Feeling anxious need some positive stories

lgray3911

Hi All, 
I don’t know where to start with this one. Am 38 with 2 small boys. Was diagnosed last Feb opted for double mastectomy, then had 4 Ac then 12 taxol then 6 weeks of rads. My cancer was oestrogen positive 30% progesterone neg and HER2 pos. I had 5/11 nodes show microscopic traces of cancer. Next stage is ovaries out on the 27th of March. I have been really positive through everything so far but the last week I feel like I am coming undone. Am really emotional and scared. I keep thinking about what after I’ve done all this stuff and it still comes back. Am in tears as I’m typing this right now. I really want to see my boys grow up. I feel so sad to think I might not have that chance. Need to hear some positive stories xx

Afraser

Dear Igray3911
With what you have been through, it is little wonder that (apparently without warning) your head just goes "Know what? Not playing any more!!". It's as much overdue reaction as anything else, but some anxiety about what next is pretty natural too. We mostly try to deal with it all - meaning we keep up an "in control" message for ourselves, our families, even our medicos! And just occasionally the tiger gets out.

Do whatever you need - howl, kick something inanimate, write it down (helped me). Then take a deep breath - the illusion that our lives will all run to plan has been taken away from you, and that's hard and unpleasant. But it is also an illusion. And how did you face losing that illusion? With determination and guts. And you will find that determination and resolve again, it's just slipped a little. 

I only had a single mastectomy and my ovaries are still there but node activity and oestrogen positive. I am past my 5 years, and I am fine. Yes, I think what if from time to time but it gets less. 

Best wishes.

primek

It's quite normal to feel very emotional after the whirlwind of surgery and chemo.  It's only after you take the time to breathe and really think about ...what if?

I felt like this. My herceptin was stopped early due to heart issues. I was very fearful if it returned...well what treatment can I actually have?  In the end I just chose to believe I was cancer free. It was the only way I could pick up the pieces of  my life and start living again. Is that  guaranteed?  No. There are so many variations and we just don't know  which women will have cancer return. No predictor can tell you that. What kept me going was my niece who was your age when she developed her2 bc. 10 positive nodes out if 20. She remains cancer free 15 years on. Her youngest just turned 18. 

So acknowledge you are scared. Let the tears flow. Acknowledge your  loss...grieve for your old safe life, your loss of your breasts, your loss of your ovaries. You have the right to feel sad. You will move forward.  It just takes time. And every now and then those fears will reappear. This is all normal too. I saw a counsellor for a few sessions after treatment. It just helped me accept its ok and allowed me to move on. 

primek

@SoldierCrab
@iserbrown
@Nadi
@adean
@melclarity
@nikkid
I'm  sure you ladies can share your experience in recovery.

SoldierCrab

hi @lgray3911

Like @primek I saw a counsellor after my treatment,
 as that is when I hit the wall emotionally. 
it is ok to cry and feel frightened. 
I am a survivor I am now 5 + years since diagnosis and I am cancer free. 
I have just been released from reviews and I am now dealing with the feelings of oh dear what if..
But I will concentrate on my NOW 
I have seen my young teens become adults,
I have begun reclaiming my life and health.

My story is diagnosed Sept 2012 with TNBC
So Oct 2012 surgery,
Nov 2012 ACT only 1 dose stopped due to allergic reactions
then onto AC stopped after 2 doses as I body was not coping ,
Paxitaxel 6 rounds stopped because of severe neuropathy. 
onto FEC 1 x full strength then 3 at 1/4 strength as body not coping.
6 weeks rads 
I was extremely anxious because of all the changes but I am 
NOW 5 1/2 years since diagnosis with no evidence of disease. 
Released from active monitoring by Team. 


You are entitled to see a psychologist under a mental health plan as Cancer is classified as a chronic illness.
Ask your Breast Care nurse for help finding one if need be. 

come here and vent we get it ... 

Big hugs 
soldier crab 

Zoffiel

Acknowledge how you feel and understand it is OK to be frightened. We do our best to keep it all together but the tension simmers underneath regardless of how hard you try to put a lid on it. Even if we play mental sleight of hand games with ourselves, the monster is still under the bed.
I refuse to keep anniversaries or keep track of the BC calendar any more. It does my head in. I've got people congratulating me on getting through the first year and it makes me want to see scream. I made it through 10 years NED then whammo...So, no more counting now. One less thing to stress about.
Concentrate on now, today, the moment you are in is the only truth for any of us. If you are sad, accept it. You have a right to your own grief and fear, but you will not feel like that forever.  Some little thing will make you smile and the spell can be broken. Just. Like. That. Mxxx

Sister

@lgray3911 What others have said!  Thinking of you.

Deanne

Since my diagnosis I have met quite a few women who have reached the 20+ year mark. One lady was diagnosed at 27 while pregnant. She was one of the first women to have chemo while pregnant. That ‘baby’ is now 23 and both he and his Mum are very healthy. Another lady diagnosed while in her early 30’s is also 23 years down the track with no recurrence. A family friend diagnosed 25 years ago has never looked back despite a very poor prognosis at the time. At the BCNA summit last year I sat next to a lady who is 30 years cancer free.

I myself had 6cm of ductal carcinoma (hormone positive) and 5 positive nodes (one with 7mm tumor). No clear margin between cancer and chest wall despite a mastectomy. Almost 5 years later I have just had another oncologist checkup and all is well. I too have had my ovaries removed since treatment. 

