I cannot get my head out of the dark thoughts. Posted previously I have inoperable OC, I know its terminal. I know I should take each day as it comes as everyone tells me, but its not that easy. Every morning its my first thought.I am terrified of what will happen.
I dont have relatives, have friends that are supportive but dont live locally. And I cant keep depressing them. I think it would make such a difference to have someone to hold me or talk to in the middle of the night. Life seems rather pointless I cant take pleasure in anything. I tried an anti depressant and it
made me feel worse ! What do you do to keep upbeat
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rosebine
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I'm sorry to hear that you're having such a difficult time at the moment. We’re here to support you, so please do call our Support Line on 07503 682 311 or 07493 703 967 if you’d like to talk things through.
Your Clinical Nurse Specialist (or other point of contact in your hospital team) may be able to refer you for psychological support. Although the antidepressant that you tried before didn't help, if you speak to your GP they may be able to advise you on alternatives.
If you want to find a counsellor for yourself, the British Association for Counselling and Psychotherapy accredits therapists and you can search their directory through their website at bacp.co.uk/about-therapy/we... and find a local therapist with an interest in cancer.
We can also look into services in your area if this would be of help to you. If you would like us to do this, please get in touch and let us know which part of the country you live in and we will look for local services you could contact for additional support.
You can also contact the MacMillan Cancer Support Line 7 days a week, 8am-8pm on 0808 808 00 00. For support at any time, as well as this forum, the Samaritans offer a 24-hour listening service, and you can call them on 116 123 or you can email jo@samaritans.org. You may have to wait a while before your call is answered.
I hope you get some help and support soon. If there’s anything that we can help with, please get in touch with us.
Hi, I agree with Julia, try and get some counselling. I resisted for so long but my oncologist persisted and it was amazing. Tough and lots of tears, but someone to sit and let you talk, cry, sulk, scream, laugh and eventually realise that your oncologist was right! Sending hugs x
Hi rosebine, I can connect with your fear. I too have inoperable stage 4 of cancer, diagnosed just over 3 years ago. Found tumors on my liver, and then brca2 positive which means higher chance of breast ca. I too wake each morning and its my first thought and still feel an element of shock at the diagnosis, but then I think, well I woke up so let's just seen what today brings. I had partial surgery at my diagnosis, chemotherapy, then I recurred, more chemotherapy and for the last 15 months in have been on zejula(niraparid) and I do feel well. I try to get out each day, shops, walk, meet friends when we can and I suppose , just keep going. It is hard, it is depressing, but we are still here and new things are happening all the time. Keep tuned in here, there are a lotnof powerful ladies who will offer support, advice,hugs and lots of love. All the very best wishes to you xx. Joanie
I feel for you and understand where you are coming from. I am sending you heartfelt hugs and kisses on the forehead and cheeks. I hope you can feel them and that all our good wishes and sweet vibes from afar are making some little dent in your sorrow and despair..
You ask about how one keeps upbeat. I also don't go for the, "one day at a time" routine being a long range planner by nature. I make plans for travel and carry them out big time. So far, I have been lucky, I am a recent recurrent then metastatic cancer sister and so I have been able to push the cancer treatment into my schedule around my travels. For example, last April I was diagnosed with recurrent cancer. The doctor wanted to have surgery performed right away but I carried out my plans, first. Four days later, I travelled in my little motorhome to the midwest to see some of Frank Lloyd Wright's buildings. Then, in June, I went to Russia and July to Asseteague Island and Okrocoke, in the Outer Banks. Then, I had surgery. Again, I was lucky, for the time being. In December, I was diagnosed with a metastasis to the liver but I had plans for a round trip from NYC through the Panama Canal to California on el cheapo ship, then back across the country on sleeper trains. I went anyway, danced almost every day, with some difficulty, and had a wonderful time. I have plans for Asseteague Island National Seashore at the end of August and unconfirmed plans for the Black Sea for next year, 2021. The effects of the metastasis may get worse but I will try to look past the present troubles and pains and to look forward to the next adventure, whether or not it becomes a reality.
That is my way but I am sure there are other more peaceful ways of getting past the present horrors. Perhaps we can get a posse together to visit you and to give you hugs to make you know that you are loved.
Wow! What a great outlook.. Its unfortunate now that we cant really go or do much in this pandemic. I believe its harder on all of us because we really need to be careful and its been very hard not getting to see people, good friends, do things such as even going to.a Restaurant. Guess I wish that I did more when I was able to . Im sure that many of us feel like this. Its lonely. I wish everyone all the best. Take good care of your sweet selves.
