Post Treatment Q's + Skin Care Regime - Advice Please!

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Hi All,

First day post treatment and I’m struggling a bit.  So very tired & slept until 12pm. Luckily my son isn’t back with me until tomorrow. I’m starting to realise I need a new routine for skin to heal.  It’s all broken near vagina and around anus area.  I’ve had green puss like stuff that started from last week. I’ve also had the skin on inside of labia break and bleed which has added pain to urination! I constantly drip from labia and somewhere around anus.  Too painful to have contact with clothes but with dripping need something loosely present so been going through many knickers a day. I presume this is to be expected?

The thoughts of all this getting worse is getting me down.  But I suppose I am avoiding morphine at moment and still miss times of painkillers due to sleep / just forget so I imagine that’s not helping.  I’m going to set regular reminders on phone from now on!

I’d really appreciate it if others could let me know their routine at this stage.  I’ve been lucky and got various creams & stuff given as I did read a few posts on here before my last meeting with skin specialist.  But now I’m not sure which to use and when.  I think some may be redundant until I get passed this particular stage.

I have flamigel RT & QV Ointment that was provided at start. I was provided then instagel and mix last week, but it feels a big gooey mess when used it. Although I did note my skin got a little drier afterward I took it off and didn’t replace with another. The aesthetic is helpful.

But now I’ve also been given sorbaderm -   I saw you had posted about this, can I ask at what point of your treatment you were given this and was it just for a specific area you suffered with? It’s to help me with my sores on labia. I was given a box and with pre-loaded swabs and I dab it around the sore area. A barrier is formed but still provides a healing environment so this is a great help & only 30seconds to dry.  I read it’s designed to be used on damaged skin, providing a non-stinging waterproof film barrier (lasting approx. 24hrs) to protect that skin from irritation from urine or feces.  I’m not sure why this is not an automatic option for us? I asked for Cavilon cream initially after reading it on this site but I was given this as an alternative.  It definitely works and really would advise that most would need this at some stage of this journey, unless their skin doesn’t break at all I guess. I'm not sure if it could be used alongside the radiotherapy or only afterwards.

Yesterday I was furthermore given flamizine – says to be used once a day only.  So now I have the whole lot of stuff and not sure what to use & when.  I’ve done a patch test on my skin first with flamazine as some may get skin irritation on this. 

So I’m thinking of the following routine:

- Get up – hopefully have a bowel movement etc.. then Epsom salt bath.

- Air dry, use flamizine,

- once that’s dry use the sorbaderm in certain areas.

- Then through day with the sitz baths use Instagel mixes if needed? Or flamigel RT? Do you think I need anything other than using the flamizine once a day? 

Sometimes skin feels tight after applying certain creams so I also find a general aveeno cream for dry skin is helpful too.  Feels a never ending regime between bathroom and applying stuff at mo and not sure all the cream /gels are needed / mix well with each other!

When others have mentioned the 7-14 day recovery period, is that just for when radiation stops and skin starts to heal? Or does that involve other impacts such as , the urinating in water stop then and bowel issues lessen a little? Appreciate we are all different but just not sure what to expect / how long is typical for certain effects to last. Sorry for my rambling as usual lol. As always, many thanks for any help on any of this xx   

  • Hi   

    I can’t recall being limited on the number of times I could use the flamazine as I had a letter to hand into my GP practice & it was requested that it was put onto repeat prescription for as long as I needed it. 

    I'm pleased you’ve got into some kind of routine with your creams etc., & yes I remember wishing those early days away too, I slept away hours over those 11 days post treatment & absolutely rinsed every streaming service known to man! I had a couple of friends visit but to be honest I couldn’t wait for them to leave so I could continue to wallow in my own discomfort! That sounds terrible but it’s genuinely how I felt. 

    I hope this couple of weeks pass quickly for you & you start improving really, really soon. Thinking of you. 

    Nicola 

  • Hi Nicola, yep I mis-read the instructions with the flamazine, it just said at least once daily, so I've used a couple of times.

    Ahh I have avoided friends at moment, just too much going on - yes i'd just be wanting them to leave too so completely understand how you felt! It's at times like this we need to be a little selfish or should I say give ourselves some TLC! 

    Thursday was a turning point for me as I didn't need to use sitz bath any longer for a wee...psychologically gave me a lift. Although at times it's still a little sore / stings but I presume it's just the radiation still.  Bowel movements not 'as sore' either thank goodness! So skin still healing over and still some parts peeling away.  Wish it'd all happen at same time lol.  

    Been able to spend some better time with my son, whose been so patient with me bless him.  We were in the garden yesterday playing a couple of games (non energetic!) and had a picnic so that was nice.  I also managed a short walk to my local shop on Friday, although I was very slow.  Little by little getting back to some sort of normality, defo over the worst of it, feeling happier and looking forward to some proper walks / hikes soon! Raised hands

    Hope everyone else is ok and having a lovely weekend, managing to stay cool Xx

  • Em, your day of games and shopping, however slow and easy, is such a milestone! I'm so thrilled for you that you are already able to take some time to just enjoy your son and a picnic. You are just amazing.

    Suz

  • Hello Em

    I am so happy to hear this, and also that your son (who is still very young) understands his Mum is fragile.  But you sound so positive, I am sure that when you were in the thick of it you thought these better days would never come!  Little steps, and be very kind to yourself too, don't try to do too much.

    I hope you had a lovely weekend too.

    Irene xx

  • Aww  , this is so good to read that you’ve had an upward turn, it definitely sounds as though you’ve turned a corner although don’t feel too despondent if you get the odd day where you can’t or just don’t feel like doing much. I would find in those early days I’d have a few good days where as you say things feel like they’re getting back to some kind of normality & then I’d have to have 24 hrs where I did nothing at all. The fatigue was by far the most prevalent side effect for me. 

    Onwards & upwards, you’re doing amazing. 

    Nicola