She has Stage 3, Aggressive Papillary Ovarian Cancer. Wildly enough, she doesn’t have any ovaries. She had a complete hysterectomy and oophorectomy decades ago. we wonder whether it spread from her breast cancer. She had a double mastectomy and has been cancer free for almost 30 years. She had her ovaries/uterus removed about a decade after that, due to heavy menses and large clots,
At this point, they don’t believe. hasn’t spread to any organs. I haven’t looked into the surgery yet, but know it is difficult and extensive. She has a lot of tumours (so many they have actually never given us an exact number) through her abdominal linings. She will have had 4 rounds of chemo to shrink them beforehand.
I would appreciate anything I should know that will help in her care. Thank you.
I hope that her treatments are successful. The best advice I have regarding chemo is that she keep well hydrated on the days leading up, the day of, and the days following treatment.
I’ll tag Lianne_Moderator , as she’s out your way and may know more about the lodge. My Dad stayed in one in Ontario many years ago, and he found it to be a good experience - he didn’t have to worry about the hour+ drive each way every day for his radiation.
@prairigrl…That is new news to me that she would have Ovarian cancer so long after her ovaries were removed…but, of course, I have no medical training!
So, I had Stage 3 High Grade Serous Ovarian cancer and was optimally debulked (meaning that they think that they “got everything”). I had 6 rounds of chemo afterward. I was 56/57 at the time, recently post-menopausal, fairly fit with no other health concerns.
I hesitate to say what your mom's surgery will entail, as I had my hysterectomy and both ovaries and fallopian tubes, plus my omentum removed. My surgery was a large incision from my pelvis (top of public hair area) to a bit above my belly button. I had a large tumour removed. They also tested some of the lymph nodes. The surgeon also drained a large amount of fluid buildup from my abdomen.
I think the extent of your mom's surgery will depend on where they think the cancer is. This should be something that the surgeon\oncologist would be able to explain with the treatment plan, keeping in mind that plans may change. I could tell you all about my experience and surgery recovery but your mom may have a different situation than I, so I don't think reading about my experience would be useful at this time.
There is a lot on this forum from people who have gone through chemo. Much advice and I would say that the important ones are - keeping hydrated (water, water, water, caffiene-free tea), rest when you need to, exercise (walking is great) when you can, keep soda crackers by your bed to nibble. My oncologist said ‘You will feel like you’ve got the flu for the first 2-3 days after treatment but then start feeling better gradually before the next treatment. If you feel worse or it goes on too long, let us know as it means we aren't doing it right.' I remember that it took me longer to bounce back from the sixth treatment than it did from the first…the fatigue seems to be cumulative.
I will say that, it's been 30 months since my surgery, 24 months since I finished my chemo. I did try to do as much yoga, walking and meditation as I could since my surgery. I try to live a drama-free life. I am well and cancer-free for 2 years. I raise 2 little boys and work part-time. I am active. This is a scary time for you and your mom. Be hopeful.
Your mom has survived cancer before.
As her caregiver, you will need to know that cancer has a big emotional impact. I've heard it said that cancer is 10% physical and 90% emotional\mental. I believe this to be true. In Ontario, cancer centres offer supportive services, which includes a counsellor, for the patient and the family (separate, or together and the family can get counselling without the patient being involved - at least mine worked that way). It was invaluable. Please check that out.
Support is available throught wellspring.ca…based in ONtario and Alberta but available online to anyone in Canada, I believe. They have partnered with Ovarian Cancer Canada to provide support to women diagnosed with Ovarian cancer. They have great programs and mentorship.
Wishing you and your mom the best. Reach out to me anytime, either here or with a private message.
@prairigrl I would book as soon as you can. I was in vancouver last year for radiation and they had no spots for me for the whole month I was there
I am glad to hear your mom is finally getting her surgery. The Vancouver Lodge is so lovely, I know you will be comfortable there.
I will invite you to the Lodge group on this site. In there is a video tour of the lodge. You can also ask questions of others. I want to introduce you to @Jamie who has stayed there as well, before it was all redone, and can share her tips of what to bring etc.
Wishing you well for the surgery and your stay.
