Update 18 days after treatment!

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Hi Everyone well I have survived the last two weeks and a half after treatment - just about!  Glad I read so many threads on here so i was prepared for how bad it would be!

Good news is that the burns are healing nicely now and I am feeling less tired and managing two dog walks a day. Dog

Not so good news is that I am still strugglng having a wee and need to go often and now!  Very painful and cannot get a proper flow just comes out in little bits.  Using a sitz bath (thanks for tips) plus a squeezy bottle of warm water.  My nurse suggested having a urine sample tested which I did with the GP and i was borderline infection so given 3 days of antibiotics (one day to go).  Don't feel these are helping as I think its inflamation internally from radiotherapy.  My worry is - will I get better or will i always be like this wondered how long before others felt better in the waterworks area?

Also my vaginal delicate bits are still red raw and on fire and I have a cut on my labia which keeps bleeding and won't go plus the labia keep sticking togeher.  I have tried all my creams on the area and all make it sting.  Nurse suggested sudocrem which I am trying at moment but it is a bit thick and doesnt seem to stick to the moist vaginal area.  So again wondered how long before this area heals up, i suppose it isnt getting air like the other areas.  I do go knickerless and lay down on bed airing the area regularly Wink  It is making sitting down hard still!

Bowel wise I have to go urgently and often and my goodness the wind that comes out Astonished so blooming embarrassing and can't blame it on the dog everytime!

Also my liver enzyme levels are high.  They were ok for first 3 weeks of treatment then started going up for next two weeks.  I had to do another blood test this Monday and seems still high so I am doing another one on Tuesday.  The Oncologist is arranging for an ultra sound scan just to make sure nothing going on although she thinks it will be the chemo tablets and antibiotics I took throughout treatment.  I hope it is the drugs as I was a bit worried about having a scan thinking they would find something else.   So wondered if anyone else has had problems with the liver enzymes?

I have a family holiday booked on 9th September (been booked from last year in Bamburgh, Northumberland and I am definitely going as my summer holiday was cancelled.  Even if we have to stop often for wee breaks and I have to lie down in car cos I still can't sit down. Fingers crossed I am much better.

So that's how I am so far - upwards and onwards! 

Carole x

  • OMG, Carole, you are doing BRILLIANTLY! Seriously, two dog walks per day?? You're a warrior!

    Don't know for sure with the complication of an infection, but I'm pretty dang confident that you'll start weeing more easily before too long. Oh, I don't miss that at all.

    Try pure coconut oil on your ladybits. It was all I could bear anywhere down there in the two years of pain and skin issues before my diagnosis. And it won't irritate the cut. 

    And heading off for a vacation this soon! I think that's so fantastic. I finished my treatment in early April, and have a vaycay planned for mid-September and am alrealy angsting about being away from my bathroom and its set-up to make my life easier. I couldn't have even considered going away this early.

    Your story is going to inspire so many folks coming into this. 

    Go you!

    :) Suz

  • Hi  as  has said, you are doing really well ! You have my sympathies with the delicate lady bits issues. I developed radiation cystitis which I had for about 3 weeks, it was like weeing razorblades. Antibiotics would have no effect at all, so I'm wondering whether you have this condition.  I had to wee in the shower over the water, having not heard of sitz baths!  The good news is, it does wear off.   

    For the lady bits soreness, a few people on this site have recommended Polymem dressings which is a dressing  you can put on that keeps the sensitive areas from coming into contact with anything. I'd give your colorectal nurse a call and ask about that. 

    I didn't personally have the liver enzyme issue but hopefully someone who had will read this and post a reply. 

    Have a lovely holiday! Bev x

  • Hi Suz

    Oh wow thank you for your reassuring reply! Hey I don't think I am a warrior I force myself to go every morning for a walk after a good toilet session before we set off! Can manage an hour walk and back for the loo!  I'm determined not to give in! 

    As I type my hubby has gone to buy some coconut oil thanks for the tip!

    Holiday was booked a long time ago a big house with family and i'm not going to let them down even if I am laid around most of the time - can let them look after me for a change! Luckily we all have ensuite bedrooms!