I was so despairing this morning I rang Macmillan and sobbed. They helped. My oc has returned after 18 years it is in my sternum and lymph nodes. I thought my organs were free but when discussing my chemo treatment with a nurse she said this letter will be sent to your dr with a copy to you and there I saw liver and bone mestasses. No one told me about liver this was on Fri my husband and me have been upset all over weekend nurse said someone wld ring today Mon but a nurse rang and avoided my questions. She has made appt to see onco!ogist next week as no one available. I absolutely lost myself hence ringing macmillan. They were wonderful. I sobbed and sobbed. I still have to wait and first treatment on fri i find it cruel that there is no one to speak to me. Please talk to them it may help to share yr desperation. I Send a hug and loving thoughts to you
Hi Lizzieanne, I just wanted to say the Nurse might have avoided your questions because she didn't know the answers and she didn't want to give you the wrong information. You will be able to talk to your Oncologist. Sue xx
Hi rosebine. I don’t know what to say except I be had those feelings too for months this winter but somehow I snapped out of it and decided to live as if I have a future. Unfortunately with Covid I can’t travel or do some things I really enjoy like going to the theater but I’m managing to keep the dark thoughts at bay. It helps that I’ve been on Olaparib for three months and it’s very tolerable at this point. I hope you can try counseling or manage to find some human connection nearby. This isolation can’t be helping. Take care. Hugs. Xx
I went through a phase of terrible depression after my op. I woke up every morning shaking with fear under my duvet - fear of absolutely everything. I decided not to take the antidepressants and I think this really helped me - taking control or something like that. I know I can’t be cured as I recurred during frontline chemo and was told further surgery was pointless. However a new trial drug has kept me going for the last 2 1/2 years. I try to keep as informed as possible. I don’t think about the word terminal but try to live for the day rather than think ahead the way I used to do. I have found these forums a great help and also follow the Ovarian Cancer UK group on facebook. I have even met some of my online friends in the hospital. If you post in the middle of the night you may well connect with someone as lots of us can’t sleep!
Hi Rosebine. I was diagnosed 3c in Nov 2011. Tumour described as "bigger than a baby's head". I couldn't believe this had happened to me. I was 65 and had always been healthy. When I went out to lunch with friends & they discussed ailments, I had nothing to add to the conversation. So how could this possibly happen to me !?
Well, it HAD happened. Altho' it took a while to get over the shock, I found that I was soon telling myself "It HAS happened. It is what it is & I have to get over it & get on with it". That's what I tried to do. Chemo put me straight into remission & I got on with life. My onc had told me there was a 50% chance it would be back within 2 years. I had a recurrence after 18 months. I was then told it was inoperable, terminal but not untreatable. Six rounds of carbo/caelyx with Avastin later & I was back in remission. I asked my onc again for a prognosis. He said "how long's a piece of string?" (technical term). So my husband began to book holidays. I'm thinking : but we won't be able to go... But we did go. I had 5.5 wonderful years of seeing our children marry and both have children. And visits to New York, where our daughter & family live & work (they managed to spend the worst of the New York Virus time in Oz & work from here, thank goodness). My OC's just recurred & I'm back on the carbo/caelyx.
But things have changed since I began this journey 8.5 years ago. OC is no longer looked on as a terminal disease, more a chronic disease - there are lots of treatment alternatives; lots of "maintenance" options to follow chemo.
I know you've said you have no family but I'm sure there were things in your life that gave you pleasure before this hit you. You're in Kent, I think I read. That's a lovely part of the world. Please try to see the pleasant things around you - gardens, birds, whatever pleases you. Try not to let yourself go to those dark corners. Best wishes. Pauline.
It's very hard try and find a club to join painting or reading something gentle or a support group. You need to see people. Lockdown has made me realise that. I am inoperable stage 4b was attending hospice twice a week. I miss the physical contact we humans need.
Hi Rosebine Firstly 1 anti depressant won't work, it takes time to get into your system. I'm really sorry you are feeling so low, I am also on my own so I know how difficult that is. I think you should talk your feelings over with your Nurse, she should be able to help you. Huge hugs and I hope you soon feel better able to cope. Sue xx
I was diagnosed with oc 12 years ago, & have been having long term treatment for my 5th recurrence now for nearly 3 years. I have had times of feeling low, but been able to come up again. I think all the uncertainty & restrictions with coronavirus & the lockdown etc can make us feel worse too, & make depression worse. I don't know if you've been shielding, but I know I've found that difficult. I hope you can get the help you need to be able to start bouncing back. It can be done. Di
Thank you everyone. I think I would feel more positive if I had surgery as these tumours are so big. Had a call from Oncologist yesterday,he had spoken to a surgeon again and they said there would be no benefit to me from surgery and they would probably not even consider it as I do have a slight heart problem. So I now have to choose between carbo/taxol again, which left me with nerve damage and could make it worse, but I had it previously and coped fairly well, except I loathed losing my hair ! or unk nown carbo/caelyx which can cause heart problems but probably keep my hair and nerve damage unlikely ! I did actually speak to a counsellor a few months ago and quite honestly she was not helpful at all.
My dogs are keeping me sane but I am so worried about their future as no one to take them
and I cant bear the thought of them ending up in some kennels. I may have to make a
hard decision about them too.
