Fourth week in

Hi Jaycee12,

Great to hear you’re into week 4 & your skin is doing well & that you’re having no bladder issues, I had radiation cystitis during my second week & it was so painful & there’s no treatment for it unlike with bacterial cystitis. Regarding the painful BM are you using any softeners to keep things moving easily? I struggled with what I thought was constipation during & after treatment & recall spending so long in the toilet in so much pain but in hindsight it was probably, at least partially, a lot of inflammation that compromised the space that there was to let anything out therefore softeners kept things moving easier & once I adjusted the dosage of the softeners things settled down a lot & were much more manageable. It’s a bit of a juggling act between struggling to go & going too easily & getting it right isn’t always easy. I agree with you about getting the ‘lump’ checked out with your oncologist, she’ll examine you no doubt & hopefully ease your concerns. 

I hope you get on ok with your oncologist on Thursday, let us know how it goes. 

Nicola 

Hi Jaycee12

It sounds like you are doing really well.  I too used to do my labour breathing when I went to the toilet too, so i really empathise.  Someone on this site advised me to get a portable sitz bath bowl, it was about £9 from Amazon.  You put cool water in, and put it over the toilet bowl, and sit your bottom in the water to go.  It helps a lot.  You mention silicone gel, I am not sure what that is, but do you have instilagel?  That is a lignocain gel, so it anaethetises the area.  I still apply that now before doing a bowel movement, that helps too.  And what Nikki says too about the stool softeners, stool softeners and drinking lots of water should help too.

Well done on making it to week 4, you're over the hump now and speeding down towards the end of treatment.

R xx

Thank you for your reply Nicola. I have had from day one on and off bowel issues. The first week was awful and they advised movicol. I took this to get things going and things settled down. I stopped taking the movicol as it was going the other way and I was very loose. Last Friday they said take the Imodium equivalent every morning but yesterday I wasn’t sure I needed too so did not take this morning. I am quite uncomfortable thinking I want to go but conscious I must not put on any pressure. I am glad I am having my check up on Thursday with my oncologist who I haven’t seen since the start of my treatment. I am counting my blessings that I am not in pain  (only during bowel movements)as yet! So pleased my skin is holding up as the longer it does I am not suffering the daily journey in discomfort. If it turns out to be a haemorrhoid I hope they can give me something 

Hi beyond terrified, I started using a gel StrataXRT which I had to purchase as the NHS do not provide this. I used this from the start of the treatment and it forms a silicone membrane on the skin which doesn’t reduce the impact of radiotherapy. My oncologist agreed I could use this after I gave her information on it. My hospital do not give anything at the start and wait for your skin to start turning red before they give you a cream which is flamigel. I wanted this on day one as the manufacturer advises you use it right from the beginning but unfortunately a lot of NHS hospitals wait to treat rather than try and prevent and wouldn’t prescribe. My skin has darkened slightly but not sore externally and I believe it is the gel but they said it may also be the skin tolerance. The radio therapist said it would not matter what I used as I would get sore but how can they say that when they will not give you the cream as manufacturers advise you to use right at the beginning? Time will tell and I probably will get some inflammation but I am trying to delay it as much as possible. I got a sitz bath on the advice of some of the members on here and it was very useful when I had the surgery.  I will let you know. What happens Thursday as it may be useful for some other members.

Hi Jaycee12

It's really disappointing to hear that some hospitals, like mine, provide creams from day 1, and others make their patients wait.  I fell that it helped me, but am pleased that at least you have something that seems to help.  Fingers crossed for Thursday, nearly here now.  Rxx

Had a positive meeting with my oncologist today. The suspected haemorrhoid turned out to be a skin tag! Very sore entrance to my vagina, ouch! Instigell given for painful bowel movements which she said some say it works but some say it’s useless. I am not taking pain killers yet as I cannot see how it will stop a stabbing pain felt but I was told to take them. Skin doing great so far externally with a little darkening but my oncologist has warned me that the next few weeks things will get tough. Oh my!

Well you're doing so well now.  Keep drinking plenty of water, you can use the instilagel anywhere that's painful I think, such as the entrance to your vagina.  I did find the instilagel helped but it does sting when you first apply it.  And if you haven't taken painkillers yet, at least you have those in your toolkit for later.  Nearly there now,  it's worst after treatment but when it gets bad, your 1 day nearer to it being over and being better.  R xx

Oh dear. I’ve just finished week 3 so a week behind. Using Insta gel as things are quite nippy. BM are all over the place but mostly soft so not taking anything so far. Your note that it’s going to get much worse puts the fear of hod into me. I keep thinking the nurses are hiding what’s coming next and just saying the minimal which is understandable but I would rather prepare. 

Hi DougleandPoppy, it reminds me of when I was pregnant and they don’t tell you how much it dam hurts giving birth! I suppose some don’t suffer as much as others but they want you to expect the worst. Some on this site experience severe side effects and some don’t. We will have to keep strong.

Hi DougalandPoppy

I agree with Jaycee, it's different for different people.  I think the position of the tumour also impacts on the side effects.  I had a non-healing wound at my biopsy site that broke down 1 week into treatment, but I used the creams, sitz bath, and oromorph and paracetal (because I can't tolerate ibruprofen) until the end of treatment and it was manageable.  i think it's really important to make sure your stools stay soft, whilst on treatment and soon after, and drink lots of water to flush everything out, and get plenty of rest when you need it, and you will be on the otherside of treatment and recovering before you know it. I was really frightened of the side effects, but in the end they didn't materialise to the extent I had feared.