Newly diagnosed

Hi PEB24. Thanks for your comments. Yes I wish my friends friend hadn't said anything, as although they probably thought it was best not to sugar coat it, it has really affected me in a bad way. Like people are saying the advice has come from treatment for a different cancer, and not everyone will react the same. I am glad you were able to function quite well for most if the time. My husband will come to Southampton with me but I just wish I knew the timescale and how long for.  Xx

Thanks Bungle1. It sounds like the surgeon really has this 6 months treatment wrong.  It is frustrating being in limbo and not having spoken to an Oncology team yet I am not sure who to check with. Guess I will have to be patient and wait for my PET scan and then be patient to be contacted for them to discuss treatment plan.  If it is 6 weeks in a row, sounds like I won't be able to work as I will be off island.  It is good to hear that you did not suffer exhaustion. I can't help but read the side effects of chemoradiation on line and just keep hearing nausea, fatigue, mouth sores, hair loss etc etc, so it is good to hear that isn't necessarily the case for everyone.  Xx

Hi Jlan

As far as side affects went for me i was bunged up from day 1 but was advised to cut veg from my diet and that sorted it. I had 5 days of chemo at the beginning and 5 at the end, I felt sick with the first lot but fine with the second, about week 3 I was walking like john Wayne due to the radiotherapy burns, the last few sessions I had a lot of mucous and after treatment finished having a poo wasn't fun. The treatment isn't a walk in the park but it wasn't as bad as I had expected, just keep your team posted with any issues you are having and they will sort you out. Once you get your treatment plan you will feel more in control and while I know it doesn't feel like it at the moment the time will go quick and you will be out the other side. Xx

Thanks everyone for your words. I am glad I have found this forum and feel much calmer and ready to kick ass lol . From what everyone is saying it sounds like treatment should be in a 6 week block so a mystery why my specialist is saying 6 mths in cycles. Hopefully once I have had my PET scan I will know more.  Thanks again.

If you feel like consulting Dr Google, you can look up 'Nigro protocol' and it will tell you about the standard anal cancer treatment, which is why some of us here are surprised at your being told six months. I think it was Irene who passed this info on, and it was really helpful to me.

Get those ass-kicking stilettos ready!!

Hello - my mistake, she was in Jersey, not Guernsey.  But Lady Tourelle if you still check in there is a lady here who needs your help!  Her blog is here https://blogfromuranus but read it from the beginning to find out how she managed being treated out of her home town.

Irene xx

Have you been given a contact number for the colorectal nursing team? As they may be able to give you some more clarity while you're waiting for next steps... do let us know if your treatment plan does end up being in cycles over 6 months. I'm just going by what I know my own treatment plan is going to be and the shared experience of others here

Much of what I know has actually come from talking with people on here and it's good to feel like I am prepared for the various possibilities and outcomes - I've had a number of amazon deliveries with my purchases of their recommended supplies! 

Jenna xx

Hi Jlan,

You are in the horrible position of having had the diagnosis but not yet having met your oncology team or been given a clear plan and timescale. It would be unusual for treatment to be 6 months and definitely hope that this is not the case. Hopefully after the PET scan you will be clearer but I remember how very slowly time goes at this stage when you are reeling from the diagnosis and just want to know everything. 

It also sounds that like so many of us you had difficulties in getting your diagnosis. Unfortunately this is all too common. It was 9 months from my gp sending me to the hospital to starting treatment as MRI didn’t show the tumour strangely. 

 The positive side is that the treatment has a good success rate. My 3 month scan showed no evidence of the tumour which was T2N1 and I am about to have the 6 month scan.

It’s good that your husband will be able to go with you for support.
I really hope you get your plan soon and that it is 6 weeks rather than months. 

Sending hugs xx

Hi Jlan 

I’d just like to add to everyone’s helpful comments that while chemotherapy can be a treatment done in cycles, radiotherapy isn’t done in cycles in the same way.

You have radiotherapy on a daily basis for a specific length of time, normally weekdays with weekends off which is very typical of the chemoradiation regime for your cancer.

I remember someone posting in the cervical cancer group about having cycles in blocks over months as you have been advised, which sounded very strange, and it turned out the advice was incorrect when they asked for clarification.

I hope you can find out more-it’s very stressful for you to have this doubt hanging over you.

Sarah xx

 Jlan I did a bit more digging and found this 
https://www.gov.gg/offislandtreatment which might be of help