You are all so lovely on here wish I had found this site ages ago!
Please talk to the Cinnamon trust. They are brilliant and will ensure that your dogs are taken care of if the worse happens. They also make sure that they are looked after if you have to go into hospital.
Is there no edit button? wanted to say I totally agree with the lockdown frustration, i had loads planned while I was off chemo and cancelled it all. Was supposed to be shielding but wasnt practical for me, no-one to shop, couldnt ever get a shopping slot and of course the dogs! It did make your thoughts turn inwards when you have nothing to do except eat sleep and read !
To edit once you have posted, go to the bottom right of your post. Tap/click on 'more' and then on 'edit'. I use this all the time when I am replying on my phone😉I was recently diagnosed with a recurrence and, while I have come to accept that my cancer is not curable. Surgery was a no go for me too. I am far from giving up and am hoping that I am able carry on for as long as I can with treatment, although I don't know yet whether my type of cancer will be treatable. I'm coming up to my second session of carbo caelyx. Mentally I am finding it a little more difficult this time - prone to dark thoughts and the occasional pity party. I do understand where you are coming from even if, perhaps, we may not worry about the same things. Sometimes when I get these 'moods' I just go with it and get it out of my system. Thankfully they don't last long and then I set to planning things that I am able to do and generally keeping myself busy. I do talk to family and friends but don't like to over burden them as they feel so helpless with the restrictions of covid 19. I have talked with my CNSs Navigator who runs an eHNA (electronic Holistic Needs Assessment) and counselling - part of the MacMillan holistic needs assessment. She has been very helpful in talking me through my needs and worries a few times. I also think that Covid is a big factor in a lot of our concerns. In the early days when I thought forward about a time when I may have to accept that my cancer us not curable (as you do), I always imagined lots of plans to be off doing things with my family and friends and maybe even travelling. It did not involve isolation and being stuck in the house most of the time. This is just so hard. I'm just so thankful that I am able to bring myself round to a more positive frame if mind and enjoy what I do have. All I can offer is support and positive thoughts and lots of virtual hugs. Jackie x
Please get in touch with Macmillan ,they helped me a lot when I was in a downward spiral , despite being told I was Ned I lost the plot when my treatment stopped ,I couldn't come to terms with the fact it would come back,I felt there was no point in anything because I would have to go through it all again . Macmillan arranged counselling with someone who specialized in cancer patients ,I also went to their Hope group and a pampering session ,I'm not saying everyday is perfect but I'm much better, please get in touch with them ,I resisted but my husband practically dragged me their .
It must be so much harder for you on your own and this awful lockdown has made it even worse, ,I wish I could give you a hug ,sending a virtual hug and love .Let us know what you decide ,we don't know each other but we all care about each other. Xx
It is so hard mentally to get through this. It takes time & we all accept it when are ready to do so.
I was prescribed Prozac a year ago - initially it made me feel very flat for a few weeks but then I started to feel more like me & could begin living again. It really helped. I’m still on it as I needed more surgery ( in Jan 2020) followed by 6 cycles of chemo. I’ve coped better this time around but allow myself those days I need a good cry ( I was told on a HOPE course - which I highly recommend - positivity isn’t always being optimistic but accepting how you’re feeling ).
Please be kind to yourself - you’re going through so much. It’s totally understandable you’re feeling the way you are.
Sending hugs and lots of prayers your way. It is very difficult not to think dark thoughts but I always say to myself that there is always someone out there worse than me and still living life. We have all been hit with a very scary disease with most of us living day to day. Every day above the ground is a good one! It sucks to have this diagnosis and it sucks for all of our families and friends, but try to make the best of what we do have and do the best you can. Stay strong and try to think more positively than negatively.
Its a pity that this cancer doesnt have such a high profile as breast cancer, things dont seem to have moved on much for years.
Just got date for next week to start chemo again, very uncomfortable in my lower abdomen at the moment, actually the first time since diagnosis that Ive had any pain at all ! How I would love to be able to jet off to Italy, my favourite place, for a stay in a luxury hotel on one of the Lakes!
Agree Rosebine much more research and higher profile. Good luck with your chemo start my first one with my recurrence on Friday. Sending positive thoughts to you. x
I dont know how you have all fared with your treatments during this pandemic but I have to praise my hospital who have been wonderful. I was between chemos during the past few months so wasnt due any appointments but was worried that with this progression I would be waiting ages, but that hasnt happened! The news reports about cancellation of treatments have been very worrying so I hope none of you have been adversely affected.
Inoperable doesn’t mean, passing v.soon!!! There are many options & treatments to have to sustain your life. Take each day as it comes & seek out info. I too was bluntly told this 18months ago & interpreted it as you have, but have had 6 chemos since, feeling good, waiting for CT scan & anything else they wish to try to sustain Life. Buona fortuna Iside
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oestrogen receptor positive - how do I know if this is me?
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