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HorseGirl

I’m new to all of this and am waiting for debulking surgery, etc. on August 2nd.  Since a 12cm tumour was found on my right ovary in late June, I’ve been a mess.  I feel broken and despondent.😢

Strongwoman

@HorseGirl 
  No doubt you are feeling that way! It is scary and hard information to process I'm the beginning. Be kind and gentle to yourself.
  I remember crying a lot initially both from being told I had cancer and the unknowns of it all. What debulking surgery was, what they might find, what they may have to do, recovery. It is a lot.
  Is there anything weighing really heavy on you right now that you want to share?  You can send a private message if you prefer. 
  Know that all of what you are feeling is normal and we have all been in the exact spot or similar at some point in time.

paulaholmesrodman

Hey just sending so much support. This SUCKS! Please find a good way to feel your feelings and lean on your support people. It's hard to not write silly platitudes, but as the sister to someone who is almost 4 yrs past her diagnosis, there can be life after. I wish this for you.

NovaScotiagirl

@HorseGirl.  I remember the waiting very well, it's hard.  I was diagnosed in Feb of 2020.,  I did 3 rounds of chemo then surgery June 8th and 3 more chemo sessions.  
I rember the period from diagnosis to first chemo felt like eternity.    Then after surgery when I had to go back to chemo I did shed a few tears.  I had to put my trust in my team and they were stellar. Forever grateful for their support and answering my questions to the best of their ability.
You will find so much inner strength and clarity on what is really important.  Be brave you have a lot of Teal sisters on this journey with you.

HorseGirl

Thank you to everyone for responding. I’m in pain often now and can’t seem to move off the couch.  Some days I just don’t want to do any of this😢.  I am torn about whether to rehome my horses and sell my truck/trailer, I feel like “this” is my new crappy normal.  I saw my MRI results and besides a large tumour on my right ovary there looks to be evidence of early peritoneal carcinomatosis.☹️ I had a CT scan prior to surgery this Wednesday,  but can’t bring myself to find out the results.Geez, I sound like such a whiner!🥺

Strongwoman

@HorseGirl  It is tough and I won't say it isn't. Do you know and/or understand what you are looking at on your scans or imaging?  If you do, wonderful and if not, sometimes the wording appears harsh and we sometimes feel 'a bad' picture. This is not only the case. I had lesions throughout my peritoneal cavity. It is utterly amazing what they can do now. I look at when my paternal grandmother had cancer and she went through radiation, my Aunt told me most of her abdominal area was black from it. That was the reality and knowledge of radiation then. They gave narrowed it down so precisely now. That goes for surgeries now and what they can do.  
  I was in pain like you are now prior to surgery and had a major pain crisis before surgery. Thankfully the wonderful doctor at the hospital was able to prescribe me something for the pain. I will say I was never a pill person before but would use medicine if necessary. This was necessary. Reach out to your doctor or if pain is unmanageable, go to the ER and get it checked out.
  As for your horses and trailer, perhaps wait. If someone can't help you look after them then yes, by all means they need to be looked after and go somewhere. If you have help, then why? Only you can evaluate your own situation.  There are a lot pieces missing before you can say "this will never be the same" versus "thus is for now and will return to normal again".  
 Do you have supports around you? Have you asked them for help? If you have been independent before it will be difficult to ask for your needs initially but then it does get easier. Believe me and I still have some difficulty with articulating my exact needs.
  I am thankful every day for the surgery I had. It was not living prior to that having GI bleeds, running to the ER, being admitted, the pain, the fear of it all. Now the bleeding has stopped, I now know exactly what I have, a wonderful medical team, supports and am enjoying life in my new norm. Some things I have had to not do anymore but others like learning to appreciate small things again is great. Tough time getting from A to B, yes but I did it and am on the otherwise. You will get there too. One day at a time for now. Stuck on couch, watch some comedy or listen to some meditation. You will find or ask for what you need 

battleoflife12018

Hello Horsegirl
I am 5 years post debulking surgery with a temporary ostomy and 6 rounds of chemo, and I am well!!
just wanted to let you know that!!
 Yours in hope and gratitude for successful treatment and your health team. May you experience many MVPs
Sharon

Petra

 @HorseGirl
I was diagnosed in October 2022.

