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So glad to have found this site!

So glad to have found this site!

Posted by MChild on May 6, 2019 3:32 pm

Hi everyone! I’m 35, and was diagnosed with Ewing’s Sarcoma October 2018. I’m on round 8 of 14 chemos. I’ve already had surgery, but we did not get clear margins. Does anyone have any experience with that? 
I’m Looking forward to reading through this amazing site! 
Michelle

Re: So glad to have found this site!

Posted by Cynthia Mac on May 7, 2019 9:11 am

Hi, MChild‍ , welcome to Cancer Connection. I’m not familiar with your type of cancer, but there are discussions here on the site for various categories - breast, head and neck, etc. If you go to the discussions thread and do a search, you will likely be able to find a discussion. The search tool is quite good, I’ve found.

Hopefully you’ll connect with someone who also has or has had Ewing’s sarcoma. If I can be of further help, just reach out.                       
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: So glad to have found this site!

Posted by Jojo4 on Dec 29, 2020 11:29 pm

I was diagnosed with soft tissue sarcoma. Was on this site prior to surgery and haven’t been back on since. It’s been a tough journey and it was a rare sarcoma in a rare spot kind of feel alone 
 

Re: So glad to have found this site!

Posted by Kims1961 on Dec 30, 2020 12:01 am

Jojo4‍  Welcome back!

How did surgery and recovery go? I know for some, adding in COVID worries, has made the journey that much more difficult. 

You mentioned feeling alone is that due to the rare sarcoma?  Was your medical team able to answer your questions, so if you feel you have a good understanding of the treatment plan? 

The beauty of this community, is that we meet the COVID rules - at least for here in Ontario ( we are in a lockdown). I found being able to read other responses, or ask, vent, share, really helped me to feel more connected. I used the outdoors during the day, to help with anxiety and stress and in the evening tried to busy myself with “busy” tasks - like knitting, puzzles, or cleaning up.  What has worked the best for you?

So glad you posted.  We are here. KIm
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: So glad to have found this site!

Posted by Brighty on Dec 30, 2020 12:01 am

Welcome  back Jojo4‍ ! How did your surgery go?  Where do you stand now  in terms of treatment?    What are the next steps?    Let us know how we can support  you.     
Help is out there. All you have to do is reach out.

Re: So glad to have found this site!

Posted by Jojo4 on Dec 30, 2020 9:58 am

Surgery went so much better than expected. When I was asleep they opted to try a different approach not normally done and they were able to remove the sarcoma, rebuild the muscle around urethra no no urostomy and anal sphincter intact so no colostomy as originally planned. They did have to remove the whole left side of the pelvis and the ischial bone so the hip flexor muscles that were connected to that bone no longer are connected lost part of the hamstring and another part they reconnected to the back of the femur and they took a 16 by 10 cm piece of muscle, tendons nerves ets from my left inner thigh and put it into the craitor the tumour left behind thus creating my flap. It was a 10 hour procedure but it went well. Left leg very weak, feeling like it’s not attached. Still turn every 2 hours at night so interrupted sleep has become my norm. Don’t hear about anyone having this type of surgery it’s so rare. 

Re: So glad to have found this site!

Posted by Jojo4 on Dec 30, 2020 11:56 am

Feel alone more because of COVID. I don’t need any more treatments at this point just follow up.my cancer was rare and in a rare spot. 
 

Re: So glad to have found this site!

Posted by Brighty on Dec 30, 2020 12:37 pm

Jojo4‍  yup...totally understandable.     Do you have any hobbies? There are  a lot of classes you can join now that are on line.  Book clubs, art classes ,exercise  classes.   You can also have zoom meetings with friends  and play games and have zoom parties....I've also found covid friendly ways  to see friends. A walk outside...6 ft. Apart.....pulling up on your car with a friend  in their car..getting a treat and chatting from tbe window.... ice skating  is also happening these days...I've been going.  You have to book the rink first.   But it's another  way to get out and see a friend  if you both book the rink at tbe same time...  
 How about getting a pet? I have a chubby fur ball named Vinnie and he is my best buddy.   Great company.     Keeps me on my toes.   He snuggles one minute then bites me the next.     I know its hard with covid..... kind of have to think outside the box to find creative  ways to get around it.     So glad to hear your surgery  went well.  And of course  you can log on here.   There's always  someone  willing to chat.   I'm up till late hours of the night so log on if you want to chat.     Likely I'll be around.    





 
Help is out there. All you have to do is reach out.

Re: So glad to have found this site!

Posted by Jojo4 on Dec 30, 2020 4:31 pm

Thanks. I have been looking at online things as with the surgery I can no longer ride a bike or skate or any activity that could result in me falling on my left leg or anything that would cause an impact on my left leg. I am slowly adjusting to my new normal 
 

Re: So glad to have found this site!

Posted by Boby1511 on Dec 30, 2020 5:05 pm

Jojo4‍ 
hi there, glad your surgery went well. No further treatments? Good margins then?
I too have sarcoma. Mine came with sarcomatous overgrowth, which just means is was over 25% cancer.
I have had chemo and will be doing radiation.

Re: So glad to have found this site!

Posted by Whitelilies on Dec 30, 2020 7:49 pm

Jojo4‍ Hi Joanne....I am so happy for you, that the surgery went well......yeah no ostomy....healing will take time.....be easy on yourself....
As Brighty‍ mentioned.....there is a long list of things you can do/her list is amazing, easy, simple, and cost friendly......why not? Probably even some courses online....learn....get a diploma or certificate.....use this time in your favour....heal and learn!
Regards
Whitelilies