Hey Jude!
Thanks so much for your message... It's really lovely to hear from someone who understands!
I REALLY feel for you & where you're at right now... How are you coping?
I'm glad to hear you only had to have 30days treatment... That should help with your recovery time too.
Did you have chemo through the PICC line pump, or the tablets?
How's your family coping? Do you have a supportive & loving hubby? It's SOOO hard for them to watch on & not be able to do a whole lot to help you apart from the practical stuff.
To answer your question about side effects increasing post treatment... Unfortunately yes. I'll be honest with you, those two weeks post treatment were the hardest weeks of the whole process for me. The skin fusions were a really tough process. Have you experienced much fusing?
Most of my skin healed fairly quickly, & once we were finished with the Strata gel I plastered the pure sorbelene cream on at every opportunity, so I'm convinced that helped greatly. It's hard when you're a mum with so much still going on at home, but it really is crucial that you keep up with your dressings. The vulval area & surrounds has taken the longest to heal of the external skin (I still have one little red 3mm spot that is in a high friction area that just won't heal!), & the vaginal opening is still SUPER sensitive & gets upset very easily. Thankfully my hubby is very patient & willing to 'talk to the hand' still!!! 😉 So most of my external skin is pretty normal, although totally scarred. Only just in the last few weeks has the feeling of 'stickiness' subsided from the most sensitive areas of my burnt skin.
My bowel movements are finally back to a fairly normal mode of operation. Having said that I just had my biopsy last week, so that was definitely a little setback! The control has definitely improved, but was a slow process. I don't know if you've been told yet, but as soon as your skin is feeling better, start doing pelvic floor exercises as this will help both your bladder control as well as your bowel control. And drink plenty of water. Those larger stools that take longer to pass can be excruciating. I constantly found myself doing birth breathing until the pain subsided!!!
I finished my treatment on December 13th, had a PET scan in April which was clear of cancer, & I just had a biopsy last Tuesday but am still waiting on those results. My doc said everything looks good, all things considered & that he doesn't expect anything untoward which is awesome. It's completely amazing to me to have these results as I not only had the anal cancer detected just inside the anus, but I had a lemon sized lump growing internally that was pressing on my colon & vaginal wall. My radiological oncologist treated me from my pubic bone all the way around & including my tail bone. Was your area of treatment the same?
Where abouts are you based? I'm on the northern NSW coast if it's close enough to catch up? Otherwise, please don't hesitate to keep asking questions & communicating on here. It's wonderful you have great community support, but as you say, no one understands like someone who's already walked the path, & I'm more than happy to help in any way I can. One of my nurses told me that pelvic radiotherapy is the worst that a woman can experience. It's definitely the hardest thing I've had to endure physically - harder than childbirth, 'cause at times you question if it's ever going to end especially so the months start rolling on!
Sending big hugs, & praying you're coping OK.
Much love,
Heids
xo
