A couple of months ago I finished a rollercoaster year of treatment - full mastectomy, chemo, lymph node removal, radiotherapy - and I've just started tamoxifen (10 years).
It sounds mad but after the celebrations of finishing it all when I was on a real high, and just when I thought I'd be picking up my life again and appreciating being alive in every moment, I feel in this weird limbo and incredibly low.
I can't seem to shake it off. I'm crying every day. And I feel in a worse emotional state than I did throughout all the treatment.
I don't know how much is to do with processing the trauma of the last year now, or the side effects of tamoxifen, or the fact that chemo brought on the menopause.
But I feel like a horrible, cranky, negative person. And I feel very alone.
So if there's anyone out there who has been through this and can tell me it passes, I would love that.
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sashbash
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What you are describing is a combination of the trauma you have been through and menopause symptoms, when you go through all the treatment I don't think you really have time to get your head around what's going on, then after it all sinks in, it is like post traumatic stress.
Be kind to yourself seek help counselling etc, you may need antidepressants if your doctor thinks appropriate. If there is a breast cancer group near you maybe join it.
When you have been through breast cancer your life does change, you change I do try to talk about it to people, I don't want people to think I won't talk about it.
I went through it 2 years ago, I had a mastectomy I didn't have chemo so was very lucky, now on letrozole was also diagnosed with osteoporosis so take medication for that, I am 54.
Deb, thank you. It helps just to connect right now. Funnily enough I looked into anti depressants and it looks like they're incompatible with tamoxifen. I think it's also that while I was going through treatment I felt so buoyed up, sometimes even elated. I had purpose, and now, ironically, I don't feel I do. I know this will pass, I guess I just wasn't expecting it!
I am still going through treatment but have the chemo and surgery behind me at least. I started on tamoxifen 6 weeks ago and it knocked me for six. I cried every day, couldn't sleep, menopausal symptoms got worse, I was irritable...anyway, it's starting to settle and apparently the first few weeks are the worst. Your feelings are, I think, completely normal. We go through so much with this disease. There are some anti depressants which are possible so ask at the hospital but also my friend did a Macmillan course called "moving on" I think. She said it was really helpful. I saw a counsellor at hospital pre surgery who is fantastic and am lucky to have that resource but Haven , Maggies, Macmillan are all on hand to help at the end of treatment. Good luck, get the help you need to start making the most of life, which most likely will be different.
Raggarty, good to hear from you. You're right, we do go through so much and the physical side of it is a big part but just one part. What I realise now, is how my emotional regulation is shot. I think I put all my energy into being strong last year, and coping with it all, and it's left me frazzled and easily triggered. Anyway, its a few weeks on, and I'm feeling brighter generally and just trying to stick to the basics of eating and sleeping well and getting exercise, doing yoga etc. (surprisingly challenging actually!!). I'm not in the UK right now so don't have access to the moving on course though i've heard really good things about it. In the meantime I'll keep pushing on with the tamoxifen for the time being and see what happens...
I have not been through this but know that many people feel a bit abandoned when all treatments are complete. I am sure that you are right about processing what's happened. This experience is very much akin to a bereavement. You have lost much and are now working through your grief. You may FEEL worthless but look at all you have achieved. This had been a long and for the most part lonely journey. You will get over this hurdle. Try and give yourself a reward each day and be kind to yourself. Is there a support group near you. Or maybe ring the Macmillan or Breast Cancer Care helpline so you can let it all go. That's what they're there for. Your GP may help also
Hi, very much empathise with u, on a similar treatment time frame, though less visible side effects. I have likened it to someone giving us an important urgent new job ( you of course didn't apply!) But you did a great job, everyone tells you so, you tackled it with determination and fortitude, it was the reason u had to get up each day ( or in the case of chemo - just get through each day) it was the excuse everyone gave u ( correctly or not) for not being able manage the things u did before and anything else U did manage put U close to Superhero status! AND then someone sacked U. Told u to take some tablets ( or not in my case - triple negative ) and just get on with your life as before!!!! But your mind is still absorbed by that job. My GP commented I didn't seem very "overjoyed" that I had finished treatment and if I still felt same in a couple of months 'come back' and talk. She was spot on in recognising where I was. The solutions offered by others are all very sound and it is just a matter of time and your mind becoming more absorbed by other thoughts and less by the cancer and treatment. I have found that is gradually happening as I do more things not connected with hospitals and medical, some just fun some purposeful and many just day to day dross. I also just took a holiday that was a mix of rest and sightseeing and that definitely provided pleasant things to occupy my mind.
