Coping with uncertainty and waiting

Jennifer1982

Hi everyone,

I'm 33 and have just had a double mastectomy for what they think is high grade, bilateral dcis. I chose mastectomy over lumpectomy/radio.

I'm struggling emotionally less with the mastectomy and more with the idea of the disease.

Diagnosis to surgery was probably 3 weeks. I've been in hospital a week now with drains. Surgery went very well, I'm healing well, the surgeon is happy, physically i feel as good as i can, but it's such a big deal!!! I'm an emotional wreck.

I think that the main struggle is that sitting with the fear of the unknown. I've always worried about my health. I trust my surgeon and team, the hospital is amazing but I just can't stop worrying. I have been told that waiting on the original biopsy results is the worst time, but now I'm waiting on surgery results I'm similarly distressed.

When did you come to accept your diagnosis? Or, at least, when did you emotionally surrender to the process? What strategies did you use to cope/surrender? Is it this hard all the way or do you adjust?

Love and good wishes to you all,
Jen

Jane221

Hi Jen, you've had a lot to deal with in just 3 weeks so it's probably not surprising that you are distressed and overwhelmed by all the emotional turmoil that comes with the diagnosis and loss of your breasts. I think the physical stuff is easier to deal with in many ways, it's the emotional and mental battles that are the hardest as we try to adjust to being told you have breast cancer. Have you met your breast care nurse yet? They can be a great source of comfort and information and there may be some support groups in your area for you to connect with and talk to others who are in the same boat. My turning point came with my reconstruction, when I felt more in control of what was to happen, and in connecting with others on here and in my local area who understood my fears and anxieties. There is nothing quite like the support and understanding of others who have travelled this path so don't be afraid to reach out. For me, acceptance is still a work in progress, but as time goes on it does get a bit easier. Take care, Jane xx 

primek

I think once I started chemo I eventually  just surrendered to the treatment. I too was an emotional wreck and even 9 months on feel positive but have niggling fears of recurrence. Hopefully chemo won't  be on your plan. The reconstruction certainly helped with body image...but acceptance. ..well I think it just takes time, and it is different how long that is for all of us.

Jennifer1982

Thanks Jane and primek for your thoughts. My care nurse is amazing but I don't speak to her about how I'm feeling very often. I might give that a go!

JulieP

Hi Jen,  I've just been through the process.  April 19th had a regular mammogram and 1 week later had a bi lateral mastectomy.  It's 4 months down the track and I've had a total of 6 operations including a hysterectomy.  Once your drain tubes come out you'll start to feel a little better.  I have a very positive attitude and people keep telling me I'm amazing.  I don't feel amazing.  I did walk and run as soon as possible as it all helps me for my mental health.  If you only get out and walk a little each day it helps.  You can do this!  You can't change the future so don't forget to live in the moment.  Don't worry about things that might never happen or it will eat away at you.  Easier said than done I know.  It's ok to be sad.  I've had some days where I just cried all day.  There's no rules here.  Just make sure you talk to your dr if the sadness continues too long.

Michelle_R

Hi Jen,
 Just to add to the good advice from the others - a lot of us discovered how calming meditation cd's can  be at this time. Listening to them can help distil the panic, slow the breathing, change the focus and bring peace of mind, even temporarily.  I listened to them at night and the difference it made to being able to sleep was incredible.  I still keep them next to the bed 4 years later in case the worry creeps in, and they work every time.  There are plenty on youTube to try out - hope it helps through the difficult times.  It did help me.  xx  Michelle

Melhay

Hi Jen, from diagnosis to treatment is such a frantic time isn't it? There's so much to take in.

I don't think the waiting gets any easier - I've just had my 3rd surgery in 13mths & am awaiting results too. But finding activities to divert your attention can certainly help pass the time.

Some of the things that have worked for me in the past include: drawing, designing (I'm a jewellery artist/metalsmith) reading novels, going for walks/ runs, Photography (digital), listening to music, cooking, de-cluttering the house (selling things on Gumtree, throwing out stuff), cleaning, just 'hanging out' with my kids (2 teens), gardening.

Writing down your specific health concerns & talking to your GP, breast care nurse or Surgeon may also help alleviate some of the fear & stress you're experiencing about your Breast Cancer prognosis.

