End of treatment

Hi Sallyanne , firstly I want to congratulate you on finishing your treatment, well done!!

Everyone is a little different in their reactions to the treatment & their path of healing afterwards but personally my side effects seemed to peak around 10-11 days after my last radiotherapy session & then I turned a corner & the healing (skin) happened pretty quickly. Thankfully I didn’t suffer any diarrhoea but swung completely the opposite way & was taking Movicol or Laxido stool softeners daily. I also had a different chemo regime to you, I had a mitomycin infusion day 1 of treatment then twice daily oral capecitabine every day of radiotherapy thereafter, presuming your chemo was weeks 1 & 7 your nausea may be down to that 2nd chemo boost but those days following the end of my treatment was the only time I felt any nausea at all throughout the whole of my treatment. I can only imagine how sore you are having to go to the loo 8-10 times a day, make sure you use plenty of cream & maybe while your skin is sore washing rather than wiping afterwards would be more comfortable. Have you been offered loperamide or the likes to try & settle the diarrhoea? It’s a bit of a juggling act between diarrhoea & constipation in those early days, neither being much fun!! 

Thank you also for offering encouragement to those just starting out on their journey, posts like these are so important & can really make a difference to others mindset going in to treatment. 

I hope things begin to settle down for you really soon, sending lots of healing thoughts your way.

Nicola 

Hi Nicola 

Thank you for your message . Actually we had the same chemo regime (I wasn’t clear in my initial post ) Daily capecitabine and an infusion of mitomycin on day one and then I had another on week 5 . Should have been week 4 but it was postponed and I had to stop the chemo tablets for a week as my platelets had dropped too low . You’re right though the nausea really started after that second boost . I guess I will have to take my own advice and take one day at a time . Just impatient to feel better ! 
I have got loperamide and use it with caution but it does offer a pause . 
Thank you again for replying x

Hello Sallyanne,

and breathe...! 

Things might become a bit worse in the next couple of weeks, and then slowly improve.  I had diarrhoea during treatment but that changed to chronic constipation caused by the pain meds when the treatment ended, so three weeks later I stopped morphine and cocodamol.  I had a lot of pain for about nine or ten weeks but my sores were particularly bad and I was treated by a marvellous tissue viability nurse at the hospital.  I couldn't read my bowel signals at all (was it wind or pain or the need to go?) and like you had frequent movements all day.  But gradually, things got better and better although to this day, a year later, I still take a daily stool softener as I have stenosis in the back passage.  In the early days and for some weeks afterwards, I wore Tena briefs as I was so nervous.  But I haven't had an accident for many months now, I just make sure I have a couple of movements before I leave the house.  Things aren't exactly as they were before but I don't lose any sleep over it, it isn't a major inconvenience and I have accepted that this is the new way.

I am so glad to hear how positive you are going forward.  Things will only get better!

Irene xx

Thank you Irene. I can’t read my bowel signals either at the moment … I’m always dashing off halfway through a conversation as I never know what is going to occur! Yes I think I’ve accepted that there will be a new ‘normal’ - I just hope I can manage it better . Early days .. thanks again x

Hi Sallyanne, welcome to the group and congratulations on finishing your treatment and now you can take the time to recover and learn to read your body. I am 22 months post treatment and remember so well the days following the chemoradiotherapy. I had very frequent bowel movements and dreaded leaving the house and even when I had my first follow up appointment at the hospital. I know this treatment can irritate the bowels and it takes time. I eliminated caffeine and I drink decaffeinated coffee or tea. I can’t seem to give my coffee up so feel decaf is the best thing I can do. I also drink lacto free milk. The hospital eventually referred me to a dietitian who put me on the FODMAP diet to see the main culprits. I was on this diet for three months and did have a vast improvement but did have to give up my favourite veggies etc. I have now introduced most of my regular foods but chocolate is a no no and wheat products. I felt I would never have a normal life and it’s greatly improved and you learn the triggers of what you eat and balance life for instance if you are going to a wedding I watch religiously what I eat the day before so that I don’t have problems the next day. I saw my oncologist yesterday and she said my spinchter has been slightly compromised because of the positioning of the treatment but I can still improve but it will never be the same. I do pelvic floor exercises including the anus and that has helped. I go once or twice in the morning and pretty much free for the rest of the day unless I have eaten something that has an effect like the occasional chocolate binge. We have to live don’t we! All the best in your recovery and you will improve every month bar the odd blip but you mainly get over these problems and you have your medical team to help with treatments. Julie

Hi Julie

Thank you for your post . That’s really helpful and good to know that things settle down eventually. I’ve not heard of FODMAP so I will look into it . I’m drinking lactose free milk and have actually gone off tea and coffee . I used to love a cup of strong Yorkshire tea but just can’t face it now .  Reassuring to hear that there are ways to improve and manage the situation. Thank you. 
Wishing you and everyone here, good health and healing x

HI Sallyanne

Congrats on getting through your treatment! And good for you for finding it when it did you the most good. Wish I'd toddled in here sooner.

For me, the unpredictable bowel movements went on for several months, easing slowly over time. I wore disposable knickers for a while, but they weren't very comfortable and I ditched 'em pretty early. LIke you, I just stayed home and close to my bathroom, with all the Things I had accumulated to try and survive. 

Yes, being sore, pooping frequently and miserably, and nausea are all pretty par for the course.

But YOU'RE DONE!!!

I got frustrated at a few weeks past, when I felt I should be further along the healing process than I was. But it DOES get better. And some people feel better very early on!

Keep us posted on how it's going for you.

Hugs

Suz

Thank you Suz . It’s so good to share on here and get reassurance and support from others who know exactly what you’re going through . I appreciate you replying and I’m going to hold onto that ‘ it DOES get better’ . Thank you again x 

I can only speak for myself and it turned out to be different then what I read and was told and expected. About a week after treatment my skin started to heal but week 2 and 3 Post treatment it was the exhaustion from the radiation that kicked in for me. I hadn’t really felt it before, or was too busy treating burns and everything down there to notice! But it left as fast as it came in and was pretty intense, I was out of breathe walking up the stairs. And once that improved and the skin (1 month post treatment) I had about 3 weeks of feeling great, making up for lost meals, even took a trip with kids for March Break and walked everywhere. I couldn’t believe it! And then that’s about the time I got hit with the induced and intense menopause systems - lasted a month and was a real doozy. At 47 I hadn’t had any signed before then. looking back my 3 weeks of making up for lost time was probably all mental strength! I was thrilled to have gotten through it and even happier to be able to feel a little normal again. I suspect like treatment, post treatment is different for everyone.

Hi there 

Thank you for your response . That is so great that you were able to do the March break and with such energy! 
it is a bit unfair isn’t it that we go through all the treatment then get hit with the menopause. I’m not sure what itch/ discomfort down there is from what now !! 
I’ve had one or two bouts of tiredness but for me it’s the weak legs so I’m trying to do a bit of walking each day - and yes out of breath too with stairs. 
Not a huge appetite but trying to put a bit of weight back on ( never thought I’d be writing that!) Bowel movements have slowed up a bit, from my original post and tend to be pretty soon after eating , so a little bit more manageable.

All the best for your continued recovery x