Retreat and Move Forward
How could sitting for most of the weekend be so exhausting. Dr. T seemed pretty adamant that Jerry and I attend a retreat with other gynecologic cancer patients and their spouses. When I got the information, it seemed that the retreat was for women who had already had a recurrence, but I figured I'd probably have one eventually, and I was anxious for Jerry to meet other caregivers.
The retreat started Friday evening. The 11 couples introduced ourselves and we talked about what we hoped to get out of the retreat. Jerry and I really had no expectations but my biggest hope was for him to meet and talk to other caregivers. It was a diverse, interesting group. There was a couple in their 30s, and a husband about to turn 89. While all the women are Hopkins patients, few were local to Baltimore. Several couples came from Virginia; it speaks to Hopkins' reputation. We ate dinner together and started to get to know each other. I was surprised at how many of the women continued to work during treatment. It is true they are younger than me, but just the thought of it was exhausting.
The center itself was beautiful. It is run by an order of nuns, and some retired nuns live in one wing. We ran into one of them in the elevator and she was delightful. I must say the Catholic Church does seem to know how to take care of its own.
After dinner, there was a session where we had to come up with one word to describe ourself and one word to describe our spouse. For me, I said realist, and for Jerry, steadfast. He described me as adventurous. I have to say all the women had wonderful things to say about their husbands, and in turn, the husbands described their wives in glowing terms. I suppose we were chosen for this retreat because while we were all getting along well, the hope was that we could do even better.
After the session we retired to our simple room. No television, but WiFi and a comfy bed. There was a yoga session in the morning, which we (and most everyone) skipped, then breakfast. There were several retreat groups so we sat at our assigned tables and continued to get to know each other.
Perhaps the highlight, particularly for the men, was the session where we broke into groups of our own gender. Women do this all the time— we have support groups both in person and on line, but men don’t have nearly the opportunity. The men got to be vulnerable. They let down their guard. They cried. My only regret, and this was expressed by many, was that there was only one such session. We all needed more.
One woman attending, and I don’t think she will mind me talking about her, had just had her first recurrence after 18 years. Needless to say, she was devastated. But the session with just the women gave us all a chance to talk about living with cancer, not dying from it. I have great optimism for her. She beat this once, stayed cancer free for 18 years, and I think she will do it again. She went into this recurrence strong and I believe her body will once again fight it off.
Other sessions included yoga Nidre, which I admit we, and other couples skipped, and a meditation walk. While that was nice, considering our limited time together, they could have been shorter. I understand the need to de-stress, but there was so much to get done!
One session I wasn’t looking forward to was led by one of the hospital chaplains. It was titled something along the lines of spirituality and courage. I am not a religious person so I was thinking we were going to hear a sermon, and I wasn’t too excited. How wrong I was. The woman, a Methodist minister engaged us perhaps more than anyone during the weekend. We discussed hope and optimism, and their differences. And I think we all left the discussion feeling more hopeful and optimistic.
We had a session with an oncologist, and heard what we all knew: treatment had not changed significantly in more than 20 years. Part is money. There aren’t as many of us as there are breast cancer patients. We don’t make as much noise either. That being said, she did discuss some trials and other treatments on the horizon. While there is no “home run” currently available, it’s being treated more as a chronic disease, with each treatment giving us more time until something else comes along.
My least favorite session was art therapy, mostly because the woman who led it seemed like such a downer. Perhaps it’s the way she always talks, but I kept expecting her to burst into tears. I spent most of that session chatting with the woman I was sitting next to. I got far more out of that than my “self portrait.”
Our last gathering was bittersweet. We were exhausted, wanted to get home, but didn’t want to leave each other. One man commented that if he had to be stranded on a desert island, this was the group he wanted with him. We discussed forming a private Facebook group and staying in touch. And I think almost everyone in the group was motivated to do so, though time will tell. We are back to the real world and our real lives, and I have seen good intentions like this go by the wayside. But this was not a cooking class who vowed to stay in touch. We belong to a club no one wants to join, and no matter how recently we joined or if we are founding members, we are hungry for information and connection.
My sleep last night was dream-filled and a bit stressful. I’m not surprised. So much is going on in my head. Hopes, fears, agitation, frustration. Other than hope, that doesn’t sound positive, but in its own way it is. I need to take advantage of this psychic energy. I told Jerry we need to plan travel sooner than later, and we can’t avoid making our will. That sounds negative, but it’s realistic. I know none of us know how much time we have left, but this disease does make us more aware. But what I want to be aware of is how am I LIVING my life. We discussed leaving a legacy, and I honestly don’t care about leaving a legacy. But I want to make a difference today. Whether it be through comforting a homeless cat or dog or baking a loaf of bread. And I want to keep paying it forward. Mentoring a newly diagnosed woman or raising money for my animal shelter.
Saturday evening we played a game they called “The Not So Newlywed Game.” One of the questions they asked the women was what will your husband say is “our song.” I had no idea, but our first dance at our wedding was a Balkan dance called a Cocek, so I said that. Jerry’s answer was more on the mark. Our favorite musical is Rent. We have so many friends, living with HIV. And we’ve lost more than a few. But they are living, not dying. No day but today.
