Hello, I’m new to the network even though I’m well past finished with my treatment. I even have almost enough hair on my head to call it a bob, sort of. I finished the mastectomy/reconstruction/6 months chemo/ 6 weeks of radiation about 12 months ago. I don’t even really know how to write this, other than when does it get better? I had no idea how hard it would be once the treatment was done. All that stuff the nurses warned you of was just theoretical noise at the time. It feels like none of the ‘normal’ people I know really has any idea what it’s like and just expect you to get on with it. Pre diagnosis I was early 40’s, long hair ( pah, who didn’t!) career going really well, running marathons, and then, boom. All gone. I’m left with a Frankenstein body, crazy hair, and a very high chance of it recurring. I should be feeling great. I can run long distances again, I have hair, I don’t have cancer. I still have a job. Yet it’s a daily struggle. And I really do get that life can be so much worse and I’m actually quite lucky, yet......Anyone else like me out there???

I'm 2.5 years since diagnosis and 2 years since chemo.I had a bilateral mastectomy and tissue expanders inserted. I've only just had nipples made...but still not finished.Whilst in treatment we really are just going into fight or flight mode. Cut and burn so to speak. Only now do we start to reflect on what we've lost.We've lost our breasts forever.Our hair might be back...but it's not the hair we had.We might be fitter again but the vitality isn't quite there.Our sense of safety in our health is probably gone forever.So yes....it's bloody hard.Especially when we hear of others not making it. It brings back our own fear, makes us angry and feel guilty we are still alive and well. Sometimes I feel we are on a war path with snipers picking us off one by one.Allowing yourself to grieve is okay.You're allowed to feel sad.You're allowed to miss your body as it was.You're allowed to hate your hair now.Eventually it will move on. You will think about it less. Mostly. Every now and then those old fears will sneak back.I cut off my weird hair to a new style...and thankfully it is no longer curly. The colour is different so I have got streaks in it. It was f u weird hair I'm cutting away my chemo curls and embracing the new me. Figuring out what that new me looks and feels like took me another year. I don't have all my vitality back but it's closer. I'm making future plans again. It's certainly an emotional ride and one that takes time and we all do it differently. No right or wrong way to do it.Take care.Kath x

Hi @12paws, I think it’s getting better at the 4 year mark. I still have up and down days and sometimes use this site. I think about cancer less, and am getting back to full health. The threat of it coming back is always in the back of my mind though. I’m trying to work full time and to plan to travel somewhere nice once a year. I hope you start to feel better soon. I think the one year mark was difficult for me and I was tired for about 2 years. I had the same treatments as you and I was 42 when diagnosed. Don’t be tough on yourself, you’re doing well. It’s a really tough road, but it does get easier. x

Far out! I still miss our dogs (18 and 19 when they passed) and we haven't found the emotional strength to replace them yet! We do have a cat that thinks she is a pup and follows us everywhere and calls out like she has a broken tail if we get too far ahead of her - we live on acres and she loves it! Animals are so soothing - did anyone see the story of the Magpie called Penguin on Sixty Minutes last night?As to the daily struggle, that's what this forum is about, we get it! Our dear friends and family assume that we are back to normal as our time between appointments lengthens. No, it just brings on scanxiety and everything else in between! Fatigue is real and hits us unexpectedly even though we maybe eating correctly, doing some exercise et ceteraIt will get better as time goes on! Be kind to yourself, rest up where you need to, don't feel bad if you want to cop out on a coffee date or whatever - this is about you! I find now that family don't even ask how am I, do you have an upcoming appointment, as when they see me I look normal and I don't bring it up unless they do. Recently my baby sister was diagnosed with Cervical Cancer and hence the questions came and when I said that when I first met my Breast Surgeon, he said you will be my patient for the next 10 years, silence came! They hadn't realised the depth of it all. Feedback the next day from other sister confirmed this.Whoops this is about you not me but you get the picture, we all feel altered and a little distant from our old lives!Don't know where you are or if you are aware of the Otis Foundation - they offer free holidays for us, just need to get there and provide your own food.https://www.bcna.org.au/services-and-support-groups/services/the-otis-foundation/

