4am Long & Ranty Update!

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So it’s 4am & I need a rant!! I can’t sleep, or stop bloody itching, or constantly needing to pee, but not wanting to pee bcos of the burn, and then the need to reapply all the cream, only for my nether regions to feel constantly wet, from what feels like constant leakage from front & back orifices, I’m red raw  (although not weeping - yet) & it’s only Day 1 of finishing my treatment!!! The thought of 2-4 more weeks (plus??) of this is driving me insane already!!

Which is ace to be fair, as I’ve made it this far (had been dreading the whole thing so much) & come out relatively unscathed - touch wood (for now). However my main fear - radiation burns & my attempts to prevent them have proved futile & regardless of using the Strata cream religiously - I’m in the same sorry boat that most of us I suspect ( but not all) find themselves in - feeling thoroughly frazzled down there & burnt to a cinder. 

Most of my rant is at my hospital for basically allowing you to fry & then only handing out flamazine right at the end. When I know that others actively assess for your likelihood of having a severe skin reaction to begin with & then give the respective creams & dressings to help you through from start to finish. It’s made me so mad!! I think with my hospital it’s prob a cost thing. From another patient they were told it’s bcos “there’s no evidence that anything else is effective or safe” which is absolute horse shit bcos I’ve (tortured myself further by!) reading countless studies proving otherwise & have seen the proactive literature that some hospitals give to px’s regarding skincare & management before they start treatment. Mine really played the whole thing down & I watched others buying it. Grrrrr!!!! 

As for the Strata it has helped my skin to not dry out completely & crack & I’m not yet in full moist desquamation. So it has helped - but I can’t afford continuing to use it. I’m also really p’d off at my hospital for basically treating all RT patients the same - whatever happened to personalised tailored medicine?? So we all get Flamazine at the end regardless of the state of our skin. From using it today only - it is somewhat soothing - but feels very drying, which is obviously great if you’ve got moist desquamation - but I haven’t yet. I couldn’t be bothered asking the nurse if it would just dry my skin out further as I know what her answer would be so I’ve just ordered some Flaminal Hydro to use - as it seems more hydrating & may be all I need? We shall see…

Anyone found a solution to the constant leakage of watery discharge? Aside from the thicker stuff?  I keep blotting myself with a piece of kitchen roll but it’s not v comfortable & neverending. Does thus contaminate any open sores & increase chance of infection??


Heigh ho & I know it could be worse….As for radiation cystitis -I think I’ve got that. Does cranberry help? Will start tomorrow & try to drink gallons of water too - which has been a struggle with the nausea..,,I don’t think it’s a UTI but will keep an eye on it. 

Oh & another joy - my poor urethra seems to be protesting as well as my last visit ended up in spray going horizontally everywhere- & all over the floor including my clothing. I ended up having to stand & pee in the bath! 

Makes you realise how much for granted we take all our plumbing & drainage & bits until they come undone. Like how you never really think that gravity plays a real part in bowel movements until you have a stoma - where them coming out of your abdomen means you don’t get the same clearance & you get a lovely thing called pancaking….I digress….any ostomates will know!


Anyway if anyone has persisted reading this then thankyou as having got all of that off my chest I feel a lot better!! But no help to anyone else however…

What’s your rant today?! I’m all ears & going nowhere!! 

xx

  • Hi,

    I'm about 2 weeks further on than you, and I feel your pain!!  The good news is my skin is almost healed now (I just have one raw bit around my bottom left).  I too felt that care was a bit reactive rather than proactive, but I've been using the Flaminal Hydro on broken skin and the Flamigel on everything else.  I'm in the UK so I don't have to buy these though. 

    The best thing I've used is a type of foam dressing called Polymem which is a pink roll that you cut to suit.  You wet it and I've been wearing lycra boxer shorts to hold it in place like a panty liner, and I have to say that has been far easier than the creams.  It absorbs any discharge too.  I found that the Flaminal Hydro sort of dried to a film which then cracked overnight (I was using it in my groins(?) - the creases between leg and body) and so found it uncomfortable after a while.  The other problem is just keeping the cream "on".

    I could not have survived without the squeezy water bottle to squirt as you pee - have you got one?  It was recommended on here and it was vital!!  I squirted the general area as soon as I sat down (I found luke warm was the best) and it stops the stinging on the surrounding areas.  I also used flushable wipes (for sensitive skin) which were fine even on the broken skin, but I know exactly what you mean about dreading going to the loo.  It's such a faff every time to take all the dressings off, fill the water bottle, endure the burn, and then put it all back on again... I too didn't like drinking plain water (I think it was from having to do it before radiotherapy every day!) so have found drinking squash easier.

    I didn't find the pain too bad - the most I used was ibuprofen - but had been dreading it.  I have spent the last 3 weeks just in bed though as I couldn't really sit down and I've been exhausted (although I have been on antibiotics and in hospital twice with a temperature which hasn't helped) but this was possibly a PICC line infection rather than anything "down there".