It is tough to find a way forward and to live well with that possibility of recurrence a very real one. My way is to accept that it is a possibility but to tell myself that I have done all that is medically recommended. To further help my mindset I live a healthy, active lifestyle as I believe (backed up by my oncologist) that this can make a difference. Then I tell myself there is no point to giving it too much more of my thinking time. 

I think it is normal for us to have moments of ‘what if’ but if those feelings are taking over then talking to a professional can be very helpful. Cancer has taken up enough of our life during active treatment, sometimes we need some support to put it behind us - where it belongs. We all have a lot of living to get on with. Wishing you all the best with your ovary surgery. I am sure it will get easier once that is out of the way. Thinking back I was all over the place emotionally before getting mine out too! Take care. Deanne xxx

jennyss

Dear @lgray3911, There's a few powerful positive stories above, and support - all the network members are here for you. Am thinking of you - best wishes from jennyss in Western NSW

adean

I agree with kath lm 6 years post . My girls were older l just wanted all the things mums want.next friday my daughter will be married. This week lve cried so many times, the realisation that lve got to 6 years and one of my wishes will be true. It takes forever not to worry and worry will always be there, 2 years ago l was diagnosed with a rare blood cancer also wtf l thought but l thought lve just got to try and push.good days bad days better days you do get there, but you need to ferl sad sometimes xxx

Sunshine0206

I hear you. I have some nodes and am triple positive. I’m starting radiation in March. I have a 5 year old.

I have spent a lot of time and I mean a LOT of time worrying about the “what if’s”. So much that it was robbing me of sleep and I had no joy in my life. 

I spent time with my therapist and decided that I needed to live now. For this moment. This week. I’m being happy now because I’m doing ALL I can to be disease free - the rest is up to fate and I can’t change, control or manage how it will unfold. 

What will be, will be and we will deal with it. No one has certainty. No one is guaranteed old age. We just have to live and love for this moment on this day. 

Xxx

Mollygirl

@lgray3911, give yourself permission to feel sad, mad, anxious, scared.  Having a diagnosis of cancer takes away our previous complacency about longevity. Did you ever think about not living to a ripe old age before ?  I know I didn't. It makes us realise that life is fragile. Treatment depletes our emotional reserves as well as the physical. 
Im so glad you've come on here for support. Perhaps because as mums do we hold everything back so as not to affect our families and those around us. Always trying to be  strong positive etc. well I believe that it all has to come out at some point. Perhaps your dam is not able to stem the flow so to speak, anymore. 
I wish I had a magic wand or even magic words - would you consider seeing a psychologist?  Talking to someone and not feeling guilty to offload to them did help me. 
Mostly I just want to say "we get you". Good days. Bad days. Scared some days. Positive some days. We get you. 
Much love and lots of hugs. Xxxx

lgray3911

Thank you all so much for your stories and the support. I really appreciate it. I went for a run in the rain and I screamed and swore and cried the whole way! Am feeling a lot better now although I may have been reported to the police!! Port Douglas is a small town so an angry Irish woman losing her shit in the pouring rain might get noticed!! 

Kiwi Angel

I feel for you and understand completely how you feel. I have had lump removals they were supposed to be nothing which has now graduated to a simple right sided mastectomy with auxiliary lymph node removal tomorrow. Most likely I will have to have hormone therapy and radiotherapy but waiting for results is going to be horrific - it is all such a new and scary experience that is such a learning curve. I am like u and strong most of the time but every now and then all the worst case scenarios get in your head. Great that there is a forum here which I will find of great use. Good luck with your treatment and be strong but realise u r only human and you will have your bad days. 

Nadi

Hi @Igray3911I have three sons.  In the past I have felt exactly the same way. The fear of the unknown can just consume every part of you at times. But it does get better. It will get better. You are still in flight or fright mode. The panic and endless fear is understandable. You have faced a life threatening situation and it's a HUGE deal. But it won't stay like this, as you continue with your recovery things will get better slowly. Sometimes you may feel like you are going backwards but then you'll go forwards again. Like the other ladies have said it can help to talk to a counsellor who has experience in dealing with cancer patients. I was able to see a psychiatrist attached to my public hospital who only sees cancer patients and it helped tremendously to know that others had felt the same and came through it.  It is coming up to 2 and a half years since my diagnosis. I had surgery, radiation, chemo with taxol and cyclophosphamide and 12 months Herceptin. I have changed my lifestyle, have lost 32 kgs and have done everything I can to kick cancer in the butt. 12 months since I started back at work a few hours a week I am now back stronger than even doing 50 plus hours and I feel great.  But I was a mess a while back, a total utter mess, crying all the time and fearing that life would never get better. I couldn't make a decision about anything, I felt lost and alone. But let me repeat, it does get better. It will get better. Hang in there. Just because you feel this way today doesn't mean you'll feel like this forever. I am now determined to make good memories with my three boys. I have taken all the photos out of the photo albums and put them under glass that I got cut specially for my kitchen table. Just looking at those every time we sit down to dinner makes us all laugh and laugh. We have family game night now every fortnight and that too is making memories. Next week all of us are climbing Sydney Harbour Bridge. If I am fortunate never to have cancer enter my life ever again, the memories I have made and continue to make will still be priceless. Sending you giant hugs.

brightspace

Hi ingray hope you continue to run in rain ..its just started raining down south near sydney temp is down to 17...not much on the tellie so have gone to the otherside.laughfter..ha ha two comedy nites in a row now its  jimoein on channel 11
All best 
Brighg in hope