Hi @12paws,sorry you are here but so glad you found this wonderful forum. I have seen psychologists on and off all my adult life. I am booked in with a cancer council counsellor (say that 3 times quickly!lol) tomorrow as I am only at the start of my BC experience but feel myself slipping. Maybe if you feel you have reached a road block with your current psych you could try a new one? Just a thought. To answer your rhetorical question.......I don’t know why it’s so hard but it bloody well is and it sux. I can relate to feelings of having so much to be grateful for but just can’t be. You have got this far, you are obviously strong and determined. You are gutsy just for sharing.Take care.xxx

Hi @12paws,You are definitely not alone as you can see. This is the part that is not in the listed side effects.That feeling of "I should be grateful" "I should be doing something spectacular with my life now, I've had a second chance" I am close to two years on from surgery and over 12 months from active treatment. It does take a while and 12 months is not long in the big picture of what we've been through. I renounce the "new normal" and it can shove off. I'm looking hard for my old one and that in itself presents problems.Life has gone back to the daily routine. Sometimes that ticks me off and sometimes I am thankful it kind of has I guess. Family and friends think you're all ok once all the nasty treatment is done, a bit like getting over the flu. You were sick, you got treated and now you're better. The thing is though, we never felt sick before all this.It is hard to explain that your head just isn't the same. However, yes it does get easier to control those thoughts of recurrence; they are there, but less frequent..However, I am more compassionate now (mostly he he). I tell myself to slow down more often, be a bit more observant and appreciate the small things. I say yes to all invitations without thinking about it where once I would have been too busy, didn't want to spend the money, couldn't be bothered or too scared to try something, I will go and do it, try it , spend it, whatever. It takes an effort sometimes but I always enjoy myself when I make that effort.I no longer take shit from anybody.Actually, I think BC may have given me some kind of tourettes. LoL Fuck it.Keep on trucking lovely. Big hugsxoxoxo

Why is it so hard? | Online Network

Eli86
Member
7 years ago
Hi @12paws I’m at the other end of my journey so I can’t offer you any insight sorry, so I’m just sending you a giant virtual hug instead. xx
AllyJay
Member
7 years ago
Hi there @12paws ...it really sucks doesn't it. They can take their "journey" and "your new normal" and shove it where the sun don't shine!!! Not that long ago, I sat on my (brown) hair and spent my weekends packing parachutes for credit, and dive bombing out of basically anything that would get me to 12000 ft and that has a door. No more. Now this befuzzled titless wonder sits with her explosion of white frizz...I look like a somewhat rabid and decrepit sheepdog...and knit. Fuck that!!
12paws
Member
7 years ago
Oh @allyjay I so agree with shoving the ‘journey’ where the sun don’t shine
Anonymous
7 years ago
Hi @12paws, I think it’s getting better at the 4 year mark. I still have up and down days and sometimes use this site. I think about cancer less, and am getting back to full health. The threat of it coming back is always in the back of my mind though. I’m trying to work full time and to plan to travel somewhere nice once a year. I hope you start to feel better soon. I think the one year mark was difficult for me and I was tired for about 2 years. I had the same treatments as you and I was 42 when diagnosed. Don’t be tough on yourself, you’re doing well. It’s a really tough road, but it does get easier. x
kmakm
Member
7 years ago
Hello 12paws. It sucks eh? I'm fairly new at this survivor business, being three months past my last active treatment. Having BC gets described here a lot as a rollercoaster. Well I say the rollercoaster continues. I always knew this time was going to be difficult for me and it is.

