English Community

Hello Everyone,

   First of all, I am very appreciative of how supportive everyone is to each other in this group. We all need a safe place to express ourselves openly but also feel encouraged. This looks like the right place for me. 

   I was officially diagnosed with stage 3 ovarian cancer in November 2024. My symptoms were vague and intermittent over the summer, such as occasional constipation and bloating. By October 2024, I experienced a lot of heartburn, belching, and pain up both sides of my abdomen and finally went to my GP, thinking it was something intestinal and/or just part of aging. (I am 68 years old). To my utter shock, she suspected OC and sent me for a CT scan right away, confirming my worst fears. There was a 14 x 6 cm tumour on my right ovary, no doubt pushing on my other organs, inhibiting my ability to eat full meals and causing pain. Also, evidence of some spread in my omentum, but as far as I know, no other spread. I lost 12 pounds over 2 months. 

    It was a long November waiting for my appointment with the oncologist in Victoria, who confirmed my diagnosis and treatment plan. Thereafter, I received 5 chemo infusions in the standard 3-week intervals and I felt so much better. After cycle 4, I had another scan and the tumour had retreated to less than 1/2 (6 cm x .5 cm) and hopefully cycle 5 kicked it down even more. No signs of cancer in the omentum at this point. Two of my cancer markers returned to normal levels and the CA 125 was down to 101 (previously 2400). I am now awaiting the surgical stage: full hysterectomy and debulking on April 7. I admit to feel both grateful and frightened, as I have never had any major surgery in my life. 

   After surgery, the plan is 3 more chemo sessions. Ugh. This cancer experience has been intense for me emotionally, mentally and physically, which I am sure everyone understands. There are days when I feel steady and optimistic, but also days when I feel very sad and discouraged. It comes and goes like ocean waves. I try to allow all the "feels" as it seems to help. I draw a lot and have put these emotions into art, which helps to externalize and let them go. Even still, it has been a rough go. 

   I was in good health before cancer and I hope this will help me recover well from the surgery. I don't know what to expect and perhaps it is all very individual. 

Warmest wishes to you all! 

Hi @LeslieA

Welcome to the group.  I love that you have a creative outlet for your emotions.  It is so helpful on the hard days.

I agree, the idea of surgery is very scary.  I too had never had surgery and I was terrified.  But I found a ton of information on this forum and some of the ladies here gave some great tips.

I'll share the top tips that helped me.  The hardest part of recovery was trying to get in and out of bed because you have to try and do it without using your abdominal muscles.  Ha!  Not easy.  I was fortunate to have an amazing nurse in the hospital who gave me some great tips on how to do it, and helped me practice.  I also rented a bed railing for home that helped immensely because I could pull myself up using my arms.

The other thing that really helped was I found myself a 12X12 cushy pillow that I held against my stomach when I was wandering around and then when I started trying to sleep on my side. Initially it was to protect myself from the two big dogs whose noses are at belly button level… but it also made things feel a little more secure and protected and "held in".  I even took it with me when I went for short little walks outside for the first week or so.

As @Strongwoman mentioned, walking and moving are key.  It will get you out of the hospital faster and will help you recover faster.  And fresh air and sunshine will lift your mood.  So make sure your team has your pain managed before you leave the hospital as it will make it easier to move.

Best of luck on the 7^th.  And let us know how you are doing. 

Hi@LeslieA.  Sorry I didn't connect with you sooner! Just wondering if it is Dr. Mazgani and Dr. Cohen doing your surgery.  I saw you posted that your onc was in Victoria (as is mine) and those are the surgeons who did my surgery.  If so I hope I can relieve your mind a little in letting you know they are both absolutely amazing!  You have already been given great tips for post surgery so I don't have much to add I that regard.  

Hi Joan, 

   Thanks for the encouraging words about these surgeons. I spoke to Dr. Mazgani in an initial phone consultation, but she wasn't sure if she'd be doing the surgery on me. Dr. Cohen was mentioned as my surgeon last week, so either way it sounds like I will be in good hands. 
   My onc is Dr. Lexi Gordon. Is she also your oncologist? 

