What’s normal post treatment?

Hi Bosshogg 

I am glad you dont have to same side effects as me as it’s been “nasty”….. thank you for message xxx 

Hi Angie

It sounds like you are doing brilliantly!  Don't worry about the oramorph - take it if and when you need it.  I took it for about 5 weeks but just gradually found it wasn't essential so I started to forget to take it!.  Still got half a bottle on the side (just in case lol). 

I did experience extremes of temperature especially at night.  I've found that although the sweats stopped, I do still feel the cold more.  Consultant said yes its common - plus my age.  I didn't have problems with nails but the aching butt still gives me pause - I'm now 16 months post treatment.  I still take Laxido. I still get occasional diarrohoea. But I am more in control now.  I've found along the way that I made leaps forward with progress and then there would be a set back.  I've come to the realisation that there is NO RETURN TO NORMAL whatever that was - its learning to live with some things, seeking advice and help with others.  Strangely the last couple of weeks I've had skin problems all around my crotch area so I got the creams out again and its fading. 

A lot of people think you'll go back to 'normal' and its really hard to explain that its unlikely.  The radiation damage is a forever thing I think and although things settle down, something has changed.

I'm quite proud that the last week I've even managed to redecorate a room - but it has worn me out!

Take heart - you are on the other side now.

Carole x

Hi Carole 

Thank you I am getting my head around never being the old me again - at the moment I can’t leave the house without getting anxious and before this I was always active and on the go!  Now I don’t want to leave my safe space and any visits unless close friends are short.

Toilet and food management is getting threre - and two more weeks I am told will be more big changes.

Thank you again for your advice! 
Angie x 

Hi Angie, Well done on finishing your treatment!! I am sorry you are having a difficult time.It can be brutal for some and others not so much.

I was hospitalized during my 5th week with severe burns and paused my treatment for a week. This in turn caused bowel incontinence 18 months out. I can't speak to nail issues as I had no problems with them. My hair thinned but nothing noticeable to others. I did experience sweating  itching and pain for about 6 weeks after treatment and my bottom was extremely sore for weeks afterwards. I took my pain meds as needed and eventually when the pain stopped I didn't have a problem not taking them. 

The good news is I am 12 yrs NED Praise the Lord and have managed to live a somewhat normal life. I still have to deal with my  bowel incontinence, but have learned to live with it. It's not easy, but when I have plans I eat light the day before and fast until I'm somewhere with a bathroom close by.

As far as a new normal everyone is different. Some go on to live a normal life after treatment. The key here for me is LIVE many with cancer are sadly robbed of that opportunity. 

Fortunately, my family knows my limitations and we plan family gatherings around food at home. I have been very up front with my family and friends from the beginning on my limitations. 

As far as being told everything in the beginning of treatment my oncologist told me it was a brutal treatment. I had pelvic radiation 12 years ago with a take home fanny pack of chemo for a week twice during treatment. The chemo did not make me sick but the radiation was brutal as he described. 

I hope my story has helped you in some way and I pray your recovery is good. 

Much love and comforting hugs for you, Theresa 

Wow Theresa - you had this that long ago must have been far less understood then - my friends who have had this were 5 years and 2 years ago and they have kept quiet except take the meds and do what the team advise xx and a few tips etc … 

I am being realistic about how I can recover, and as you said we are fortunate. I saw my Mother pass years ago with Cancer and many friends x so feeling grateful xx  

love and hugs

Angie