Papillon treatment

Hi Kentman 

Welcome to the forum and delighted to read of your great success . Definitely read a lot of people suffering from fatigue after treatment.

Not many have Papillion treatment so think it might help if you add radiotherapy fatigue into your title or I can try and link in a few names for you to connect with . 
We also have a thread for people who are on “ watch and wait “ who have not had to have surgery if you would like me to link it in for you .

Take care ,

Court 

Hi Court,

Thanks for the reply. Although I am much relieved that my cancer treatment has been very effective so far, my main concerns are the extreme tiredness or fatigue, and the urgency of bowel movements, often giving me no warning, so have to be near toilet every morning. It means I daren’t leave the house until almost mid-day in case I have an ‘accident’ ! I am wondering how long these after effects of radiotherapy last?

I am to have CT scan etc in 3 months time to hopefully confirm it has not spread anywhere else, the start of the watch and wait process I guess.

Best wishes,

Kentman.

Completely understand .

 Kareno62  I will tag in this member as she is good at remembering who has had this type of treatment . 
Completely agree whilst it’s great news you still have the management issue to contend with .

Court 

www.macmillan.org.uk/.../tips-for-coping-with-bladder-or-bowel-changes

www.macmillan.org.uk/.../radiotherapy-for-rectal-cancer

Hi Kentman 

Added in a few Macmillan information leaflets . Just to give you some time scales regarding the fatigue aspect . Also noted they do make mention about gaining control by using medication so wondering if it’s worthwhile phoning your team to get them to assist you with that aspect or reassess the dose of already on meds .

Some of the nhs info does suggest contacting your team to get help if symptoms don’t subside . 
Our helpline staff might also have more information on 0808 808 0000

Take care ,

Court 

Hi court,

many thanks for the links, found them very helpful.

i guess it’s early days on my recovery path. I have learnt to be a patient patient albeit a very tired one!

Thanks for the best wishes, Kentman.

@Kentman. The only person who springs to mind is @KevH. As I still can’t seem to tag people I’ve attached a link to his profile page and you could also try typing KevH in the search box at the top of the screen to see previous posts that he’s commented on

community.macmillan.org.uk/.../kevh

Hi All,

just a brief update on my progress. It is now 3 weeks since the last Papillon radiotherapy session, and I feel that the extreme tiredness is beginning to lift. I am beginning to do small jobs around the house and to take interest in my hobbies again. The urgency problem is still with me but I am better able to have some control.

I have an appointment for full review in July, with scans etc sometime before. This is all a great relief for my wife who has been a tremendous help and support during the past 8 months. We have both kept very positive, which I believe is the main key to recovery.

Best wishes to all,

Kentman

Hi Kentman, I hope you are still doing well.

My name is Richard and I had the same treatment as yourself.  I was diagnosed at 37 years of age with bowel cancer and received chemoradiotherapy and 3 sessions of Papillon at The Clatterbridge Hospital with the now Prof Sun Myint. I had no visible cancer at the end of the treatment and did not require surgery. My original diagnosis was surgery and a permanent stoma.

The good news is that this was in 2012 and I'm still here, still cancer free and still have all my bodily functions and never required further treatment or surgery.

Even though I was young I had symptoms like you have for a very long time afterwards, urgent bowel movements, tiredness, low energy, which will greatly improve over time. Just remember that we have put our bodies and minds through a lot and it takes a long time to recover. You will have regular checks and you, if like myself at the time, will find these only add to all the tiredness, fatigue, stress.

Hope this helps. If you want to ask anymore then feel free.

Regards

Richard.