Good morning Leslie,

My oncologist is Dr. Leatha Fiorino.  My initial phone consultation was with Dr. Cohen but Dr. Mazgani came and introduced herself while I was in the gurney in pre-op. Dr cohen also attended my surgery so I'm not sure who actually did the cutting, lol. I was in hospital for 11 days after (ugh) as my magnesium level was so low and I required magnesium infusions everyday.  They were alsoconcerned about the partial bowel blockage I have as a result of a mass that was deemed too complicated to remove.  Dr. Cohen came to see me every single day and was very sweet.  Dr. Mazgani stopped by a couple of times and was also very nice.  I am now 1 year post op and in May it will be 1 year since I finished chemo.  I feel great and have gained my weight back although I am on a low residue diet because of the partial bowel blockage.  My scans have all been clean (knock on wood) to date and I have just gone from having one from every 3 months to every 6. 
I actually live in Duncan so I was lucky enough to have my chemo here other than my first round that I had in Victoria.

@JoanEG  How are you doing on the low residue diet? Finding it easy to manage? I usually go by how I feel that given day to determine what I am eating that day and what part of the diet I will be selecting my food from.  Sometimes it is easy to just give in to how one is feeling than fight it. Good to see that your scans have been clean as of late. That must feel promising and relieving. Looks like they are separating the time between them out as well which is a good sign. Nice to see the progress you have been having and that chemo has stopped for you as well. It will feel good to slowly get back to normal in your daily activities and eating. Keep up the good work and all the work you have been busy with outside too.  You are doing an amazing job. Take care of you!

Hi@Strongwoman the low residue diet has definitely been an adjustment.  I have been a wellness coach for Weight Watchers for the past eight years and the low residue diet goes against all the healthy eating habits it took me years to develop.  I never thought I would miss eating raw vegetables!  To date the farthest I've strayed is eating a few brussel sprouts at Christmas time.  On the plus side I have gained back 30 of the 38 pounds I lost during chemo and surgery!  Now I have to put the brakes on the cookie and ice cream!  You helped me immensely in the beginning when I was learning to navigate around living with a partial blockage so thank you!

Hi lbarr72,

   Knowing about your experience before and after surgery is so helpful. Like you, I envisioned my large tumour as an evil alien creature. Now with my hair loss & missing eyebrows, I laughingly refer to myself as Gollum's sister, although I am not crawling around looking for "precious" rings. A little humour helps. 
   I decided (after a while) to be open to others about my illness and I have experienced an outpouring of support and kindness from current friends, friends from high school, people in my community and family. If I can say that cancer brings unexpected gifts, this is one for me. All that positive energy has to help somehow! I like the idea of envisioning these people standing behind me as I walk bravely into the OR. 

   And what the surgeon finds when he/she opens me up is anyone's guess. Evil alien baby will be crouched defensively over my right ovary, but much smaller than its previously grandiose size before treatment. I hope it is a tiny husk now. The cancer spread to my omentum and chemo knocked it out of sight, but that might be removed. 

  Recovery from surgery is the next challenge to overcome, followed by 3 more rounds of chemo to "clean up" any remaining cancer cells. I walk the road of hopefulness mixed with certain realities that cannot be denied. 

LeslieA 

Thank you for sharing your story.  I'm new here as well.  Still trying to confirm the ovarian cancer as my biopsy's have been neg so far, other then the roaring 15x12cm mass hiding my ovaries.  2 months into this journey and now waiting for an mri, if we can't confirm the diagnosis we may just go in and remove everything before we get to the chemo part.  The waiting is horrendous and stressful, especially when not feeling well.  I'm in lower mainland.  Good luck with the surgery, scary but you will get thru it.  I'm terrified of it all too.

Hi @LeslieA and welcome. You have found an amazing group of strong and knowledge women in this forum. I found so much information from what others had shared by searching in the forum and I also asked lots of questions by posting information. The "Categories" at the top left of the page were helpful as I was searching around and there's the search bar at the top right which I also utilized. If you haven't already had a chance, you may want to either download or request a hard copy of the "Patient Resource Guide" which is available on the OCC website. I've attached a link here. I found it very useful. Sometimes scary, but useful none the less. 

https://ovariancanada.org/resources/support-resources

I too had never had surgery prior to my diagnosis last February. I had 13 tumours of varying sizes and they did surgery first and chemo after. I had also never heard of a BRCA-2 gene mutation. I too was in good health which was part of the reason my oncologist went with surgery first.