@prairigrl Hi, to you and your Mom. Yes, I stayed at the Vancouver Cancer Lodge and found the community very comfortable, clean and close to the hospital. They have breakfast, lunch and dinner available for you in the kitchen/dining room, and snacks available. There is a laundry room and a separate area kitchen if you want to cook something different. Upstairs, yes there are elevators, there is a patio that has a beautiful view. There are different TV areas, a very large variety of books in the library. London Drugs is close by. Several restaurants just a block down from the Lodge, Cactus Club and The Rogue, plus Montanas but a bit farther to walk. Then the best part is meeting the people that are there with their own cancer journey. I am still friends with many that I met on my journey. They are a great support, someone to talk to that understand. The staff are very friendly and kind. Mona, the manager of the Lodge is Beautiful. I still communicate with her. I wish both of you comfort during this time. I hope that your Mom heals comfortably. There is support for both of you that you can find here on this site. One of the ones I like is Inspire Health, they have counselling available for both the person going through the cancer and their support. They have much more to offer as well. All the best for both of you and Prayers, too.
@prairigrl Hi again, I just remembered something else. There is a smaller mall close by as well. It has a small food court, clothing stores, and I do believe there now a grocery store. There is a flower store where I met a Wonderful lady that works there. Her name is Michelle and she let me water the plants. There is also a $ store. The building itself has history to it, that of which I can't remember. Oh yes, if you are able to get out and go for walks the tree lined roads are Beautiful and in the large city, quite peaceful.
@prairigrl good morning, I received a message from Mona last night confirming that the Freemasons are available for you and your Mom for the appointments if you find the walking a bit too much. The Freemasons are a group of people, who graciously are there to drive you to and from your appointments.
@Jamie I think there is a VGH hospital shuttle, isn’t there? Or maybe the Freemasons organize that shuttle? It would probably be better to drive with less people, than a bus-full, with her compromised immunity, and all the respiratory and COVID still going around. Thanks for the tip. 👍🏼 I’ll talk with Mona When we get there. Or is there a way to book a ride ahead of time, if you know your appointment times?
@Lianne_Moderator thanks, that’s great. Im grateful for this and the tag. @Jaime has been so helpful. 😊 Where do I find the invite? I haven’t seen it.
@Sadie12 Thank you so much for taking the time to respond. Your message is so kind and helpful. I hope you remain healthy and cancer free. We will continue to hope the same for my mom’s future. It’s been a difficult journey, especially with my own illnesses, but we are doing quite well considering and remaining positive to meet the challenges ahead. 😊✌🏼
@Cynthia Mac yes, unfortunately, my mom, dad, and myself, have ALL been
uniquely puzzling for the medical community. It’s unfortunate, in this arena, I’d much rather be boring and straight forward. However, we don’t always get to choose our life’s path. We can only choose how we respond to it. That, in and of itself, is life’s greatest challenge. Thanks for your kind words. ✌🏼
It should be in your notifications. Let me know if you can't see it and I will manually add you to the Lodge Group
@prairigrl I do recall making the arrangements with the Freemasons the day before. When I was there they had cars that only sat 4, which included the driver. There may be new regulations due to the viruses. Mona is a Wonderful contact as well as the other office staff who will be more than happy to help with this information.
@Jamie I called the Vancouver Cancer Lodge to check in about the Freemasons Ride program. Unfortunately, they are no longer offering it at that location. 😞 They are hoping to renew this program, but it was cancelled during COVID and hasn’t started up again (it is still offered at other lodge sites, though). I haven't figured out my transport situation yet, but the lodge is just two blocks from VGH, so we should be able to handle that. I am also looking into volunteercancerdrivers.ca, to see if they are able to get me, to my other appointments, further away.
@Trillium Thanks, unfortunately, volunteer cancer divers will only drive my mom and not me, even though I am there supporting her. It seems I have the wrong diagnosis to get a ride - have many diagnosis, but cancer isn’t one of them **Knock on wood** So, I’m still stuck trying to find transport to my own medical appointments, while I’m there. The rest of the time, I think we’ll walk, as there is no hospital shuttle, and it’s only two blocks away. Of course, if mom is unwell, we will call for a ride, but it seems kind of silly for such a short distance otherwise.
@prairigrl - the walk may be a good thing and not too far. Spring is here and Vancouver is good weather except for rain.
The ride to your appointments farther away is still a concern though. Try calling this CCS number if you have not already. They are really good at helping to find resources.
Are you feeling a little better today?
@prairigrl I hear you on the cab thing - for only two blocks?? My mom had arthritis in her feet and so walking was out of the question, unless she was super motivated (shopping!). I would often feel guilty about calling a cab to deliver us 5 minutes down the road but I realize now that was just a waste of my energy. We used uber a lot and if the driver didn't want the fare, they didn't accept the offer. If you can afford the cab, go for it. And if it's a nice day and she's feeling up for it, a walk is good too.