As others have said, it is like a bereavement. All your focus has been on getting through treatment, and now that's done it is hard to readjust to 'normal' life. I think what you are feeling is normal, for what it's worth. Give yourself time, talk a lot, and if you can try to plan a relaxing holiday to have something to look forward to.
I'm only starting on this journey, but have seen many women through it. Most have felt just as you do. Best of luck on moving forward, day by day.
Hi Sashbash, Firstly you sound like me (and no doubt loads of others on here) I went through the same treatment as you, but also had a rh preventative op last November. Am also on the fab Tamoxifen for the next 10 years and have been pushed into menopause; i'm 44 btw.
I think we have a kind of PTSD... The treatment, worry, stress, fatigue and fear all contribute to it... I finished my treatment in March 2016 and also had the elation period, the "I can't believe I'm still here" rush of adrenalin that lifts you up so high and makes everything feel fab... but that bubble unfortunately does pop... normal life resumes, people forget to ring and ask how you are and if you fancy a coffee and a chat...
I dipped after about this time last year, the autumn reminds me of chemo days and I have to say am finding now a bit tough..
All the above makes you cranky and negative.. you will feel better gradually, but I don't think the feelings completely vanish but what helps me is just doing the things I like to do, enjoy a boogie around the kitchen when your favourite song comes on, buy that scrummy cake, take an hour to read that book you've wanted to read for ages, go out on that girls night out even if you know you'll be hanging by 11...
Mostly just keep talking about it, speak to your breast nurse if you really feel like you're not coping.. hopefully they can arrange for you to see someone who can help..
yes yes yes - so identify with what you've said about the low after the adrenalin high. I was 46 when I went the sh+t hit the fan. ... Anyway, time to ramp up the 80s music and have a dance (while eating scrummy cake)...
I am actually writing this a second time as I did the first on my phone and it all deleted when a call came in, so now I'm at the computer and will start again. You have described what I have been through to a T. I too went through the menu of treatments, chemo for over nine months, double mastectomy, lymph node removal, radiotherapy... you name it I had it, as have many of us. Once it was all over I didn't really get that 'High' that I was expecting, it was a bit of a damp squib to be honest. My neighbours were excellent and put on a cul-d-sac party for me to celebrate the end of treatment, but in my heart I didn't feel the joy and relief I thought I would. To top it all off, I had to take early retirement from a job I loved. Contact with my old colleagues has basically petered out, which it would do naturally. Everybody's lives moved on, while mine was static while I spent nearly two years battling this awful disease. Work had changed, my friends moved on (those I thought friends but turned out to be acquaintances instead). To be honest I felt very low indeed. I had taken up painting while having radiotherapy so decided to do the same here at home, I had to make a routine for myself or I was going to go 'stark raving bonkers' sitting at home with Jeremy Kyle and Co adding to my depression. I sat down and wrote out everything I like doing. I made a list (Im not really a list sort of person) but it was helping me at the time. I got rid of all negativity in my life including people who dragged me down with either gossip, begrudgery, or just plain depressing. Yep would you believe there are actually people who begrudge the fact that I am doing ok, spend time on hobbies new and old with an attitude of "well you did alright out of this cancer, retired and able to do what you want!" That one was shown the door quicker than a dose of the plague. Still I envied my Husband going about his daily routine to work, my children to school and work. I felt like the walls were closing in and I cried. I did cry quite a bit when I was on my own. To be honest, I also felt quite sorry for myself. The medical support that had