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Question regarding suspicious cysts and cancer

Re: Question regarding suspicious cysts and cancer

Posted by KathiR on Sep 25, 2020 10:06 am

Anga‍ , It's wonderful that tristar16‍ has informed you about OVdialogue; a bit prematurely though. The site is for OVC patients and survivors...and of course, we are so hoping your diagnosis is not that.  That being said, there is nothing like being prepared in which case if you want to study up on the disease and learn about support available from a good source, go to ovariancanada.org.  Everything you might need to know is there. Booklets are available to help guide one through an actual diagnosis and first line treatment as well as recurrence. And a series of videos that are very helpful. And, of course, access to our network of peer support, OVdialogue.  You can access the discussions on OVdialogue without registering on the site. Registration only enables you to participate in the conversations. I am actually the national moderator for the english OVdialogue site (code name Fearless on OVdialogue) so feel free to reach out to me if you have any questions. 

In the meantime, very much still hoping this is not the ultimate diagnosis. We're all still anxious to hear the outcome of your laparoscopy and here for you whatever that might be. 

Re: Question regarding suspicious cysts and cancer

Posted by Anga on Oct 1, 2020 5:55 am

Good morning 👋 I didn't expect to be updating so soon. I got a call about my pre-op appointment just yesterday. Surprised, since I wasn't expecting a call until Nov-Dec, onward. Surgery appt followed, booked for next Friday!

I know this is great, given the current Covid status, that I am able to get this care at this unpredictable time. Still, I was stunned. I was hoping to plan weekend outings for each October weekend. I have things to clean, organize, and a kiddie in remote learning with some catching up to do already. Not to mention, fill in my family & friends. So the timeframe had me emotional for a solid 1-2 hours at the end of a work day, concentrating on the drive home.

Back to being grateful again. And thinking I desperately need a few days off to get things in order. I'll update work today and hopefully not compromise the whole day for me and monthly plan for them.

My husband appears to be hearing this for the first time, we just process differently. Now to ready for hospital stay. With Covid, no visitors afterwards. I'm not sure if I will be there 1 or 3 nights. They said no valuables.. How to function without any media, alone for (possibly) up to 5 days? I crochet, so some yarn perhaps, a book or two, Crocs, candies to get things working post-op. Beyond the basics, any suggestions?

KathiR‍  Than you for the previous update, re OV  dialogie group. My follow up is a month post-surgery, so will take it from there.

So glad I have somewhere to reach at in the early morning :)

AngA


 

Re: Question regarding suspicious cysts and cancer

Posted by Lacey_Moderator on Oct 1, 2020 9:49 am

Anga‍ 

This is great news! But it's understandable to feel a little surprised because you weren't expecting it so soon. 

I hope you can take a few days between now and then so you feel ready!

Sounds like your packing list is great so far. I'm sure others will pop in with suggestions.

All the best!
Lacey

Re: Question regarding suspicious cysts and cancer

Posted by KathiR on Oct 1, 2020 10:17 am

Anga‍ your note reminded me of my first surgery and then the more recent one this past month. In both cases I thought I had all the time in the world to organize my life and before I could do a load of laundry, the phone rang with preop schedules and surgery dates. I too felt like I'd been swept off my feet at first, but after I took a couple of deep breaths, was so happy to know things wouldn't drag on and I'd have the answers I needed.  Just make a list of things you MUST do, and the things that WOULD BE NICE to do. Focus on getting the 'musts' done and know everything else can be dealt with later on if time doesn't permit to address them before your surgery. You don't want to go in tired and frazzled.    

As for you husband, he sounds like mine a bit. It's not so much he doesn't process the information but more that he remains in a state of denial until he really needs to face up to what might lie ahead.  Sometimes it's for his own self protection; other times he feels if he just dusts it off that I will be less concerned.  That said, once I was diagnosed he sprang into action, took his cues from me, and has been the rock I needed to keep going.  Keep him informed, let him know what you need from him and perhaps what you don't need. As much as we do, they need to feel some element of control.  As much as it will be hard for you not being able to have him at your side through the surgery and recovery, it will be equally difficult for him.  

I guess all the hospitals are different.  Here in Kingston, my husband was allowed to be with me while I checked in and until they took me to surgery.  Then the plan was to call him when I was in recovery so he could come back and meet me in my room, with the stuff I wanted to have on hand.  Two weeks ago they were also allowed to visit but only once every two days.  I think that's back to no visitors again.  Of course nothing ever goes as planned.  I had my laparascopy, the surgeon called him with the results, and since what they ended up doing was just taking lots of pictures and I managed the anesthetic so well they decided I could go home same day. So I just ended up in recovery longer, and then they called Wayne to come pick me up.  An awesome surprise since we were prepared for me to be in at least 1 - 3 days like you.  

