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

@jennyss and that matters most - your kind thoughts

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

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

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.

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.

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. <3

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.

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

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.