carried me through this, my family who rallied around me, well here I was now very lonely indeed. I could have attended counselling in the local cancer support group, but that just did not 'float my boat' so to speak. I had to have a good talk to myself, and it was blooming hard. Reverting back to that list, I made myself up a form of 'timetable'. I allocated time for painting, reading, writing (just for myself, but I am getting lost in one story - who knows one day It could be published lol) I go swimming two and sometimes three mornings a week and go walking three evenings a week. I go to meditation once evening a week and I have also joined weight watchers. I have a handful of dear friends with whom I meet up for coffee and occasionally we book girlie weekends away, friends are now quality over quantity. My hubby and I have a 'date' night once a fortnight, and every six to seven weeks we go away for a long weekend. We have made a bucket list to visit every county in Ireland (32 of them), in three weeks time we visit county number 15. This gives us something to look forward to and has brought us very much closer together. And, things are better. I have taught myself to crochet with the help of youtube, and at 50 years of age, I have taken a liking to gaming on the pc. Laura Croft is my new pseudonym This has not righted itself over night and there are still occasions where I find myself sliding back down. When I do, which is now a rarity rather than the norm, I ring my Sister or one of my pals for a chat, not a moan, not a gripe about cancer but a normal chat and a laugh and that picks me up again. I have a website and a blog, I will give you both addresses and feel free to pop along and have a look. Hopefully you will find something there that resonates with you and gives you a helping hand. I have just realised how much I have waffled on, but in a nut shell, what you are feeling, in my opinion, is quite the norm. We all come out of it different people. I now appreciate being alive far more, I love nature and I am learning, slowly, to like my own company and doing my own thing. I hope I have helped in some way. My email is on my website if you ever just want to drop a line for a chat. Take care and I hope you find something that works for you soon.
I think the responses you have already had sum it up. It's ok to feel down as you have been through a lot. If it's getting out of hand and you can't stop dwelling on the negatives seek help. Talk to a friend, your doctor, seek counselling. You are grieving for how things were, how your body was. It is quite a journey. Over time you will see that you have achieved so much getting through to this point. You also have an opportunity now to change things in your life if you want to. Plan to do the things that make your heart sing, whatever that means to you. This is a new start, you have a new "normal" and it takes getting used to. Pay attention to how you feel and make time for yourself. Something you may want to try is to get a glass jar and each day write down on small pieces of paper the things you are grateful for. Perhaps contact from a friend, a compliament from a stranger, a nice walk, hearing the birds sing. It can be anything but write down at least one thing everyday and place the paper in your jar. When you have a down day look through what you have in the jar. You will be reminded that there is good in your life but recalling the positive memories will help lift your mood. Sending you much love. I know you have this. 😊 X
Wanted to tag you Anne but when I do my post vanishes!! Love the jar idea. Also writing down all the things you like about yourself. Also good to write down negative things. Gets them out of your head but throw them straight in dust bin or even better burn them!
I on the same journey with you. I was only on tamoxifen for five years and it did bring on menopause but they have now changed it to letrozole !! The side effects of osteoporosis pits me of and i have aching bones, not sure if it psychological 😀😀😀 I am also a bit up and down in mood still. I had mine in 2010 then reconstruction in 2011 and have now been working since 2012. Unfortunately I now got lymphoedema and wear a compression sleeve all the time...
