HPV related anal/rectal cancer

Hi Kateskins,

I’m glad that you have now met your team and have a clear plan. Thanks for the update . It can feel like a relief to know that you’re starting treatment even if you don’t have a confirmed date yet. 
The treatment plan sounds similar to the uk although my chemo was in tablet for other than one IV infusion of mitomycin at the beginning. 
As for work I took time off as wouldn’t have been able to manage it. The daily round trip takes time and I also felt increasingly tired as the treatments progressed. I would definitely say that if you are able to take the time out and focus on your treatment and recovery.

Good that you’re getting everything ready and wishing you well for the PET scan and everything ahead. 

Sending hugs x

Hi, 

So glad you’ve met your team and are confident in them, I found that really helped, especially as I’d been fobbed off for so long by my doctors ( GPs)telling me I only had haemorrhoids and making me feel like I was making a fuss about nothing! To have a team who were empathetic and realised the pain was real, and confident they could treat effectively made such a difference!

If you can get time off, I’d take it!

im just about to start week six, and I find it’s taken over my life, I usually have a morning radiotherapy appointment, and they are usually very good at getting me in, but with driving there, then having to drink water 45 mins before, and sometimes I have to have a rescan if my bladders not full enough or too full or if I have the dreaded “ gas “ in the area, I’m lucky to get in and out in an hour and a half ( plus travel) but can be a lot longer.

Week one I was feeling a bit nauseous, everything tasted weird and my appetite was all over the place, they sorted that out for me mostly, but then on I’ve been so sleepy in the afternoons I have to have a nap around 3! Then I’m in bed by 9! 
I find I’m wide awake at 6 in the morning, which means I can do a few bits around the house and get stuff done for the day before I leave, but I also like to do some yoga and go for a little walk too to keep myself and my bowels on the move, so I don’t think I’d have any time to work!!!

the last 5 weeks have flown by, cross off the days, moisturize as mush as possible and make yourself no 1 priority for the next couple of months

Good luck

Sue x

Hi.. im so pleased you have met your team and you feel at ease with them..

I was diagnosed in October 2024..my treatment started Jan 6th 2025 and finished 12th Feb..

I stayed off work from October and returned 7th April this year.. im still on phased return..4 hour hours a day working from home..my work have been amazing..

Everyone is diffrent for this though.. i had been misdiagnosed for over 12 months and needed the few months off before my treatment to really build my strength up..

I stocked up on so many things.. 

Water wipes, nappy bags, tenna ladies ( although not had to use) 

Downloaded lots of books on my kindle  and looked for lots of series or movies to watch on netflix and prime..

Wishing you so many positive thoughts for you PET scan results and starting your treatment..

X

Hi Kateskins03 ,

So good to hear you’ve met with your team & are feeling comfortable in their care, I think this is huge in our approach to our treatment & having that confidence in your treating team will make things much easier. 

The way you’re feeling with your treatment pending is exactly the same way I felt, I desperately wanted to get started but was very wary of what was to come, fear of the unknown I suppose. But once those first couple of days were over & I knew what to expect from my appointments I relaxed into the routine & began checking off those days, I carried my appointment schedule with me to each radiotherapy appointment & got great pleasure from putting a big old line through that days appointment before I started the journey back home. You’ll be surprised how quickly the days pass by I’m sure. 

I took leave from work throughout my treatment, the fatigue was a prevalent side effect for me & navigating work with my treatment schedule was something extra I really didn’t have headspace for at the time. Taking time away from work allowed me to rest up between appointments although for the first 3 weeks of my treatment I did more or less carry on as normal. I managed to return to work on a phased return 5-6 weeks post treatment.

Once you get the PET scan out of the way then hopefully things will move quickly & you can get started.

Nicola 

Hello Kateskin03

It is good to hear from you, and sounding so positive too!  It makes such a difference having confidence in your team, in fact, happily there are very few people on here who have had a bad experience during their treatment.  And once you start there is a light at the end of the tunnel, it is a good idea to mark off those days on a calendar too.

