
Hi Maggie, It's normal to be depressed with all that is going on in your life and to feel why should you fight on arfter 3 years I feel this way some times also but in the end I have loved ones I want to stay with as long as I can.
I'm about to leave to go to hospital for my first dose of this new trial still nerves.
I now you are having a bad time with caelyx I hope it gives you the good results I had, it was not easy I had most of the side effects but managed the 6 treatments.
Steroids help and for the blisters under my arms steroid cream was also good ask your team for as much help as you need.
When you get time read my posts on caelyx I know it's not suitable for all but it was for me, hope it gives you good results.
chine up and and enjoy your holiday.. take care Lorraine xx
Lorraine, are you having the new trial instead of Caelyx as maintenance? Or. Is it additional? Just am interested as that could be a possibility for me. Did you have to have another main course of caelyx first? Can't remember!!!! Love Chris xxxx
Hi, I've just got home from the hospital I had my first treatment of the trial drug, this trial is not chemo it's to make the cancer more sensitive to chemo, I had to come of carbo/caelyx before I started the trial.
My history is as soon I stop the chemo I have a recurrence which is common in ovarian cancer and this drug hopefully will help.
I will have the drug for 6 weeks then will go back on chemo becourse Caelyx has been good for me I will go back on Caelyx.
I know my 125 has started to go up I was worried about being off chemo but I can always stop, my oncologist feels if it works it will make the chemo more effective.
Plus when it finished she said I can still have Caelyx as maintenance if I need to.
My history with Caelyx I had it for 3rd line by it's self with good results then carbo/caelyx for 5th line ,for 8 month one a month this also gave me good results, I was about to go on maintenance when my oncologist wonted me to go for this trial, l most admit It was a hard decision to make going of chemo, but they will keep a close watch on my 125.
I hope I have given you the information to help, you can ask at any time.
Thanks so much Lorraine, good luck with the trial...my gut feeling is that caelyx is also good for me...am still recovering from Niraparib blood effects though(!). Am not sure oncs think I ever will though is improving gradually. !
I love the blue mountains...tho' have only been once! Maybe one day....who knows?! Love Chris xxxxx
Hey Maggie, so sorry you’re feeling down. Guess we’ve all been there a fair few times. At least you know that here, we can understand the darkest moments. You also know that we usually find that light at the end of the tunnel to keep us going. 5* holiday sounds fantastic. Can we all come too??? Sending you a big hug and lots of 🌺🌼🌸🌹🌻🌺🌼🌸🌹🌻🌺🌼🌸🌹🌻 Jo
Sending you a big hug Maggie, maybe you didnt expect replies but when one of us is feeling down we rally round. Hopefully when you eventally get to that holiday and feel the suns warmth your spirits will lift (though hopefully you will see you are not alone and that will help) xx
Dear Maggie it will be wonderful and you will feel so much better with some sunshine. All these drugs have so many effects on our minds as well as bodies that is probably not helping but perfectly normal to feel down sometimes as coping with this damn disease is wearing!
Sending love hugs and encouragement to enjoy some new experiences xxx
I just want assure you that you are not alone, just as everyone else has. When you are in that dark place it’s difficult to believe that you will smile again. The aches and pains of this despicable illness is added to by the aches and pains of treatment . This is bound to affect your mind and emotions . We have all been there and couldn’t see the light at the end of the tunnel but trust me the darkness does lift and the light comes through. Sometimes we need help. Mine is making an appointment with my cancer psychologist and talking through everything. My other trick was writing in my journal every night and and then letting everything go including worries so I could start tomorrow afresh. It works for me most of the time .
You have had some great replies from women on the same treatment who know exactly what you are going through and I can’t add to that as I didn’t have the same chemo. My wish for you is that the hope of Spring will grow inside you and that you will soon start looking forward to that lovely holiday. Take care.
Do not despair Maggie, we all go through this stage at some time during our illness. I, myself, wouldn't buy anything because I told myself I wouldn't be here to use or wear it. Since then I've booked holidays, bought clothes, made lots of future dates for theatre, friends etc. I guess I must believe I'm going to do these things. And, you should see the pile of books I've got to get through. I watch serials on TV and I've got to know the end.
I say, and I DON'T know what I'm talking about, it's only my own thoughts, that you should ride with it. Let is out and it will pass. You're not being stupid. Plus, we usually feel a bit better after a good cry.
I hope I haven't made everything worse for you. This is only my own experience and I'm nearly 5 years down the line now with stage 3C.
As others have said try not to despair. Now that the crapppy sales are over nice summer clothes will soon be in the shops so go and buy something for your holiday. I have travelled thousands of miles so that I can lie on a sun bed, guess what, it’s raining! You have to laugh. Hope us ladies are some help to you.
Maggie, ask about antianxiety meds took the first year helps a lot. Stay positive and take up a hobby painting even if you are terrible it's fun.plus you meet new it gives you an outlet. My husband would tell me to suck it up you new it's going to be hard. So I stopped complaining. I got busy living. I was diagnosed in April 2014, I'm still here. I have horses and just got a bicycle and started riding to the beach. Got other friends motivated and we ride and do lunch. Best wishes and stay strong. Liz
You know, the girls here are very special to me and they certainly know what they are talking about. Between them and Anna from Ovacome support they got me through a very bad patch. When I think back to the black hole I was in a month ago I feel so guilty and ashamed that I wanted to end my life. Now I feel so grateful that I reached out for help, as you have done.
What you feel now is perfectly normal and I know it will pass soon. Just let out how you feel and don't bottle it up and put on a happy face for the sake of others. Cry, scream, shout and do whatever you want to do to get the anger out. I punch the crap out of a big cushion - usually - but I let other things get me down and the demons spiralled out of control. I will never let that happen again.
We are all here for you - and each other. You are safe with us. You are loved and you are alive and we all want you to stay that way. Can we all come on holiday with you? Kryssy xxx
Well what can I say but a big thank you for all your lovely words of encouragement. I got an emergency appointment with my gp today to talk through how I was feeling. I was having very dark thoughts ,think you know what I am saying. He was wonderful even though I sobbed the whole time. He said no wonder I felt so low with my blistered hands, ulcers in my mouth and on my tongue, a midriff hernia and nausea 😢😢. He gave me steroid creams , a different mouth gargle and antidepressants. He said the nurse will call me every day to check on me and I can call him anytime I need him. I am a catholic but haven’t been to church since dad died 2yrs ago but am going to see the priest tomorrow for a chat. I am a very private person so don’t open up to people easy but have reached this point where I do need outside help.
Thank you all for thinking of me even though you are all having your own struggles.
Sending a big hug to each and every one of you. Xxxxx
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Kryssy xxx
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