Ouch!!

Oh Ruby, I can feel it all again! I finished my treatment 2.5 years ago. It is like a bad dream. Do you have a portable bidet? I got mine from Amazon, you fill it with warm water, put it on the toilet & sit in it. I think I spent hours on it! 
I wrote a blog - a naughty one, to try & get through it. It helped me & I think it helped others too.blogfromuranus.blogspot.com It is  a bit ‘rude’ but you will realise it will pass and it may raise a smile! 
And yes, I wept & discharged pure acid onto burnt flesh! It’ll get better, you can do this. 

Best wishes, Pam 

Hi Ruby, that brings back a few (unhappy) memories! Are you having salt baths? I had up to 3 a day then lay naked on the bed after to dry off. If you need something stronger pain killer wise just ask when you go to your radiotherapy but be careful with morphine/co-codemol as they can be constipating and you don't want that. There are things you can take to counter the effects of those pain killers like stool softeners.  The discharge is awful, but is totally normal. You've not long to go now, hang on in there and the healing will begin about 2 weeks post-treatment. x

Hi ruby, I just wrote on your other thread which I read first for some reason.   I have only had the burning wee for 2 days and I'm done, so tonight I got inventive. I held an empty loo roll up to my pee hole to prevent the wee going anywhere on my skin. I tried it in the shower first so I didnt have to worry about aiming in the loo.  It worked. I'm so delighted its actually why I came on this forum cos I felt like I had to share. I will now be asking my friends to save all their loo rolls for me and taking a stash to hosp every day.  Considering for a more than single-use solution, cutting a plastic bottle in half and putting the lid end to pee hole but gonna have to get good at finding the spot before I progress to that. 

I've had a colostomy bag fitted temporarily because I developed a fistula  but I do have discharge leaking from my lady bum and I have no idea why, I thought maybe I had BV so the GP tested me but no, so I am (sorry to say) glad to hear someone else this problem.  It is incessant , makes me feel gross and also causes a burn feeling now the radiation is kicking in so meh, but now I have a solution for the peeing I feel able to handle the discharge  

Oh and I can also recommend the portable bidet as Lady Tourelle suggests.  My nurse (I'm on a trial so I speak with one particular lady a lot) gave me some instigell,  it stings like *#$% when you put it on but it is anaesthetic and does have effect.  Yoi can buy a lidocaine cream from pharmacy (or maybe get GP to prescribe?) , that stings a bit less. 

Thankyou so much for your replies ladies .. I have a portable bidet and just use plain water and aqueous cream .. Salt etc irritates it more.Absolutely knackered this morning as the Dr called last night to tell me to stop taking Chemo tablets as platelets and sodium levels have dropped right down .. It’s sent me into panic mode .. No sleep as keep needing a wee ouch(will try the loo roll trick!!)itching and burning from the discharge .. Oh the joys!!

Im sure when you’ve recovered and looking back it must be similar to PTSD .. Well done on your recoveries ladies!! Xx

Hi Ruby1969, try not to worry too much about the chemo. The radiotherapy is the mainstay of this treatment so it’s more important that that continues. My platelet levels dropped too during treatment so low I almost had to stop the chemo but then came back up again about 5 days later. Today, at 15 months post-treatment I’ve had the mucous discharge which has made me sore to the point walking was hurting. I’m in a salt bath now which will sort it out. X

Ps let us know how you get on with the loo roll idea! X

Hi sorry delayed reply from me .  I read yours on friday morn and was going to write back and say I too had the call (two days beforehand) saying to stop chemo tabs because my wbc had dropped.  I wasnt concerned, it's for the best, to ensure I remain well enough to continue/complete radio. 

However, at my GP appt fri morn (for advice on how to care for severe moisture lesions) my pulse rate was 160 and I was sent to hospital.  Luckily i went to my treatment hosp so havent missed anything but I had an infection and wasnt very well for a few days. 

Whilst here I have learnt the goo coming out of butt is from the tumour because its irritated by the radiation. 

I hope you are ok ruby 1969

In hosp I've been given purillon gel for the burnt areas which doesnt sting (turns out i have actual tears down there so no wonder the instilagel was killing me)

Also a dressing called Polymem (and a leaflet about skin care which I can put photos of

In the morning if you like but it's just out of my reach tonight) .  If you cant get polymem from your radio or onc team then ask your gp to order in. 

Oh and if anyone does have to go into hosp I recommend taking your own toilet roll (and that's coming from someone with a stoma) . 

Hi ,

I’m sorry to hear you’re not well & in hospital. I hope they’ve managed to get your infection under control & you’re feeling better. I’ve spoken with a couple of people that have been provided with various dressings during treatment too, some for infection others for pain relief, hopefully they’ll do the trick for you & keep you more comfortable. 

Hi Ruby1969, 

There’s also been a few people that have had to stop the chemo side of treatment for different reasons, some like you have had a drop in blood count, others it’s given chest pain etc., some have been able to restart but some have continued with radiotherapy only, still with successful outcomes. I did a little reading when someone I was in fairly close contact with had to stop the chemo fairly early on during her treatment & from what I could understand the Capecitabine is a cell division inhibitor therefore it stops the cancer replicating & repairing our DNA which it needs to do to grow but as said above the radiotherapy is the part of the treatment that destroys the tumour. The good thing is once your blood count recovers the chances are your chemo will be restarted. Also I had radiation cystitis for a large portion of my treatment & a jug of water was a permanent fixture by my loo & although not too graceful I poured it over the affected area when going for a wee, I found either this or going in the portable bidet, shower etc., the key, anything to dilute what you’re passing is good. 

Nicola