It’s harder and lonelier now that I’m in remission. What’s that about?

Summer Prevails

Hi everyone

I’ve never posted here so please forgive any newbie mistakes. I wanted to start asking some fellow warriors some of the questions I find I cannot get answers to, from myself or any of my beautiful medical team. I’m just gonna dive in with this one:

Am I a freak for feeling totally alone and abandoned AFTER I’ve come through my treatment and am ‘healthy’ again?

It feels like I was so supported through the whole journey from devastating diagnosis to chemo to surgery to rads to hormonal therapy to physio.....and now that I’m doing much better, and I’ve had a complete clinical response (HECK yeah) and I’m achieving great things - nobody is there for me anymore. I still suffer greatly with (sadly invisible) mental illness/post trauma and with frustrating boring horrible ongoing treatment consequences. So why is it so hard to have support after the actual cancer storm has passed? Is it just me or is it incredibly lonely when you are supposedly ‘fine’ now, and superwoman, and ‘an inspiration’ and all your previous support systems fall away? It’s like none of my close friends or family have the same empathy and care they showed when I was sick, yet I feel so destroyed by everything I’ve been through still, and have no one to turn to anymore. Feels like breast cancer didn’t kill me but it killed the dynamic of all my close relationships instead. 

I'm feeling quite depressed by this experience. I hope someone can identify or share some wisdom. Thanks for letting me get that off my chest (no pun intended). 

xo

primek

Well I've chosen to believe I'm cured or NED...rather than remission. ..which means you still have cancer but it's not active....unless of course you have metastatic bc.

However that's me.

Oh it's hard to pick up our life threads. I think in some ways it must be like the returned soldier. Imagine just coming home and returning to normal life. We are only now beginning to understand how difficult that is. BC survival is a battle. We are the mentally wounded soldiers...and just like them finding a new focus helps.

I found supporting other women with bc diagnosis helped me. You could consider this forum or joining local groups or fundraising groups. 

I also focussed on my weight reduction  so I am a member of a private group of women who support each other and share our struggles regaining our health.

Shifting your focus brings purpose back and then suddenly one day ...you realise you think of yourself as a SURVIVOR. Because once we believe....well...we've got our life back again. 

kmakm

Hi Holly. My psychologist (who specialises in treating BC women) told me that 50% of women with breast cancer go on to suffer from depression, and that more often than not it strikes when active treatment is finished. So no, you are not a freak! I'm not at your stage on this rollercoaster yet but I am very aware that this is going to be a problem for me.

You might be interested to know that my psych also said there was a study being conducted comparing the emotional trauma of a breast cancer diagnosis to PTSD. Apparently they are remarkably similar. Hopefully this will one day lead to more support and effort being made by clinicians to the mental damage BC causes.

I wish you all the very best and hope that some of the other wonderful women here can assist. Be kind to yourself, sending hugs. K xox

Molly001

I believe it's a fairly common thing, what you're feeling. For me it's a feeling of knowing I've come out the other side different but everyone expects me to be the same as before. I'm really struggling with a sense of being held back when I really want to move forward. No one seems to get it or really want to listen. I have a psychologist, too, who's helping me a bit. There are also post treatment programs and, of course, the bcna helpline if you think it might be helpful.

Brenda5

Holly you can post in this forum any time you want to and pretty much about any thing. That's what its here for. I am wondering since our cancer scare, did it scare all our loved ones into living their own lives to the fullest and we sort of got forgotten?
It's up to us to find things we enjoy ourselves. It doesn't have to be big like a world holiday. Just a new jigsaw puzzle challenge is good. There is a song, some days are diamonds, some days are stone. Very true sometimes during our lives. Look forward to the diamonds.

Romla

I too found life post active treatment very hard.I felt lost afraid and alone tbh.At my lowest point I managed to call the Cancer Council who arranged Cancer Connect within 3 days which was a turning point for me.A lovely lady from Queensland rang me who had had my type of cancer some years beforehand and spoke with me for an hour.The life In her voice as well as her conversation made me realise my life would continue and it was still good.I realised I had to look outside myself and I started to take steps to do so.

