Hi there , should the worst happen and your husband ends up with a permanent colostomy, there is a possibility that he could use the irrigation method to manage it. I use the method very successfully and only need to wear a bag the size a a large sticking plaster - i can swim etc with no sign of the bag. I irrigate every 2 days and it takes me about 40mins in total. If you want more info send me a message or ask your husbands stoma nurse. Good luck with everything

stef xx

Thanks for your reply.

I think he's contemplating saying no to surgical intervention, he slept badly last night. He says it's not fear it's the wish not to lose normal bowel function. His tumour was growing for up to two years and was huge at the start now it's not detectable. The consultant surgeon said the radiation could carry on working, however it's early days with this combination of treatment so there's no data yet and no comparisons I suppose because surgery has so far interrupted things for all those prescribed it. Nobody can say what will happen if he doesn't have the debris and a margin of healthy bowel removed, it could be that it's all dead and will never pose a threat. The scans all show no other hot spots, no sign of spread to anywhere. Maybe it's a benign malignancy, one with no strength to regrow even if what's left are a few cells that have been filtered into his lymph glands.

So far his cancer has not made him feel unwell, he did suffer the constipating effects of an increasing obstruction. The proposed surgery is complicated and will involve up to 8 hours of anaesthesia, of lying still. There are risks of leakage and infections, stuff he knows will make him unwell. What to do for the best, I dont know.

I am thankful all seems to be going relatively well for you two.  Do you think Philip is telling you what you want to hear or does really, genuinely feel OK about the bag.  I sure hope he is coping with it for both your sakes. 

Yes, of course you should have been told about the parking pass.  Don't these people realise the financial toll we bear at times of illness and being unable to work/earn.

But more importantly you shouldn't have been lead to believe the bag was "only a slight chance."  Where do hospital staff get off giving one impression, whilst knowing full well they are going to kick the stool out from under our feet and leave us hanging by a noose??!!??  Sometimes I feel they set us up for failure for a perverse pleasure of showing us their power over us.      ............................Sorry!  I have "Issues" with hospital staff at present

The irrigation avenue certainly sounds do-able doesn't it.  Trust a Kiwi to have mastered it - we are the kings and queens of DIY and this is taking DIY to an extreme sport I think you'll agree!! And U-tube footage!!  Welcome to the 21st Century

If you are worried about Philip getting hooked on sleeping pills, can you try him on a homeopathic remedy like Rescue Remedy Sleep.  I am using a NZ product called Sleepdrops.  Even with the huge stress of the past couple of months (let alone the past few days) I squirt my drops under my tongue (three doses on very bad nights so my bottle's emptying real fast at present!!) and I sleep like a baby - not even waking when Ian's cellphone alarm goes off at 2am for more morphine.  Obviously you won't be able to get hold of a NZ product in the UK, but I would imagine Rescue Remedy Sleep would be on a par and homeopathic remedies have got to be better than chemical remedies any time....  Hope that helps.

And Mum123's hints on bed pad, spare bits and pieces sound like practical but wonderful advice.  Sounds like you'll have to buy Philip a Man Bag to keep his bits and bobs in

Keep your chin up my friend - The Newest Normal is underway!!!

Lorraine

Stef, thank you so much for writing all that, I'll show Phil and I'll get him to watch the video. Lorraine thanks for your letter too, everything would be much better if only Phil could sleep, he's just rung me (05.00) to say the ward was too noisy again with the man in the next bed in audible pain! I wonder if I can go and rescue him from yet another night? He cant sleep on his side yet and his back hurts to lie on too. At home it's quiet, dark and his bed comfortable so it would be better for his recovery. He didn't ask for night sedation and they didn't offer it. I'll see if I can get some of the remedy you recommend in Boots the chemist later. He says the five nights with no sleep is making him feel frail and vulnerable. Not good.

Aaahhhhh, Boots!  I've had some happy times pottering about in Boots the Chemist on trips to the UK      I hope such a remedy does the trick.  How can Philip possibly heal without sleep???  In the couple of months I have been using my homeopathic sleep remedy I've probably only had two nights of sleeplessness and I've followed the instructions and dosed up again during the night and drifted off again.  Even in the horrible three nights I've just had, my sleepdrops carried me off to lahlah land without fail and are probably the reason I have regained my sense of humor and my equilibrium - and my relationship with my man.  Good luck!! 

Philip wasn't allowed home yesterday, he has developed a rare condition following the interferrence of his lymph glands, it's called 'Chyle', it's a fluid that comes out of wound sites, it scared and upset him because it was pouring out onto the floor at one point. They've put a bag over to catch it. It has slowed down and will hopefully stop. The quack wasn't able to tell us in an understandable way what it is why it is and how long it will go on for but he cant come home whilst it's happening. He had to have another scan which showed nothing of note. His dangly bits became very swollen too but have gone down as the fluid has leaked. According to the doctor the lab report shows the removed tumour had cancer in it so did one of the nine lymph glands they took out, I guess they're not allowed to fib so the operation was the right call. Phil cried at last! He confessed that he knew exactly how serious it was the moment they put the camera up him way back in March and he's been wearing a brave face keeping his fear to himself. To make his worse night even more awful the old boy in the opposite bed died and Phil overheard his final words which were "I'm in terrible agony" How about that for an aid to restful sleep! On a lighter note I walked with him to the loo where he showed me how he changes his bag and cleans up. I was so impressed with the easy way he managed it. The bag is in the wrong place for his waist band at the moment, hopefully once all the swelling has subsided it will be more comfortable.

Sorry to hear things aren't going too well at the moment. Try to keep as positive as you can for your hubby. We are here on the forum to support you

take care

hugs and good vibes

stef x

Oh crickey, what mixed news that was.  The lymph gland fluid thing sounds gross and completely unexpected eh?  I don't think any amount of research would have shown that as a potential New Normal.  The right call indeed - this is a fearsome enemy and you and Phil have done right to take it on head-first.  Our men and their brave faces eh???  I think it's great that he showed you handling the bag - to me it would have been a bit worrying if he was furtive - to me it kind of shows he's dealing with it as a sort of normal body function already.  You two are doing really well it seems to me.  Give each other a hug and a pat on the back

Lorraine 

Sorry to hear things aren't going too well at the moment. Try to keep as positive as you can for your hubby. We are here on the forum to support you

take care

hugs and good vibes

stef x

You are indeed a force of good on here! I log on and read your messages and it makes me feel better. It's good for Phil that I have you to turn to. Thank you xxx

Hi,

Sorry to hear about that unusual and unexpected complication.  Lets hope the medical team get on top of it as quickly as Philip started dealing with the colostomy.  It seems by showing you how he handles it he really wanted to reassure you that he's determined to adjust and get better.  take care of yourselves, Expat

I plugged an ipod in at night and went to sleep with it masking the sounds of the ward. It was the only way I could get any sleep. Although I had to be woken up frequently because I had an epidural and they had to test me for any loss of feeling.

Home will be bliss. Hope he gets discharged soon.

I plugged an ipod in at night and went to sleep with it masking the sounds of the ward. It was the only way I could get any sleep. Although I had to be woken up frequently because I had an epidural and they had to test me for any loss of feeling.

Home will be bliss. Hope he gets discharged soon.