Anyone There?

Hi Susie64 and well done on finishing the chemoradiotherapy although I’m sorry to hear that the side effects are kicking in. It might be worth ringing the support desk and seeing if they can suggest something? I’m also going to tag Arsey to see if she has any advice. I’ve heard that people can find sitz baths comforting which might be worth looking into - I think you can get them to just pop in your toilet. 

Hope you can find something to give you some relief

Take care

Karen x

Hi Susie,

I am sorry I cannot remember the name of the cream I was prescribed, but they gave it to me at the hospital and I was told to keep it in the fridge to keep it cold, perhaps you could ask at the hospital?  I also bought  from Amazon a Sitz bath that goes over the loo, it also had a little spray, it really helped and only cost about £10 or so.  To be honest I would not use any creams over the counter just in case you have a reaction.  Sorry I cannot be of much help, do hope you get something sorted as I know just how uncomfortable it is..Kind Regard Mary

Thanks for the tag Karen.   

Susie, I would ring your team for advice re any other meds they would recommend and not go over the counter - RT can react with certain things, so ask your team.    Stick with using the instagel and what they have given you, but ask for anything else, you should not have to suffer.   Flaminal was given to me to alternate with the instagel.  They got me through.

  I also took over the counter cystitis sachets when I had  some wee discomfort and the RT peeps tested my wee to make sure I didn't have an infection. (drank loads of cranberry juice too)    It might be prudent to get a urine test done to make sure you don't have a UTI, especially as you have been on the chemo, the last thing you need is an infection.   The RT people stressed that any urine discomfort - I should have a pee test.  ~

I did get a sitz bath from Amazon, just a cheap one,  used it a couple of times with a little salt in and it was fab.  More, I sat in an ordinary warm/hot bath, which gave me more relief as it stayed warmer longer, was deeper and just lying in warm water with music and a beer made me feel much better and was the best relief ever.    Do that as much as you need to, it really helps.  Just camp out in the bathroom for a week.      With the sitz bath, you can pee and poo in it if you need to and then tip it down the loo - I didn't have to, but I can see that as being a big bonus if those functions are painful at the moment.  The instagel timed right will help with painful poos. 

I'm part way through cycle 2 (of 6) of Oxilaplatin and Capecitabine - so as you get there, drop me a line if I can help you in any way with my experiences.  There is so much they don't tell you.     Get gloves in and scarves, seasalt handybands are great for having around your neck as you can pull them over your mouth and nose to stop breathing in cold air.   You will need gloves even for cleaning your teeth.  I got some great waterproof gardening gloves with a fleecy lining (cheapo, they are black and made by Briars)  which are great for going in the fridge, washing up  and teeth cleaning.    Get a flask for having hot water up by your bed as you will need hot drinks for 3 or 4 days.  Don't even try a cold drink, banana etc.  anything room temp be wary of - hold it in your mouth to warm up.   Anything you eat for the first week, will make your jaw cramp on the first bite, so first bit of anything, make it a tiny bite and take it slowly.  Even during the last half hour of your infusion you might find eating or drinking anything cold a sudden shock.  I started talking like Barry White on Friday (at the end of my infusion) - just with the change of air temp hitting my larynx and that was warm air in the chemo day centre. 

For now, grab a wine, gin, beer and go sit in a hot bath. 

Take care

Zx

Thanks everyone for your replies - it is so helpful to know there's some support there and thanks for the advice about OTC meds and creams. My team did warn me that things would get worse after treatment ended, but at times I'm struggling to function.

I was  due to go out this evening, but had to call it off - I'm so uncomfortable when I walk and I am in so much pain when I sit down - the only time I can get any comfort at all is when I've taken my Co-codamol and lying on my side in  bed. Even then, it only lasts for a very short time. Having a pee is excruciating - the pain before I actually pass any urine is off the scale and when the urine comes it stings like crazy.

The Oncologist said I should start to feel better in 7 - 10 days so I don't know if what I'm experiencing now is normal.

Thanks for the heads up about Oxilaplatine and Capecitabine - foreward and forearmed, and all that.

XX

Take some cystitis sachets, drink loads, get pee tested.  Wear men's cotton boxer shorts.     Co-codamol will bung you up, so take some poo softeners.   Ring the 24 hr help line.  You should not have to suffer like this.  Honestly, go sit in a hot bath.  Pee in it if you have to, the heat might help you too.  The more you pee, the better. 

Hope you feel better soon

Zx