Im new here, hello from the United States!

Hello Lalabumps, welcome to the group. Glad you found us.

Hi Lalabumps, come join RedCurlGirl and me! I sure wish I'd known about this before my treatment. So glad you found us before. Tell us your story!

Hugs

Suz

Hello and another welcome from me.  There is an American Facebook Group for Anal cancer but it is way bigger than this forum.  Because this is small we all get to know each other which I love.  Hope we can help you in any way, we all know about body changes!

Irene xx

Hi Lalabumps ,

Firstly welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

You’ll find we’re all in the same boat here, bodily changes & functions are discussed freely, we all support one another & it’s good to not feel alone in what we’re going through. We have the lovely ridetbred & RedCurlGirl that are from the US & contribute regularly & probably others that find they get what they need by reading others posts. 

I think I’m correct in thinking that the Anal Cancer Foundation was founded in the US & has just more recently branched out to the UK. I’m surprised that your treating team haven’t pointed you in that direction but you’re part of this lovely supportive community now so any questions you have just go right ahead & ask & we’ll help however we can. 

Nicola 

Thank you all for the warm welcome .

I had really bad pain starting in June of 2022 , after waiting for referrals and a colonoscopy , i was sent to a rectal surgeon . He said I had a fissure , "take lots of sitz baths and Ill see you in 4 months". The pain got severe and i had some lumps that started to get bigger , they took a biopsy and drained a horseshoe abscess in Feb 2023. A week later , I was in the emergency room because the pain had become unbearable . Thats where they told me it was anal cancer . I

I had started pooping from areas that weren't my butt , ladies , you know what I mean . Lots of awful pain , incontinence and just strange stuff happening then . 

I started chemo (for 2 weeks) and radiation for 5 weeks on April 3rd. I felt less pain in the first week into the 2nd , thats when the side effects started. 

My last day of radiation was held up cause I was admitted to the hospital with uncontrolled diarrhea , I stayed 6 days . I had my last readiation while I was there . 

Its been 2 months , I'm back to work , full time (I work from home ). I feel really good today

Still have issues  but  I'm so grateful to wake up everyday and the pain and all the problems are just a bad memory now . 

I have my PET scan in August , I feel good about what's to come. 

Its a big relief to have found a community of others like me , thank you.

It’s great to hear you’re in a good place after such a traumatic start to your diagnosis. You’re doing amazingly well to be back to work & feeling so well so soon & I’m keeping everything crossed for your scan in August. 

Nicola 

Lalabumps, I am amazed that after what you have been through you are back to work full-time!  But your recovery seems to have gone really well in spite of having a pretty awful time until your diagnosis and beyond.  And you are right, the memory of the pain and problems following treatment do fade, thankfully.

Very best of luck for your scan in August.

Irene xx

Oh, Lala, what a badass you are! I can't believe you're back to working full time already! And you had a really rough go of it. My (awful, terrible, unbearable, unthinkable) ordeal wasn't as dire as yours, and I'm taking way longer to recover!

How did you find your cancer care team to be? Red did a lot of research and seems to have set herself up with a team of dynamos she can trust. I fled to the first place recommended (mind you, the recommendation was from my angel gastro doc, the one who FINALLY  diagnosed me correctly) and I had some bad times with them.

But....they got the cancer, and that's the main thing!

I'm so envious you got a PET! My insurance won't pony up for anything but a CAT.

Suz

Hey Lalabumps ! Like you, I found this (awesome, kind, helpful, blessing) community after I’d completed treatment.  It sounds like you’re getting back to steadier footing after a really challenging ride through treatment!  I’m glad to read that, and glad to read the positivity you feel about your upcoming scans.  I have some 18 month NED follow-up appointments at the end of this month/beginning of August, and I feel good about it, also (I mean, the anxiety will inevitably kick in for me, but in my heart and in my gut, I know I’m fine).

Continued good wishes to you as you heal more and more each day!

Best,

Red

Yes, Nicola! The Anal Cancer Foundation actually paired me with a remarkable woman through their peer-to-peer program online!  She had a similar diagnosis to mine, and she was even treated at the same facility, with a couple of the same doctors!  She’s now 4+ years NED!  We see each other when I go for my check-ups, and she has become a dear friend.  All that said, this community offers so much breadth of experience and so much good energy, just by virtue of the fact that there are many, many compassionate survivors here.  So hooray for finding support in any and all ways possible through this crummy process of cancer treatment.  I am grateful for all of you!

Hugs,

Red