Possibly having exteneration surgery

Haha! That is funny. Mine is in yellow bags. They said it is to protect it from the sun  

All the best for today Vikki!

Sarah xx

I hope your appointment went well today. 

You guys crack me up with the colored chemo bags, mine were boring. Different cancer so different drugs though. 

I also had clear margins so no more chemo. I did 35 rounds of radiation and 8 rounds of chemo prior to surgery. So I'm quite happy not to need more. 

That’s a lot of treatment to go through Susan..how are you doing today? 

Sarah xx

Hi Sarah,

Thank you for asking. I'm doing much better than I was. I'm able to use a walking stick to move around now. I only use the walker when

I have a lot to carry (I have a very convenient tray on it). My surgery and ostomies freed me from the hourly trips to the bathroom and the nasty diaper rash I got from the cancer related incontinence. So while the urostomy is high maintenance, it is still less than I was doing before so it actually feels like a relief. I guess I'm fortunate because it made it so easy to accept my ostomies.

I'm working 4 hours a day. I'm not able to do more yet but happy to have some normalcy back in my life. At 63, most people would have just retired but I missed working. 

I'm still dealing with the fistula that leaks bowel fluid into my pelvis and the associated drain. I need to wait a year from my surgery before they will do another surgery.  But my surgeon scheduled a surveillance colonoscopy for Apr 2. I'm cautiously hopeful he will be able to find the fistula this way. (CTs have failed.)

But I recently made a decision to not let the drain hold me back.  This thing hangs down below my knees and is too big to hide under clothing. It really looks quite strange so I have been reluctant to go out of the house. But I'm moving past that, went out to dinner with family a couple weeks ago and went grocery shopping with my husband yesterday. I decided people could stare if they wanted but it wouldn't keep me home. 

I'm now almost 7 months into recovery after my TPE. I was so sick at the time of my surgery that my progress may be slower than others. I am healthier now than I have been since before my diagnosis.  Don't let me scare anyone.  

Thank you! They said they might do a hysterectomy with lymph node removal but need to wait until the results of a MRI on the 4th April. Will hopefully find out on the 11th. 

I am readying myself for the exteneration just in case. 

Gosh that is a lot to go through. You sound like a very determined person but it must be hard at times x

Hi Susan13 

I think you’re doing incredibly well-we are the same age and I cannot imagine working! I do miss the company but I had a long journey to work by train, and I can’t even manage to get to the station nowadays.

I hope the exact location of your fistula can be found and then it can eventually be fixed-It must be very hard to live with, especially with the drain too. When I had my gallbladder out I had an abdominal drain, but only for a week and the extra bag was so awkward in addition to my stoma bags-I kept pulling on it when I was getting undressed etc, but at least it was a small bag and I didn’t have it long.

You’ve got such a good attitude in not letting it hold you back-we should feel able to get out and about just like everybody else. I’ve only really experienced one person starting at me, and it was when I was going into a restaurant in a wheelchair. It made me very uncomfortable, but I just asked the guy if he had never seen one before and made my way to our table. I hope he was suitably embarrassed!

Don't worry about people comparing your progress to theirs-we need to be honest, and we’re all different. I was very sick too at the time of my surgery and beyond, and had a few issues with someone who had gone through the surgery telling me my recovery was poor, I wasn’t doing enough and generally making me feel very bad about myself. I got rid of her out of my life and felt much better for it! Life is hard enough without the criticism of others who don’t walk in your shoes. You are doing really well!

Sarah xx

Hi Vikki

Oh-another wait for a final decision-I’m sorry to hear that. It’s standard to need another scan but annoying having to wait even longer. 

My surgeon tried going down the hysterectomy route, but it was abandoned due to my radiation damage being too severe-that hadn’t been picked up on my mri scan for some reason, so I was opened up and closed up again! I hope it might be more successful for you if you need to go down that route. 

Sarah xx

I really hope that doesn’t happen as that must have been a horrible experience. I do really appreciate you two sharing your experiences x