Hello!

Hi ,

Welcome to the online community although in sorry you’ve had the need to find us. It’s great to hear you’ve got such a positive attitude too, that will carry you a long way. You're in good company here we’re a friendly bunch with a wealth of experience between us. 

I’m from near Newcastle so I received my treatment at the Northern Centre for Cancer Care. I’m also part of the PLATO Trial, I began my journey back in February 2018 (click on my username & you can read a little about me there) & was offered onto the trial by my oncologist in May of that year. I’m now a little over 2 years NED & I think my next check-up in 6 months will see me discharged from oncology as the trial will come to an end as they will have collected sufficient data from me by then. 

The next tips are only from my personal experience, hopefully others will come along & share their experiences also.

Diet… Personally once I’d had my diagnosis & knew there was a chance I’d be having this treatment I decided I wanted to try & get my gut in a good place ready to begin, I cut out sugar & starchy carbs & began a couple of good quality supplements. If you get diarrhoea during treatment often a bland white diet is advised although I swung the opposite way so plenty of fibre & veggies for me!! The radiotherapy can sometimes alter the way your gut/bowels react to certain foods afterwards too but it’s slightly different for each of us. You’ll soon find if there’s anything you can’t tolerate any longer. 

Pain relief… just ask you radiotherapy/oncology team for any pain relief they’ll advise, my team provided pain relief in the form of codeine & liquid morphine, both caused me chronic constipation so I ended up alternating paracetamol & ibuprofen 2 hourly when needed. You should be provided with creams for you skin also. If you’re uncomfortable when pooing try a portable bidet (Amazon) & go in warm water it’s sometimes helps. Also salt baths were my saviour throughout treatment, I used either Epsom salts or Dead Sea salts, very soothing.

Sleep… Once you begin treatment you probably won’t have much trouble with sleep, it brings along a certain amount of fatigue & I slept better than I have in a long time! Also BetterYou do an amazing lavender/magnesium sleep spray, you can get it from Holland & Barrett or online it has very good reviews & all natural.

Exercise… Again it’s something that’s a little different for us all, if you’re super-fit maybe you’ll find you can continue with some exercise for a while. I continued walking my dog throughout although I didn’t have the energy to take her on the usual long walks so shorter ones did for that time. I pottered around the house to stop the boredom, I’m used to being busy. 

One more tip would be especially as you get in the latter stages of your treatment is try & prepare some freezer meals, I did some batch cooking as I found some days I just couldn’t be bothered cooking & it makes things a little easier. 

Please if you have any other questions please ask as we’re here to support one another. 

Nicola

Thank you Nikki. Really good to hear from you and advice to. So good to have this site to communicate through. Sounds like you have done brilliantly!! 

You’re more than welcome , that is the beauty of this site, I’ve said it a hundred times before but it really was my saving grace. Anal cancer is still a pretty rare diagnosis & it’s so easy to feel lonely in that but this community united me with people who had already experienced everything I was about to go through & the advice & support I gained really was invaluable. Just to add once your treatment begins as with most people including myself you’ll find it passes really quickly. 

Hi Housie and welcome to the group. Nicola has covered a lot there, all very good advice. I found my donut ring cushion wasn’t cutting it during treatment so I was referred to the District Nurse Team, they sort out any equipment you may need. I got a special cushion it was loads more comfortable than the donut ring. If you need it they also do mattresses although I was fine at night. I used plain salt in my baths and had 2-3 a day, they’re very healing. Please let us know if you have any more questions and all the best for your treatment x

Thank you 1in1500! I’m off to buy some salts for those baths I’m sure I will have more questions. Interesting re cushion. I have 2 versions so far. I’ll keep you posted. 

I’ve just read your profile. You did well 1in1500. Great to read!

Hey 

The lovely Nikki and the others have covered most of what I would say.  

But for me this is my advice/

Positive mind is everything in this battle but also remember that there will be days you feel at rock bottom and on those days it’s ok not to be ok.   But always try to get up & shower, it makes all the difference even if you are at your worst.  

When the radiotherapy burns kick in then sleep with a pillow between your legs on your side.  The sitz salt baths are the best thing ever.   

dont google too much and just take one day at a time.  

all the best and I know you will get to the end of this treatment and will get the results you are aiming for xx

Great advice Matilda24, I also did the pillow between my knees when sleeping after surgery & treatment & every morning I got up & got showered & ready, I always did my hair & put my make-up on for my hospital appointments, for me it was just something to bring a bit of normality & control to what felt like such an alien experience at times. 

I also agree Dr Google is a scary place & would advise everyone to stay away! 

Thank you Matilda24 and Nikki65. The waiting game is difficult - becoming more uncomfortable and still 2 weeks until treatment starts. Hopefully lockdown won't affect and I'm thinking I'm going to be able to go out more than anyone else Amazon has been busy so now have all the recommendations on hand I hope. Haircut this afternoon in readiness - decided nice and easy to manage is the answer. Like you both I intend to be up and looking as good as I can every day!