In case you are checked in though....don't over pack. Yes, books, magazines, some knitting or whatever to while away the time.  At KGH we are allowed to have our iPhones or iPads or laptops.  I had mine loaded with the Netflix app.  Wayne was going to bring me mine once I was in my room. So you might want to double check on that front. But no money, no jewellery, no wallets etc. Just your health card and any info on private insurance coverage if you have it.  Crocks or footwear that's easy to slip into but also stable for walking.  Bending over to put on shoes is impossible after any abdominal procedure.  I always take a robe and never use it.  Suffice with the hospital gown tied at the back and another over it tied at the front...unless you get chilled easily in which case a light robe is nice to have.  Toothbrush, toothpaste, face cream if you use it.  And I always have a big bottle of Evian or other spring water in my bag.  I just find the hospital water tastes of chemicals. And it doesn't hurt to have some gum, or candies or chewy bars on hand.  

We'll all be rooting for a positive outcome gal. One that takes you out of this community. But we're here if you need us every step of the way.  

Re: Question regarding suspicious cysts and cancer

Posted by JustJan on Oct 2, 2020 9:13 am

Anga‍ I am so happy you’re surgery is happening so quickly! I assume you’re having surgery at Victoria Hospital. I was well taken care of in the surgery areas as well as on the inpatient unit. My pain was well managed and my recovery was really uneventful. You may want to warn your husband that he may have to do laundry and housework for several weeks depending on the extent of your surgery. I was not allowed to lift more than 10 lbs for 6 weeks. You are welcome to private message me if there is anything specific you want to ask me about. 

This uncertainty will be behind you soon. Wishing you all the best!
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Question regarding suspicious cysts and cancer

Posted by Anga on Oct 3, 2020 8:06 pm

YES to Crocs! They are my go-to slipper around the house and wash perfectly. I'll bring a fuzzy pj sweater in case chilled. Water, than you! I wouldn'tva thought of that and I love my water.

My hubby seems back to daily norm, probably as it's still a week away. Got my Covid screen today, and yarn the other day. I think the no visitor's (yez, Victoria hospital), is due to the uptick in numbers across the province. He cannot even step foot in. They said to hide my phone in my bag. Laundry will happen, good to know about the 10lbs-6weeks likeliness. 

Will have a quiet family day tomorrow and with the kids off on Friday, they'll all come to drop me off. Hoping for a Sat release but obviously fine with whatever. I am looking forward to some down time with them afterwards, even if it's at a much slower pace. Now to keep our big dog away from me while healing. At least he stays clear of the upper floor, a safe space to to say.

​​​​​​This is exactly what I have been pushing for and now it's within reach.

Re: Question regarding suspicious cysts and cancer

Posted by Boby1511 on Oct 3, 2020 9:16 pm

Anga‍ 

hi there, glad things are moving along for you so quickly!
 
Suggestions:
Socks, nice warm fuzzy guys (hospitals can be chilly)
Blanket (you will be dependant on nurse to get extra blankets or the heated blankets)
Pillows (hospitals seem to have a shortage)
Foam mattress cover (hospital beds are horrid!)
- it will fit right over top of that bed
- hospitals have the blow up mattress which they use and put over top of that mattress, but these are in high demand and short supply
- bring your own, I spent 4 weeks due to complications with surgery, those beds are rock hard
Long phone charger 
Head phones (you may be sharing room and we all have different sleep cycles) 
PJs (I like my own things there, brings comfort)

I moved right in. 🙂 Sleep is important to good recovery, be comfortable.

Sending you best wishes for swift and full recovery.

Re: Question regarding suspicious cysts and cancer

Posted by KathiR on Oct 4, 2020 10:38 am

Anga‍ it's so great to see your positive attitude and you're very fortunate that JustJan‍ has experience with the cancer center you're going to. We're all rooting for a successful surgery and favorable outcome for you. 

Re: Question regarding suspicious cysts and cancer

Posted by Anga on Oct 12, 2020 7:17 am

Hello All,

I hope this Thanksgiving weekend finds you well. My surgery was scheduled for Fri. Oct. 09. The Recovery Room was full, ICU same, there was nowhere for me to go post-op, they cancelled my surgery 😔

I was already on IV, green light, swt to go. I heard, while in/out of sleep, that two others were going home. One was from out of town,  had gotten a hotel for his spouse and the first night post-op. Y surgeon came to show me he was there, ready to go, apologized, and that the OR was closed.

