Just about to start treatment

Welcome to the club nobody wants to join! I don’t have a stoma, but my tumour is same as yours - squamous cell T3N1. I’ve just completed my 12th of 28 treatments. Feeling a bit tired in the afternoons now, have some minor soreness around the anus (mainly caused I think by the need to poop 3-4 times in the morning now almost as soon as I get up) and I’ve moved to a fairly bland diet to keep stools reasonably solid. But apart from that all is good and I’m feeling Ok.

Wiping will become sore - I bought a peri bottle (lots on Amazon) and use that instead of paper to clean after a bowel movement. It was a great investment and I don’t think I’ll stop using it. Listen to your body and rest if you feel tired. Ask the nurses anything and tell them if anything is worrying you. They will be able to reassure you or offer help. 

Be prepared for a long day tomorrow if you are getting a chemo infusion (I had a short 10 minute infusion on day 1 and everything after that is tablets for me) but after that the radiation sessions are quick each day (15 mins). 

happy to answer any questions you have. No question is a stupid question and everyone here is so helpful and talking from lived experience. 

Hi and welcome. It's not easy starting treatment with all tge questions, worries and preparation.

Im in my fourth week and uts been ok. I have a rest during afternoons and take antisickness pills. Im also getting a little  tender xown below but apart from this its gone ok so far.

On the positive side my lump is almost gone after three full weeks of treatment and now I cab see thr results which the doctors arr aiming for xx

Thank you for replying. It’s good to read how people are getting on during their treatment as it’s the not knowing how you are going to feel. 
Yes I’ve got my chemo infusion at 11am tomorrow and then my radiotherapy at 14:40pm so it is going to be a very long day. I’ve read a few people mention the peri bottle so might order one just incase.                        Is there anything I can take or use to prepare for any of the symptoms that may happen?    Thank you so much x

I would say take antiaickness as soon as you wake up in the day when you start chemo tablets as they make you nauseous. Drink plenty of fluids and have rests in the afternoon x

I took the anti sickness tablets just for the first two days (because I had an event to go to on the second day and didn’t want to be ill). I’ve not taken any since then and I’ve been absolutely fine. 

something I have been doing is to take a light dressing gown/wrap with me to my radiotherapy appointments. It saves the NHS from having to launder a gown every day and it saves me from wrestling with a stupid gown that won’t tie up or keep me decent!  I’ve also got my drinking down to a fine art and do my bladder filling on the drive to the hospital so I don’t have to arrive so early. 

Definitely stop using dry toilet paper now if possible. Either water wipes or a peri bottle. Will help guard against soreness, which will be inevitable but may be delayed with care. 

good luck tomorrow. Let us know how you get on.  

Sarah x

Hi  Eljo68d097 

A warm welcome to the forum and sorry you’ve ended up here, there are a lot of kind helpful people on this forum that have been through or are going through the same treatment as you so please feel free to ask any questions you wish.

I finished treatment about 16 weeks ago and recently had clear scans and a clear DRE.

Your first day is likely to be quite long and tiring but once you get underway and are into a routine your nerves should settle down and the treatment days will soon pass.

I didn’t have any sickness but the IV chemo I had on the first day did make me feel a little like I was coming down with virus or something but that soon passed and the chemo tables didn’t give me any sickness or any other problems, although others have had reactions to them and you should be given anti-sickness tables to take if necessary and other items such as creams and mouthwash on the day. The hospital will also monitor your blood each week to make sure you’re okay with the chemo.

The radiotherapy itself is quite painless and usually only takes about 15mins although you do have a certain amount of fluid in your bladder so preparing for that on the first day will take a little longer.

With the radiotherapy treatment the side effects usually build slowly so you’re not likely to notice anything in the first week, and as we are all individuals we all have different reactions to it, some mild and some more severe. A lot report that the discomfort starts to build around the 3^rd or 4^th week of treatment and the exterior can start to become rather painful as do the bowel movements, although as you’ve had a stoma you should escape this. Although even with a stoma I think you’re likely to see some leakage as you go through treatment so preparing for that would be a good idea.

If you start to have issues during treatment the radiographers you see everyday will be able to help and provide you with any creams or painkillers that you need.

Wishing you all the best for today

Monty xx

Fantastic news regarding your scans Monty xx

Hello and welcome Eljo68d097

You have had some fantastic advice from the group, so will try not to duplicate.

I also had a stoma fitted pre treatment, for me it has been a positive experience and really helped during treatment.

Chemo definitely increased my output and made it water like, my bag would also inflate like a wind sock. I had chemo IV so not sure if tablets might be different. Keep a check on your fluid intake, so you don't get dehydrated. I made electro light drinks each day, so I did not suffer from dehydration. Applesauce and banana also naturally thicken output. Near the end of chemo I also took a few imodium to control the fluid loss. This settles once the chemo has finished.

During treatment I was very strict with my diet, I didn't want to risk a blockage. Chicken, fish, rice, carrots, eggs, liquidised thin soup, noodles and broth. I also stopped eating about 3 hours before radiotherapy, then had lots of light nutritious meals after.

Regarding clothing, the team let me wear vests during treatment, so once I got on the table I tucked my bag underneath, arranged my knickers and they did the rest. I always emptied my bag just before treatment.

I always wore pads and period knickers due to mucosa coming from my anus. The mucosa is still coming now, totally painless and is probably due to proctitis.

I still got some burns and my anus was sore, but having a bag means we don't have those horrible painful BM's. I did pass some very small stools during treatment and some weeks after, maybe tumour or small feaces.

I creamed my bikini area pre treatment and continued during and after. I only used creams I was familiar with and non scented.

Sitz bath was great and after treatment I used pure non scented epsom salts, having a soak felt so relaxing.

A new stoma and chemoradiation is a lots to get your head around, check everything with your team and don't be afraid to ask any questions....everybody is here to help.

Also everything gets more relaxed after that first day.

Ally xx

Hello Eljo68d097 

A warm welcome to the forum although I am really sorry that you ever had need of us.  However, you are amongst people who really know exactly what it is like and who can offer lots of tips and coping strategies.  The treatment is tough but doable and has a very high success rate and as you will be starting today, get a calendar and mark off the days.  It is remarkable how quickly they pass.  Today will be tiring but the daily visits thereafter will be much shorter as the radiotherapy itself only takes about ten minutes.

You may come to view your stoma as a blessing as you won't have the loo problems some of us suffer, as the anus and surrounding skin can become very tender as treatment progresses.  Keep the whole area heavily moisturised except when directly before a radiotherapy session.  Keep your treating team informed of any symptoms that you may need help with, they have an array of medication that can be given to you the same day, so please don't ever suffer in silence.

My best purchase was a Sitzbath - a portable bidet available on Amazon which just sits on the loo.  Wonderful to bathe the nether regions in lukewarm water as treatment progresses.

Please let us know how your first day goes, we are all thinking of you.

Big hug

Irene xx

TheMont Wonderful news about your scans, and well done having a DRE (I wimped out at this stage!) xx