Depressed after NED.

[fendweller]

I feel dreadful posting this , because I know there are a lot of ladies out there that are really suffering ,I've dithered for days , 23rd December my oncologist told me my last scan was clear and ca125 normal, I should be so happy and grateful , since then I've gone downhill ,physically I'm slowly improving but I'm an emotional wreck ,crying all the time ,irritable and snappy ,finding no joy in anything ,when I was having treatment I couldn't wait to do things now everything is an effort, has anyone else felt like this, its so unfair on my husband whose looked after me so well ,he deserves better, I feel so guilty , feel ashamed to feel like this, when so many of you are not in such a good position .Thinking perhaps I should see someone.

[Katmal-UK]

Hi What you are feeling is nothing unusual. Don't know if you watch 'Coldfeet' it was on last night and a character who had just been told she was in remission from Breast Cancer was talking about the EXACT same thing. To be honest she more or less said what you have written, its perfectly normal. Defo seek help though in the form of counselling. It does help!Sending you a big hug. Kathy xx

[fendweller in reply to Katmal-UK]

Thank you Kathy , I haven't watched cold feet , I'll find it on catch up , pleased to hear I'm not going crazy , I've never had counselling but I think you may be right ,I'll check it out , hope you're doing OK .

Love to you .xx

[Katmal-UK in reply to fendweller]

Even if you don't watch any other episodes, watch the one from last night then you will see what I mean. I watched it thinking 'so it happens to others'. Please check it out. I didn't have counselling for that but when I was going through my first recurrence and my Dad had been diagnosed with terminal cancer. You can tell the counsellor all your feeling etc and they teach you how to cope. I was hesitant at first, not really being one to sit there expressing my feelings but it really is cathartic . Hopefully it won't be long before you get your mojo back xx

[fendweller in reply to Katmal-UK]

Kathy ,you've been through so much ,you're amazing , like you I've never felt counselling is for me ,always just got on with it , I am unsure about opening up to a stranger ,but may be easier than someone close , what you've said had eased my mind a bit ,thank you .xx

[KimLJ in reply to fendweller]

I felt the same and I had counselling with the Helena Rollerson charity which is a cancer charity. If you have any in your area or a local hospice that does counselling they are better as they really understand. Ask your CNS that’s who referred me. I think we go through so much it’s very hard on our emotions. Good luck and love xx

[fendweller in reply to KimLJ]

Thank you ,I went to my local Macmillan drop in center this morning , the nurse is referring me for counselling with someone who specialises in oncology patients .xx

[KimLJ in reply to fendweller]

I’m so pleased. Hope it goes well for you xx

[fendweller in reply to KimLJ]

Thank you ,haven't heard anything yet , but feel better knowing its normal .xx

[delia2]

Hi. I totally felt like this after frontline. And I was in poor physical shape as well. I got angry when people said positive things to me. I felt they didn't understand the axe over my head. Unfortunately the axe did drop eight months after I finished frontline. Having a recurrence is awful too but at least you know where you are. I suggest finding some support. xo

[fendweller in reply to delia2]

Thank you Delia2 , I can relate to getting angry when people keep saying positive things , and understand what you mean by knowing where you are when the recurrence comes, just said the same to my husband , I will check out what support is available . xx

[Lyndy]

Hello... if I have learned anything in the last 4.5 years it is that you feelings often don’t match what’s going on with your health. I think it takes a while to process what just happened and often it isn’t until we have a breather from treatment that things fall apart emotionally. You’ve been brave for so long... allow yourself a little wallow because nothing about this diagnosis is fair.

By all means see someone or do something to acknowledge your feelings. Explain to your nearest and dearest that you are having a reaction and crave their patience.

But don’t beat yourself up ❤️

[fendweller in reply to Lyndy]

I think you're right about taking time to process what has happened ,I've found myself going over and over my diagnosis and treatment. Thank you .xx

[Spirit22]

I remember feeling exactly the same way, its perfectly normal. You will soon come to terms with all what you have gone through. As Kathy mentioned if you get a chance watch last nights Cold feet, I really identified with it. I said to my husband thats how I felt and he totally got it bless him. Faye Ripley is the actress who plays the character , and its really worth a watch. Hugs Lesley xx

[fendweller in reply to Spirit22]

Thank you Lesley , helps to know its not just me , I'm going to watch it later .xx

[Purple-iris]

Hi

Great advice from Kathy and Lyndy.