I've been keeping busy with Thanksgiving but really, I feel lost. After a good momentum and quick plans to action, I've just had too much time to think now. It sounds like he will have his nurse call me this week to rebook. 

With Covid starting to take river our hospitals, I'm worried I won't get back in until past the Nov-Dec timeframe we initially discussed. I guess it's back to work on Tuesday. So weird. And now my coworkers will know I am in limbo. Just weird. I've been so private about everything the last six months.

Anyhoo, sorry this is delayed but I did want to share. You have all been great, and really, some of the only people listening to my story so far. So thank you, again. 

I hope to update this week with the new date.

Anga
​​​​​​

Re: Question regarding suspicious cysts and cancer

Posted by KathiR on Oct 12, 2020 10:10 am

Anga‍ I am so sorry for your disappointment. I know exactly how you feel as that's what happened to me for my first surgery.  Drove 4 hours the night before, checked into the Chelsea Hotel where I'd made a 6 night reservation and then arrived at TGH (it does the cancer surgery for Princess Margaret) at 6am knowing I was my oncologist's second patient. We got all prepped up and then the wait began......10am, 11am, noon, 1pm went by and suddenly my oncologist appeared.  Sweetly he told me the surgery ahead of me ended up far more extensive than they'd expected and it would be another 3 or 4 hours at least before they could start mine.  The good news was that he was fine to do it. The bad was a shortage of beds and his fear they'd finish my surgery and have to leave me in a hallway all night until they could find a room for me. So he gave us the option.....stay and get it done, or go back home and he'd reschedule but guarantee I'd be his first surgery of that day.  We looked at each other and the thought of waking up in a hallway after what was supposed to be at least 8 hours of surgery was appalling...and my poor husband was already a wreck.  So we opted to go reschedule and go home to wait.

Now then, was this all fortuitous?  Well we dashed to the Chelsea to pack up and check out. They were wonderful. Didn't even charge us for that day.  Drove the 4 hours home and upon arrival noticed a bubble in the living room ceiling that was new.  When I poked it, out gushed a torrent of water.  It seems we'd sprung a slow leak in the pipes on the second floor and had we not come home then and, instead,  had the surgery and left it another 5 days the entire house would have been destroyed. So sometimes things happen for a reason.  Two days later they called with my reschedule date; a week out....and everything went off like clock work. In fact my 8 hour surgery ended up only 3 as they found much less to deal with than expected.  

It's unfortunate when you get bumped.  Unexpected emergencies or surgeries that end up more complicated and longer than expected take up surgical time.....delayed patient discharges clog up beds and rooms that are expected to be available. There's no control over that.  I was at KGH the other day and talking to one of the surgeons about the impact of the new wave of Covid issues and she was saying she doesn't really see much if any delays in anything other than the really elective surgeries....cosmetics and things like that. 

So disappointing and inconvenient though isn't it? Especially when everything seemed to be falling into place like clock work. Just remember, life is about glitches and bumps along the road. Be patient. I'm sure they'll reschedule you quickly.  In the meantime you're showing great resilience this weekend gal...keep focusing on just enjoying this time with your family.  We'll be looking for an update when you have more news. Big hugs in the meantime  ❤

 

Re: Question regarding suspicious cysts and cancer

Posted by Elsie13 on Oct 13, 2020 6:01 pm

Anga‍ , how annoying and totally frustrating.  There you are with the IV and everything and your surgery is cancelled!  I hope you'll be rescheduled very soon. 

KathiR‍ , what a fascinating story, going home and having water gushing through the ceiling!


 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Question regarding suspicious cysts and cancer

Posted by Anga on Oct 13, 2020 7:56 pm

Thank you for sharing that story @KathiR‍ It still amazes me a little that we can connect and share things here.
​​​Imagine if you'd not gone home? 😳😳😳

Elsie13‍ I think my biggest concern was new wait times. BUT I got the call today & am rebooked for next Tuesday MORNING, whew!!! Bag is still packed by the door. A few quick edits and I am good to go!

🧡❤🤞🙃Anga

Re: Question regarding suspicious cysts and cancer

Posted by JustJan on Oct 14, 2020 8:06 am

Anga‍ wishing you the best of luck! I hope
your surgery goes well on Tuesday and that your recovery goes smoothly. I know you will be well taken care of. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Question regarding suspicious cysts and cancer

Posted by KathiR on Oct 14, 2020 1:35 pm

Anga‍  I'd hoped they wouldn't leave you hanging too long. Keeping my fingers crossed for you this time no hitches and that they don't find any cancer. I don't think that's too much to wish for?  Will be waiting for your update when you're up to connecting with us.  In the meantime, sending positive vibes your way...along with crossed fingers and toes... and lots of prayers.  

