Worrying

Hi Deb,

Last week I was back to gripping the radiator when I went to the loo, really sore for ages after. This week it’s ok again. I also had some bleeding before my last checkup and my oncologist said it was caused by radiation damage.

My oncologist told me that the radiotherapy continues to work for months, which is useful for preventing cancer recurrence but obviously less useful for my poor sore bum.

I’m still taking Laxido at night, but if I forget I’m sore for days. Chilli also seems to make it sore but I’m prepared to put up with that!

I’m not worried about cancer returning at the moment. I am a bit worried about long car journeys without easy access to a toilet, but I seem to be handling it OK so far.

xx

Hi Deb (Debh1),

I suffered these episodes quite regularly after treatment, I would get any mixture of what your describing, aching, soreness & itching! Everything quite often felt really inflamed internally. I would also bleed when going to the loo. These episodes just got gradually further apart but even 20 months on I still get this on the odd occasion only now it passes a lot quicker. I always mention it at my appointments so maybe mention it at your next check-up & then your Dr’s are aware of it, mine have said I most probably have a fissure which are commonplace following the radiotherapy & formation of new skin & that coupled with the stenosis is there’s no wonder we get uncomfortable sometimes is there? Also as Trish has mentioned I still take stool softeners daily. 

Nicola

Thanks both, I know I'm always seeking reassurance  but it really does help hearing that others do experience the same, thank you.

I think I maybe need to start softeners. I've managed so far by watching what I eat and drinking a lot of water. You're right in that I do notice more pain and a little bleeding if the stool is even a tiny bit harder to get out. Then it seems to be uncomfortable for several days after. 

It's all manageable though, I just wish I had someone to say to me every day, Deb, it's ok!! lol 

Deb x

That is the beauty of this online community Deb, I’m not sure what I would have done in the beginning & throughout without it to be quite honest as apart from here I don’t know anyone that has had this diagnosis. 

Don’t ever worry about seeking reassurance, we’re a bit of a rare breed, although unfortunately increasing in numbers & that’s exactly what our little community does so well, if we can offer information, reassurance & support regardless of where we are on our journeys hopefully it’ll make someone else’s journey a little less stressful.

If you’re considering the softeners your GP will be able to prescribe them for you, I take Movicol, just dissolve in a glass of water & drink every morning. 

Nicola

Hi Debh1

I feel for you hun, 6 months out and you just want to feel normal and not be worrying about any changes you might have. We’re on high alter after treatment, any pain or blood and we’re thinking the worse. 

You’re still getting used to your new body. Whilst you look the same on the outside, internally is a very different picture and the rad is continuing to work and affect things.

The symptoms you have are normal and 19 months out, I still suffer with similar sometimes. You have to remember that internally there's lots of inflammation, your anal passage has narrowed (stenosis) and your radiated skin is now very sensitive and vulnerable. So without being crude, your body is now squeezing the same size stools out of a much narrower, sensitive passage. Things such as diet, how often you go to the toilet and the consistency of your stools can therefore, affect things literally on a day to day basis. It only takes a slightly harder, dryer stool and you can be sore for days and have bleeding. It takes a while to get used to this because each time it happens you think the worse when its actually your new normal.

I also used to worry. Sometimes I’d eat something and have to go to the loo several times in one day. I’d then get soreness and bleeding and worry the cancer was coming back. I don’t use softners but sometimes a larger stool will cause a small tear and again I get sore/blood for a few days. On average I’d say I get soreness/slight bleeding about once every 6 weeks and I can usually atribute it to something I’ve eaten. 

Try softeners and maybe keep a food diary so you can see what foods affect your toilet habits. For me, fibre is now tricky and if I eat any pasta, rice this bulks out my stools and they are more painful to pass.   Alcohol doesn’t sit well either but I still drink, although much less than I did. 

My oncologist told me that soreness and blood wipes are normal and only to be alarmed if I passed a lot of bright red blood, the type that turns the toilet water red.

Things will get better over time Deb. In a another 6 months, I’m sure you’ll have noticed even more improvement. However, things never really return to how they were.

Hopefully you’re feeling much more reassured after everyones replies.

Sarah x

I’m happy to say it’s OK to you every day, although you’d probably get bored pretty quickly.

xx

Hi Deb, I’m 6 months post treatment too and still have itching and soreness which seems worse without explanation at certain times. It’s  frustrating as although I know it’s more than likely down to the skin changes post radiation, the symptoms are pretty much like they were before treatment. This then puts a nagging doubt in your head. I’m back to see my Consultant next week for my 6 month check. No doubt he’ll have a rummage up there ( not looking forward to that!) so I’ll report back. Also just had 6 month MRI and lung/liver CT scans. They found a nodule on my lung but think it’s benign but are rescanning to see if there are any changes. Hopefully not! X

Hi 1in1500,

Just to wish you luck with your appointment next week & fingers crossed for those scan results. I don’t know about you but I definitely have a love/hate relationship with those scanners! Love the reassurance they offer when all’s good but hate the anxiety that surrounds them! 

Nicola

Please accept the new you!  Try to look forwards and not back.  Itching, pain and the occasional bleeding are quite normal!  You skin all never be as it was before treatment.  Not will you, but you are braver and more able to cope!  Believe me as time goes on you question less and accept more the positive results you are given!  Six years on I still have "episodes", only occasionally now but they don't worry my every waking moment.  Side effects are bound to happen - but at least we are here to experience them and without panic because the longer we go on the less there is something sinister lurking in the background!

Please believe when you are told that you are ned.  It's not said unless it is true and you have to believe what you are told.  You believed it when you were given your diagnosis, so why question when when you are given the all clear.  Your bottom, like mine will never ever the same again.  There will be episodes of diarrhoea, constipation but life will still go on and there is no need for panic when "toilet issues are beyond normal"!  There is no normal!  Please just accept your diagnosis as ned at checkups and carry on!  Six years on I have the odd hiccup (lessening as the years pass) but there is no panic now.  Many other 73 year olds suffer from "toilet troubles".  Believe in yourself and accept NED at check ups.  Mxx

I love your comments Happylady!   Very reassuring!

I have had a few 'issues' over the past few weeks but have come out the other side feeling fine!    I am now 75 and was diagnosed nearly 3 years ago, treatment finished two and a half years ago.

Looking back to March three years ago on the one hand I was smiling and trying to be positive, on the other hand I was secretly sorting out my affairs and planning my funeral!

Three years on I am enjoying my life, even though it is slightly different in some ways.   I have seen my grandchildren growing up, met lots of lovely new people at a post cancer group and counted my bkessings!   Not forgetting this great forum.

I have my six monthly check up in 5 weeks time and must admit the nerves kick in the nearer it gets but hopefully all will be well and I can carry on pretending not to be an 'old lady'!

Take care Beryl x