I love the advice others have already started posting. I agree that moving is so, so, so very important especially post surgery. It will be difficult at first but each day it will get better. You are also likely going to focus on your bowel movements more than you ever have before in your life. Constipation post surgery and during chemo is very common. You will undoubtedly get lots of information about that from your surgical team however you will also find lots of information on this forum. Additionally, I attended a few virtual workshops offered by the "Look Good, Feel Better" organization. I found those very helpful. 

My biggest piece of advice would be to document your journey. I keep a list in the NOTES section of my phone - what my official cancer type/grade is, the surgery I had, how I felt before and after surgery, side effects and how I dealt with them, pain I had (where/when/what helped alleviate it) etc. This was especially helpful during chemo as I knew following round 1, what to expect in subsequent round. I'm on the Lynparza maintenance drug and continue to keep notes since day one of starting that. Your brain will forget from one day to the next...notes can be very helpful.

I'll be thinking of you on April 7th. It's a positive next step and you've got this!!

@LeslieA I found this on the OVd site. It's an online Fall Symposium on Managing the Side Effects of Treatment. It's from 2021 however I felt that the information, for the most part, was still relevant. I watched it all and kept screen shots for personal reference, of a few items like dealing with Constipation, Reflux etc. If you haven't stumbled upon this yet, here's the link. Hope it's of value. If the link doesn't work, just type "Managing the Side Effects of Treatment" in the search bar above and it should get you to the posting on OVd.

https://ovdialogue.ovariancanada.org/viewdocument/managing-the-side-effects-of-treatm

Hello @LeslieA

I agree with everything others have posted.  The resource book is fantastic and SO helpful!  I wish they'd just hand these out when you get diagnosed!
I also did the LGFB and it was a fun day although I'm not a big make-up user and chose not to get a wig in 2023 when I first did chemo.
I am doing several different classes with Wellspring and they are fantastic!  I especially love the Wednesday night art class - Meditative Art.  I found it very therapeutic to be able to express myself through the art.  I recently registered for Zentangle as well so will be able to attend 2 of the remaining classes.
There is a page with Wellspring that has a lot of support as well and you could always start your own group/club to try and find more Teal Sisters in your area: https://community.wellspring.ca/clubs/ 
Maybe I'll see you in an online class one day!

No worries at all. We are ALL here to help each other. 

@LeslieA   Welcome to our group. Your surgical date is fast approaching, how are you feeling about that.  If you type in the search bar, key words like surgery, recovery, etc you will find articles that will come up to help you navigate that part of your journey.  Including helping you to heal afterwards. The journey to recovery is hard but if you follow what to do faithfully, you will recover faster.  That includes both diet and exercise.  As much as walking will become difficult, you must practice it daily to get you healing.  As far as what this does to you emotionally and mentally, well that is something that is experience and we all go through it. There will be tough days for sure and ones that will get you down.  Do your best to try to stay positive and heal the best you can in the meantime. Finding an outlet like you have through your art is a great way to externalize your emotions. You can pick it back up while healing from the surgery when you are ready.  I found it helped me in my recovery from surgery and I plugged away at it as I could as I healed.  There are a lot of helpful tips in this forum, you just have to type key words into the search bar and the threads will come up for them.  Including surgery and healing from it.  There are many things you can do ahead of time to prepare yourself and your healing journey. Making sure you follow your instructions for healing from the hospital will help you along the way too.  Having a chair seat for the toilet was a life saver for me.  It was very difficult to go to the bathroom without one.  You will be fatigued by little things as well but that will improve daily as you heal.  I can tell you, the first shower you have is like heaven.  There are many more helpful tips on here too.  

Yes, everyone is individual but there is many commonalities when it comes to healing and you will find you have some of these as you heal.  I encourage you to seek the help of family and friends initially and the need for this will diminish as you heal.  The fatigue is real but will improve slowly as well.  Try not to overdo anything and watch what you eat and drink. You will heal as you rest and listen to your body post surgery.  We are all here for you should you have any questions or concerns as you heal. Just reach out and ask.  I wish you the best with your surgery and recovery.  We are all rooting for you in the meantime.  Take care and hope we will hear from you should you feel the need to ask us anything.  