I joined a local breast cancer support group for a while.Most were many years down the track than me both since their treatment and in years.I listened to their stories .I learnt about Encore as well as an online course conducted by Flinders Uni to help with post treatment.I learnt about Look Good Feel Good .I learnt from one little remarkable lady in her 70s who was 20 years plus post treatment how she walked every morning at 6 am for an hour and how much it helped her. We live in the Hills btw too. What has meant the most however is to be able to walk about my community and see these women living their lives.

I started to participate on this blog rather than just read posts.The warmth and kindness shown to me has been heartwarming.I try to reciprocate now to help a little if I can. I find the acceptance on here and understanding quite special.

I have rattled on a lot on here about walking which I do daily for an hour as I find it helps a lot both with how I feel emotionally as well as physically.I hasten to add I have never been athletic . I am on Letrozole as am Er+ and it also helps with joint pain.

We have both been lucky to have support systems that rallied during treatment - not all do.However we are expected it seems to return to our previous lives yet the experience we have had has changed how we feel about ourselves - it has been a big blow to our confidence. I don’t think we can change others but we can ourselves by opening ourselves up to new people and activities like I mentioned above.It does not mean we abandon our previous life but just modify it .Now my family regard my daily walk as normal and my husband is used to me tapping away on this blog .There are many of us out there going thru similar feelings - share with us as we get it and there are many ways to do this.

Afraser

It's natural for people to take special care of and interest in loved ones who are unwell and facing great uncertainty. It's equally natural for that high level of attention to go back to whatever was normal before when the danger seems to have been faced and overcome. And not very pleasant for for the one who feels lost and abandoned at that stage. I didn't have that experience myself, but with some lifelong side effects I did feel a bit confused about how my life was going to pan out after treatment. It took a few sessions with a good counsellor to reach the apparently simple answer - you didn't go through all this to be sad or to lose control of your life. My sessions with her weren't many or expensive but talking to a stranger is a wonderful way of cutting to the essence of what is wrong and how to make it right. I hope you too can get some help to feel good again. We don't hesitate to see a doctor about our body and our emotional wellbeing is every bit as important. Best wishes.

SoldierCrab

hi @Holly Prevails
it is quite common for us to feel that way.... I did  like several others I have seen a psychologist and she has helped me through the trauma of going through chemo etc .... I also found being part of a local support group has helped as I see ladies who are 15, 30 and 40 yrs from diagnosis and that gives me hope. I now 5 + years later call myself a survivor... survivor-ship is hard like primek I am involved in a group that supports others who  have had bc and are now reclaiming their lives... be that with weight management or resuming exercise and healthy self care choices... 

People who have not gone through BC diagnosis assume that when our treatment is over we are back to our old self.... we all know that is not the case....it takes time... 

How long is it since you finished treatment?
is it relatively recent?  
If you are in NSW Cancer Council has the Enrich program for anyone who has had cancer.... 
Encore is available in most states of Australia

Ringing the Helpline at BCNA is  an option also 

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

since you seem to be new on the forum here are some helpful links 

Breathe and take it one step at a time. 

The what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If
you have any questions, concerns or require any further information or support
please call 1800 500 258.  The Helpline is open Monday, Wednesday and
Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST

jennyss

Dear @Holly Prevails, nothing to add to the great info  and support above; just best wishes from jennyss in Western NSW

Romla

@jennyss and that matters most - your kind thoughts

Summer Prevails

Wow I am overwhelmed at the insight and thoughtful care you guys have written to me, thank you so much ❤️ I do feel like a war torn soldier in a way. It is so hard to fit back into an old way of life once you’ve seen the darkest side of things, I completely identify with PTSD. Even though I haven’t been shot at or forcefully harmed, I really believe the trauma of B Ca is triggering the same type of symptoms. 

It’s been 7 months since I finished my 33 (?lost count) blasts of radiation. I started on Zoladex and Exemestane not long after that. I got severe joint stiffness and pain and depression with it, so my Onc decided to give me a washout period for 6 weeks. Now I’m back on Zoladex and have to trial a different AI drug. Sigh. And I’ve watched my self esteem go from invincible and so proud of myself, to the lowest of the low over these 7-odd months. 

