Post Treatment Letdown

Cory51

I am just over a year from my initial diagnosis of breast cancer. I had a lumpectomy and node clearance a week after diagnosis, started 6 months of chemo about 4 weeks later, radiotherapy about 6 weeks after chemo and DIEP breast reconstruction 5 weeks after finishing radiation. I am now just over 10 weeks post surgery and I'm feeling a real emotional letdown. I was so ready to move forward with my life after the recon and I just can't seem to feel much more than 'stagnant'. I am 68 years old. I had a hysterectomy at a very young age and was on HRT for 37 years before diagnosis, so I had a good quality of life, an active sex life and had not obviously experienced menopause. So I went from all those years of HRT to no HRT in a day and then 9 months later started taking Letrozole. So now not only the menopause journey of no HRT but my body has stopped producing any oestrogen at all from the Letrozole and I am really feeling the change. 

I feel like I should be happy to be alive, the cancer is gone (mastectomy margins clear) and I am taking a drug to hopefully prevent it from recurring. But I just feel flat. I got the all clear to start back exercising at 6 weeks post op so I have been back in my exercise physiology class (for women with cancer or post treatment), and yoga classes for a few weeks now. So I am exercising and doing well in classes, increasing the challenges each week. I hit a real tired place about 3-4 in the afternoon; sometimes I get a second wind about dinner time, sometimes I don't. I've never been a great sleeper and that hasn't changed much. I guess I should be thankful that I don't have hot flushes or night sweats. But I miss having any sexual desire, I miss feeling like myself or what myself used to feel like. I get that this is a transition time for me but I am struggling with the new normal.

The highs? Well I have a supportive family and great friends but sometimes it's hard to explain these kinds of feelings to someone who has never experienced them. I looked for an in person support group but never found one that seemed appropriate that was local to me. I was on the Breast Reconstruction Group here at BCNA and found the support I got there when I was deciding what to do was fantastic. Have others who have had a similar journey to me felt these same feelings? I am trying so hard to be positive and I do feel positive overall but there are also these other feelings that aren't so positive. I think in part I need to just work through the feelings, feel them and keep going one day at a time. 

Thanks for listening; it helped to just write this down. Jenny

kmakm

Hi Jenny. I'm so sorry you feel this way. Deeply sorry because I feel exactly the same. I think a few others will jump on and confirm that this is not at all unusual.

I came out of my BMX & DIEP feeling resolute and a little optimistic about rebuilding my life and making some positive changes. But after three months this had faded away and my mental health was deteriorating. Survivorship is not easy and the aftermath of breast cancer diagnosis & treatment can be complex and overwhelming.

This is due in no small way to the complete withdrawal of estrogen in your body. I'm on Letrozole as well. Depression is listed as a side effect, and fatigue. And you'll have the latter anyway from chemo & radiation... Estrogen interacts with serotonin to produce feel good chemicals in our brains. Hard to do when there is none.

Everyone around us expects us to be happy it's 'over' and to bounce back into everyday life, often with a greet-the-dawn-with
-a-yoga-pose-on-a-clifftop type of enthusiasm. It's boring and difficult to explain how you're not due to a cancer diagnosis/breast removal/menopause/medication side effects.

I have no answers. I am struggling. Everyone who's been through it tells me it does come to an end, that I will eventually get better. Everything about BC seems to take time. It schools us in patience.

I am chasing down every method of alleviating any of my suffering. I've tried magnesium, krill oil and curcumin supplements (only the latter had a slight effect) which work for some people. I'm on antidepressants for the first time in my life and see a psychologist. I'm currently trying acupuncture and today have got a referral from my GP to the Menopause After Cancer clinic at the Royal Women's.

The 13 months since active treatment finished has seen me edge closer to acceptance that this is my lot now. That seeking to make it better is a fool's errand, but to instead focus on coping. It's been slow and intensely hard, but a small shift has occurred.

Baby steps Jenny. It's not long since you've had a huge surgery. It takes time. Can you plan a holiday, or something in the medium term to pleasantly anticipate?

Do you have a psychologist that you like? A few sessions might help. As writing your post made you feel better, a few chats with a counsellor might help in the same way. Mine suggested journalling when I feel especially bad. I never thought it would help, but bizarrely it kind of does in the moment. By writing them down it places some distance between you and your thoughts. And reinforces the fact that that you are not your thoughts.

There's all sorts of things you can try. And as always, different things work for different people.

I wish I could help you more. Just know that what you're feeling is very normal. Let it all hang out here, we get it all too well.

I am not who I was before breast cancer (read my bio for details), and adjusting to and accepting that is profoundly complex. I've only now in the last month, started to feel I've taken my first step down that path. The pain is in the struggle.

I hope you feel better soon. K xox

PS I didn't fancy any of the support groups in my area so I started my own! It's been fantastic so far; is that something you could see yourself doing? Just had lunch with one of the women who is having her recon tomorrow. I needed cheering up and she needed distraction. Worked a treat!

kezmusc

HI @Cory51,


It blows you away after all the active treatment ends.  All the goal posts have been ticked off and you are like....now what.  It's a pretty normal part of the rollercoaster.  To be perfectly honest, I never once entertained the thought that I would not be ecstatically thrilled and return to my "normal" life.  And, of course I was going to make every minute count and be happy happy happy with a "second chance". I should be grateful, right?  What a rude shock survivorship turns out to be at the start.