Thank you so much for these encouraging words. It is perfect timing, as I am alternating between nervousness and a steady mindset to "get er done." I will seek out the information on this site about healing from surgery. 

I had a phone meeting with a nutritionist today and we went over my current diet and some post-surgery diet ideas. I was pleased to know that my diet is well-balanced and nutritious, therefore she encouraged me to keep to this food plan. 

I walk about 3 km a day with my dog, so hopefully my walking muscles will help me move post-surgery. It will be hard to be in that stage of discomfort and possible boredom, but I will have some good books available as well as my art materials. Talking to friends and family will also help me! 

Thanks also for the tip about the toilet seat; I did not think of that. The elimination issue is one of my concerns, as it showed up during chemo treatments and caused nausea. I figured out how to get around it for the remainder of the treatments, but this event will probably be quite different. 

I have definitely dropped into some troughs of sadness and despair since I became ill and I suspect I will again as I go through this new recovery phase. My emotions seem to be more on the surface than ever before. I notice I get upset more easily and cry readily. Often these feeling states pass through me like clouds in the sky. Perhaps these emotions are to be expected, as this illness has been trying and tiring. And still a distance to go. 

I really appreciate the people here thinking of me and rooting for me. And I do the same for everyone here! 

@LeslieA   I am glad that the words today helped you and came at the right time.  There are many emotions that we go through as we wait. Crying is one of them and is natural. Let the tears flow as they may when they need to. Yes this illness can be both tiring and trying with a distance to go. You will make it through it. It will take some time and patience but you will.  Waiting for your surgery is one of these such trying times. 

Of course we are all rooting for you!  I am positive you are doing the same for others as you await your time too.  You got this just have to be patient and wait your turn which is difficult to do.  You will get there, promise.  Thanks for keeping us in the loop and am glad your appt with your Onc went well.  Sounds like you will do well with your recovery phase as well.  Hang in there and vent anytime you need to on this site, it  is what it is for.  Take care of you!

Hello @LeslieA,

Its just 6 days until your surgery and I am thinking of you. You are in the right place to talk about that emotional rollercoaster. The beginning of this journey is such a whirlwind of appointments, tests and information and you have to navigate all of it while in a state of shock. You have already gone through 5 cycles of chemo which just shows how tough you are. You will get through the surgery and next rounds of chem too, but we appreciate it wont be easy. Some things I found helpful for the hospital stay:

- they may recommend a pre surgery drink (Ensure makes one) It was only available at the hospital pharmacy. But you might find a sample of a clear carb loading beverage at The Running Room or Popeyes (not the chicken place). They contain maltodextrin which is broken down slower than glucose. But clear juice will do if thats what you can find.

-a zippered bag that you can attach to your bed with a carabiner. It can hold your phone, chap stick, ear buds or ear plugs. The nurses are great, but overworked. They kept moving my table out of reach so the bag was very handy. They often forget a request as they are overwhelmed, just ask again they wont mind. An insulated, closed bottle.  A pillow case, the sheets are quite rough. Dont bring "stuff to do" until you know whether you will feel up to reading etc.  I had a tiny room and there was no where to put anything.

I hope you have some wonderful spring flowers to encourage you to get outside for some short walks. Best of luck.

Claire

Thank you Claire, you have provided more useful ideas to add to my list. The zippered bag with a carabiner is great and something I would never have thought about. Also a pillow case! I didn't realize we could bring a few comforts from home. I will bring warm socks, slippers and a comfortable nightie too. Those hospital gowns are a little undignified and rather voluminous. I joked to a nurse about those awful, giant paper foot covers we put on before surgery and flop around in. One-size-that-does-not-fit-all. 

The pre-surgery drink is also something I didn't know about. I will be speaking to a pharmacy tech today and will ask about this. For the small surgeries (stent), I drank some apple juice beforehand. 

I am told that I should be discharged in 3 days, but of course one never knows about complications. I hope all goes well. And there are oodles of spring flowers emerging these days. 

Thank you again for your thoughts and suggestions. Hugs to you and everyone here. 