The retreat started Friday evening. The 11 couples introduced ourselves and we talked about what we hoped to get out of the retreat. Jerry and I really had no expectations but my biggest hope was for him to meet and talk to other caregivers. It was a diverse, interesting group. There was a couple in their 30s, and a husband about to turn 89. While all the women are Hopkins patients, few were local to Baltimore. Several couples came from Virginia; it speaks to Hopkins' reputation. We ate dinner together and started to get to know each other. I was surprised at how many of the women continued to work during treatment. It is true they are younger than me, but just the thought of it was exhausting.
The center itself was beautiful. It is run by an order of nuns, and some retired nuns live in one wing. We ran into one of them in the elevator and she was delightful. I must say the Catholic Church does seem to know how to take care of its own.
After dinner, there was a session where we had to come up with one word to describe ourself and one word to describe our spouse. For me, I said realist, and for Jerry, steadfast. He described me as adventurous. I have to say all the women had wonderful things to say about their husbands, and in turn, the husbands described their wives in glowing terms. I suppose we were chosen for this retreat because while we were all getting along well, the hope was that we could do even better.
After the session we retired to our simple room. No television, but WiFi and a comfy bed. There was a yoga session in the morning, which we (and most everyone) skipped, then breakfast. There were several retreat groups so we sat at our assigned tables and continued to get to know each other.
Perhaps the highlight, particularly for the men, was the session where we broke into groups of our own gender. Women do this all the time— we have support groups both in person and on line, but men don’t have nearly the opportunity. The men got to be vulnerable. They let down their guard. They cried. My only regret, and this was expressed by many, was that there was only one such session. We all needed more.
One woman attending, and I don’t think she will mind me talking about her, had just had her first recurrence after 18 years. Needless to say, she was devastated. But the session with just the women gave us all a chance to talk about living with cancer, not dying from it. I have great optimism for her. She beat this once, stayed cancer free for 18 years, and I think she will do it again. She went into this recurrence strong and I believe her body will once again fight it off.
Other sessions included yoga Nidre, which I admit we, and other couples skipped, and a meditation walk. While that was nice, considering our limited time together, they could have been shorter. I understand the need to de-stress, but there was so much to get done!
One session I wasn’t looking forward to was led by one of the hospital chaplains. It was titled something along the lines of spirituality and courage. I am not a religious person so I was thinking we were going to hear a sermon, and I wasn’t too excited. How wrong I was. The woman, a Methodist minister engaged us perhaps more than anyone during the weekend. We discussed hope and optimism, and their differences. And I think we all left the discussion feeling more hopeful and optimistic.
We had a session with an oncologist, and heard what we all knew: treatment had not changed significantly in more than 20 years. Part is money. There aren’t as many of us as there are breast cancer patients. We don’t make as much noise either. That being said, she did discuss some trials and other treatments on the horizon. While there is no “home run” currently available, it’s being treated more as a chronic disease, with each treatment giving us more time until something else comes along.
My least favorite session was art therapy, mostly because the woman who led it seemed like such a downer. Perhaps it’s the way she always talks, but I kept expecting her to burst into tears. I spent most of that session chatting with the woman I was sitting next to. I got far more out of that than my “self portrait.”
Our last gathering was bittersweet. We were exhausted, wanted to get home, but didn’t want to leave each other. One man commented that if he had to be stranded on a desert island, this was the group he wanted with him. We discussed forming a private Facebook group and staying in touch. And I think almost everyone in the group was motivated to do so, though time will tell. We are back to the real world and our real lives, and I have seen good intentions like this go by the wayside. But this was not a cooking class who vowed to stay in touch. We belong to a club no one wants to join, and no matter how recently we joined or if we are founding members, we are hungry for information and connection.
My sleep last night was dream-filled and a bit stressful. I’m not surprised. So much is going on in my head. Hopes, fears, agitation, frustration. Other than hope, that doesn’t sound positive, but in its own way it is. I need to take advantage of this psychic energy. I told Jerry we need to plan travel sooner than later, and we can’t avoid making our will. That sounds negative, but it’s realistic. I know none of us know how much time we have left, but this disease does make us more aware. But what I want to be aware of is how am I LIVING my life. We discussed leaving a legacy, and I honestly don’t care about leaving a legacy. But I want to make a difference today. Whether it be through comforting a homeless cat or dog or baking a loaf of bread. And I want to keep paying it forward. Mentoring a newly diagnosed woman or raising money for my animal shelter.
Saturday evening we played a game they called “The Not So Newlywed Game.” One of the questions they asked the women was what will your husband say is “our song.” I had no idea, but our first dance at our wedding was a Balkan dance called a Cocek, so I said that. Jerry’s answer was more on the mark. Our favorite musical is Rent. We have so many friends, living with HIV. And we’ve lost more than a few. But they are living, not dying. No day but today.
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