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Next steps....not so good

Next steps....not so good

Posted by IamJay on Aug 10, 2020 6:24 pm

Hi 
i really don't know where to post this....I'm numb
I had my follow up appointment to talk about PET/CTI scan results. Is anyone able/willing to talk to me about upcoming surgery to remove mucosal Melanoma in my vagina.
They say that they will remove my bladder, vagina, rectum and anal sphinchter, and do a complete hysterectomy.
This will leave me with two stomas, one for urine and for bowel. 
Maybe I need to talk to someone in three types of cancer ....colorectal, bladder and gynecological?
 

Re: Next steps....not so good

Posted by Laika57 on Aug 11, 2020 12:12 am

Hi IamJay‍ 
I'm sorry you got such bad news. we had a neighbour years ago who had that same procedure done. She made it through the surgery and did fine for the next three or four years. Even went back to working (she is an insurance broker). We left town around then and i am sorry to say we fell out of touch, so i don't know how she is these days. I suppose i ought to track down her number...
i greatly admired her strength and determination. And I hope you can find a measure of those for yourself.
all the best.
Karin
Have you hugged your dog today?

Re: Next steps....not so good

Posted by a3a on Aug 11, 2020 1:04 am

IamJay‍ 
So sorry you've had such devastating news.  I am thinking of you, and wishing you strength in the days ahead.

Sending a big hug from Vancouver Island, and best wishes for a good recovery after your surgery. 

Ginny
 

Re: Next steps....not so good

Posted by Kuching on Aug 11, 2020 8:05 am

IamJay‍ , that really sucks.  First thing I would do is get a second opinion - does everything really need to be removed, or would it be worth trying chemo or radiation first?  I haven’t a clue, but I would definitely ask if I were you, especially if your appointment was with a surgeon - they tend to see removal as the answer to everything.  The hysterectomy is no big deal, but the rest is going to change your life quite a lot.

Maybe it won’t be so overwhelming if you look at each issue separately, see what will be involved in living with it (or without it!), and then say yes, I can handle that bit.  Don’t try and think about all of it all at once.

 Sorry I can’t be of much help, just wanted you to know I’m thinking of you.  Hopefully there are people on here who have been there done that, and will be able to help you.

Re: Next steps....not so good

Posted by Lacey_Moderator on Aug 11, 2020 10:55 am

IamJay‍ 

I can definitely understand feeling numb. That was not the news you were expecting, impossible to be prepared to hear that life altering news. I'm sorry. I'm glad you posted and are reaching out to talk to others-that shows great strength. 

It sounds like it would be really helpful to talk this out and process this news with someone. Our Cancer Information Helpline is available to talk with you 1-888-939-3333 they are so knowledgeable and can help you navigate through this. I hope you give them a call. I can't say enough about how compassionate our Information Specialists are. 

I like Kuching‍'s suggestion to break it down and think about each part separately. Also if you are interested it is your right to seek a second opinion. Use our search bar at the top of the page or in the drop down menu on mobile to search for key words in discussions. This is the easiest way to find people. 

Here are some discussion topics that might interest you:
Mucosal Melanoma: https://cancerconnection.ca/search?query=mucosal+melanoma
hysterectomy: https://cancerconnection.ca/search?query=hysterectomy
Stoma: https://cancerconnection.ca/search?query=stoma
Ostomy: https://cancerconnection.ca/search?query=ostomy

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Posting and sharing this news was a big step to processing it. We are here to walk beside you even if it is virtually.

Sending hugs,
Lacey
 

Re: Next steps....not so good

Posted by Whitelilies on Aug 11, 2020 8:18 pm

IamJay‍ Hello (again)
Please know that I have responded with ideas for support on "another" reply.....under "not many recent posts here".
I hope you can find it/see it.  I am sending EXTRA sized strength your way!
Do you have a surgery date yet?
My surgery was called the L.A.R. (Lower Anterior ReSection)
Another member here had A.P.R. (Abdominal Perineal ReSection)
Perhaps the Hysterectomy will be done first? Then heal? Then the other areas follow?
Try as others have mentioned....to take it all in....day by day.....step by step.......We are ALL HERE for support.