HI@LeslieA jumping on to add my 2 cents!  As you stated I was told to drink apple juice before and they also told me to take some sugar free gum for after surgery.  The sugar free gum will help get things moving.  Do take your socks, slippers, etc.  as you stated you just never know how long your stay might be.  They told me 3 days and it became 12, ugh!  Strongwoman definitely hit on most of the things for when you get home.  Wishing you an uncomplicated surgery and a speedy recovery!

Thanks Joan for your helpful ideas and kind support. I will add sugar-free gum to the list. 

Leslie 

@LeslieA  Of course you can bring some of your comforts from home.  I had to wear these inflatable booties to help with circulation when I came out of surgery. They were difficult to get on/off on my own so I unfortunately had to wait for the nurses to make that work.  I found that if I grabbed them before shift change I was usually good. The difficult part is determining shift change and when to grab the nurses so that you get the care you need and are not a nuisance to them.  If not, I never knew when I would see a nurse after that.  

The pre surgery drink is something new they have been doing for a bit now.  Mine was prescribed to me from what I remember. It seems so long ago but truly wasn't when one looks back. 

Oh yes, complications from surgery can creep up and hit us in the head before we know it. I will cross my fingers that you don't have any complications and get smooth sailing for your recovery. That your stay is not any longer than they are predicting. 

Spring flowers have not started to spring where I am at but am sure they will be coming soon.  They will be lovely to see and smell when they do.  A definite sign that the season has changed and warmth is coming. 

Wishing you well as you pack and prepare for your hospital stay next week. 

Hi Leslie,  I had a large mass on my right ovary 16x13x5cm that was removed on 03FEB including radical hysterectomy and appendectomy.  Fortunately was stage 1.  My surgery went very well and was only on extra strength tylenol and ibuprofen and had minimal or no pain.  I had completed a 'prehab4me' preparation 4 weeks prior to surgery that was provided to me from my gyne-oncologist through University of Alberta.  This was an excellent program to prepare nutritionally, physically, emotionally and informationally.  I had to greatly increase protein in my diet to aid in recovery from surgery.  I also had to drink 500ml of apple juice 3 hours prior to the surgery for the body to have energy during the surgery.  There is a Youtube video showing you how to get out of bed after hysterectomy surgery and the nurses will show you how to do it.  Foothills hospital has wifi, so I watched Netflix on my phone, but otherwise just generally dozed.  They'll likely wake you up in the middle of the night to draw blood and my surgeon visited me each morning after surgery.  I was in hospital for 2 days.   Best of luck and I hope your recovery proceeds as well as mine.  

Stellatrom,

   Great to know that your surgery went well and practically no pain! It is interesting to read via Google that abdominal surgeries are considered one of more painful procedures. No more Google for me, as I have encountered many contradictions and just poor information period. I am stage 3 because of the spread to my omentum. As far as I know, no other organs are involved, but I guess they don't know until they are "there." 
   I currently have a bladder infection that was resistant to the antibiotics prescribed by a pharmacist, so after a recent urine test, my GP prescribed antibiotics that should work effectively on the infection. Of course that creates another little worry for me that I have no control over. 
   The prep program you did sounds wonderful and this was not provided to me here on Vancouver Island. It would be so great if there was a sharing of knowledge among cancer care centres across the country. I independently sought guidance from a nutritionist about my diet and have also worked with a clinical counsellor to sort through my vast, expansive emotional landscape. But I would have appreciated more information about this surgery ahead of time, rather than 4 days before. Ah well. 

The most helpful information has come from my teal sisters here! Thank you all. 

Hey my VI girl@LeslieA just to relieve your mind with regards to pain… you will have an IV pain pump when you wake up from surgery.  They will make sure you are comfortable.  In my case the morning after my surgery the nurse commented that I hadn't used any of the pain medication to which I responded I hadn't needed any!  I did however use it a couple of times after they removed my catheter before I got out of bed to use the bathroom.  It was purely a precautionary measure.  They asked me if I wanted them to just take it out and I said yes.  For the next 10 days while I was there they brought me Tylenol which I took only because they brought it.  I honestly had very little pain.  As for the pre-op diet and stuff you previously said you were in good general health so I don't think you need to worry too much on that front.  It's amazing how parallel our journeys have been although I'm older than you!  My surgery was a year ago March 10/24 and I completed my chemo in May '24.  Since then I have gained back the weight I lost (chemo was not kind to me I lost 35 lbs.) anspd my strength!  You've got this girl!  💪🏼🫶

@LeslieA  I thought I would do a check in and see how you are doing post surgery.  How is your recovery going? How have you been feeling these past few wks? When is your next Oncologist appt? Do you know what the next steps are in your recovery yet or that is to be discussed at your next appt? Glad you are finding what you need on OV Dialogue and that the information is useful especially in your recovery. Nice to have a community to fall back on to get information you are looking for. 