Please be kind to yourself, it’s very normal that patients feel down after treatment stops. I had counselling through the Dimbleby centre at Guys and remember being told that our brain takes longer to heal than our bodies. When diagnosed we go into survival mode and use the flight or fright part of the brain. We focus on getting through treatment. When treatment stops the emotional side of brain kicks in and we start to process what we’ve been through and all the fears and what ifs !

I was a wreck after treatment and needed to talk to people outside of the family that understood. I know it’s not for everyone but worth a try. You can also ring the Ovacome support line and chat to Anna.

Sounds like you are also coming up to a year on from diagnosis which is a significant trigger for all sorts of emotions.

I was in tears watching Cold feet, they have really captured how I was feeling (and to be honest still feel at times almost 4 years on )

You’ve got through a tough year physically and what you are feeling is very normal.

Sending a big hug

and best wishes

Kim x

[fendweller in reply to Purple-iris]

Everything you've said makes perfect sense , I've just watched cold feet , had a good cry , decided to go to the Macmillan drop in centre tomorrow and start the ball rolling , thank you so much ,it really helps to know I'm not going crazy .xx

[Hidden]

What you are feeling is exactly how I felt 3 years ago after front line finished. I’ve been NED ever since but have often dipped in and out of this feeling. It’s ok not be ok, Marian xx

[fendweller in reply to Hidden]

Thank you Marian , helps to know I'm not the only one ,hope you continue to stay well . xx

[Doglover1410]

Gosh me too, but get yourself some counselling.

I resisted for so long, I didn’t need it, I was strong, I argued with my cons all of these points.

In a grump one day he broached it again and basically to shut him up and get out of his office (although he is amazing, I’d had enough at that point!!) I agreed. I said ‘I’d go once and that was it’ so he agreed! Anyway, I went and to be honest I wish I’d done it long before! She was amazing, I talked, laughed, cried, grumped. She gave me coping techniques which I still use today, sometimes we talked about other things, sometimes it was normal, sometimes I needed a shoulder to cry on and a virtual hug. I got all of these.....definitely go get some!!

Oh and I also think it’s perfectly normal xx

[fendweller in reply to Doglover1410]

Been pretending I'm fine for to long , I've always been the strong one in the family ,the ' go to person. ' but I've got to admit I need the help now , I've been putting it off saying I'll be OK tomorrow but I haven't been , so tomorrow I'm going to the Macmillan drop in centre to get the ball rolling ,thank you for sharing with me .xx

[Doglover1410 in reply to fendweller]

Well done, wishing you well and sending hugs xx

[Lizchips]

It's hard to celebrate , but you must. It's a wonderful time for you and your family. All my scans are clean as of January 2020, Apr will be 6 years cancer free. You should be happy it gives hope to others that they to may be blessed with the same results. You may need to see someone. At least to talk too. Your blessed. We are all happy for you. Liz

[bamboo89 in reply to Lizchips]

Sorry Lizchips, gotta pick up a couple of things you said; there are no 'must's, should's and oughts' here. It is not possible to force feeling celebratory, you either feel it or you don't - in fact, relief at the end of the tyranny of constant hospital visits might be the closest to celebratory most of us can feel when treatment ends. The feelings Fendweller is expressing are perfectly normal and quite usual in the circumstances - I'd be slightly worried if she wasn't feeling that way, frankly, because it would likely mean she was covering up... finishing treatment allows what is almost post traumatic stress to start expressing itself, not to mention the fear.

Fendweller - if you haven't contacted the MacMillan service yet, do so - they have a psychologist/clinical psychiatrist available as part of their service. Good luck my dear

Miriam

[fendweller in reply to bamboo89]

Miriam everything you've said makes sense ,I've been to speak to a nurse at my Macmillan center this morning , she was lovely and helpful ,she's referring me for councelling , thank you for your common sense and for helping me .xx

[Lizchips in reply to bamboo89]

It's ok, different people feel differently, I was a police officer 35 years. I wasn't. Depressed, I just got busy living, I went back to work 8 months later. I know I'm a rare bird.

[fendweller in reply to Lizchips]

Thank you for replying ,I went to my local Macmillan centre this morning ,really helped .