Re: Question regarding suspicious cysts and cancer

Posted by Lianne_Moderato on Oct 15, 2020 7:34 pm

Anga‍ 

So happy that your surgery is back on the books. Not too much of a delay and hopefully no hallway in your future.

KathiR‍  - wow - fortuitous indeed!. Glad you were able to minimize the damage to your home AND get a timely surgery and you are healing well.

Lianne

Re: Question regarding suspicious cysts and cancer

Posted by Lianne_Moderato on Oct 19, 2020 1:02 pm

Wishing you well for your surgery tomorrow Anga‍ 

When you are up to it, stop by and give us an update.

Take care

Lianne

Re: Question regarding suspicious cysts and cancer

Posted by KathiR on Oct 19, 2020 1:19 pm

Anga‍ We'll be thinking of you tomorrow gal. Hope it goes off with no hitches this time, and full of good news.  Update us when you can. In the meantime, big virtual hugs and lots of ❤

Re: Question regarding suspicious cysts and cancer

Posted by Anga on Oct 25, 2020 9:23 am

☀🍁🍂🙋‍♀️🧡 GOOD  MORNING ☀

rgery happened on Tuesday! I guess there was some blood loss, not enough for a transfusion to be needed. Started as laproscopic cystectomy. Finished as complete hysterectomy. They found the ovaries were "like glued" to the back of the uterus. It all came out together, so to avoid rupturing any cysts. Had to cut some more than initially thought, to action properly.

Hospital stay was probably what's to be expected. Sore, ups and downs, talking about pain meds and bm's a lot. I was in for 5 days and finally home yesterday afternoon.

What a happy day yesterday was. Sinplly being home was so comforting. My kids were so special and I was able to appreciate it all. Greeted with a hair bow by my youngest, to make everything easy and out of my face. We (SLOW) danced. My oldest knows how important hugging is to this Mama ☺ so she learned how, without squishing me or touching my tummy. My husband was great, tackling the FRESH food I have been so needing, and keeping our large puppy away. Snuggles and kitty video-watching as sky lit up this morning. Caffeine helping things along.

I have   on meds, walking, staples clean. Some under-clavicle pain can still take my breath away by surprise. Hafta get a replacement Dr note, too much personal details for work 🙃 I am really looking forward to this slower pace and family time for the next four weeks. We'll see if 
I can resume early, and go back after that. Not top priority today.

THANK YOU for being here again. I am glad to have a place to go. Follow up is mid-Nov. I am sure I'll be sharing thoughts leading up to that. Not there yet. One step at a time 💛👣

Re: Question regarding suspicious cysts and cancer

Posted by KathiR on Oct 25, 2020 9:42 am

Anga‍ , I'm doing a happy dance for you. Sorry to hear the surgery was more than anticipated but that's often the case. They don't know what they have to contend with until they get in there. Imagine how much worse it might have been had this all been delayed to next year.  I assume that at your follow up appointment you'll find out the pathology of the cysts...cancer or not?  Or do you already know that?  

It sounds like your recovery is going well so far. What a wonderful family you have.  I can remember how helpful and gentle and caring my husband and son were when I came home from PMH.  The worst was how able they are to make me laugh.....ouch ouch ouch sometimes, but laughter is often the greatest medicine.

Please so keep us posted and let us know anytime you need something...if only a willing ear.  Big virtual hugs for now.....

Re: Question regarding suspicious cysts and cancer

Posted by Anga on Oct 25, 2020 8:22 pm

We are are realizing how such the little things make new laugh! Our funny shows name me smile and happy, but their individual comments keep having me stifle out the oncoming tummy laugh. It's good for everyone.

I am still dealing with sharp clavicle pain a few tines a day, tampers w my breathing. I've had 3 10 minute lasting ones. Guess still waiting on trapped gas to exit. Ouch!!

I will get pathology back at the mid-Nov follow up. I'm grateful for the division and just being able to focus on healing right now. 

This has been such an eye opener in terms of Covid affecting surgery wait times. Things were on hold this spring/summer but then I found you guys and steered a more direct path! So glad I had the chance to take this spot NOW and not in some vague 2021 timeframe.

Hugs right back and will update again soon.
Thabk you for being here and making a difference.

​​​​​​AngA