Wishing you the best in your healing process. Take care of you!

I am recovering well. The staples are removed and a home care nurse has come by to make sure the incision is healing properly, and it is. For me the challenge is to remember that I cannot pick up heavier items or do anything that strains the internal stitches. Yesterday I forgot and picked up a heavy hanging basket and walked a few steps until I remembered. Oops. I felt some soreness for a few hours but it is now gone.

My next telephone meeting with my oncologist is on May 28, so she is giving me a long rest before chemo starts up again. The plan was 3 more infusions and then maintenance. Zejula was suggested and may still be the recommended drug. I wondered if the pathology report determines the direction for maintenance drugs? I imagine that she will go over that with me in May. 

 I note that some of our teal sisters refer to having an oncology "team" to talk things over with. I don't think I have that kind of support. As far as I understand, I have an oncologist in Victoria who speaks to me every few months and my GP is very much in the background. I see a cancer care doctor the day before an infusion and nothing in between. I don't have a gynaecologist per se.

Does that seem like the sort of team others here have? (I hope it looks better than mine!) 

@Stellatrom I wish my nurses had shown me how to get out of bed. I never even thought to look online. Thanks for noting that. I have a scar down my abdomen from between my boobs to my pubic bone. Trying to get out of bed was so ridiculously hard for me post surgery. Your points will be helpful for another Teal Sister. Thanks for sharing. 

@Stellatrom that is a good reminder tip. I also was told to have one for the exercises I had to do post surgery, for lung clearing. I'm sure others experienced using the Spirometer multiple times during the day and do 'coughing' exercises to ensure the lungs were remaining clear. I held the pillow against my abs when I did the coughing. Very important for pain management. Thanks again for the reminder.

@Stellatrom   A very good tip to have the pillow with you in the car on the way home. Helps for the bumps in the road too.  There are many helpful tips in here for post op recovery and returning home.  You can find them by typing in the key words and then reading the threads.  They truly are helpful.  Make use of them. Lots to read and to go by.  Hoping you have a good surgery and recovery. Take care.

@JoanEG  You have been busy outside cleaning things up. That is a good thing if you are feeling up to it. Good for you if you are. Sounds like you have a good handle on the low residue diet too. That is good. It sounds like you are eating more than I am on  it currently. That is good too. I am back to minimal eating and liquid diet due to how I am feeling especially today. So, lots of water and I might try an applesauce soon to see if that sits well or not. I sure hope so. Eating can be quite the thing when you can't eat what you want. Well I will go and see who pops up to chat today. Take care.

@lbarr72  Thought I would check in and see how you are doing. Has the weather improved since your last post?  It has here. Mother Nature has granted us some sunny and warm days with today being one of them. It has been lovely seeing the change in weather for sure and feeling the warmth of the sun.  Nice that you and your friend are accompanying each other to your appts in June. Nothing like friend support especially when there is some scanxiety happening as well.  Sounds like you are adapting to an exercise routine that is working for you. Nice.  The break for your hubby sounds like it will be welcomed by both of you when the time comes. It will be a good time for him to spend time with your sons as well.  I think it is hard for the men at times and why they get grumpy at times. The stress they must feel at times because they feel they need to take care of us or worry about us must be hard. The dreary weather definitely would not have helped either. 

Well, hoping things have turned around for you and that they are a little more positive.  As you say " chins and elbows up". Enjoy each day as it comes and try not to let the anxiety of the waiting of your testing to get you down in the meantime. Take care of you!

Hi @Strongwoman I was out of town today visiting my in-laws.  I got home and my power was out due to high winds knocking down trees, ugh.  Thank goodness it was warm out so my house wasn't cold.  I am in a rural area and on a well so no electricity also means no water.  I'm thankful it came back on at 5:30 my time so I can have supper!  Take care.