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 - Dizzy1968 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 Emm44, ah yes the green pus! I remember it well and my labia used to stick together and I would have to tear them apart. I did manage to get this impregnated gauze that you could cut then slightly dampen and place on the sore bits which I just cannot remember the name but will try and find it. Isn’t it frustrating that you are given these creams and gels and not have anyone explain their usage? Skin creams are pretty hit and miss and I tried honey based which burned, silver based which burned and even E45 would burn. My skin was pretty sore internally for around four weeks and then started to improve. Some people can recover much earlier and hopefully you will too but you will get there.
I was in this exact place 2 weeks ago so it’s still very fresh in my mind!
I was only prescribed flamazine when my skin was broken and ‘moist’ and i used it a lot more than once a day! In fact, I used it every time I went to the toilet. I delicately rinsed myself in the shower and then reapplied it. I think, in my experience, the flamazine dries out the skin where it’s moist so you’ve then got to be careful not to use it for too long as it caused my skin to crack and bleed. My nurse said use flamazine where it’s broken and moist and a moisturiser everywhere else. I was prescribed Diprobase moisturiser.
I spent the first week after treatment in bed as it was nearer the bathroom and it was too painful to walk around. When I did surface from bed I dealt with the lovely green puss by wearing a nightie or a dress and just putting a towel between me and wherever I was sitting. Staying horizontal helps! And rinsing in the shower helps if your labia sticks. I think it’s the green gunk that makes it stick. Yuck!
my skin started to improve on day 10/11 and now, day 15, my skin is almost healed. I started using cavilon as someone on here helpfully suggested as it doesn’t sting and Diprobase does.
Weeing under water stopped for me at day 10/11 too and I haven’t used my sitz bath for bowel movements since then, although they are still a little painful, they aren’t anywhere near as painful as they were! The green gunk started to lessen then too and is now gone.
It definitely felt like a never ending regime - I’m with you there!!
Look after yourself and remember that although the sore skin is horrible, it’s temporary. I really feel for you having your son to care for but it might be the perfect time for films in bed and snuggles
You sound super-organised to me! I had to write all the various instructions on packets to remind myself what they were for and how to use them. I am pleased Cavab24 has replied to you as her dressing regimen seems much more similar to what I was prescribed. I used Flaminal (Hydro / Forte) alongside Polymem dressings, and the instructions on that said use every time you have a bowel movement or pass urine but I am pretty sure that would apply to any sort of cream.
I'm didn't have any sort of routine in the early days, I was going to the loo so often that I was applying creams and lotions day and night and the rest of the time I spent asleep or resting. I wore Tena pants and slept on a waterproof sheet, my husband slept in the spare room as the only way I could get comfortable was to lie, legs akimbo and it would be duvet on, duvet off all night to keep fresh air circulating.
I do hope you have some help with your son next week in school drop-off and pick-up; I have been thinking about you, on minimum painkillers, soldiering on and I am in awe of what you are doing.
Oh Em, this is such a mind-bender. Finishing treatment is a huge goal, but the challenges of early recovery are so .... challenging. And you're managing so much on your own. You awe me.
I'm of no help with the creams and ointments, as I got none. Well, they gave me one but I had an instant violent reaction to it and they had no other suggestions. I had to try things on my own and fortunately did find a few that helped.
I sat- well, lay back in the lounge chair- for a while every day wearing nothing but a sarong, and towel under me, and let it all blow in the breeze. It did help, a little, and a little more eventually.
The first week for me was just getting from bed to couch to chair between visits to the loo. I tried to get out for a little walk in the garden every day just to lift my spirits, but couldn't always.
My heart is with you, and your son, and how brave you both are.
Hi Em44 ,
Firstly congratulations on finishing your treatment. You do seem to have a lot of choice where creams are concerned & I think I’d be a little confused at what went where & when too! I was literally given QV cream & flaminal cream to use during treatment & Flamazine was provided the day I finished treatment, the Flamazine stung a little when I applied to the worst of the burns so I mixed it with a little of the QV cream which helped but my skin hadn’t completely broken down so I may have been given more creams if it had. I think when everyone speaks of the 7-14 day recovery period this is the time that it takes for your side effects to peak following your last radiotherapy session. Personally mine peaked around day 11 & I realise I was lucky but there were marked improvements day on day after that to a certain point. Do whatever you need to do to get through these next couple of weeks, I realise you’ll have your son back home from tomorrow but you’ll probably get through easier if you rest as much as possible. My youngest daughter was 16 when I went through my treatment so she was pretty self sufficient so I spent those 11 days post treatment going from bed to bath to sofa to bath then back to bed again, I had zero energy & I slept a lot.
