Newly diagnosed

Hi  and welcome to the group. Everyone is so different with their reactions to treatment. The radiotherapy is the mainstay of treatment and has a build up effect on the skin. Going to the toilet is painful but sitz baths can really help with that. They fit into the toilet seat and have water, going to the toilet in water relieves the pain. I imagined awful side effects but my skin held up very well. I just had two small areas of peeling at each crease of my groin. The chemo is usually tolerated pretty well, I had an infusion of mitomycin on day 1, then tablets every day apart from the weekends for 5.5 weeks. I only had to take the anti nausea tablets in week one. For every side effect there is medication to counter them. Please advise your treating team of any side effects, they are so supportive. I hope all goes well with your treatment, any questions please ask away. Bev x

Thankyou so much you have made me feel more optimistic with regards to the side effects have to think positive many thanks how you are well 

Hi ,

I’d also like to extend the welcome to our group & the Macmillan online community although I’m really sorry you’ve had the need to find us. 

My treatment regime was the same as Bev has explained, this is the standard treatment for anal cancer here in the UK, a short infusion of mitomycin on day 1 then capecitabine tablets twice a day each day of radiotherapy (Monday to Friday weekends off all treatment). Like Bev I had little to no side effects from the chemo, the radiotherapy causes a skin reaction similar to sunburn, the severity of this varies from person to person. 

Do you have a date to see your oncologist yet? I would make a list of questions as you think of them to take with you as you’re generally given a lot of information at this first appointment & you may forget to ask some things, I would definitely be asking how your diabetes & HIV status will be managed throughout your treatment. 

Please come back with any questions/concerns we’re a friendly bunch & the nature of the beast means that we talk about bums & toilet habits A LOT so not much is off limits! 

Nicola 

Hi Nicola james here ! Thankyou so much for the reply feeling so much more confident about this now thanks to you guys Do you think that after the treatment I will be able to go back to my job I have been in furlough since last March and work as long haul airline crew with British airways they are hoping to bring me back September but don’t know if people are coping with side effects after testament many thanks for your support x

 Hi James and welcome.

Side effects after treatment vary a lot from person to person.  Some people here carry on working during treatment, others go back after a break, some have longer term problems affecting work.

Is there someone at work you’d be comfortable talking to to sound out the possibilities?

If not, here’s a taste of your legal situation: “…the Equality Act considers a diagnosis of cancer as a disability. You don’t have to have symptoms or consider yourself disabled by your cancer to be covered. But the Act gives you important rights.“ -  https://www.cancerresearchuk.org/about-cancer/coping/practically/the-disability-discrimination-act-equality-act-and-cancer

You may want to chat with someone at Terence Higgins Trust - https://www.tht.org.uk/our-services/phone-and-post/tht-direct-helpline

As Nicola said, do come back with any Qs you may have, there’s a wealth of info & experience here  x  Toni

Hi again James (),

Regarding returning to work as with reactions to treatment everyone’s recovery is a little different. I think a lot depends on your skin reaction to the radiotherapy, how quickly you heal after treatment finishes (the skin reaction from the radiotherapy often doesn’t peak until a week or so after your last session) also the combined treatments do cause fatigue, something you have to give into gracefully as unlike general tiredness it’s difficult to fight so lots of rest is important during & directly after treatment. So I suppose what I’m saying is yes I would hope you’d be able to go back to your job (I’m very jealous I have a couple of friends that are long haul cabin crew & they love the job!) but whether that would be as early as September is a different thing assuming your treatment won’t possibly be starting until late July/early August. I returned to work 5-6 weeks after my treatment finished but only part-time, also I can be seated at work & have easy access to the loo (the treatment can cause bowel disturbances for a while). As long haul cabin crew you’d be on your feet for long periods of time so you may need a little longer recovery time. I would hope your employer would be sympathetic to your situation & allow you return to work when you feel ready.

We’re always here & most have been through or are awaiting the start of this treatment so we’ve lots of experience between us. 

Nicola 

i'm starting my treatment soon. the mention of chemo did frighten the hell out of me. i've been reading through questions and answers on this group and i feel much better about it all now.the doctor told me i wouldn't need any painkillers or anti nausea treatment and i would sail through it all which i didn't believe.the answers on here are more realistic.good days and not so good days but not as easy as the doctor said and not as bad as i had thought. 

Wishing you all the best and let’s hope it will be easier than we think 

Hi svh, 

Just a quick message to wish you luck with your treatment, I hope it all goes smoothly. The oral chemo is far easier to tolerate than the infusion so try not to worry too much. If it’s any consolation I had imagined my treatment being far, far worse than it actually was. 

Nicola