A lot has happened since my last post. I had a total hysterectomy (The whole factory is gone now), omenectomy, and low anterior resection of my bowel near the rectum as part of my surgical debulking on January 20th. I initially healed well from it, but ended up back in the hospital January 31st when I had bizarre urinary symptoms (I don't recommend passing gas through the urethra...) and increasing lower belly pain. The hospital was full that night, so I spent the night on an ER bed but at least my hospital's ER has little bitty private rooms. Turns out what I developed was called a colovesicle fistula, my bladder and colon were highly irritated from the surgery and decided to become best friends and 'pass notes' through my abdominal tissue and leak. Nasty nasty infection brewing!
Turns out to treat my fistula the plan was to leave in a foley catheter for an indeterminate time period and a temporary loop illeostomy to let everything in my pelvis calm down and heal. The ostomy part of the plan was initially horrifying to me, but turns out it's no big deal. The bag and care aren't as distressing as i thought they would be and it's temporary. The Foley was a giant pain, though. I can do the care, no big deal, but leg bags are insanely uncomfortable and i felt tethered by it. I ordered a fabric cover for the leg bag in hopes that it'd be more comfortable against my skin and I can't recommend them enough for anyone caught in that situation.
I was finally cleared to removed the foley after walking around with it for nearly eight weeks. They did a cystoscopy (I got to watch this time, very interesting!) and had to really really look to find where the hole used to be! This is very exciting, as the doctors kept telling me over and over how unlikely it would be that it would heal without further surgery, and that they weren't entirely sure exactly how they would fix it surgically. Possibly by putting abdominal muscle between my bladder and colon? Words cannot express how ELATED I was to walk out of that office without a catheter and not needing more surgery.
I also got to have a test called a Gastrograffin Enema. I can't recommend it, it's every bit as pleasant as it sounds, but the surgeon who did my ileostomy ordered it to ensure my bowels are healed and will tolerate eventually reversing the ostomy. I got to watch that, too, and as interesting as it was to watch peristalsis in action...I'm crossing my fingers they NEVER order a test that requires something as sadistic as a 'rectal tube' again.
Once they were sure I'd healed and had a clear pelvic exam, they cleared me to start IP (intraperitoneal) chemo. Unfortunately, when they hooked me up to start the saline pre-hydration to my IP port...well...I -leaked-. There's no pleasant way to word it, it was like Niagra Falls down below...and they initially thought I was leaking around the foley catheter they put in during IP chemo. They changed the catheter, still leaking, so hooked up some dyed saline (methylene blue, I think...very pretty color). Still leaking, so they had me insert a tampon...and...yup...plugged the leak and turned up blue. They sent down a resident (doctor in training) from my gyn/onc's office to examine me, and she saw the tip of my IP port catheter just kinda...hanging out up in there. Apparently it had eroded into the tissue there. Soooo....no IP chemo for me, I get to have that port out at any time. Back to IV taxol/carboplatin every week for nine weeks.
I got straight answers about my initial surgery since all results are back now. They found cancer in my uterus, left ovary, one lymph node (i was initially told they were clear) and some microscopic bits as well as the initial mass that had eroded into my rectum. The term 'primary peritoneal' was thrown around, lumped in with the ovarian. Stage 3B low grade serous carcinoma. My gyn/onc said "You have zero residual disease after surgery." When asked to elaborate, he said there was no cancer left that could be seen with the naked eye. I can only imagine this is a very good thing!
I'm not sleeping well. I'm a side sleeper and now my sides are taken up by accessories. With my IP port, chest port, catheter, and ostomy I had low moments where i felt less than human. Or more...cyborgy? My sister was amazing to me through all this. She's a fair bit older than I am and this mess has made us so much closer. I couldn't handle this without her support. She dropped her life for almost six weeks to come up and make sure I'm OK. My SO is long distance at the moment, but i couldn't ask for a more supportive partner in this.
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Crikey what larks you have had. We do learn a lot of medical stuff as we go along on this road, don't we?! I'm reading a lot of positives in your post and am really pleased for you, but it is a really hard thing you have had to go through. Here's hoping the chemo sorts everything left and you have a less complex time.
I read your post with my mouth wide open with shock and admiration - what an awful lot to have gone through: one of those exoeriences is bad enough let alone them all. You've really been through it and You can read in youtr post just how much happened, you must have wondered if it would ever end.
Everyone's path can be so different and there is no rhyme nor reason to it is there?
I've also had to sleep on my back since late Jan ( when I recurred) and it causes me problems too. I can occasionally manage to put pillows along my side which can help me to sleep a little more on the 'side' - maybe that could help?
I'm glad you had good support, and I really hope that you have an easier time from now on, my goodness you deserve it.
I've come to think of it as 'I'm lucky'. It might sometimes be the very worst kind of luck, but I've been lucky enough to pull my way through it each time to the other side of it.
Goodness me, you've certainly been through the wars, true warrior! In between all the fascinating medical terminology, and there's certainly plenty of that, I get your sense of humour, I'm sure you've had lots of tears and terrors but your humour seems to be getting you through this together with a wonderful sister (something I always wanted and my parents wouldn't oblige just 2 orrible brothers 😬).
I understand the sleeping issues, I'm a side sleeper too and found it difficult post op to not be able to curl up, I would imagine that this is something you will be able to overcome in time especially once the ostomy and other accessories has been removed.?
You are a truly inspirational lady, you've been there and back on more than one occasion and you're still here battling away. Keep up the good work, I hope the chemo suits you (not sure that's the right expression but I think you know what I mean) and it gets any little blighters that may still be in there.
