I would love to see your nutritionist, Susannah; however, I'm in Texas.  I talked to three nutritionists here, but they are all on the same wave link of not to omit any foods.  I know that I can no longer tolerate many foods (eggs, wheat, milk++ chemo changed my dna) so I decided not to move forward with them.  I ended up having to go to two different cancer centers (I'm on my third oncologist due to them leaving their practice) and they don't have a nutritionist on board.
 

A lady in my other support group posted a blog that I think is helpful and I hope you can access it:

shanabull.com/.../tips-i-learned-during-anal-cancer-treatment

***Also, ladies, digestive enzymes have been a life saver***. The wind had gotten so bad recently that I sat in a room by myself day after day.  I couldn't bare for our grandson who lives with us to have that memory.  This was during the height of the pandemic so he was always here.  The wind was 9 seconds long, constant, loud and lasted for hours after anything I ate.  It took around 3 weeks for me to remember that I took digestive enzymes for a while after treatment (duh!).  I started taking them again and I no longer worry about wind.  They gave me my life back.  A probiotic also helps.  I take Digest Gold and order from Amazon.  Digest Gold has several options.  I don't know if it's available in the UK, but I'm sure there's something comparable.  I also had a second food sensitivity test (the first one was a year ago) which I found so much easier than trying to figure it out with a food diary.  Everything I was eating was making me sick.  I have been able to reintroduce some foods, but had to take away others.  Eggs are still sky high on the list.  It's really hard to bake successfully with egg substitutes.  A couple of foods are mid range, but most are mild range so I can sometimes cheat by taking a digestive enzyme.  Try them!

It's great to hear from everyone.  You all have a special place in my heart.

Texas Girl aka Sheri

Hi Sheri

thanks for the link - I have a good read which took me to Marcia Cross and another website too. 

I have not met Carole in real life (the nutritionist) but over zoom, so being in Texas might not prevent you from working with her if that felt right to you. 

Thanks for the links, really helpful!

Susannah

Hi everyone

a question - did any of you have an inconclusive MRI post treatment scan to check the cancer had gone?

I heard feom the nurse yesterday that the MRI is inconclusive, they cannot tell if the scan is showing scar tissue or active cancer. This is in the two small lymph nodes also affected

(Little rotters we're small as well, 9 mm and 11mm) with the tumour also small, 16 mm 

i have a meeting with the oncologist but I wanted to hear if you all got 'straight' through or if any of you hit this worry - an inconclusive scan?

it is 4 am so I bet you know from your own times how scared / worried I am right now

susannah 

Hi

Ditto....i never really did have a completely 100% conclusive answer either.... I had regular internal examinations and scans that tell you that what is showing is likely to be the amount of scar tissue from the treatment.  This was 2017.  I am now being checked yearly.... Try not to worry and try to get some sleep, I know its easy to say this but things really do feel a whole lot better when you arent so tired.  I wish you well in the future...x

Hi Susannah

i only been had one MRI after I finished treatment and all I got told was "everything is fine" that was early 2018 

since then like Mandy I've had regular internal examinations perhaps because of wher my tumour was they could feel it was no longer there. 
Had a CT recently and was told nothing untoward has shown up and that unfortunately the radiotherapy can leave some damage and that I'll just have to accept it and live with the side effects - all of which are manageable thankfully.

I've now been signed off by my consultant but I think there will always be a wee fear there.

I wish you well and hope your oncologist can put your mind at rest

take care

sandra x 

HI Mandy, that is incredibly kind of you to repy so soon. So kind. 

I am normally a go for it person who can manage almost anything, but I burst into tears at your reply.

First because it was comforting that you had the same, team not 100% sure between scarring or still cancer - and not 100% conclusive answer - and it is wonderful that 4 years later things are good with you - and second at your kindness to reply so soon. Thank you so so much. From memory you had lymph nodes involved too and a fairly sizeable tumour. 

I just had a video call with my oncologist at the hospital (I am Bristol based, but for belt and braces want to do a double follow up, presuming I get through into remission, just for safety sake so am also working with the NHS in Bristol), and she was happy with the response at this stage. 

She did suggest a CT PET which I will have this week, and explained more to track progression of the disease rather than worry.

I bluntly asked - are you being kind but quietly worried - and her repsonse was no, the team at the MDT were happy with the response at this stage (19 1/2 weeks in, from start date of treatment) and expect me to get through this. 

So that reflects your experience too, Mandy. Experienced team seeing not 100% conclusive answers from scans but being happy with progress and expecting a complete clinical response to come. (or here already but scarring showing in MRI).

Man cancer is a pesky test of the soul isn't it. 

Thank you Mandy, thank you so much for your reply. It normalises the scan result of uncertainty to hopefully a good outcome rather than dread, and calms my fears that you got through and continue in good health. 

Here's to your brilliant health. 

Susannah

HI Sandra

Big virtual hug (from 2017 to 2021 as well) from Bristol up to Glasgow where my mum and dad live! It was good telling them the oncologist is not worried about 10 minutes ago - we got a 79 and 77 years old having I hope a relieved cup of tea in Lenzie now!

Thank you for replying, thank you very much indeed from this wobbly woman in Bristol. 

Wonderful news you are now signed off, huge congratulations to you. V glad for you and your family and here's to you having more holidays when allowed in Portugal beaches. 

Susannah

Susannah,

All your fears are to be expected, we have all been there and had the same concerns. I must say that I feel well, don't feel any different than prior to diagnoses and treatment...so to be honest apart from going through the treatment .....my main problem during the treatment was soreness and feeling tired, I still did carry on working which I felt kept my mind on other things. This isnt I understand for everyone though!  I didnt want to dwell on things, although I went through the doctor google fixation like we all do from time to time.. Be kind to yourself and try not to worry, im sure it will be fine and you will reflect on our conversation. :) Take care x

I'm so sorry that I didn't see this sooner, Sasannah, although I don't have an answer for you.  I had it on my calendar that you would get the results next Tuesday and had planned on checking on you then, so I must have misunderstood.  I was always told that everything "looks as is expected" and didn't worry about it.  Now that I'm more aware of how quickly things can take a turn, that fear is always sitting on my shoulder.  I think many of us get PTSD from the diagnosis and treatment.  I hope you don't have to wait too long for the results of your PET scan and please let us know how you are doing.  I had two PET scans within 3 months after treatment so they must have wanted to double check.  Also, I'm on an upswing and have gained 5lbs.  Yea!  
Big hug coming your way.

Texas Girl aka Sheri

How are you feeling, Susannah?

Is everyone doing ok?  I'm finally on an upswing and have gained 10lbs!  

Think of you all often,

texasgirl aka Sheri