A week after my surgery I just wanted to give an update of my status and talk about my first ever experience as an OP Patient
But first I really want to thank you all again for your support during this period specially in the night before my surgery. I had a very raw conversation with my surgeon at that night and was really uneased and you could help me get my calm back. And that's priceless! She was really upset with me, and that made me feel bad and good at the same time, that I meant for that women at that moment something so strong and that she was trying to fight so hard for me and for what she thought was right for me. But still - my body, my rules.
I went to hospital on Tuesday and was all day long making preparations for the big main event. Blood tests, CT, signing Pappers for the Anasthesia and for the surgery, marking my ostomy.. you name it.
At night I took a picture of my belly and thought about how my husband loved this belly with all his heart, and this was my last night with it on earth - and how about this was a O-K if it would give me a chance of a better life. I made my Moviprep and with all the burning and discomfort I was kinda was glad that I wouldn't be pooping again through my painfully damaged butt anymore.
I was really uneased and excited at the same time, and could only sleep after some crazy mix of Queen, Metallica, Eric Clapton and Beyoncé in those halls. And of course, after the kind words that I receive at the same night from my forum companions
Next thing I know I'm waking up, showering and I'm being taken to the OP. I've token Midazolam and I was really calm and I was making jokes for my fellow colleagues to relax (my surgery was in the hospital where I work). I had my favourite Anesthesist and a good friend Anesthesie Nurse taking care of me during the operation, and was lucky to have one of the best Colorectal and oncology Surgeons in Austria operating on me. Everyone was somewhat touched but they gave me their best and so much love and positive energies. I thought it would be awkward but I'm so happy that I could stay "home" and be taken cared for for people who knew me before.
Everyone in my work knows about everything and they are so supportive and kind. I don't have to worry about my Alex making noises or to have an accident because everyone is understanding and it's standing behind me. And still they talk about how excited they are for me coming back and we talk about the future only with positive outcomes in mind. And that is REALLY REALLY AWSOME.
I woke up after 4 hours of surgery and 5 more hours of Anesthesia. They were controlling my temperature and waiting for me to stay comfortable before waking me up. I had a central line on my neck and a NG Tube. An artery line and an oxygen clip in my left and, 3 little plasters on my belly, a colostomy and a drain, I had a urinary catheter and I had some special socks on my legs that inflated and deflated during the night. Covering my belly was an abdominal binder with velcro. But best of all, I had an Epidural Catheter with a Ropivacain Perfusor that aloud me free movement of my legs and no pain at all!
I woke up really happy that everything was gone, with no pain, no urgency. Only my throat hurt like hell but I was prepared with lip balsam and lemon bombons were a life safer! After a couple of hours I could drink and it felt wonderfull.
On the first two days I was at the ICU and I won't lie, it was hard. All those cables and monitoring were so claustrophobic! But thankfully I slept mostly during those two days.
At the first day I removed my NG Tube. I drank and had tea and two soups.
I was able to get up at the second day. I had a breakfeast with bread, butter and coffee and i was so happy for it! We removed the artery line that day. That's when I was transfered to a bedstation.
Since then I set goals for the present day and I tried to keep up.
Day three I walked three times around for 10 minutes. Loose the urinary catheter.
Day four walked 7 times and paused the epidural which didn't go so well. Day five walked 7 times as well and remove the drain. Day six removed central line and epidural catheter, went to the Garten and went down some stairs. Day seven SHOWERED and walked 3 times for an hour.
And today is day 8 and I haaaaad ice cream and washed my hair! I'm hoping that I can go home tomorrow.
I haven't been able to see my daughter because she is sick since Sunday
I miss her so much...
My pathology report came today and I was a little sad because I thought I had a t3n1 - but after all it is a T2n2. The n2 part scares me of course. I had 4 out of 15 lymph nodes. But hey. IIIB it is.
Also the response to chemo radiation wasn't fantastic and that gets me down. I know the prognosis is better when people have a better response to treatment. Oh well. What can i say... I'm extra motivated to do chemo right now and I'm hoping that it does the trick
And finally, my Alex!
I'm in a mist of love and discuss, relief and sadness for having to find peace with my companion at such a young age - but mostly, and since my response was not so good I'm really happy that I made the decision to go foward with it.
I have an oval 4 cm colostomy with baby stool. I say baby stool because it is normal stool only smaller. Everytime after I eat Alex wakes up and states its own mind.
I then change the pouch and I'm good to go
Ich chose a one piece system from Salts and I change it three times a day. Spray remover, wet Toilet paper, clean toilet paper, skin barrier and neu pouch and it's game on. It's incredible how well the pouch stays on the skin. My self awareness is at a peak right now. But...
I will get used to it. I know
There is nothing I won't do in this world to stay with my daughter as long as I can and to beat this shit! I'm preparing mentally for the chemo and already told my oncologist to throw a bomb in my direction.
Planing a Porthacath for next week.
Next phase: 8 rounds of Capox
Bring it on!
Thank you so much for the love,
29 yo. Mum (22. Mo) & Wife
12/2016: RecAdenoCa G2. CEA 4.3. RAS Wildtyp. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2500 mg/d Capecitabine
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 7/2017: 2 full x XelOx, 1x Oxi reduced to 80%
08 -11/2017:Xeloda only (4 to go)