Remember to allow yourself time & space to grieve & find your way. You can do this. Take Care.

Mel xx

Jennifer1982

Hi Michelle and Mel,

These are all such great suggestions. Meditation and creativity certainly seems to help. I was discharged from hospital yesterday, but if I hadn't left I would have just participated in a music therapy session! & I did a little bit of sketching and writing in hospital. 

I do have a beautiful garden and today I centered coming home by cooking up a bunch of veggies that had grown up while I was in hospital. If it wasn't an extremely windy day on Sydney, I would have spent more time out there. 

Three surgeries, Mel, hearing that makes me really hey a sense of the process one has to be open to as well. There evidently isn't a quick fix! All the best making the most out of your waiting too.

All good wishes,
Jen x

Jennifer1982

Hi Julie,

Wow. Six operations... It is a process. Yes. Living in the present. That's the trick. I do think that it is the future stuff that really gets me as I was just building career/family as this hit and I suppose it's made me feel completely disoriented and unhinged. I mean, life is fragile at the best of times, but it seems more so right now. But I've realised that life is also precious in a way I took for granted before. That's something ...

Take care,
Jen xx

socoda

Hi Jen, 
Isn't it incredible the situation we find ourselves in through no choice of our own due to this dreadful disease. If its not enough that we have to go through such physical trauma the mind games we are left to play are a battleground as well. I personally have chosen to look upon this whole experience as a reminder. I need to focus on the good things in  life such as family, friends, my garden and things that I can enjoy. To stop rushing so much and to really set aside time to relax, and appreciate so many things. Possibly take up a new hobby - I have had a beaitiful violin for many years and learning to play has been on the list of things to do - I think its now time to sign up for lessons and plan for my future!! I'm intending on being around for many many years to come and I need to be so I can grow old disgracefully, run amok and blame it all on old age!!! Wishing you all the best for your wonderful future!! Xx Cath

InkPetal

Hello Jennifer,

Acceptance is a process, unfortunatley there isn't a time frame on that one.

Eight months in and it's still surreal for me, I'm still hovering a little outside of myself but it's more like that self has her feet on the ground now rather than being tugged along like a balloon.

My inbox is always open.

Bluewren

Hi Jennifer, accepted my diagnosis but emotionally think it will take a very long time. Also had right mastectomy coming up six weeks ago now. Still can't get my head around all this. Say I'm okay but what a nightmare .can I fully relax. No not yet. Passing of time it will seem to get better if we take a day at a time. recovery I do feel heaps better than I did a few weeks ago. Hope this is an omen as the week's pass I will accept more. Wishing you all the best in your recovery and sending hugs your way. Take care. maz.x x

melclarity

Hi Jennifer,

Theres such alot of great advice from these wonderful ladies. I have a theory that life is 10% what happens to you and 90% how you deal with it. This is an incredibly hard journey, so dont ever let anyone downplay a single thought or emotion you have. We all get through the only way we know how to, what works for one isn't for someone else. The beauty of all being different. I honestly dont feel you ever really accept it, I think we just get very good at being proactive in our decisions and treatments and marking things off our lists. Ive just dealt with a recurrence that came back at the 4yr mark, completely devastating....and so my emotions are very different to first diagnosis. This has been a much harder reality, 9 months post chemo and facing a mastectomy early next year as preventative. I never looked back after treatment now 5yrs ago....but now there is a fear deep down if this is the end or is there more to come. There are absolutely horrible days! but there are equally wonderful days...and I find now as I feel better and better that the more involved I get in my life and enjoy it, the less I think about the future. It is so key...the most important thing I could say to you is, allow yourself to feel, honor yourself and make YOU the priority. This really seemed the time for me to finally do so...after always putting me last! I feel sad a little that its taken this double journey to make myself a priority and put me above everything and everyone. But in a strange way, Ive found myself more than ever...and I just love me through this everyday, my own self nurturer I guess...especially when I feel you only have yourself. Breast Care nurse is a must!!! wonderful wonderful and so helpful! it took me a year to go to mine and I burst!!!! Take care of you..know you are doing the absolute best you can and 'You are enough' 
Hugs Melinda xo