E45

Hi Ballerina 

This is what I've been using. I started using flamigel on week 3 of treatment also which the hospital gave me. Starting week 4 today and have found over the weekend that the E45 cream isn't really helping much anymore so gonna speak to them about that today. When i started treatment the hospital told me to use E45, aveeno or 99.9% aloe vera gel. They weren't specific about which E45. Good luck for the 18th. Xx

Thanks Bungle1, how have you been feeling during the treatment? Are you having Chemoradiotherapy? If you don't mind me asking are you still working? Apologies for all the questions,  I understand everyone is affected differently and I don't want to scare myself by asking how you are but as I understand we're all here for each other, for better or for worse xxx ️

Hi Ballerina - I would say only use what the RT team say is allowed - I used flamigel (get some more in before you need it) and a strong barrier cream (cavilon also prescribed and really helpful when sore to protect skin in toilet and bathroom.  Normal moisturisers just did nothing and often stung. Even aqueous cream was not good - but used for showering.  Talk to your team every day - do but wait just pester until you are feeling good x 

All the creams I also bought as was scared of running out - but can be expensive.  Use the cancer care line and speak to anyone but just your nurse.  I spoke to some really helpful people who had other ideas which helped! 

thinking of you x 

I was OK during treatment. It wasn't great but I was able to manage with just paracetamol for the soreness. It is scary at the stage you are at learning about all the side effects and I don't want to give you false hope that it won't be unpleasant but not everyone gets all of them. My experience with the hospital was that they were really responsive and prescribed lots of medicine just in case. I was prescribed codeine which I only took occasionally and stool softener which I did not use as the treatment took care of that particular problem. I would recommend saying goodbye to toilet roll and not sure if you are male or female but would prepare for your genital area to be affected too..not a lot of people talked about that symptom when I was having treatment and it made me anxious because I was worried I was abnormal. They didn't really mention the effect on the genital area during consultation and there isn't loads about it in the information booklet. This forum was really useful for me to 'just check' whether other people had experienced what I had. I'm 9 months out the other side now and the treatment was still absolutely worth the few months of unpleasantness. Good luck with everything xx

I am female, I have ordered water wipes as I read something on here about them and I will order a sitz bath for the toilet seat. I want to try and be as prepared as I can. I've received a booklet which explains about Infertility, scaring & tightening of the vaginal passage & Dilators being issued. There is so much to think about asking. Xx

There is. I'm only 36 and don't have any children so the first thing they did was refer me to fertility to think about freezing my eggs which ultimately I decided not to do as I was concerned about laying treatment. I must admit I'm not very good with my dilator and set a new weeks resolution every week to get better at it.

Hi, I'm sorry to hear that you didn't get to freeze your eggs, this must have been a really tough decision for you. I'm 46 with a daughter who's nearly 15. I've not looked into any detail about the dilators so not sure what & how they work but I guess there's a valid reason for them issuing them. I do feel sorry for my husband because with everything that's been going on I've completely lost all sexual drive that I ever had. I also have MS so I'm really just focusing on myself at the moment as I want to try & stay as strong as I possibly can. Xx

Hi Ballerina ask whatever you like I don't mind. On the whole I don't feel to bad, I am sore and i seem to get overly emotional at the end of each week. The chemo made me feel sick but it was bearable. I have had some wind pain which paracetamol has taken care of. Started using water wipes last week. Feel like I need a poo all the time but they explained to me it's the swelling tricking my brain. Yes having chemoradiotherapy. Haven't gone to work it wasn't really practical as I have 2 hrs round trip to get to hospital plus appointment and trying to find parking and work was completely opposite direction. In terms of how I felt could have gone the first couple of weeks after that although I don't feel to bad pooing takes a while. It hasn't been as bad as I expected. Xx

Thank you so so much for replying, you've given me a glimmer of hope. My tumour was removed but cells were left behind which I believe can be felt on examination but I don't feel the need to have a feel myself. I keep telling myself it's 5 1/2 weeks of treatment, maybe a few months after of discomfort but hopefully this won't be forever xx I'm trying to focus on some positives over constant negatives xx

Exactly couple of months it will all be done and you can get back to your life. You got this. Xx