Sending much love and big gentle hugs, get well soon lovely lady ❤️Xx Jane
Chemo is nicer to me than it has been to a lot of others I've spoken to. I'm very lucky in regards to having few and relatively mild side effects.
Once the ostomy and the IP port are gone (and I've had a chance to heal up) I imagine I'll sleep like a baby. Happily curled on my left side or belly. It's something I very much look forward to!
My heart goes out to you. Having had many weeks in hospital with complications post surgery I know how hard it can be.
How wonderful to have had your sister there for you. How is the current situation?
I ended up with positional vertigo once I returned home, purely from lying in a hospital bed for 7 1/2 weeks unable to lie in my side- to put your mind at rest it was nothing serious. But has prevented me from driving for a further 6 weeks. I have some tips on managing the vertigo if you do suffer.
I do hope you are over the worst now, please do take it easy though as these infections definitely hinder the post op recovery period.
Oof, the vertigo you have sounds very unpleasant! I've been fairly lucky in that regard. I don't have very many side effects from my chemo, just mild nausea and heavy fatigue. Only once in a blue moon does Carboplatin decide to hit me with the much dreaded 'dizzy spell'. World goes a bit grey, I get light headed and have to sit down or risk fainting.
It's all been manageable now and I was cleared to return to work. I have my treatments scheduled on wednesdays so the worst of it's on the weekend and doesn't interfere with working.
Goodness gracious, what a time of it you've been having. My admiration to you for writing so wittily about your nightmare of disasters but it must have been hard for you at the time. So good your sister was there for you, too. Now the chemo needs to do its work.
Words have always been a comfort to me, so it only makes sense that spitting it all out on a page helps to take the sting out of it. Just seven more weeks!
Wow So sorry that you have had such a traumatic time and wanted to send you a big hug . You must have been terrified to hear of these complications. It's amazing how we get through these traumatic times , think our survival instinct kicks in and luckily takes over . Friends congratulated me on being strong but didn't feel it at the time .
Fantastic news that you are now NED you are obviously being looked after by a great team . Am so pleased that you have support from your sister . This journey ! Hate that word ! Is so hard we all need someone to share it with .
Wishing you all the best for your future chemo and hope you continue to recover from your surgery without further complications . You definately deserve some good luck from now on . Have you been offered some counselling? I needed some once I finished chemo to help process everything I had been through maybe worth considering .
They haven't called it NED yet, and I don't think I really can either. Very -nearly- NED, maybe, to be upgraded after chemo and some of my more...cyborgy...accessories are removed.
I've been offered counselling, but I've opted out of it. I participate in a support group locally every week but they don't have a specific cancer they focus on. Very lovely people, but at 37 I'm the youngest one there by at least ten years and the only ovarian cancer patient.
As all the other ladies have said you have been through so much and yet your upbeat nature comes through on your post! Sisters are the best aren't they? I have 3 all younger but they were amazing when I was in recovery (one of them was herself recovering from breast Cancer so we had lots in common at the time!). I hope you get through the rest of your treatment ok and keep in touch and let us know how you are getting on.
Oof! Rough to have more than one in a family with cancer. It's driving my parents batty that they can't be here with me, but my dad is in treatment for prostate cancer. My sister is six years older than I am, never would've dreamed as kids that we'd ever be close.
My doc hasn't explicitly said NED yet, though I think I'm the next best thing. It's probable he's waiting until after chemo and at least one clean scan to use that term. How long ago was your diagnosis?
During my surgery they took washings and found positive cells but they still called me NED i.e. no evidence of disease (I think to the naked eye).
I had a radical hysterectomy in Feb. 2014 and was on watch and wait for 9 months when I then transferred hospitals; I was quickly put on Letrozole which I have been on for abt. 18 months but, more recently, CT scans have indicated a little movement in one of two areas they watching The problem with this area is that is upto my bowel so they now want me to do chemo which I start in two weeks time. I have been great for the last 3 years and hope to feel this way for a long time.
So glad that you are NED after all that. I woke up from my op with an unexpected iliostomy and understand your feeling of being inhuman. However I have got quite used to it and my hands don't shake now when changing the bag. I am a side sleeper and I lie on the bag with few problems.
They haven't used the term NED yet, so I've hesitated in using it myself and danced around it. Hopefully I'll be able to use it once the chemo's over and they can reverse my ostomy. The bag is just a minor annoyance now. I can usually forget about it until it's time to empty or change it.
Wow that is an incredible amount of procedure and medical intervention. Well done you for being so brave, I'm a total wimp and would have struggled with some of that. I have a stoma and sleep on my side, although it's not so comfy that side so sometimes use a pillow to lay against.
I can sleep on my right side alright, but I've always slept on my left and right now that's where the IP port is. Not for much longer, though! It's not to say I haven't struggled, just have to push through and do what must be done.
Oh my you have had a rough road! I am in awe of your good humor and positivity. What a warrior you are!! Hopefully its a much easier path from here. Pamper yourself, and your wonderful sister too. You deserve it!
It's easier to have a sense of humor about things after the fact and helps things seem less traumatic. Sometimes I get lucky and I can laugh when it happens.
Just want to send you my best wishes. All you have coped with. Very brave lady.
My goodness, is there anything that hasn't been thrown at you? Sorry I have an image now of Arnie as the terminator, complete with bags. What a brave trooper you are. I really hope the chemo does the trick. With best wishes Dawn x
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