Hi all, as I said on an earlier post I had seen my oncologist last Thursday as I was ending the fourth week of my treatment. My skin is holding up but darkening. The pain is at the entrance of my vagina which is very red. The bowel movements are so painful that I have to sit in a sitz bath. As it’s warm weather I have my windows open and sure my neighbours can hear me wimpering but I do try and keep it down! The oncologist gave me instagell which was one tube of 11ml. I thought I had to put the whole tube inside me but wondered why I only received one tube and what about the other days so gave them a call. It’s a good job I did as they said I only use a little at a time. My first attempt resulted it into shooting across the bathroom floor as it must have had some air in it. I don’t think it really helped but did I put enough on? I also asked for some flamigel which the oncologist said that would come from the radiotherapy department as they locked it all up. She said she would message them to give me a tube. When I went on Friday I asked for the cream and received a tiny 30ml tube? I have not asked for anything up to now and felt like I was asking for a lot. I just felt they are very hesitant in giving you anything maybe due to costs. I was offered paracetamol but I said I am happy to buy my own as anything over the counter I can get. As the oncologist has warned me it’s going to get a whole lot worse and I am feeling like I’m going to have to wade through treacle to get the products I need I’m feeling worried. Has anyone else felt like this? Also she said about starting the painkillers regularly to get into my system but if you can only take up to eight paracetamol in 24 hours and take them four hourly two at a time that means eight in twelve hours. Any advice? Also apart from pain in the bowel movements that I just cannot imagine being worse and maybe painful urination that I have not got yet what else have I got to look forward to? I eagerly look forward to your advice.
Hi Jaycee12 I used ibuprofen during treatment, this can be taken alongside paracetamol. Paracetamol didn't work for me. You just have to be careful with ibuprofen that you don't get constipation. If your bowel movements are on the hard side at the moment, you may want to take stool softeners (not laxatives) . Just check anything you decide to take with your treating team. For most people side effects build up during radiation and then begin to get better from about 3 weeks post treatment. I kept a diary during treatment and have just checked this. Diarrhoea began at week 3, day 3 and that's approximately when things started to become sore. I also had radiation cystitis for about 3 weeks so had to wee in the shower over water (I didn't know about sitz baths back then!). The doctors told me antibiotics would not work as it was not caused by a bacterial infection but by the radiation. This may not happen to you though, it doesn't happen to everyone. Pain during bowel movements increased but I didn't seem to have a real 'peak' of symptoms that some people talk about. For me, the pain began to reduce about 3 weeks after treatment but looking at my diary I would have some days with hardly any pain at all then I would have flare ups on other days when it was painful. I remember someone in our group recently talking about some sort of dressing that they applied to their skin which would stay on and was helpful but I can't remember what it was called, hopefully someone will know and post. The best thing I found was having 3 salt baths a day, I would have one immediately after a bowel movement, that helped massively. Bev
