Thank you and will do speak soon x

Hi Taff,

im really sorry if I seem really negative I’m single and over the age of 50 think it may be hard to announce to a perspective partner that I have or have had cancer and even more harder to say that I have a bag .I also watched my mother die from The disease towards the end she  suffered with dementia which I was actually quite grateful for on a good day whilst in the hospice she tell me how she’d had the most fantastic swim but would like another hotel room and on a bad day she’d want to know how the hell my dad and I let her end  up with a fu——- colostomy bag her words not mine .that was 18 months ago ... The words haunt me and I now think I have this urge to fight this outcome for as long as possible . I Have had this tumour for 18 months and  after my first opp I was in a bed next to a 19-year-old girl who was being taught by a nurse how to change her bag and I can remember putting my head into a pillow and crying for her and thinking how brave she was ...broke my heart .i am aware one day this May be my fate but not ready yet ... but would love to keep in touch with you as your  positivity is something I admire and maybe one day I too can write a post like yours .

Thank you very much for replying I really appreciate it 

Justine 

Hi Julesb

I hope ur well & reading this. Can you tell me if you had the Papillon contact radiotherapy after chemo radiotherapy or was it just the chemo radiotherapy. Ta.

Hi There,

i had chemo radiotherapy so both together and not the contact Papillon treatment 

Jules

Hi J, 

I was diagnosed Dec 18;after a chat with my consultant I too was offered an operation that would result in a bag for life but also the non standard treatment. I opted for the non standard treatment. 
I was fortunate to be accepted for treatment and paid two visits. After the second I was told that there was no sign of the cancer but I would need to have chemo and radio therapy to make sure it hadn't spread. 
I was told at the end of the treatment I was cancer free and today I have had a further colonoscopy with no sign of the cancer. 
I hope this helps as it is a scary time but there is light at the end of the tunnel 

S 

I had papillon treatment last year in April, they said it had gone, but I'd got an olser which would go in a year.,but I've had CT and MRI scans this feb. And it hasn't gone.:of course with this virus I've only had my results over the phone. But now because the cancer has attacked my lymph nodes they are suggesting an operation to take it all away, and of course it means asthma bag. I'm a very active fit lady, take care of myself but I'm 80:in may; and I am I just admitt quite scared of having it. But I only have chemo as another option which won't take it all away, I can't see the surgeon for 6-8 weeks because of this virus, to talk about it face to face. Just like to know, how long was the op.and did the recovery go quite well. I know it's not going to be easy. But like to hear what if in my shoes would you do.im relotivy strong and I'm not a wimp.

Hi Donita,

 Hope you find yourself well sorry I did not get notification that you had replied to my post so apologies for late reply I am sorry to hear that the pillion treatment didn’t work for you I also have had Papilion only managed to have two treatments as the last treatment we went into lockdown so I too have found lockdown interfering with treatment . So you are nearly 80 and fit well that in itself is quite a positive thing hopefully the operation will go well and you will mend quite quickly please let me know if you’ve had the Op or not and how you are feeling now thank you very much for your reply yes scary times But we are still alive to tell the tale.

 Kind regards

Justine

How did your treatment go?
 

I found this post after searching for papillon. I've just been diagnosed and looking at all options.

Hi, 

Please can I ask how you're getting on since your papillon treatment?

Thanks xx