Sharing is caring..

Hello TjFloyd, well to the family. Sorry you have joined us in a nice way. I am 17 months post treatment for anal cancer and luckily it had not spread to other areas. I can well sympathise with the pelvic ic which I did not have but did experience radiation cystitis for the first few weeks starting treatment and found that not at all pleasant as I believe it cannot be treated other than lots of drinking cranberry juice which not even sure that is a cure. I am sure one of the members will be familiar with your diagnosis. Have you had the scans ready to start treatment? You will find lots of tips on here and can ask anything or simply unload stress. Take care

Thanks so much for replying. 

No I haven't as I have just been transferred to Leeds specialists from York as they say that the operation is too specialised for York so awaiting an appointment.

All so daunting.. I hope and pray that you are well on your way to recovery

Hi TjFloyd,

I'm sorry to hear about your diagnosis. I was diagnosed with stage 3. The cancer had spread to a lymph node in my right groin. I underwent the standard chemo/radiation treatment in early 2021. Unfortunately, I ended up having a recurrence a few months ago that resulted in surgery. Happy to report that I''m cancer free once more. It's been a long road and I still have a lot of worry about the future, but I try to reign in those fears as best as possible and just focus in on the day. I do recommend building a support team to help you get through your treatment. Having help with meals from friends and family as well as a social worker and therapist to talk through all of this has really helped.

Please reach out with any questions you have. Keeping you in my thoughts!

Hopie

I am so sorry you have had to join this community but fortunately there are lots of caring members on here, some of whom have been clear for many years but have stayed on the forum to share their experiences and offer support and comfort to others.  I had spread to the lymph nodes in the pelvic area (and a spot on each lung) but they were all treated at the same time as my tumour with combined chemo/radiotherapy and lung ablations afterwards.

Many of us find the uncertainty of knowing what is coming next the worst thing in this cancer journey and knowing the next steps in treatment can be such a positive step. I hope your appointment at Leeds comes through very quickly for you, please let us know when you hear and what happens next.  And anything you want to ask, we talk about everything on here, no holds barred!  You will have the company of quite a few on here, perhaps not going through exactly the same as you but all who have had or are going through the same confusion.

Sharing is caring, absolutely.  

Irene xx

Hi Hopie

I am super chuffed to hear that you are cancer free, yippee. 

May I be bold and ask what surgery you had.

Did you have a full bowel removal And the lymphs taken out of the leg? 

Thank you so much fo connecting Hopie xx

Irene you are a star, thanks so much.

I love the fact that this is MY place and a place that I can ask and ask away.

Keep well and march forward xx

Hi TJ, I'm so glad you found us, although sorry, of course, that you need to. This is such a great place for those of us who have this awful cancer to deal with.

It sounds like your medical team is on the ball and making things move quickly and efficiently. What kind of surgery are they proposing?

Keep us in your loop!

Hugs,

Suz

Happy to share! I had APR surgery 17-months after my original treatment. My doctors removed my anus, rectum, part of my colon and then created a permanent colostomy. I also had most of my vagina removed because of the location of the tumor and then had that reconstructed using tissue from my left abdomen. This was all one surgery. Fortunately, my recurrence was caught early and the cancer did not spread. My lymph nodes continue to be cancer free after the original six weeks of chemo/radiation. It's been a long recovery, but I'm getting stronger every day. This community has really helped. Whenever I get down, I read the posts here to rediscover my hope and strength. Please continue to ask questions and/or just share whatever you need to share. We all get it!

Hopie xx

Hi TJFloyd,

Welcome to the Macmillan online community although I’m so sorry to hear of your recent diagnosis. You’ve had some lovely responses & hope you’ll find our group as supportive& informative as I did when I begun my journey. Please don’t be afraid to ask questions here, nothing is too personal (goes with the territory!!) & there’s usually someone around that’ll get back to you. 

Nicola

Oh Hopie you give me so much hope, thank you and thank you again

Wow what a journey you have had and I am super chuffed that you are out on the other side.

I will certainly pull on you and I pray that in some way I can repay you for your heartfelt support.

I have almost not wanted surgery as I am so scared that I won't be who I am now, a very fit individual who cannot keep still.

I need to work financially and I am so scared that recovery will take too long. Did you go back to work?

I am 61 and am wondering if age is against me getting back to my former self as I too will have the stoma for life (I don't mind that and will deal with it) but I don't want to not be able to walk my furbabies and I don't or can't not work..

Thank you again Hopie xx