I hope you start feeling an improvement really soon.
Thanks so much Cavab24 (Claire) - really helpful info, as you say all fresh in your mind - yay you've got through it! Congrats
I so long to be where you're at, feel like time's standing still a bit now & impatient as want to get be outside enjoying the lovely sunny weather we're having! At least weather is helping with all the washing I'm doing due to the green goo! When I'm in the bath I keep separating labia and let the salt water get in to hopefully help. Luckily not sticking together yet, I do think that sorbaderm helped initially as forms a film on skin. I defo feel the whole vulva area is swollen and stenosis occurring. I did mean to get dilators from beginning to see if it'd help but gets to a stage too sore for that anyway. Doesn't feel great feeling everything narrow, eek!
Info on flamazine really helpful...I used it a few times yesterday and last night my groin area / top of thighs started itching during night and broken a bit now. On plus side I think that's the last place to break ha ha. I didn't have itching with other areas, so will perhaps use it twice a day now (on moist areas) and moisturise in-between, see how that goes.
Yep I've been wearing some stretchy boxer style shorts (never normally wear) that I can place lower down on hips so they don't actually touch parts between legs, but catches any drips etc.. ahh that turns my stomach thinking of it! Some areas appear to be passing that green gunk phase
So good to know about other stuff clearing up too - helps me knowing a rough end point to it all. All of this does make me appreciate just the basics from before, like sitting on a normal loo for a wee! It'll feel like bliss when it happens I can imagine!
Yes my son bought up a card game to play with me on the bed, bless him. I felt so bad as I kept saying to him I need to go and lie down, so he came to me as he knew I didn't want to nod off...my heart melts and really appreciate his cuddles at this moment. Enjoy the lovely weekend we're having & a little more normality in your life again, well done on getting through it Xx
Thanks Irene75359 all helpful info. I'm trying to get up and just sit on sofa for part of the day for some normality. I've done a few household bits as I keep telling myself some movement of the area will hopefully help, but not forcing myself and my home definitely looks like a bombs hit it now! Hey ho, my bathroom issues are far more of a concern to me at moment and likewise spend a lot of time in that area.
I wish i'd thought of a waterproof sheet / even something like a puppy training sheet would have helped. Luckily I keep some old towels that have come in handy. One bonus of being single is I have the big bed to myself to sprawl out on - I was very much the same last night, duvet on & off all night. I even got some of my water wet wipes and just lay them all over the radiated areas to cool me down!
Thank you for all your kind words, bought a tear to my eye (in a nice way ). I do think of all you amazing individuals who've done this already, it really keeps me going through it all! Xx
Thanks so much ridetbred I'm truly in awe of all of you who've done this before. I'm astonished you only had one cream / ointment offered, amazing how different it all is in different areas. Glad you found something eventually, but just another 'thing' to sort out at that time I imagine.
Ahh a sarong is a great idea! I'll have to rummage around for mine, but it'd be perfect for just now....as would some airing out in that area, I'll have to find a secluded spot in garden - although my next door neighbours certainly would get more than they bargained for if caught a glimpse of what lies there ha ha. Should come with a warning sign I think I'm at that stage of if I don't laugh i'll cry!
Will try to get out a little tomorrow, we're having such nice weather at moment and it's horrible feeling stuck indoors. It'd defo lift my spirits. Thanks for your kind words & hugs too - as I mentioned to Irene, I do think of all you amazing individuals who've done this already, it really keeps me going through it all! Xx
Ahh Nikki65 many thanks Nicola! Yes I've got too much choice I think, but hopefully have some sort of routine sorted for now. Really helpful to know what your regime was. Can you remember if you used the flamazine more than once in a day? Good to know about mixing it, think some areas would benefit from that.
I feel a bit in limbo / like time's standing still at this stage, wishing away the days. I'll focus on the 14 days for improvements in side effects...it will be a joy not to keep filling sitz bath to have a wee. Made me think I'm sure we used to have bidets in bathrooms all the time few decades ago or perhaps I'm mis-remembering with trips to European countries who still have them. Sorry getting side-tracked on bidets (what has my life come to? ha ha!). If side effects lessen sooner it'll be a bonus!
This is my countdown now and in some respect having my son will help it go faster. He'll help me to keep some movement going and some routine to a day, although I will definitely be resting a lot when he's at school which passes by way to quickly! Thanks so much - look forward to letting you all know I'm at the other end soon. I hope you have a nice weekend and enjoy the sunshine xx