Hello

ribohm

I'm Ingrid from Ottawa. I was diagnosed September 2016 with HGSC stage 3 recurrent ovarian cancer. What a ride it has been! It had metastisized to my stomach. I had the complete hysterectomy, debulking and chemo. To date I've had 4 lines of chemo (6 treatments each, 3 weeks apart). I finished my last line in January of this year. I'm waiting for a CT scan to see what the tumours in my abdomen are doing. At the end of this line of chemo they hadn't changed in size. 
So far, besides chemo no other treatments/drugs have been prescribed. I have read about other treatments patients go through and wonder if I'm missing something...
I realize that every patient is different. The question I have is if the tumours are still there (3) why wouldn't they do another surgery? Is that something that is done? Sometimes I wish that I had a person with me during my appointments that better understands the system/disease that could ask the questions.
It would be nice I think to talk to someone who is going through similar experiences as I find that I don't always talk about my cancer as it can get a bit dark at times and I'd rather spare people the thoughts.

Strongwoman

@ribohm
  Welcome to the Teal Sisters!  I am sorry to hear about your diagnosis.  I am glad you have found us. 
  By the sounds of it you are looking for a place to talk openly and learn more.  You have found the right place.
Before I reply to your message, I am throwing this quick one out so that you may be able to join us today,
On Thursdays we host a Teal Thursday chat at 1pm. It is open to discuss anything on your mind, what you are going through and/or are feeling.  Hopefully you will be able to join us today. Just click on the discussion thread Teal Thursday and join in.  I look forward to seeing you there should you be able to join in.  Just refresh your page to see new threads and continue on with the chat. I will get back to your message you posted shortly.  I will be hosting the discussion today.

Strongwoman

@ribohm
  Hello again.  I did not want to rush my reply to you as I want to give it the attention it deserves. At the same time, I also wanted you to be able to join in the group chat should you be able to and participate.
  Welcome again and sorry to hear about everything you have been through.  First, I want to let you know that there is a link that I will give you to a FREE copy (either digital or paper) that is entitled By My Side.  I found it very useful and full of information when I was first diagnosed.  Here is the link:  Ovarian Cancer Canada - Support and Resources (ovariancanada.org)
  In answer to your first question, my guess is that they (your team) will wait to see what your CT Scan is saying before they recommend anything. So do your best not to fret too much, they will have a plan for you, they may have an idea but will confirm once they see your latest CT Scan.  You are HGSC which means there are still many treatment options out there for you yet. I do not believe they have exhausted their arsenal yet. This is good news!  
  It is a very good question as to why not do another surgery. Write it down for your next meeting and ask that question. Some reasons for not performing another surgery are: too many risks involved where the tumour(s) are currently, risk of spread, etc.  So feel free to ask your team and ask.  It could be a case, they want to save it for a later time or if they need to intervene for other reasons regarding organ involvement.  I am not sure in your case but your team will know.
  Now comes the issue of support for you.  Have you inquired with your team if there is any supports available to you?  If not have you tried contacting Wellspring?  Here is the link to it as well. It is full of resources and they may be able to help guide you along as well. Wellspring
  When you say you find it difficult to talk about your cancer because it gets "dark" at times, what does that mean to you?  Being diagnosed and going through cancer is a battle and it takes us places we never thought we would go before.  It can be wearing on oneself emotionally, mentally and physically.  Let us know if there is an area you are particularly having difficulty with and let's see if we can assist or direct you somewhere that can.  
  I look forward to hearing back from you.

ribohm

Thanks@strongwoman! I guess when I did my intro post I was a little dark. Didn’t mean it to go that way but, once the words started flowing… 
I do have support via a counsellor that I talk to every couple of months. I think it’s time to make another appointment with her. Thanks for the insight, links and information it has helped calm whatever storm seemed to be brewing in my head. A chat with my counsellor will further settle the dust.
I think it’s the unknown that tends to work on the psychic the most. Having someone to help navigate through it all is most helpful.
So. What did I mean by dark? When I was first diagnosed I made a promise to myself and my family that, when the time came, I would not prolong dying. I have applied and been accepted in the MAID programme. It’s my way of having control over this disease. Since the paper work has been done it seems so much more real to me and that is why it’s time to talk to my councillor. That’s it really.
I tried to join in on the chat today but was unsuccessful. I will use my laptop next time instead of my phone. I really look forward to connecting with others and just hearing their stories. I am always pleasantly surprised on how like minded we all are. 

Strongwoman

@ribohm

  Please don't apologize and I did not think that when I read your post. What I did think was someone reaching out to a community of people going through some similar issues. I will say, I, for one have had my 'dark' moments as well. I would think that most have. It is hard not to especially initially and also when we sit in 'unknowns'.

  I have done a lot of reading on death and dying and have a friend doing a course currently on becoming a death doula. I have learned a lot throughout it all and continue to learn. I have learned MAID is not the only option and that if one does not apply, it is fairly smooth process to have the application go through compared to before. I learned about Palliative sedation as well. Most of all, I have learned that the choice is ours to make. I, personally, have changed some of my thoughts on it from my reading. Some of the books give me a lot of food for thought. I work with a Palliative doctor as well so we revisit this scenario as my condition changes. It helps me a lot. What I have learned I don't want is the opportunity for my hubby and boys to miss out on  having some meaningful conversations along the way which will help them with the grieving process.  Interestingly enough, I recently read an article on a woman who chose MAID (brain cancer) but before her day came she taught her hubby how to cook, kids other things etc. The day of her chosen date she did laundry, tidied up, had a bath, came out and said "I am ready."  What all of this says to me is that we can empower ourselves on this journey esp the latter part. That is enlightening to me.
  I have done most of the legal stuff needing to be done and now am working on my 'legacy' stuff when I feel up to it. Like I mentioned in today's chat, one does not have to do it all alone. Let others help you with some of it. Like photos, memory books etc. If one even wants, you can dictate and someone can write. 
  It is all there. Pick away at what you want to and feel up for. Make informed decisions and enjoy what is in front of you. Like how the sun peeked out after the rain today. Or how I saw a Robin in my backyard today. I feel like I view things with more child-like eyes now instead of glossing over.  It isn't always rosy and the darkness does creep in. It's okay as long as it doesn't linger too long.
  Glad you found us and hope this site helps you along your journey. 
 Take care of YOU!

ribohm

You said it sister@strongwoman! I did call my counsellor today who will be referring me to a group called fear of recurrence which is exactly what I could benefit from! Talked to an old friend yesterday and the sun is shining today. What more could you ask for?
I do take the small joys out of each day. Today it was a pair of robins but one cannot avoid being brightened listening to all of the birds singing. 

I’m glad that I have taken charge again. Kicked the rabbit out of the hole. Little things go a long way. Have a good weekend!

Strongwoman

@ribohm

  Wonderful! Glad you have made your contacts and supports are in place.

Sun NOT shining here but that's ok. Taught my youngest son how to put together a lasagna from scratch earlier today. Part of my legacy work. My oldest one cooks for a living so only one to teach.

  Well I have a Robin that keeps coming to my office window at home and taps on it. This occurs daily. Interesting eh?