Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Debulking Surgery
I have just had my 4th round of CARBO/TAXOL and next up is surgery for me on March 10th. I will be having a complete hysterectomy and there is one tumor in my abdominal wall near my rib cage that may require surgical mesh to close the wall.
My original CT scan showed pseudochirrosis of my liver and multiple enlarged lymph nodes and various sized tumors. The recent scan showed no abnormalities in my organs or lymph nodes and significant shrinkage of the tumors so that is great news.
My questions for the group are: of those of you have had the debulking surgery what was your healing experience? What can I reasonably expect for length of time needed to heal? What were your worst days like? What, if anything, did you find most helpful?
Thanks in advance to those of you who share your experiences.
My original CT scan showed pseudochirrosis of my liver and multiple enlarged lymph nodes and various sized tumors. The recent scan showed no abnormalities in my organs or lymph nodes and significant shrinkage of the tumors so that is great news.
My questions for the group are: of those of you have had the debulking surgery what was your healing experience? What can I reasonably expect for length of time needed to heal? What were your worst days like? What, if anything, did you find most helpful?
Thanks in advance to those of you who share your experiences.
0
Comments
-
Hi, so happy to hear you are responding so well to chemo! I had my surgery July 2021. My post surgery was terrible as my bowels backed up to my stomach. I was told that our bowels don’t like to be “man handled” and once they are it’s like they forget how to work. Haha! I wish I knew this information as I would’ve been helping my bowels remember. Every time you use the washroom, I suggest you rock back & forth on the toilet to help remind those bowels what to do! I was waiting to feel the urge to need to go, which never came. Another way to help get things moving is by walking. As sore as you will be from surgery it is so important to move! I hope this wasn’t too much information or that I’ve scared you…just don’t want you to go thru what I did. Be well. xxo0
-
@MamaLlama You definitely have not scared me and it is great information to have. I'm understanding nervous about the unknown and thank you very much for the input.0
-
Hi Carebear,
I wish that I had asked same questions prior to my surgery because I like you want to know what to expect. This was my experience.
I had hysterectomy after being diagnosed with high grade serous cancer 3C in 2020. The surgery was long 7.5 hours. I felt surprisingly well first couple of days. The surgeon told me that I need to get up, and couple of physiotherapists were sent to assist. Having low blood pressure I felt very dizzy and scared to fall down. The therapists seemed inexperienced and at a loss. In retrospect even a walker would have been helpful. By 3rd day my lungs started filling up with liquid/bile and I took turn for the worst. I had trouble breathing. Gastrointestinal tube was inserted for a couple of hours. Very uncomfortable. But it did help get some of the bile out. Instantly I felt better, was able to get up and even few steps helped. This was the beginning of the pandemic so all patients had to remain in their rooms. I spent one week in hospital and once home, having more space and opportunity to walk, recovery was surprisingly quick. Hope this is some help.
1 -
@bojenka Thank you so much for your response. I am sorry you had such a rough time. I will definitely take your advice and get up and moving. And I will ask for a walker if I need it. I am not a passive patient so I will definitely ask for any assistance devices required. I have gathered from you and from MamaLlama that movement is key so I will make sure I do so as much as possible.0
-
Hi carebear! I’ve been thinking about you as your surgery nears. Just wanted to pop in to say hi. Please keep us updated. Hugs to you.2
-
Hi also @carebear I guess the clock is ticking and you're just a week away from your surgery. Glad to hear our community has been helpful. I do agree that movement is a real key to recovery. For me my surgery ended up shorter than they expected thankfully and we used a pain block, something like an epidural, that worked like a dream. When I woke from surgery I expected to be in pain and I had nothing. Just tired and stiff. This was pre Covid so my husband was allowed to be there most of the time and he was a real cheerleader....often tyrant....in making me get up and walk the halls of the floor I was on. So I really had a fairly easy time. By day day 2 post surgery they had removed the pain block and I needed nothing more than an occasional tylenol to manage any discomfort. I had had fluid around my lungs pre surgery which they had drained so they were overly cautious xraying me daily to ensure it wasn't coming back and was told the amount of movement I was making was a primary reason I had no further fluid build up. I also credit being totally honest with my care team and not trying to be a martyr if something didn't feel right. But overall I was ready to go home day 4. Unfortunately my potassium level was very low though and since I lived, at the time, a half day drive home to a remote rural location they didn't want to chance letting me out until my potassium level was back up and controlled so that necessitated an extra couple of days stay. At home, same thing. I followed their advice about no driving the car, no stairs or lifting at first and then just ease into it, and lots of walking and my recovery was quick and easy.
