Low Rectal Cancer Diagnosis - newbie on here

Hi All,

If there is anybody left on this chat. It all seems to have gone quiet on here.

I am week 3 of 5 complete and I am pleased with how things are going so far. It is not without some issues with the biggest one now being a bit of a sore bum. I have raised it with the Radiotherapy nurse and she says they will be the cause of that.

When I asked about how soon it will settle down after treatment she said a couple of weeks. I have had to dip into the diarrhoea pills on a couple of days throughout the journey. I wouldn’t really say it was diarrhoea really but just too many trips to the toilet. But after taking a couple of pills initially and 1 after the next movement it stemmed the visits. I have had to do that a couple of days.

Enjoying the 3 day break now and start back with treatment Tuesday.

Keep Positive 

KevH

Well done Kev , you are getting there for sure . Hope the next two go by quickly for you. You will be pleased to get through this part . Thanks for updating . It means a lot.

take care,

Court 

Thanks Court, I was beginning to think I was the only one left on this thread.

Yes 4 days this coming week and 5 the week after. Then that’s me done the first stage. I have got my appointment date with Professor Myint on the 28 June which I am scheduled for my first dose of the Papillon treatment the same day too.

Kind Regards,

KevH

Hi Kevin 

Sorry you have had to wait for a reply.  There are problems with the website and it's Tuesday today but I'm still getting notifications from last Sunday.

I had real problems with running to the loo countless times a day, and as I didn't want to rely on yet more pills I decided to look into my diet. I cut out all red meat, as I was getting pain after eating it, I also cut out high fibre veg, spices and pulses.  My diet is now mainly fish and chicken, dairy products, rice, pasta and potatoes, peas and some I salad, and I've gradually added fresh fruit and veg back into my diet but I still have to avoid things like beetroot.  I have porridge made with water with fresh berries for breakfast although at first I had honey instead of the berries.

I still have the odd off days but on the whole I'm ok.  

At first I had to make sure I knew where all the loos were located when I went into town.  I have a Macmillan Toilet Card (available free if you contact them) and I also have a radar key, available from eBay or Amazon but I got mine from my local council office.  

I find the toilet card extremely useful if I'm in a shop without customer toilets, as most  shops staff will let you use their toilets.  Some will refuse, but most will help.  The radar key opens locked toilets for disabled.  Lots of big companies are now putting signs on these toilets saying 'not all disabilities are visible'.

Take care

VickiLynne 

Hi VickiLynne,

Thanks for the reply.

I do have issues with the number of visits to the toilet the odd days but if I think it’s a bit too excessive over a 24 hour period I have taken a couple of the diarrhoea pills and that seems to stem it for a day or two. My biggest issue in that department is the soreness of the bum entrance it’s been a gradual build up but it feels like I a passing glass.

I have a review on Thursday with the nurse so I will mention it to them. I don’t know if I am doing the right thing but a chap I got talking to at Saint James is on the same treatment as mine. He said his GP rang him the other day to see how he was going on and he mentioned he had a very sore bum and the GP said to try Sudacream so I have been using that as well rightly or wrongly.

Otherwise I am doing fine not too tired no loss of appetite, I don’t know that I am losing weight or any hair round the treatments area.

Just 8 more treatment days to go. Then about 6 weeks recovery time then I go over for my first Papillon treatment.

Kind Regards 

KevH

Hi Kev

Is it St James in Leeds where you are having your radio? I only ask because I had mine there and they gave me a cream to use in the shower to wash the area that they were treating (apparently some shower gels can have minuscule metallic particles in?) and also a barrier cream called Cavilon to apply to my back passage.

I also had the delight of a mid-course skin damage check where the nurse checks your nether regions to see if they're sore or red - not much dignity left after that one!

Anyway my tumour shrank from 4cm to 1cm so I hope you have similar success with your treatment 

Good luck with the Papillon too

Take care

Karen x

Ps I'm sure sudocream will be fine but I'd still mention it anyway

Yes it is Saint James at Leeds. I’ll mention it to the Nurse on Thursday.

That’s some shrinkage that has happened. I asked the Radiotherapy nurse for an average percentage wise of shrinking at my first treatment day and all I got was it’s the Doctor that I would need to ask.

I left it at that I think my Cancer is probably 3 to 4 cm if it shrinks to 3 cm or less than Papillon treatment is what I am doing. But if mine shrinks as much as yours has done then that’s even better.

Thank you for that information as that definitely lifts the spirits and it will make all what I am going through worth it. I know mine might not shrink as much as yours but it doesn’t have to shrink by much.

So far as the sore bottom has yours soreness gone away and how long did it take if it has?

Kind Regards 

KevH

Hi Kev

I was told I'd had a 'reasonable' response to the radio and it was only when I asked the surgeon a couple of months ago that he told me - I think 75% is pretty reasonable!

I never had a sore bottom with the radio - whether that was because I used the cream I don't know - but it's still worth mentioning it to the nurse as the treatment carries on working for several weeks after finishing so you may still suffer with some of the side effects

Karen x

Hi Kev

I was going to recommend the same creams that Karen has mentioned.  I have Doublebase shower gel on prescription and I also use Waterwipes baby wipes, they are quite pure and don't have any perfume or creams in them.  Sometimes toilet paper contains bleach that can also adds to the soreness, so I wipe with a Waterwipe after using toilet paper.

Due to the technical problems on the site, I'm receiving my posts a day or two late, so you may have been for your appointment before this reaches you.  I hope it went well and you were able to talk to your Specialist Nurse about your sore bum.  

Take care,

VickiLynne

PS you have to laugh about the things we talk about after we've been diagnosed with bowel cancer.  Things we would never have discussed with anyone before - but its a good thing that we can.

Hi Karen & Vicki,

Had the review with the nurse and what she has said is that I have a small spot that is bursting out so she has given me some dressings to put up there. I haven’t to use any creams on that area. I mentioned about using Sudacream. She says stop using as it has a metal element in it and I have had a look at the list of content and it does mention Zinc as one of the contents amongs others.

I have to remove the dressing for toilet visits and replace the dressing if not marked. The dressing you flick with water and it activates a moisturiser effect. So we will see how we go on with that. Just 6 doses left of Radiotherapy left at Saint James.

Kind Regards,

KevH