Feeling a bit helpless but found some great info

Hi Floofy  thanks for the Bumlamders information. The urgency to go does knock your confidence but with incontinence pads will help a little. This does improve after treatment. I’m not sure what he is eating but whilst going through treatment I would definitely avoid a lot of fruit and veg. I had a bland diet. Your emergency pack is a great idea and I carried around one similar in the car for quite a while. If he is suffering from diarrhoea, Loperamide is excellent the hospital can prescribe this for him. Bev x

You are always so kind Bev. The incontinence pants are pretty good I have to say and he hasn't said he feels like an alien wearing them! We are trying to have a fairly bland diet but maybe he should give up the Vogel multi-grain bread and clementines?? Stay away from the veg. Just protein? Little potato? Any advice I am eager to accept. Thanks Cxx

Thanks Floofy  I pretty much avoided all fruit and veg for the duration of the treatment, personally I wouldn’t eat multi grain bread during treatment. I’m sure the odd clementine won’t harm but not if he’s having diarrhoea. I stuck to chicken and fish with potatoes ( without skins so less fibre). I had tuna sandwiches on white bread, go easy on the butter and I also ate crisps. Also, 20 minutes before I went anywhere I took a Loperamide tablet just in case. That seemed to work well. I also never went anywhere before 11am as mornings were the worse time for going to the toilet. Im back to my usual healthy diet now although too much caffeine sets me off! Bev x

Hi Floofy,

I’m pleased you found the ‘Bumlanders’ info, I remember reading it when I first joined the site back at the beginning of 2018 & now realise being on the flip side of treatment that this really does cover every eventuality. 

You’ve had some excellent advice from Bev & I really don’t have a lot to add but a lot of people that suffer diarrhoea get by with loperamide & it’s a good idea for him to carry a rescue pack with him to & from hospital etc., with the personal pack you’ve prepared & maybe a change of trousers. 

The fatigue got to me too & I napped most afternoon. It must be difficult for you if he’s not very big on sharing but don’t feel isolated we’re always here when you need us. 

Nicola

Hello Floofy

I think you already have found great advice and some solutions. It is a worry, I’m now 2 months post treatment and had an episode(which is what I call it when I don’t make it) last week and another today. The worry is the lack of warning and of course not always being close to a toilet. Do you have the Macmillan “Urgent access to toilet”  card for him? It helps get you into toilets no questions asked hopefully!! I have one in my wallet and on my key ring. Makes going out a bit safer.
I found “Normacol” help level out the urgency. I was prescribed by my radiographer reviewer - was daily now every other day. Just take with water after breakfast. 
Your essentials emergency pack excellent idea. Sod’s law I went out for the first time last week without the “extras” and had the episode!!! No idea what caused it but probably something I’d eaten.. sausage bap?? I suppose as my oncologist says the new norm!! 
It would be good if you could get him to talk a bit though it is all so personal and private. Would he read some of the support comments on here? On a positive note I started my “Walk all over Cancer” challenge today - day 1 of 31 walking 10,000 steps so there is hope in the near future

I hope his confidence comes back with your support. My way of coping was looking at all the others having treatments and thinking that it could be much worse, especially those poor people who have to wear the masks when having radiotherapy!

Fingers crossed you can both stay positive and strong. Ruth 

Your message gives me a lot of hope and thank you for sharing. I didn’t know about the toilet card so that’s a real positive to know. With lockdown opening it’s something he needs so thanks for telling me. It’s the things like this that make a difference. 
The oncologist has prescribed a gel flaminel hydro with some strange polymem non adhesive roll. Hubby says not sore but it looks it for sure and I think by Friday he will be in a different place as it’s then 3.5 weeks in of 5.5 weeks. He’s not a talker - maybe it’s because he’s a Scot and a man!! 
I only think week in terms of each week. It’s all I can do really to manage this. It’s interesting that a lot of people here felt the weeks after treatment were worse. He has been told they won’t for sure it’s worked for at least 3 months after the last treatment so that’s pretty tough.

Good for you walking 10,000 steps a day for 31days. Such a positive to hear that.

thank you so much for your help. It’s greatly appreciated!!! Cx

Hi Floofy

I was ok for the first 4 weeks really except for toilet irregularities. The soreness for me came mainly in final 2 weeks and the 2 weeks after end of treatment. I had a morphine gel that really helped me. 
The card came very quickly- I applied on line. Hopefully it’ll give a bit more confidence when out even if not used! Does he have a portable bidet- couldn’t have managed without that! Bottle with spt on end for washing bum. I also find the flushable Andrex wipes essential. If he gets very sore using a hairdryer to dry area  helps.... not too hot though Salt bath also soothing but NOT once there is any open sores! Good luck....,

Hi again Floofy,

Some great advice there from Ruth, I had completely forgotten about the ‘toilet card’ apologies for that!… I was also told to expect treatment symptoms to peak in the couple of weeks following my last radiotherapy session & mine peaked around 11 days post treatment & although the radiotherapy does continue working internally for some months after that last treatment healing for me happened really quickly after my symptoms had peaked. 

As mentioned before a bland diet, low in fibre is often best if diarrhoea is an issue, don’t they call it the white diet? White potatoes, white bread, white rice etc., but anyway, once treatment is done it’s be worth your hubby keeping a food diary ir if you do the cooking then maybe that’s something you could do for him? I think following this treatment some of us end up with food triggers, for me it’s more about things that cause me constipation rather than diarrhoea so it’s really worth finding out what these are early on then as time goes on slowly try reintroducing things one at a time to see if they can be tolerated. I no longer do well with sugar (causes bloating & gas!) eggs, too much white potato, rice, bread & nuts cause me constipation, it doesn’t stop me having these things from time to time but I know I need to counteract with medication when I do have them but mostly I just stay clear, I find a clean diet serves me well. 

Ruth (Bottom56) all the very best to you on your ‘walk all over cancer’ challenge, I’m sure you’ll smash it. You should be very proud of yourself taking on this challenge just 2 months out of treatment, you’re amazing 

Nicola 

Thank you Nicola. Doing ok so far.... and going to some lovely places and seeing lots of friends. One at a time of course. Makes lockdown feel very manageable!

Ruth 

Hi floofy, tell your hubby I've crapped my pants a million times.  Never gets easier... but yes,  diapers help!!!