    It is horrible thinking that there is worse to come, but once you start healing it does get better very quickly.  Hang in there and if you'd like to chat more or have any specific questions please shout.  It truly is a barbaric treatment - they burn you to hell and expect you to pee and poo through it - but you will get there.  Just got to keep going I'm afraid.

    Sending you a big hug,

    Kate x

  • Hello Ninka

    I am really happy to see that in spite of everything you haven't lost your sense of humour!  And the forum is a very good place to have a rant if you need to, sometimes I read of experiences (such as yours) and it all comes flooding back to me and I think, did I really go through all that?  But the mind is a wonderful thing and the really intense memories of the experience do gradually fade - honestly!

    I used Strata religiously, two large tubes and I still had burns and needed to see the tissue viability nurse for some weeks afterwards.  The hospital treating me spared no expense in prescribing me a variety of creams and dressings, however, Strata wasn't one of them and I had already printed out the instruction leaflet and given it to the head of the radiotherapy department, she was really interested.  When I looked at the price of some of the items I was given afterwards had I bought them myself, they were horrendously expensive and altogether easily topped the cost of the Strata cream.

    Discharge is common In the early days but that does improve.  But kitchen roll - ouch!  I used baby wipes that were for very sensitive skin and extra long panty liners.  In the early days, I used the Sitz bath filled with lukewarm water as a loo - it was the only bearable solution for me, as everything was less painful under water.  Don't go too long without seeing the doc if you think you have cystitis, you may need antibiotics.  Also, anti-histamines can help with the itching.

    You are absolutely right about our plumbing and drainage bits; they are so essential and it isn't as if we can stop using them in order to heal which is why there are so many hints on here on how to get through this period.

    Sending you a big hug and please come and rant any time!

    Irene xx

  • Hi Ninka,

    Well done on making it this far - I know we none of us have a choice really but I think some credit is due!

    I'm 5 weeks further on than you are and so want to send some encouragement to you and to Kate. I find I'm a bit like a toddler and if I feel awful I think I will feel like that for ever - but things will definitely improve and you will appreciate each small thing. By the end of week 3 I was actually able to leave the house for a short walk in the park and that seemed amazing. I had been really upset that I lost so much weight and that I couldn't think of a single thing I could bear to eat, but by week 3 my appetite had come back and now I feel I can help myself by eating well. Eventually I may have to reign that in but at the minute I am loving my food!

    I also found the squirty bottle filled with tepid water was invaluable for peeing. And I used water wipes (99% water - not flushable but very easy on the skin) and the Flamazine that they gave me. I did have something that sounds similar to Flaminal Hydro but as Kate says it seemed to dry and crack and I didn't find it especially helpful, so I just put the cream on and spent much of my time laying on a towel.

    Now at the 5 week point I'm able to sit for a while and I'm able to go out for the afternoon (secure in the knowledge that I know where all the available toilets are) and I do feel like myself again. So as Kate says - you will get there - and a bit of a rant while you're doing it is absolutely justified. I think actually it is a help to everyone else  - we all need to have our experience validated - it helped me to know that other people had found it so barbaric and had to really grit their teeth just to get through the day. 

    Sending you love and hugs 

    Linda xx

  • Hi Ladies    & thankyou  for the encouragement sympathy & recognition - it really does help! I just peaked with it all driving me mad! But is really encouraging to hear your experiences & different stages of recovery. 
    A d it’s true when you’re in the thick of it it’s hard to feel like it will ever be any different.  

    So I did get a squirty bottle but the pain for me seems most at my urethra opening - like peeing razor blades more so than the scalding of it on the burned skin below. When I aim the water where my pee comes out it makes it more sensitive even using lukewarm water. 
    Maybe I’ve got a UTI but also because my pee  is coming out at all angles I’m assuming it’s just inflamed from the radiation. Hope not getting adhesions or anything Grimacing Hopefully it’ll settle down but I will mention to the nurse. Been trying to drink more water & cranberry today to make my pee less acidic so will see…

    I’ve also got a sitz attachment but for some reason my front bits don’t get submerged at all so can’t really pee into there. It is really good for washing the area though & salt soaks. And thankfully my stoma takes care of BM’s so I can really believe how excruciating that must be.

    I am only dabbling with water wipes too. Will look into the foam dressing but I doubt the nurse will offer them. They sound good & anything to absorb moisture would be good.

    Wish I’d come on here re Flaminal Hydro before purchasing online as it doesn’t sound great if dries & cracks!!! I’d be using in the goin area too. So will stick with the Flamazine. 

    When the skins peeled off & raw skin underneath heals (?) does it feel v tight as some areas in my groin are v tight & movements really restricted. I guess Flamigel after it heals will help to moisturise. 

    Good reminder of antihistamines - I will take - have got some but almost need to be told to take them - was bit like that with nausea tabs - don’t know why as there’s no need to try & weather through it when it’s stopping me sleeping etc.

    Thanks for your wisdom & support & positivity & congrats to those recently out of treatment & healing well

    HuggingXxxx