[fendweller in reply to Lizchips]

Thank you for replying ,good to here you are doing so well it does give me hope , I went to my local Macmillan drop in center this morning ,nurse was really helpful ,we talked for well over an hour ,she is referring me for counselling , hope you continue to do well . xx

[Bettyxxx]

Hi there xx

I totally agree with the others and what great advice x I remember this too and feeling really angry and disappointed with myself for not being happier lol but it does come xx. I think its the lack of ‘doing’ when you come out the other side. We plan for the op and cope with it, we plan and attend chemo and cope hair growth etc then suddenly nothing, counselling was the best thing i did and I didn’t think it was for me either, so good luck in your new, different and brave journey there are lovely things ahead, you just need to get over this little mountain first

Love Diane

Xxx

[fendweller in reply to Bettyxxx]

Thank you Diane , reading your post had me saying " yes that's me and yes that's me " ,thank you ,I've been to Macmillan ,being referred for counselling ,thank you .xx

[izzybruce]

I went through a phase like you, I was so grateful to be ned, people happy for me saying your cured, feeling like a kill joy saying it doesn't mean your cured, it's in remission, it's normal what you're feeling, I would say it's like delayed sadness, take care of your self xxx

[fendweller in reply to izzybruce]

Thank you , that's exactly how I've felt , though I wouldn't wish it on anyone its nice to know its not just me .xx

[Whisking1]

Hi

I’ve just been given the all clear as well and I’m the same as you, my nurses say that it’s normal you spend so long fighting the cancer and keeping life normal your forget how to love cancer free coz all you’ve known for such along time is how to live with cancer!!! It’s really normal and cold feet portrayed it beautifully I thought watch it !!! But your not alone it happens to a lot of people who are given good news !!! We understand it but people who haven’t been through cancer don’t!!! It’s taken me 6 years to get cancer free might take another 6 to totally be free of the fear it’s left behind x

[fendweller in reply to Whisking1]

Good to here you're cancer free ,long may it last . I watched Cold Feet ,excellent, made me cry ,but everything does. I've been to my local Macmillan drop in center ,I'm being referred for counselling , so at least I've got the ball rolling . xx

[Maxjor]

I was hesitant to see a therapist when feeling well and thinking I should have little to complain about in remission, but you are right--it seems strange talking to a stranger but it's actual a whole lot better than speaking to someone who knows you well! If they are good (try to get a recommendation or someone specializing in cancer) they understand and can help very quickly to get you to work with your emotions, not against them. Sometimes even just having someone listen to your upset, fears, sadness etc that is outside the home makes it easier to say those things (instead of to your wonderful hubby who may not know the best thing to say to you under the circumstances. Hoping you make the appointment and in the meantime, chant to yourself how normal it is to feel as you do and there will be very good days ahead. Hugs, Judy

[fendweller in reply to Maxjor]

You're so right Judy , I've been to my local Macmillan drop in center this morning ,very helpful , referring me for counselling with someone who specializes in oncology. Thank you .xx

[JanTheHesitator]

Thank you for making this post. I'm in the same boat! Extraordinarily lucky to have got through this with "only" two surgeries when so many women go through so much more.

But I just don't feel the joy and gratitude that I want to. I'm coping with so much loss: surgical menopause in my 30's, no chance of ever having a baby, big scar, etc.

I'm still bereft about the loss of my partner too, even though the fact he abandoned me when I was going through treatment "should" be enough for me to know it's good riddance! The shock of it still haunts me. I feel heartbroken, and a fool for picking him, and for still wishing he'd come back/get in touch.

I live alone, and the energy it takes just to get through the day is huge. Everything that needs to be done is on me, every bin bag, every cup of tea, every piece of the washing up: it's exhausting!

I'm so grateful for my dog, for the existence of state benefits (though terrified the Tories will make it even harder), and for the small handful of friends I do have.

I do my best to stay positive, and am trying to rebuild my life. It really helps to know I'm not alone in feeling low despite getting good news.

Mary

x

[fendweller in reply to JanTheHesitator]

Mary ,I'm so sorry you've had such a terrible time , thank you for replying, I do hope things get easier for you ,all the replays I've had have helped me and steered me towards counselling ,I hope you've had the same support .xx

[Neona]

I had this after my surgery. I went to Mcmillan centre for counselling which was very good although I think it got better on its own really. I was prescribed anti-depressants but decided not to take them. I emerged after 2-3 months with a strong attitude desoute the return of the cancer. Hang on in there!

[fendweller in reply to Neona]

Thank you ,its good to know I'm not on my own ,though I wouldn't wish it on anyone .