I felt and looked completely healthy, had no symptoms and was diagnosed because the peritoneal carcinomatosis was spotted on a CT scan done for a different reason.

I can completely relate to how shocked and terrified you are likely feeling right now and I wanted to chime in with my treatment story in case it helps you feel more hopeful.

I had three rounds of chemo, then the debulking surgery, and then 6 more rounds of chemo, and am happy to say that I am currently without evidence of disease and feeling healthy. 

It was a challenging winter and spring, but honestly not as bad as I thought it would be. What happens next remains to be seen, but I am feeling a lot better than I thought I would be at this point. 

You can do this. We are all by your side.

Petra






 

HorseGirl

Thanks to all of your words of support and encouragement, I feel hopeful.  ❤️❤️❤️

HorseGirl

Each and every one of you has made a difference in helping me come to terms with this disease, and to feel like I CAN and WILL get through this.

Strongwoman

@HorseGirl You WILL.  It seems very dark when you face the unknown and sometimes scary. It is what this forum is for so that we can connect and help each other with what we are facing. Thank you for reaching out and trusting the group here. 

NovaScotiagirl

@HorseGirl,  YOU WILL !  To echo the above comment.   Teal strong!

HorseGirl

So today is my debulking surgery.  I called my surgeon about my pain level
first thing Monday morning and they suggested I come to KGH emergency.  One
of the residents who will be helping with the surgery came down and examined me in emergency, and I was admitted.  So I have spent two nights in a private room with my pain under control, and it has made a huge difference. I’ve asked lots of questions to the nurses and feel  well-informed. The hydromorphone isn’t working as well for the pain, for the last few hours, but it won’t be long now.  My surgeon who is the dept head, and two resident are all WOMEN❤️❤️❤️  They have been kind and have been patient with my questions.  I am in good hands.  Although I know this is going to be tough, I feel ready to do battle. 🐉 🗡 Stay tuned!

Strongwoman

@HorseGirl
  I am glad that you are where you need to be. I remember crying the day of surgery. Nervous of the unknowns, they soon administered some meds and then I was out.  Woke up in recovery.
 Will be thinking about you today and in coming days. Rest and be kind to yourself. I will look forward to reading your next post when you feel well enough to do so. You got this and a couple of hours to go!

Hooodith

I found that hydromorphone works best as an injection. When it is oral it takes longer to take effect and is not as effective. Now I always ask for it IM.

flory

Hi I’m new here. Diagnosed with high grade stage 3c. Having surgery on Wednesday. I’m terrified and in shock. Went to hospital for a sore hip. I’m 61 and thought I might need a hip replacement. Ct scan showed cancer. I am having surgery at credit Valley hospital. Glad I found this site. Some encouraging stories here but lots of scary stuff too!! I hope i am strong enough to handle everything! 😨

Strongwoman

@flory
  Hello and welcome to the site. I am sorry to hear that instead of a hip replacement you had the news of ovarian cancer. It is a hit to oneself for sure. A whirlwind of emotions hit you all at once and your mind races everywhere. I, myself, was similar to you except I had a GI bleed and went to Emerg. It does feel scary in the beginning. A lot has to do with unknowns and what ifs. It can be difficult to navigate and keep your mind off of it simultaneously. 
  If you have not already, download or obtain a hard copy of By Your Side. The info is on the home page and is free.  We also have Teal Thursdays at 1pm which is an online forum for anyone with Ovarian Cancer. You can join in any time you wish or follow along the conversation if you are not ready yet. We come from varying ages, parts of the country and have different types but a lot of emotional and mental hurdles are the same. I am sure you will find some solace in many ladies stories or personal journeys.
  I have LGSC which is not as common as HGSC. Many of the ladies on this site have HGSC.  If there is something specific you are curious about, put the words in the search bar and it will pull up any recent and past posts on it. You will find that even among the HGSC ladies that some journeys and treatments are similar and some are slightly different. 
  I feel that as you are more informed both about what you have but what your journey is going to look like, you will feel stronger. The hardest part is not knowing and where our minds take us when we are sitting in it. Do your best to tackle one day at a time and do some things that bring you joy and are able to do. If you are struggling, you can turn here for support or you can also ask your Oncologist for alternate supports. Know you are not alone, we have all sat where you are currently and understand how you feel. It was through this site and my outside support that helped me through my own journey. 
  If there is something that is weighing you down and want to share, just ask. If you aren't into a group chat, you can send a message to myself or another peer support volunteer. We will do our best to assist you or guide you to a resource that may be better for you.
  Wishing a good night sleep for you with no worries for the night. Tomorrow is almost here and is another day 
Take care and rest well as you are not alone 