Yesterday at the Plan B Conference we had a speaker on post BC wellness. She said you will feel better but it takes time. One of our number (@Zoffiel was it you? Having a brain fart here...) asked (and I'm paraphrasing) 'how long do you have to feel like crap for before you reach this mythical time?' The speaker, a doctor, said if you experience feeling significantly down or stressed to the point that it is affecting your normal activities or emotions for longer than three weeks, then you should seek help.

So maybe it's time to speak to a counsellor or psychologist? Did you have a breastcare nurse you liked? Perhaps you can ring her. Or the BCNA helpline on 1800 500 258. The women who are on the other end of the line there are wonderfully kind and helpful. Maybe find a support group so you can hang out with people who 'get' it.

50% of women diagnosed with BC will also develop depression and the time when this is most likely to occur is after your active treatment has finished. The similarities between PTSD and a BC diagnosis are currently being studied because they are almost identical in how people psychologically react.

So I think all the same advice holds true now as it did when you were going through treatment. Be kind to yourself, put yourself first a bit more, do something that makes you happy everyday. Breathe. Please don't suffer in silence. Reach out in whatever way you feel comfortable with. Stay in touch here. We're with you. K xox
12paws
Member
7 years ago
Thanks @rose18 and @kmakm. It’s good to know @Rose18 it does get better. I do have a psychologist to talk to. It certainly is a roller coaster. I was doing okay ish, then last week we had to put our old dog down which seems to have knocked me about. Thanks for listening!
kmakm
Member
7 years ago
We love our pets so much don't we? I love the pets discussion thread we have here. If you feel like it you can pop a picture of your dog on there. K xox

https://onlinenetwork.bcna.org.au/discussion/comment/144194#Comment_144194
Anonymous
7 years ago
Oh @12paws, I’m so sorry to hear about your dog. Thinking of you. x
Zoffiel
Member
7 years ago
I think many of us identify with that feeling @12paws I sometimes get the guilts and think 'You ingrate' but the whole thing is overwhelming and the feeling of disappointment is very real.
I recovered very quickly from my first bout of breast cancer--chemo and a double mastectomy with implant reconstructions then 5 years Tamoxifen. I had heaps of surgical complications but I never felt unwell. Tired and a bit frustrated, but life went on and two years later it was really only the scars that remained. This time, it's been much harder, which was not what I had expected. It's 15 months since I finished active treatment (more surgery, chemo and radiotherapy) and I'm not at all the same woman I was. It is very annoying and I chaff at myself, wondering if I'll ever wake up and smell the roses. Lets hope so. There are many things that can tip the scales and change 'I'm doing kind of Ok' to 'this sucks'; losing your canine friend is significant when you are well, but on top of all the rest, it is a very big deal. Keep plodding on, it's all we can really do. Mxx
Artferret
Member
7 years ago
'Give yourself a break' and 'Be kind to yourself' and 'it will take 12 months for you to get your emotional shit back together'. These are the 3 things i kept saying to myself because it wasn't just me with a cancer diagnosis it was my husband too(stage 3 prostate cancer but all is good now) and 12 months on for me i was right(sitting here bawling my eyes out over the field of women). It does get easier but it takes time. I didn't go yesterday, i could've...should've...but even being at the forum on Saturday was emotionally draining and i felt good in myself that i got there. I'm really glad that you're running again as i find exercise is the one thing that got me mentally back on track and in control again so 3 times a week finds me at the gym and I've gone back to pilates. And I'm sorry about your woofy, 12paws, we had to do the same with our beautiful 11year old cavvy, same year as diagnosis, i still miss him, he was such a gentleman of a dog. It doesn't take much to knock you about emotionally because i find I'm a much more emotional person now which really pisses me off but it's just part of the new me and I'm better at controlling it except for last week, too many things happening at one time and they always come in threes (dad's anniversary, reminders of first surgery this time last year and the forum).
So, be kind to yourself, hang in there and know that you can talk to us anytime.
Best wishes, Cath