I was retired when I had treatment but I think you are doing the right thing taking leave; there are a few (not many mind!) who worked through but the chemo/radiotherapy can cause fatigue and sores towards the end and for a couple of weeks afterwards.  So be prepared to have easy food, lots of films to watch on television and don't be surprised if your taste buds completely change! 

The Sitzbath every time - add it to your Amazon cart!  And disposable bed pads, in case you have an upset tum.

Big hug

Irene xx 

Hi Kateskins03,

I'm so glad that your treatment plan is coming together and that you are gearing up mentally for the weeks ahead!

I know some of the posters here made recommendations for water wipes and a portable sitzbath (both a definite yes in my opinion), but I wanted to add something that I've found very useful: a peri bottle like the kind used for postpartum care.By the time I was at the end of treatment, I was very raw down there, and to be able to squirt rather than wipe after going to the bathroom was critical for comfort. It's like a cheap version of a bidet, and it's a little bit easier than pulling out the portable sitzbath every time. Anyhow, they're cheap and can be found on Amazon, if you're interested.

Wishing you all the best in the next weeks. We're all rooting for you! Xx

Hi,

I agree, Poppydays - mines was called a HappyPo and was my most important piece of equipment. Just a lovely gentle rinse with warm water was bliss and left me feeling really clean. I still use it now. Definitely a good recommendation! x

I am truly so thankful for each and every one of you!!

I tell my family and friends about this forum and how it feels nice to have a handful of people who have been through this or are going through it to bond with. Most of you may be “across the pond”, but I feel connected because my mom was born in Manchester and we have so much family in England

Thank you for all the wonderful tips! I have a sitzbath in the cart and I am now adding the peri bottle!

I am glad to know that most of you took the time off work! At first i was going to work from home, but i am not interested in dealing with customers while being extremely raw down there and being exhausted on top of that. Doesn’t sound worth it and I would rather heal in peace. 

Hi Kate,

Glad that you have a good team around you, I think it makes all the difference. I met my oncologist along with assigned nurse and a student on Wednesday and they are also very empathetic. I was unfortunately informed that my cancer is stage 3, so that certainly threw me a bit... I already had a PET scan a few weeks ago. Not sure if you've had one before, I was very nervous about it, but I actually found it OK. Less scary than I imagined it to be. I now have to have my MRI and CT repeated just to check on things, also positioning scans for radiotherapy. My treatment should start within around 4 weeks - which feels such a long wait on top of how long everything else has taken! 

I hope things get moving along for you now. The waiting and the unknown is horrible. I definitely think you're doing the right thing giving yourself a break from work while you get through all of this. I was doing some evening cleaning, but have had to stop for now as have been struggling a lot with the pain. 

I bought one of those sitz baths after recommendations on here... shall now also be looking for the other item! This people on here are great for advice and support :) getting ourselves prepared can only be a good thing.

Jenna xx

Hello forum family. Just coming on for a quick update. Got my MRI and PET scan results in on Friday. My Dr has not called me to read the results, but I have the “Follow My Health” app on my phone and the results came back and it says T2-N0 which I am assuming is stage 2, and no spread? I googled it a bit and that’s what I got out of it. Anyway, I am starting to gear up here at home and getting things ready. I have bought myself a couple night gowns, a few easy on and off pants, a sitzbath, a peri bottle, a cold cap, lotions and creams, some special mouth wash because I heard the mouth can become really sore from chemo, and a few other things! I had a “positioning scan” appt with my radiologist on Friday, and they told me it should be about 2 weeks give or take a few before treatment starts. I have done everything I need to do as far as scans, so now I wait for my medical oncologist and my radiation oncologist to get together and plan my schedule! I am anxious and ready to start already! My bowel movements are starting to become painful when I need to use the restroom, so that’s no fun  other than that I feel really good all things considered. Happy Mother’s Day to all you mommies!