    You've given me hope for the future!

    Carole x

  • Hi Bev

    Thanks for your reply. Hopefully my wee problems will disappear soon then as coming up 3 weeks on Wednesday!

    Giving the coconut oil a try for the lady bits and must say first thing i've put on which doesnt sting! Will mention the Polymem dressings when my nurse rings this week.

    Carole x

  • Hi ,

    You’re doing great by the sounds of things so well done! I was prescribed Flamazine cream post treatment but found, as you describe, it stung quite badly. I was told by my oncologist that it was the best thing for my sore bits, I resulted in mixing it with a tiny bit of aqueous cream which although I realise dilutes the Flamazine it did take the sting out of it & I was able to then use it everywhere & more frequently. 

    The issues with your waterworks may be down to inflammation either in your bladder itself or your urethra, make your nurse aware that this is an ongoing issue for you though & hopefully it’ll settle down soon. I had issues with internal inflammation during & after treatment & it’s something that nobody seems to warn you about! I found sometimes I would pee about a teaspoon full then need to do the same 10 minutes later on repeat until my bladder fully emptied.  

    Hopefully the issue with your liver function will resolve itself, the toxicity of these treatments is really hard going on our other organs, considering just 2 of the livers jobs are detoxification & filtration just the chemo alone must put an awful strain on it so fingers crossed your scan will be clear & you’ll see an improvement in those numbers soon.

    I hope you enjoy your holiday, I’m very lucky that I have Northumberland literally on my doorstep, it’s a beautiful part of the country.

    Nicola  

  • You are doing so well, I am so impressed!  I didn't take my pooch out for six weeks after my treatment ended but the feeling of wellbeing when I started again was so invigorating.  My readings were high the week after I finished treatment but they were totally unconcerned and said not to worry as the treatment had finished.  I had a urine infection during treatment and had intravenous antibiotics.  Now I think tubes and passages in my nether regions have all shrunk as all functions are affected to some degree.  When I wee, I wait about thirty seconds and then try again, and invariably pass more.  I don't leave the house until my bowels have opened at least three times, one bowel movement is a thing of the past and I still have urgency when I need to go.  By sticking to this routine I haven't been caught out when I am out, thankfully and I am totally used to it now, the only real inconvenience is being unable to plan outings in the mornings.  I hope all your ladybits are recovering, I still travel with a blow-up circular cushion which really helps.  Have a lovely holiday! x

  • Hi Nicola

    Thanks for your reply and encouraging words. You just need to know that you aren't the only one who is having these symptoms and its normal! 

    Will give the aqueous cream a go ta.  Sounds like I am similar to how you were with the bladder so fingers crossed it heals soon. My nurse ringing this week so will let her know.

    Had a blood test yesterday and waiting to hear result fingers crossed it is good news.

    Very lucky to live near Northumberland we love it up there although its always cooler! I'm down in Yorkshire so not a bad trip up on the A1.

    Carole x

  • Hi Irene

    Thanks for your reply and yes it is so good for your well being going out for a walk. Takes a while to get the toileting out of the way before you go!

    Yep that's what i'm like having a wee doesnt come out in one go! I'm exactly same with bowels too need to go a few times - so keep near the toilet! Glad I am retired too!

    Good to hear someone else had high liver levels fingers crossed mine have gone down when I get my result this week so I can enjoy my holiday.  Ladybits still sore but actually improving ta!

    I've actually been to hairdressers this morning I was worried but I managed and feel so much better for an haircut! Hair was a right mop! My hairdresser knew about my treatment I took my cushion and went to loo 3 times but I did it! The pleasure from doing something normal!

    Thanks I am looking forward to my holiday.

    Take care

    Carole x

  • Hi Carole,

    find yourself a special cushion for sitting. I couldn't sit at all due to the burns, etc., but with the cushion, I could.

    mine was the plain wedge cushion people use for broken coccyx (tailbone) relief. I carried it everywhere.  Lots of different types available on Amazon.

    you could have developed a bladder infection - I and many others did.

    you are doing amazingly well!!

    Robin