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Struggling with chronic condition & survivorship
613jessie
1 Posts

Hi there,

I was diagnosed with a reoccurrence of chronic desmoid tumours in February 2020 at 32 years old. I underwent chemotherapy for the rest of year in isolation. I finished treatment in December 2020. Previously, I had a sarcoma in my left breast in 2006 and several large abdominal desmoid tumours in 2016.

After such an isolating and lonely year, I am really feeling lost and struggling to find people who truly understand me and what I’ve been through. I am still mourning the person I was before pandemic isolation and treatment. I have never had a cancer community or cancer friends despite living with cancer for the past 15 years. I am hoping to find a support system and true understanding here, especially with those with chronic conditions or who were first diagnosed as teens or young adults.

Wishing you all good things,

Jessie

2 Replies
ACH2015
2050 Posts

Hi @613jessie

I saw your post and could automatically understand your feelings and where you are at mentally with coming to terms with your situation. Mourning the loss of who we were pre cancer / pre and post treatment and now post covid 19 will be challenging for all of us. This all on top of dealing with a chronic or incurable condition. Not easy to do.

Your multiple diagnosis's and treatments can be difficult to keep fighting through. During my recurrence, I was speaking with a social worker at the cancer center, and one thing she said was to make sure you empty your emotional bucket regularly. Allowing it to overflow can make it tough when it all dumps out at once.

Finding understanding about what you are going through emotionally and physically, this site is a place to find that understanding and empathy with others that “get it”. As you've discovered people that have not gone thorough this type of experience look at us and figure its simple to pick up the pieces and move on. I think of myself as a rusty car with a new paint job. Looks are deceiving, and I long ago gave up trying to describe the new normal to outsiders. So know you are in good company here. Take some time to look around the site, the different groups and forums, and you will be struck by posts that identify so much with your experience and situation - as I was with yours.

Have you ever considered joining an in person group? I know right now they are on line until they reopen in person. I see you are in Ontario. Gilda's club has two clubhouses with multiple groups that people share their experiences during ongoing sessions. One in close to PMH in Toronto and the other is across from RVH Cancer Center in Barrie. Your hospital may also have in person groups / social workers that do group and 1 on 1 sessions.

For me, right now I don't feel like I fit in anywhere. still between two worlds. I was diagnosed with Stage IV metastatic adenocarcinoma of unknown primary origin in 2016. Went through surgery / chemo / more surgery / then radiation. A recurrence two years later involved (failed) immunotherapy, another surgery and large doses of prednisone to fix the damage done by the immunotherapy.

I am sure you can push aside the fears, anger, mourning for periods of time - and all of a sudden, you are right back to where you were. Our coping strategies will work, need new tools, have gaps - and times we just need to get through the rough patch until the storm in our minds pass.

So, hopefully you feel understood now - I understand you, and others will here also. Take some time - look around and post your feelings and thoughts for others that “get it".

Keep well

ACH2015

JustJan
740 Posts
613jessie‍ Thanks for sharing your story with us. ACH2015‍ has provided you with some
great insight.

I was diagnosed with breast cancer at age 59 in January 2019 followed by a diagnosis of ovarian cancer just a few months later. I had two surgeries, radiation and chemotherapy in less than a year. My breast oncologist told me that it would take at least 6 months to a year to recover from my treatment. It took all that time and more but I am definitely feeling more like me. Cancer has changed me and I will never be back to the person I once was and I am okay with that. It has made me realize what is important and what isn’t.

Do you have any interests that you would like to explore or hobbies you like that you
can immerse yourself in? I found this to be helpful in my healing.

Be kind and gentle with yourself. You have been through a lot and need time to process it all and heal. We do get it and we are here to listen and support you. You are most definitely not alone.






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