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Hi Everyone,

   I am starting to think a lot about the upcoming conference that begins next Friday (!). I believe there will be a panel discussion about survivorship. I will be interested to hear if the discussion covers mental, emotional, and physical survivorship because I believe all those components are vital to well-being. I would like to ask you if those components were provided or offered by your medical team? If not, were you given resources that you could access if you wanted support? Or, were you left to figure things out for yourself? 

   I am thinking about resources besides OVdialogue.  

Thanks! 

Hi@LeslieA, great question.  At the beginning of this journey I was handed the cancer booklet from the cancer centre, I'm sure similar to most here.  The one with the list of contacts if you have questions about treatment, meds, diet, and counsellor, etc.  that has been about all the info I received. no ones has ever asked me how I am coping mentally, emotionally thru all this, the diagnosis,the treatment, side effects, the after, the monthly lab work, the scans.  I have kept a lot of that to myself.  The physical stuff if often discussed in appts.  I remember when chemo was finished, my husband sat in the office room and said, " now what, we just live?"  And my doctor just nodded….

Thanks for this Meinvan. I also received a folder of general information about chemo and managing side effects. Luckily I have a GP with oncology training who was seeing me every 4 weeks to review blood work and side effects. She gave me as much time as I needed to go over things (95% physical) and I appreciated that. I talk to my oncologist over the phone every 6 months and the call lasts 10 minutes.

I now see my GP-onc every 2 months, and that feels like flying without a net sometimes. All the extra support that I needed I had to find myself. I just wish that there was a better integration of body-mind-spirit (as we interpret that) in our days of survivorship. 

@LeslieA similar to @Meinvan I received a very large bound booklet regarding my surgery, recovery, chemo, recovery etc. that also included contact info relative to those items. I did also get connected by my team at PMH with a therapist for my mental health, who I've utilized for the past two years. She, as a result of our discussions, helped connected with a sexual health group (at PMH) and nutritionist (at PMH). My oncology team also connected me with the allergist who is helping me work through my medicine/CT contrast allergy issues. I am aware of other resources available via PMH that I could take advantage of if I needed them e.g., dieticians, workshops on a variety of topics etc.  I believe there is a lot available to me for my physical, mental and emotional needs from PMH. I know that I'm very fortunate in that regard. 
 
I got connected to "Live Good, Feel Better" from my oncology team. As for "Wellspring", that was by my GP who is one of their volunteers. 

#Healthandwellness

Alwayslearning, it sounds like you have had what I would call integrated support at PMH. That is fantastic and no doubt helped you immensely. There are so many pieces that we need tending to. It isn't just medical; healing pertains to our many dimensions.  

@LeslieA I think it's likely a benefit of being at a major cancer research centre in Canada. I know not everyone has that same opportunity and even I travel for 3 hours to get there. It would be nice for every patient, to have consistent access to resources. There is a long way to go that's for sure. I will definitely be interested in what you learn from the "survivorship" panel.

#OCCinfoandupdates #Healthandwellness

Hi all...last night OCC hosted the first in a three part series on "Survivorship". Last night's focus was on Exploring Survivorship: Life After Diagnosis. We heard from three great speakers, including an OCC Patient Partner in Research (Christa). The session was recorded and if you weren't able to attend OR want to revisit (I know there was a lot of information shared) OCC will be posting it in a few weeks. I'll make sure to highlight it when that happens.

I'm wondering if anyone had any key takeaways from the session? Here were a few of mine:

1. It was important to see that the term 'survivorship' is not confined in a box. It is a fluid term that encompasses so many facets including treatment, beyond treatment, physical, emotional and cognitive challenges etc. Ultimately the term is multi-dimensional and defined by our own paradigms and experiences. As such, we are seeing focus in all of these areas as it relates to support and programs.
2. We all have fear and uncertainty in our journey. These aren't bad things however, what's important is to prevent them from being the primary organizer of our lives. I know...that can be easier said than done but even Christa said from her experience, "deal with today and try not to get ahead of yourself". 

I'd love to hear but resonated with others.

#Resources

@lbarr72 thank you for sharing the areas that resonated with you. I have many of the learnings you noted written down in my notes. I'm very fortunate as Laura Foran is my therapist so I've been part of the CALM program for a few years now. Even so, I learned so much from her session. She/I focus on what's important to me in our sessions so some of the more 'general' concepts don't necessarily creep into our discussions. The session helped educate me so much.

I agree with your comment on people who see us and on the surface they think we "look great". They don't know, understand, or appreciate the internal struggle both mental and physical that we endure. I relate so much to your comment that we don't want to 'bore' them with the constant fear. I keep a lot of my emotional struggle to myself, even from my husband. I have learned however that when I'm dealing with physical issues I'm much more transparent and I am tired from trying to 'hide' pain. So I will let it be known I'm not in a good place. It's helped me find a balance of not making it all about 'me' while also ensuring I'm getting support when I sometimes need it. I also know I've got the Teal Sisters in this forum who will always listen. I know I say it a lot but I truly mean it, you guys are a lifeline of support that can never be replaced!!

You keep that good fight going @lbarr72 and know we are always walking beside you!!!!