Dear Nelbel, dear Colonclub mates,
It took me this long to have the capacity to post any updates this far. I've been a silent reader in the last weeks and I'm moving slowly to stage 2 of my treatment plan. Surgery will be on May 10th! Yay!
Radiotherapy was horrific. No, wait, horrific doesn't even cut it but I can't find another word to describe the last week on radiation and the two weeks that followed. Had not I had a daughter that still needs me for everything from sleeping to eating and playing and being happy, I would have been committed to a burned unit in a central hospital.
I had a Degree 3 burn in my buttock and vagina. Couldn't even walk straight or sit down. My hemorrhoids exploded from the level of inflammation and even my Surgeon was shocked when she saw me. And all of this combined of course with lovely diarrhea. Mount Vesuvius like, If you get the picture.
Nonetheless I was alone with my daughter so I had to pick her up from the kindergarten, and come running back home. Clean the Appartement and cook diner. And hey! Everyone still needs clean clothes, so guess what. Plus spending the afternoon alone with an energetic toddler when you can barely stand. In those days I found out HOW MUCH I love my daughter. The love of a parent is a unique force of strength I tell ya.
I would try my best not to cry my heart out in front of her when I needed to go to the toilet and we played and went to the park and tried to keep everything as normal as possible. The moments when I would sing for her instead of screaming during my CATASTROPHIC BM are forever imprinted in my Soul. Sometimes she would just stay there staring at me for a moment, would kiss me and go play in front of the TV for a while. God bless TV by the way xD on those days it was a live saver.
I don't know why I had such a reaction to radiation. I have a darker skin tone and I experimented with different ointments during therapy/ some of which included zinc oxide. I would make sure I was clean before each session, but you can't possible exclude microscopic sediment in the area during treatment. Maybe my Radiooncologist was just super motivated to see me cancer free and nuked every cell out of me. I don't know.. but I hope I do not have to get through this again.
My hemorrhoids also made everything worse. And after laboring during 19 hours without pain medication I can tell you that I had never felt this sort of pain in my life.
But that has lasted for this three weeks, was definitely a life changing situation, but now is over. Fortunately. Everything in this life occasionally ends.
Now I am getting ready for my surgery. I'm exercising and resting as much as I can. I am taking care of my vagina as well as good as I can (thank Jaynee for your Emails! They were a wake up call!). I am taking MCP, PSK, Cimetidin, Curcumin and Vitamins just for the kicks. I already have a couple of samples and reading material from Coloplast (still waiting on Hollister and ConvaTec). And I'm wondering what decision to do next.
Lately it has been very present in my mind that maybe a LAR with a permanent colostomy
could the best decision for me, personally.
Maybe I'm traumatised from my recent experiences.
My bowel is suffering from radiation still and I wonder if I ever will be back to normal, even with a reversal done properly. I want my freedom and quality of life back. And the idea of a colostomy is much better for me as the idea of LAR Syndrom or spending each day 3 to 4 hours at the loo.
I will have a chance to talk about this with my Surgeon before the surgery. I know she will recommend to give it a try with the reversal and if that doesn't cut it then go to a permanent colostomy. But I don't want to risk to have 3 surgeries instead of 1 and to have excruciating months dealing with possible pain and frequent bowl movements. And I don't want to live on medication for bowl regulation for the rest of my life. Since the beginning that I've dreaded more ending up with LARS that with an Ostomy.
I would rather get it over with with one shot. Cancer out, perm colostomy - and get back to a pain free and movement free life. And do not have to wonder everytime I want to go outside with my daughter or if someone is coming over how much time I have left before the next "urge".
To finish, I just would like to talk about my husband. This has been an ordeal for him and I can't even phantom what he felt like on those days, when he had to leave me alone at home to get to work. At night, he would sit on the door of the bathroom and hear my crying. Or be with me when I showered because he was afraid I collapsed.
He would take care of his daughter with energy and a smile, cook diner at 21.00 when I couldn't and he would suffer every moment when he was not present during those days.
Not once I heard this man cursing or complaining about anything. Always up for the fight and ready to accompanying me through the way. I've always knew, but unfortunately we had now had the chance to really demonstrate the truthfulness of our vows to each other: He is here for me. He's my pillar. My companion. He and my daughter keep me going and let me aim for dreams of our future together.
Because today, after an initial period of despair and fear, and although I am still AFRAID, I know it.
I can feel it in my gut (literally).
I WILL BEAT THE SHIP OUT OF THIS CANCER.
I will prevail. I WILL.
I know it.
Thank you for listening. Thank you for this forum that has helped me so much during those days.
Stay strong, enjoy life, even (specially) on the bad days.
Dx @ 29 yo. Mum (22. Mo) & Wife
12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
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 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d