[Joanne59]

Hi.what you have been through physically and mentally is enough to make anyone depressed.while treatment is going on you just struggle through it somehow! When it’s over we reflect on it all and it can have an enormous effect on us.hope you feel better soon x

[fendweller in reply to Joanne59]

Thank you , yes you're right ,I have time and a little bit more energy to think about what has happened , I've got through the physical now got to deal with the emotional .xx

[Caroles1]

Hi love,

I think by now you know you are not alone, I am 5 years out after NED and I can honestly say it has only been the last year I have got on with life and got irritated by the fact I have a check......please leave me alone now!,

When I got the NED, I felt like a little boat in a large ocean, with no support and feeling like I should be happy, ecstatic even and cheated that I felt anything but.

I was told we all suffer with PTSD at this point and I received counselling, which made all the difference.

I since make myself so busy with friends and family I don’t have time to dwell.

You will get there, glad you are getting help, it is a gradual process, never thought I would feel better, but you will, the only way is up.

Carole xx

[fendweller in reply to Caroles1]

Thank you Carole , a little boat in an ocean is a good description , good to here you are doing so well . xx

[Barmycharm]

Hi I know exactly how you feel, I feel exactly the same. I watched Cold Feet last night and cried. Thank goodness, it must be a well known thing otherwise they wouldn’t have been covering it?!

I feel so guilty and ashamed that I’m not feeling I can just get up in the morning and make the most of every minute of the day which was how I envisaged I would be if and when I got NED!?! The strain of pretending all the time is exhausting on top of still feeling exhausted! Nobody understands, they just think you’re ‘all clear’ and back to normal?! I am seeing a counsellor and yesterday I told her all of this. She completely understood and pointed out the fact that many years ago people who had a chronic illness would be sent away to convalesce after treatment and I actually found this very helpful and it’s made me realise that of course it takes time to recuperate. I have a whole day to myself today and what a relief to just sit and not have to put on a front for anyone?! I still think of everyone still going through it all and feel empathy and am grateful that I’m NED ( at least atm ha) but the brain definitely takes longer to heal after the body is hopefully healed. I hope it has helped you to know that you’re not alone and thank you for posting this coz it’s definitely helped me to know that it’s not me going mad!

Big hugs and wishing you peace of mind and some renewed energy very soon.

Claire xx

[fendweller in reply to Barmycharm]

It certainly helped knowing I wasn't alone , I feel exactly the same as you , shame we're not warned about it when we finish chemo , I thought I was losing the plot. Good that you're getting counselling ,I've been referred ,might have a long wait. Hope you soon feel better , sending love and hugs .

Cheryl xx

[Barmycharm in reply to fendweller]

Thank you. I’m seeing a private counsellor but I was seeing one through NHS earlier in my treatment and it took 4/5 months to get seen. Then she got moved to a different area and I was alone! Didn’t feel I could wait another few months again feeling like this so bit the bullet and am paying for one. She has a background in cancer and hospice work so is understanding of my situation. Might be worth looking into one in your area if the wait is too long. Even for one or two sessions. Thinking of you

Take care xx

[fendweller in reply to Barmycharm]

I will check out private counselling in case the wait is to long , hope you feel a lit better soon .xx

[Differentforgirls]

I felt exactly the same after my treatment finished. It’s a bit like PTSD - you get through the treatment with the help of medical staff, friends & family then you feel alone. Everyone appears to get back on with their lives &, although you still get support, you feel lost. There’s an article which helped me called ‘After the Treatment Finishes - then what?’ It’s by Psychologist Dr Peter Harvey & can be found online.

I also went to HOPE group therapy sessions in October 2018 - which Macmillan run all over the country for 6 weeks. No one else in my group had had OC but the advice was great. I finished my chemo June 2018 & only accepted my situation September 2019. I also went to my GP for help & he prescribed Fluoxetine ( prozac) which made me feel & be more like the old me. I wished I’d taken them earlier to be honest.

Please be kind to yourself. You get swept along with what you have to go through, then it catches up with you after. Understandably.

Hope this is helpful.

Take good care, Lynne xx

[fendweller in reply to Differentforgirls]

That's exactly how I feel ,I will look at that article , it was suggested I see my GP but I am a bit unsure , I'll have a re think next week, would be easier if I had a regular GP , who I knew, but here you can't chose who to see unless you're willing to wait three or four weeks ,what you've said makes a lot of sense , your reply and others has really helped ,thank you .

Cheryl x