Ive been seeing an awesome psychologist for years before cancer, because I’m bipolar type 2. I also see an amazing psychiatrist, I have two incredible breast care nurses, and my GP is also just amazing. I am SO LUCKY to have all of these brilliant women on my side. I’ve just never felt so alone through everything in quite the way I do now, so I am so glad I posted here and have found other women who are practically word for word describing what I’ve been through! 

Writing this with a migraine so i might I might have missed some points I wanted to pick up on, sorry. Brain scrambled! But yes AFraser I like the word ‘danger’ that you used, because I very much feel the sense of threat always - yet the threat is over for everyone else except me. I’m struggling a lot with how to express to my fam and friends that I still have that danger mindset? It kind of bleeds over from treatment into a different kind of urgency, but is very misunderstood if that makes sense? 

Romla i also love long walks I try for an hour a day. 30 min or at least a stroll on bad days. I think you’re right about opening ourselves up to new things. I have done more things that take me right outside my comfort zone post treatment than I ever would have before so that’s a positive. But I guess I’m just really heartbroken that the way things were with my body, my friends, my work, my energy...all have been altered so much and I wish some of those changes had been positive too. I have lost closeness with people. I grieve for that still. But maybe it is like the beginning of a better stronger type of life? It’s just very hard to let go and move forward sometimes. 

x o hugs and thanks. I will keep writing. This has been so helpful. xo 

kmakm

Please do keep writing Holly. You're very articulate.  You write very clearly many feelings I have had/am having. I'm sure many others here have had them as well.

Heartbroken is a good word. The old life is gone and we're sitting in the ruins. The new life that will come may be good, worse or OK. We just don't know and we need to grieve first. I have struggled with the enforced change to me that this disease has imposed. I have been deeply resistant and now I just feel lost.

I can feel a retreat from friends and family within myself too. I have read that this is a normal reaction, but it doesn't make it any easier to manage. I look forward to the day when it won't be there.

We're in the trenches knee deep in mud. We have to look up and see that there is blue sky up there, or at least know that it's waiting when the clouds part. K xox

Zoffiel

Hi @Holly Prevails 
I've had two bouts of BC --Version 1 and V2. I , too can identify with what you are saying. V1, I had all manner of trouble with surgery that went on and on (still have issues) but mentally I was OK. Maybe that was because I was still part of the system long after chemo and didn't feel so much like I'd been cast out on my own. By the time I'd had 7 surgeries I was well and truly ready to get the hell away from the medical system.

This time has been very different. In the intervening years two of the founding members of my Team Titty have died and I feel like everyone else is getting a little jaded. '''Again, Marg? Really?'. Physically I'm taking a very long time to recover which, of course, impacts on my mental health. Its not doing my bank balance any good either.

I also have a long standing relationship with a shrink, but I'm struggling to afford to see her, and I'm not sure that there is much she can do anyway. OK, maybe we could continue some anger management stuff and work on my coming to terms with my situation, but while I'm still seeing my broken body as the problem I don't know that's useful either.

 Its the everyday stuff--I try really hard not to be a downer if I'm asked how I'm doing. What do you say? Perhaps that why some people don't ask, they can take one look at me and go, 'Nup, I don't really want to know.' The other end of the equation are those who keep bloody asking in the hope of getting some bad news, I don't feel like being the exclamation mark at the end of someone's story about the people they know who have cancer. They can get stuffed. See, no wonder people are conflicted about how to approach the subject...

Keep plodding and treasure the good hours. They are there, it's just too easy to focus on the dark stuff. I'm going to plant more trees today. Nothing says 'Hope' more than planting a garden. Mxx

Nannatash

I hear ya year I feel the same lonley no one seems to fully understand the how we feel with or new look n the mental side and surgery's n test lucky we have girl power x

Summer Prevails

@Zoffiel

I’m really sorry you had to deal with this twice

adean

I will be 6 years this year and as the appointments get further apart l wonder what the feelings will be? Today 2 of my ladies in my support group were taken of all their meds and no more appointments now that would be very strange.