It's different for all of us of course. Some tolerate discomfort more than others. No surgery is the same...it's all tailored to what needs to done. But try to stay positive, commit to getting out of bed and moving around as much as you can. If you're able to have someone visit and help support your walking that's great. If not, then do ask for a walker so your comfortable and and secure. And just take it slow and easy and work up to longer and longer walks. I found it better to take shorter but more walks through the day building up to longer ones as I felt I was able.
Good luck gal....and do keep us posted on your progress. Reach out if there is anything more we can do for you. We're here for you.
0 -
Thank you so much for your comments. My surgery has been pushed back one day because I need a general surgeon to remove a tumour through my abdominal wall and do the repair and he is more available on the 11th. The 11th is a powerful day for me because it is the 5th anniversary of the passing of my Nana who died just short of her 97th birthday so I know she will be even more present and looking over me and guiding the surgeons' hands.
They did mention that I will be getting an epidural so I really do hope I am able to get up and walk around right away. My mother will be with me on the day of surgery and I am sure she will be very helpful in getting me up and moving. Things have loosened up a little on visitors in our area so I will have 1 to 2 visitors daily and I will make sure that they know they are to help me move.
My Drs pre-op didn't say anything about not doing stairs. That concerns me a bit because our house does not have any bedroom facilities on the main floor but if we need to, we can make it work. I will take it as easy as I need to. I am no martyr so if I need the pain meds, I will be taking them.
I truly appreciate the support that this group provides. I am actually quite introverted but glad that I can access help from those who have been through it and that I am able to offer any words of wisdom from my journey whenever possible. I am blessed by so much support and I count all of you in that group.
Stay strong, stay well, stay blessed.
0 -
Good luck on the 11th @carebear. I'm sure your grandmother will be watching over you for sure. It's rather a comforting thought isn't it. I know I think of my own nan as my guiding angel.
As for post op restrictions, those were mine but they can differ based on the actually surgery and techniques that are used so follow the guidance of your surgeon. You may well be able to use the stairs. So ask if it's not explicit in the info they've provided. I find that stuff rather generic and often asking the nurses or the doctor will provide better guidance, or sometimes some tips that might be helpful. I'm sure they'll go over all of that with you before you're discharged from hospital.
Do let us know how you're doing. And you stay well and be blessed.0 -
So, it has been a week and a day since my surgery. My surgery was far more involved than they anticipated and the normal 5 to 8 hour surgery turned into a 12 hour marathon.
I'm not 100% clear on everything but from what I can remember I have been told, on top of the open radical hysterectomy, they wound up taking out my appendix, and doing a small bowel resection. They scraped my kidneys, bladder, rectum and abdominal wall. They also scraped some of my liver but wound up stopping short of 100% removal of visible disease on the liver because they could not safely do anymore. They are confident that my remaining chemo treatments will take care of that.
I was in the hospital for 7 days and just got home yesterday. There was some issue with my oxygen saturation and bloodwork and then I had a setback after I was finally put on solid foods after 4 days of jello.
I finally slept well last night and am stronger today. Pain is mostly controlled by Tylenol but because I have to wear an abdominal binder (they were able to repair the abdominal wall without usung mesh), it is sometimes difficult to take a deep breath.
I am doing my best to give myself patience and grace in recovery. I honestly was shocked at how bad things were since I had been feeling like I had been doing so well in treatment. I have always envisioned my cancer battle like a boxing match and this is the first time where I feel cancer won the round. But, I am knocked back, not out, and with time, rest, care and movement, I will rise to kick cancer's ass again.0 -
@carebear you really won that round, not cancer. It might have taken a huge beating out of you but you are now in the first stages of recovery and in the drivers seat. You have a treatment plan, time to implement your recovery activities and what's ahead is full of possibilities as you navigate the second round of chemo, and hopefully the final one.
Do what you're doing...focus on you. Let your body tell you what it needs, have lots of patience and don't forget to celebrate each time your recovery moves ahead, even a wee bit. And we're here for you for whatever your need may be.
1