Hooodith

@flory
welcome to this place. I have found it so helpful. Yes, some scary stuff, but lots of good news as well. This is the heroine’s journey, and you will be given the strength you need. Its inside you, and also in the helpers you will meet along the road. This group of women is going to hold you up when you need our strength and experience. We have walked this way before you. We know where the potholes are. We will stand guard during your surgery and afterwards, and remind you to breathe. You are not alone. We are never alone in this sisterhood…

Strongwoman

Well said @Hooodith

LynneA

Flory  I was in denial and fear until after my surgery.   Once I had a treatment plan I felt better knowing there were people working to help me get well and I tried to focus on one step at a time.   It is a tough road but one with hope and support.  You are not alone. 

Petra

Hi @flory, welcome, I just wanted to say hello. 

It's not a great reason to have to join a group, but it's a great group to have joined. I'm glad you found your way here.

 I remember feeling exactly as you describe when I was diagnosed last October, also with stage 3c HGSOC. I was told about the diagnosis in a phone call on a Friday, spent a weekend in utter shock, and walked into the first planning meeting with my oncologist the following week absolutely terrified. 

I'm happy to report that things actually got easier after that.
Chemo was tough, but not as bad as I thought it would be, same with surgery, and here I am now 10 months later, finished with all that, feeling surprisingly well.
I'm like the majority of women after the first line of treatment in that the cancer responded well to the treatment and currently have no evidence of disease. I know that recurrence is a possibility, but I also that the new maintenance medications have significantly improved the prognosis compared to even a few years ago, so I'm feeling hopeful. I'm 54 years old, I have a lot of life left to live, and I'm incredibly grateful that despite this diagnosis, it's a real possibility. 

I felt very supported by my oncology team throughout the process, which was a huge help, and I hope you have a team that you feel good about. 

I know it's scary, but you can do it. One day at a time, one step at a time. Hang in there, lean on whomever you can, be good to yourself, remember that there is good reason to have a lot of hope. 

Feel free to pick my brain for information or about my experience if that's helpful. I remember it all too clearly!

Petra

flory

Thank you all for the replies! Right now I’m worried about the surgery I hope they can get it all. How long does recovery take from debulking? How long was your hospital stay after surgery?

NovaScotiagirl

@flory I can only give my experience. I was in hospital 3 days after surgery.  I like you was 61 when diagnosed 2 months after hip replacement surgery.  I had 3 months chemo. Then surgery and 3 more more chemo treatments.   I have recently celebrated 3 yrs NED.  You are with a strong, resilient group of teal warriors and we all walk with you.

