New to group

Hi Malay, welcome to the group. So glad you have found us. Many of us here are post treatment, going through it or just at the start of it. I am over three years post treatment and remember so well being where you are right now and being so scared of what has happened and why. Googling helped you find us but some sites really are really outdated and should be avoided. Im glad you have ordered your sitz bath. Before the very start of my treatment I did some research on a gel called StrataXRT which I bought online to help protect my skin through radiotherapy. Many got by on other creams but these have to be washed off before you have it but the gel I applied could be left onput on  24/7 applying it every twelve hours. My external skin thanked me for it. 
Regarding telling your friends you have anal cancer, I only told close friends I was comfortable with and some strangers would ask but I would say that it’s private. Why should we have to say anything. It was hard to tell my daughters but they were both adults and married and I was just glad they had someone to support them. I am married and my husband was my rock but I was really scared and started mentally distributing my jewelry etc ready for my life ending. It was very morbid but when I found this site it gave me so much hope!  My cancer had not spread but my oncologist said they zap the lymph nodes with radiation anyway just in case so I had the full five and a half weeks. We do get side effects as time goes on but they don’t come all at once. I hope you have a good team at your hospital. I had lots of support from my specialist nurses who were there for me all the way. I am living a great life but do have some minor issues with some IBS like symptoms controlled by avoiding certain foods I can no longer tolerate. I hope you soon get your start date so you can plan things. People on here say to bulk cook if you can so that you can freeze meals to make life easier as whilst you are going through treatment you can get hit with bouts of fatigue. I won’t bombard you with loads of tips yet as you have still got to get your head around your diagnosis.

Julie

Hi Julie

Thank you very much for welcoming me and replying, could I ask where did you get the cream from? I’ve looked online and there are several different ones ( quite expensive) but if it works then worth it!! I feel very lucky that I have a good support network around me, my partner is a beautiful soul and my family is quite large, and my friends make me laugh. I definitely will stock up on creams and batch cook some casseroles etc. ant thank you again for your tips and chatting xx

Hi Malay, I am really glad to hear you have a good network around you to help support you through the treatment. The gel I got was the StrataXRT wound dressing for radiation dermatitis. This can be purchased from MWK healthcare ltd. They have a really quick delivery service. I agree it really is quite expensive but the tube is supposed to last through the whole treatment and the two weeks after. I got the large tube and you spread it around the vulva and anus very thinly and it forms a transparent film which you don’t feel. When I first tried using it I applied too thickly and it was sticky which was wrong. Also when you go to the toilet and have to keep the area clean you have to reapply again. I had problems with creams like e45 and honeymed due to allergic stinging but we are all different and some are okay with these. My radiotherapy nurses were not that helpful with suggestions of creams early on but I think it was due to finances and only giving you them when you really need them rather than prevention. You are bound to get someone in this group about to start who you can share experiences with which can be so helpful and you are not on your own. 

Julie x

Hi Julie

yes I have just ordered some so thank you for that, I’ve only got the 20mg tube just to try it, fingers crossed it will help a bit. I will know more about going forward on Tuesday so will message you then if that’s ok.

Hi Malay, I will be thinking of you Tuesday. My first appointment involved my oncologist running off a bucket load of side effects which most of them never happened but they do have to tell you all possibilities and then said you are young (65 then) and you will get through it. 

Thank you and I will let you know how I go.

Hi Maljay welcome to the club no one wants to join. I'm currently undergoing treatment and have my last 3 radiotherapy sessions this week. I've been given lots of creams by the radiotherapy team. It's your cancer and its your business who you tell but please don't feel embarrassed by it. I would say to ask your medical team about anything you do or use that is not advised by them as I initially soaked in epsom salts and happened to mention it at my weekly progress appointment and was told to stop. Water wipes are handy once you get into treatment as you won't want regular toilet roll. Good luck for Tuesday. Sending hugs. Xx

Morning Malay I just wanted to add something about the StrataXRT gel. When I initially mentioned it to my oncologist she had never heard of it and said to ask the radiotherapy department when I went to get my tattoos ready for treatment. They just stood there looking blank and said they had never heard of it so I asked what they recommend and still they didn’t offer any suggestions. I also asked if I should ask my MacMillan nurses and they said what do they know! In a very sarcastic manner ( visited PALS after being advised to by my team for very rude behaviour by a particular ginger haired radiologist who turned out to have form for rudeness). I contacted LEEDS hospital who trialled it with great success and was contacted by them to say it was ideal, effective and safe to leave ON during the treatment whereas other creams have to be removed. I went back to my oncologist and she had investigated it and said she had no qualms with me using it and due to the costs LEEDS hospital didn’t continue using which was a shame. Different hospitals follow their own rules but I’m glad I insisted and think if we inform ourselves and tell our teams why, they usually will allow it especially if they cannot say it’s unsafe. The one thing I found at my hospital in Addenbrookes was the lack of knowledge amongst the radiotherapy team in advice on skin reactions to the treatment and probably tied to money saving methods. They were very tight with creams they gave out and on the start of the treatment I enquired about flamigel RT which is supposed to be used from day one of treatment according to manufacturers but they refused and told me to used e45 and when my skin deteriorates they would give me some! So I decided to take my health in my hands and buy the StrataXRT which I don’t regret.

Julie

Thank you Julie it’s so helpful to be given some advise and I will ask about it on Tuesday but it’s good to be ready 

Thank you very much I appreciate that