There is light at the end of the tunnel 😀😀 good luck with your journey 😨😨👍👍
To all the women who have replied - thank you, for your support and your wisdom and your compassion and your honesty. You've made me laugh, and you've inspired me and you've made me feel more connected than I have in weeks xxxx
Try to get onto a moving forward class through Breast Cancer Care it covers so many topics and gives you the opportunity to meet people in similar situations. I found it really helpful x
Hi, your treatment sounds similar to mine as does the feeling of elation at the time, the adrenaline to get through it. I had herceptin injections that carried on for months after chemo ended and just before my last injection I was hit with this freight train of different emotions, my safety blanket of 3 weekly visits to hospital for the herceptin was being taken away and I felt alone and scared. I broke down one day and told my husband I didn't want to be here any more😢, so i rang my breast care nurse and told her just that so she invited me for a chat and from that was referred for 6 free counselling sessions which really helped and gave me a fresh perspective. I hope you feel brighter soon and remember you aren't alone and its expected to feel as you do.
It does pass. I was there last year this time.... the same treatments and surgery and radio and so on. Hopefully, it's not tamoxifin - because you are with it for 10 years. I think it was just our reaction to a big trauma. The primary caregiver is also not exempt from this feeling. But it does pass - try to get back to normal ordinary life slowly. There is much to be said about normal routine - specially during recovery. And you are still recovering. By the way, of you are on tamoxifen for 10 years, I don't think you are menopausal. You may not have periods, though - same like me. That's a great perk, I feel.😉
Hang in there... you WILL climb out of the trough.
There's a blood test they do to find out if you are menopausal. They track it when your age is right. And they change the meds once you are menopausal. 🙂
Hiya sash I have enjoyed 'feeling the love' in this thread, it has made me feel less alone not that I'm completely alone (any more). Just thought I'd share my antimdepressant with you it's venlafaxine and I like it 😜. I believe I can feel it working 😳 cos I know there are times throughout the day when I almost want to have a melt down from feeling overwhelmed. My 2nd breast care nurse pushed me back on counselling in Jan and anti depressants in Feb (despite my history as a depressive et al) so I went to my gp who was happy to prescribe them from March and in fact I started on Sertraline and changed to venlafaxine when starting tamoxifen because they clashed.
In June my (3rd) hospital RUH in Bath gave me a leaflet offering 6 free counselling sessions by a local-ish charity called We Hear You or WHY. Hopefully your hospital could give some guidance on counselling opportunities too? Also my 3rd hospital had a dedicated macmillan office with 3 members of staff and my 1st hospital Southampton had a lovely macmillan drop in centre on site too.
I had surgery Dec2016 then chemo Jan-may 2017 then rads june2017. I tried phased return to work last week but it didn't happen after all so feeling at a bit of a loss as I am better with routine (even when depressed!! 🤣🤣) but what I am doing regularly and enjoying immensely are a couple of exercise classes a week followed by coffee with my fellow ladies. It has proved very positive with my obstinate lymph fluid and cording and it absolutely suits me down to the ground. So as with Laineys painting and the lovely advice above see if you can find something to do that you enjoy, even if something new 👍🏻🙂.
I've recently come to the conclusion that we can be scarred emotionally as well as physically and have taken inspiration from a phrase above that the scars are a victory wound.
It's the simple things isn't it that help? And connecting with others. For me, that seems much more necessary now than it did during treatment... I'm not in the UK - we spontaneously decided to pack up our lives and head away to heal in the sunshine - so no one here has any idea that I've even had cancer other than one woman I told but reduced the entire traumatic year into a breezy one liner...
I can't stop touching my hair either - it's growing like there's no tomorrow!
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This has not righted itself over night and there are still occasions where I find myself sliding back down. When I do, which is now a rarity rather than the norm, I ring my Sister or one of my pals for a chat, not a moan, not a gripe about cancer but a normal chat and a laugh and that picks me up again. I have a website and a blog, I will give you both addresses and feel free to pop along and have a look. Hopefully you will find something there that resonates with you and gives you a helping hand. I have just realised how much I have waffled on, but in a nut shell, what you are feeling, in my opinion, is quite the norm. We all come out of it different people. I now appreciate being alive far more, I love nature and I am learning, slowly, to like my own company and doing my own thing. I hope I have helped in some way. My email is on my website if you ever just want to drop a line for a chat. Take care and I hope you find something that works for you soon.
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