Strongwoman

@flory So many worries and surgery is a big one for us all. Have you had your meeting as to what they will be doing and understand it?
  Now that I have experienced it, I recommend highly a few things to have at home if you do not already:
Raised toilet seat
Someone to stay with you to help you for a week or two
Shower chair for showering initially 
Depends ( I had a couple of accidents that weren't controllable)
Ovol for gas pains after surgery
Walking -- this is difficult in the beginning  (or was for me) I held on to someone and shuffled more than walked the length of our house outside. I would stop when needed and was tired after. I kept at it until I could walk on my own with supervision and started loosing the shuffle.
Nightgowns-- I couldn't handle anything on my belly due to the pressure
 Those are my top recommendations and perhaps other ladies have some to add.
It does take a bit to heal but one day at a time. Showers would exhaust me that first week. I would wake, eat my breakie (which took my awhile then shower) and have a short nap.  Walking is the best thing to start your road to recovery.
  I also was in hospital 5 days as I was having issues with pain meds and reactions.  Kindly remember that each and everyone of us will respond differently to our surgery but will have commonalities.
  I recall crying as I sat in my gown and this suit they hook you up to that blows warm air in to keep you warm. I was scared while in the operating room and can ensure you that they were quick to make me calm and sleepy then did not remember anything until waking up.  The staff are excellent at knowing we (patients) are nervous and do their best to lessen that as much as possible. 
  I have faith you will be in good hands, the surgery will go well and your recovery will go well and you will be well on your way to healing.
  Do you have a surgery date as of yet? That can be nerve wracking if you don't and hope you get one soon if you don't.
Take care
  

flory

@Strongwoman my surgery is September 6th full hysterectomy omentum peritoneal areas and whatever else they find that is suspicious. I believe they start laparoscopically and then may open? I appreciate the suggestions for toilet seat and shower chair. I would not have thought of that. Thank you. I will also pick up some Oval. This is my last free weekend in my life before becoming a full time cancer patient. I want to enjoy each moment but the demons won’t leave my head. I am very grateful to find others coping with the same issues. Thank you all for responding 💕

Strongwoman

@flory You are welcome and this is what the site is for.
  Go enjoy everything you are able to do this weekend.  The evenings are sometimes hard to not let thoughts flow in. I usually try to be so exhausted I can't think too much.
I also slept on the couch for a wk as it was easier to get in and out of and I wasn't sleeping well. My bed is high and I had to use a step stool to get in and out of it  plus ask hubby not to move so forcefully in bed when he turned over. He did it and it worked out well 
  Now I am going to start my day and enjoy some of this weather. Hoping you do the same.
  Take care and know we are all here for you!

Bobby

@flory.   I am also a patient of credit valley and have been on this road since March 2020.  I was 62 when I had surgery and was during covid which made it all the more isolating but only stayed one night in hospital.  Was done laparoscopic and I found no fault with cvh. Besides having two kids had never been hospital overnight before.  We can all tell you our stories but yours will be unique.  Stay on this site.. the women here buoy each other.  There are other virtual meetings through wellspring and ovarian cancer Canada when you are ready.  

flory

Thank you @Bobby. Do you continue to be monitored at CV? Or did you request a referral to a different cancer centre after your surgery? Asking because I live closer to Jurvinski and I’m not sure if I should ask to have my chemo done there. Or perhaps at Princess Margaret?

Hooodith

@flory.  I had the debulking surgery a year ago. I was in hospital for four days. But it would probably depend on what they remove. I lost my ovaries, tubes, and omentum. They would tell you if they were going to take out something important. They will get everything they can see. I expect you will have a surgeon who specialises in reproductive oncology, and will have lots of specific knowledge and experience. You will be in excellent hands. And then, will you be having chemo? The chemo sweeps up any cancer cells still hanging about and kicks them out the door. Before you can say”Jack Robinson”, you will be in remission and jogging up hill and down dale. 

I have a little trick when I have to do anything challenging, like an operation or medical procedure. I focus on the person who is in front of me, like the nurse, radiologist, doctor,etc. I learn their name quickly and call them by that. I try to find out as much as I can about them by asking them questions. I remind myself that they are doing what they are doing because they care about people. Last month I asked questions of the radiologist who was about to stick a needle in my back to drain off the fluid from my pleura. I discovered where he grew up, the year he was born, and that he was born in the same hospital as my son. By focussing on another person, I forget about myself, and soon it is all over. 

I will be thinking of you on Wednesday. 

flory

@Hooodith thank you! I will try that strategy 💕