Warmly
Whitelilies

Lillian

Re: Next steps....not so good

Posted by IamJay on Aug 12, 2020 9:49 am

Thanks Whitelilies‍ , Kuchinga3aLaika57Lacey_adminCCS‍ 
one step at a time seems to be a good bit of advice....hard not to look too far into the future and wonder if I'll still be able to do the things I enjoy. My biggest worry is that I won't be able to go on the long kayak trips that I've been doing. I know that I'll find a way to make it all work out though!
Thanks for your thoughts, suggestions and kindness. I will be off work now starting today so will be able to start processing this more and taking care of my emotional and psychological self while waiting for more consultations.
xo
J

Re: Next steps....not so good

Posted by Lacey_Moderator on Aug 12, 2020 10:29 am

IamJay‍ 

I'm glad to hear you don't have to worry about work and you are planning on focusing on your emotional health. 

I can't help but share resources 😊

Coping When you Have Cancer: https://www.cancer.ca/~/media/cancer.ca/CW/publications/Coping%20when%20you%20have%20cancer/32127-1-NO.pdf



I hope that with time and healing you will be back to those activities you love.

Take Care,
Lacey

Re: Next steps....not so good

Posted by Whitelilies on Aug 12, 2020 7:01 pm

IamJay‍ Hello
You WILL be kayaking before you know it!
I will give you the Kayaking Award!
"Run The Stout"
"Send It"
(I googled Kayak Slang for you ! )

Keep strong......keep posting....

Regards
Whitelilies

Lillian

Re: Next steps....not so good

Posted by Peterpatch on Aug 12, 2020 11:13 pm

I had lumpdectomy and sentinel biopsy in April, radiation until June 15th. I kayaked Monday with my grandgirls. Yes it was calm and not really far but I am doing it and swimming a little farther each time I go in the lake. We need the attitude to kick Cancer in the butt and set physical goals to help deal with a Covid-19. Wishing you the best of the best!

Re: Next steps....not so good

Posted by IamJay on Aug 13, 2020 12:52 am

WhiteliliesPeterpatch‍  

Im kayaking and camping this weekend then will pack it up till
next year....it'll be my insentive to recover quickly! I will also keep the memory of laying with my 3 yr old grandson last weekend....will do more with him next year!
Thanks for the support and for googling kayak jargon! 

Re: Next steps....not so good

Posted by Samiam on Aug 14, 2020 1:51 pm

IamJay‍ what your going through sucks, am I correct you also just dealt with breast cancer as well?

It seems overwhelming to be facing so much at once, but it seems like there can still be quality of life even with these surgeries. It's amazing what we can do when we put our minds to it. 

I cant speak to any of these but wi be keeping you in my thoughts and prayers. If you ever need to talk, please feel free to reach out.
Sandy. 
 

Re: Next steps....not so good

Posted by IamJay on Aug 17, 2020 11:33 am

Thanks Samiam‍ 
 

Re: Next steps....not so good

Posted by Lacey_Moderator on Aug 25, 2020 10:47 am

IamJay‍ 

How was your camping and kayaking?

Thinking of you...

Lacey

Re: Next steps....not so good

Posted by IamJay on Aug 26, 2020 10:16 am

It was great to get away. I’ve been lucky to have been able to enjoy some of my favourite activities while waiting and attending appointments!
tomorrow is the last appointment (radiology this time) to discuss options for radiation. Then I think a final meeting with the team before making a decision about next steps. I’m hoping radiation will be a good option so that I can avoid the big surgery.
Thanks for checking in Lacey_adminCCS‍ 

Re: Next steps....not so good

Posted by Lacey_Moderator on Aug 26, 2020 11:04 am

Good luck tomorrow IamJay‍ 

Let us know how it goes. My fingers are crossed for you my friend!