The libido thing, well that's just sad and depressing.  I jump on and off my medication regularly and a big part of that is to stop feeling numb in that respect.  

The rest of it does improve a bit with time, but it does take a while.  
  No body else will really "get it" their natural thoughts are that your treatment is over and now you are better and back to being yourself.
We know where your at, this unexpected feeling of drifting not quite knowing how to "recover" or move forward. The where did the old me go?  She's in there and slowly but surely with a bit of tweaking of things and a lot of ups and downs she'll be back.

Big hugs lovely lady.
xoxoxoxox

Cory51

Thanks K for your thoughts. Yes I do have a counsellor but I probably haven't used her as much as I should. She is great and I saw her last week, before I 'hit the wall' today! I would love to come to your support group! Are you in Melbourne by chance??? xx

Cory51

My oncologist said I could take a drug holiday because I'm having a lot of GI symptoms that she is not sure are Letrozole related or not because I had them during chemo too. I guess I am only 4 months into Letrozole and going off even for 6 weeks she suggested seems scary. I am going to have both scopes to rule out anything else going on in my gut and think I'll wait 6 months into Letrozole to see if the side effects settle. My stiff fingers aren't as bad as they were the first 3 months so hoping the GI stuff will resolve too.. I do feel like a holiday, so need to think about that. I didn't think I was unusual but nice to hear others feeling this too, not that I wish it on anyone! xx

Cory51

It feels so good to get so much support so quickly, so thank you all so much for replying and sharing. Means a lot right now..xx

Brenda5

After treatment I was diagnosed with PTSD, anxiety and depression. I was put on antidepressants but I had a reaction on them so ended up doing the medicinal cannabis oil instead. My PTSD hasn't surfaced in a while now so hopefully its done and dusted. The other two come and go but I get back to normal quickly now.

Sister

@Cory51 all of the above.  The old me is gone, there doesn't seem to be much of a new normal (besides which, I don't want to be new) - I'm just trying to find a space that I feel satisfied with.  And you can't really take anyone else along for the ride because it's only happened to you.  

iserbrown

@Cory51
Sorry to read your feelings of despair but pleased to see others are providing comfort with similar experiences.
It's huge what you have been through and quite intense with keep a diary for appointments and or treatments and then all of a sudden it seems to peter off and you find yourself saying now what!
Someone in the media recently spoke of how mental health isn't obvious as you don't have something to distinguish like a plaster cast if you've broken an arm. This is similar.  If you lose your hair through chemo it's oh goodness but if you get through without an obvious signal then the you should be okay response comes much sooner. 
Eventually you will find that happy medium with a bit of reflection and pat on the back, as it is well deserved for what you have been through.  Be proud and I hope your flat feeling subsides soon
Take care 

primek

I can honestly say, having gone through natural menopause (just prior my diagnosis) i felt like this. I didn't feel like me. I was also scared I would never desire sex again. I can't say I ever had the drive return...but with cuddling and a holiday we got our groove back.

Then along  came breast cancer. A bilateral mastectomy...expanders in. 6 months chemo. Letrozole. 7 months herceptin. Heart failure. 28 kg weight gain. Then 24 kg weight loss on optifast then changeover surgery. 
Only after the changeover did it hit me. No longer focussing on treatments and staying alive I then finally had to deal with what I've lost.
....my breasts, which were a big part of our lovemaking.
....my hair. Although has regrown it is not the colour it was and remains patchy with some areas straight snd some still curly. I've finally accepted 3 years on this is how it will stay.
....my energy. 3 years on it hasn't returned. It took me 6 months to be able to work full time again. I can put in a full work day but little energy for more.
.....my weight is up again and I lack the mental and physical energy to tackle it again.
....oh and let's not forget the big one...the health naivity....feeling healthy and confident of a good long life.

Surviving breast cancer is like running a marathon. It is a mammoth task. Some don't make it. Some do...forever changed. 

You have the right to grieve.
You have the right to feel fear.

It does get better (and sometimes worse again at times)

At some point acceptance comes and you go on with life....a different  life, forever changed. 

kmakm

My heart goes out to you @primek The biggest of hugs. K xox

Cory51

Thank you for sharing such intimate parts of your journey @primek many hugs from me too.. xxx Jenny

jennyss

Dear @Cory51, thanks for expressing your thoughts and feelings so well. Your words were encouraging  to me, who is two  years on. You are being positive, specially saying 'I think in part I need to just work through the feelings, feel them and keep going one day at a time'.

from jennyss in Western NSW

Cory51

Thanks @jennyss, my counsellor is very supportive of feeling the feelings, not hiding from them or boxing them up and putting them somewhere in a compartment and not dealing with them. That attitude/strategy has been good for me as it made me realise that feeling down or awful some days is ok, feel it physically and then it is easier to move on. I think too I get impatient and want to feel better right away and sometimes that isn't possible. The Headspace app has helped me with that too, let go of resistance instead of saying 'be patient' which has never been helpful for me as it makes me feel that something is wrong with my feelings. Letting go seems more positive than 'BE' something. 

kmakm

I have found Headspace to be very helpful as well. Excellent app.

Cory51

Yes I just kept repeating the Coping with Cancer one over and over while I was in chemo....