Living with 2 stomas instead of 1

Hi RoseInTheSun 

It’s been a bit of a rollercoaster with good days and not so good days (both physically and mentally) but we’re muddling along.

Last week was a good week, hubby was settling in well to life at home and surgeon caught him when he was in the hospital for a stoma appointment to let us know the initial histology findings… they are happy they got everything but they did find some positive lymph nodes close to the tumour.

Unfortunately though this week his blood tests have been showing fluctuating inflammatory marker levels and they are getting more concerned over his liver dysfunction as it doesn’t seem to be resolving at all even though they can’t see anything specifically wrong by CT, MRI or ultrasound. Today he woke up feeling unwell with high heart rate and temp so I had to take him in and he has been readmitted to hospital with a pelvic abscess. 

So that’s us! We were warned recovery is not a linear process! Hopefully just another hurdle on the way to a full recovery.

How are you doing? Hope you are managing to enjoy some time together now despite the impending op. It’s a lot easier said than done I know. Love to all. X

I’m glad he had a good week settled at home and Sorry to hear he’s had to go back in- hopefully he’ll be on the mend again soon and back home.  I hate it when things aren’t linear…although they tell you it won’t be I think we always hope we’ll be the exception don’t we. 
really good news they got it all out! Hopefully that’s been a good boost for the both you and when he’s back home you can have some more great weeks. 
we’ve been trying to enjoy the time before the op…we tend to pop our heads out of the sand for appointments and then promptly bury them again so we don’t spend all of our time stressing but it can be tricky. We went away for the first time since this started back in April last year and it was so nice doing something normal and fun. I try to focus more on what life will be like post recovery and look at the next 6 months as something to just get through. 

love to you and your husband and hope he’s back home with you soon xx

Hi Scientist44 

How is your husband doing? I was thinking of you today and hoping he was back home and feeling better x

Hi there just checking in. Hope your husband is feeling a bit better. My husband is due in next week 24th op on 25th. He’s opted for the TPE. 

Good luck with your husband's surgery. 

Thinking of you and your husband too Scientist44 

Thank you I will let you know how it all goes. Thank you for sharing your journeys.  I can see how difficult the recovery is and continues to be. God bless everyone 

Just wanted to say I’ll be thinking of you tomorrow Cookieshell and I hope that everything goes smoothly. Do you have someone to be with you and something to do to keep your mind occupied?

My husband is doing a lot better. He ended up having to stay another week in the hospital to get the infection and fluid accumulation stabilized. That stay did take its toll both physically and mentally but over the last couple of weeks I’m really starting to see the improvements. He even managed a couple of trips out and walks with the kids over the Easter break. He still gets tired easily and I have to keep an eye on him that he doesn’t try to do too much! But he can manage now with one brief nap in the afternoon and an early bedtime.

I’ve been surprised how well he has coped with the stomas and has even changed it out and about a couple of times. He had a brief issue with some leakage from the urostomy bag which was easily resolved by trying a different type of bag so I think he’s been pretty lucky. The stoma team at the hospital have been fantastic which has really helped too.

Unfortunately though when he was having a CT due to the abscess and infections they noticed a nodule on his lung. Just as we were hoping the worst was over. As a friend of mine says with her cancer battle… it feels like a never ending game of whack-a-mole. It’s so hard not to fear the worst but we will do whatever we need to if it means he gets a chance to see the kids grow up.

Hugs to you all and fingers crossed for successful ops and smooth recoveries.

Hi Both thank you he’s in surgery now at Northwick Hospital Watford .  It was touch and go as he was so emotional these last few days, I wasn’t sure he would go through with it even up to this morning he messaged me saying he wasn’t ready for this. It’s gut wrenching thinking what’s happening to him at the moment. I battled with myself last night thinking was it the right decision? Did he really need to go through this. I’m keeping busy working from home and on my own seems best at this moment until I get that call that alls well. It’s 12 hours roughly I’ve been told so it will be late tonight before I know anything. Feeling pretty anxious, it’s going to be a long day …x 

Thinking of you. I hope you've gotten word by now and all is well. 

It sounds like he's doing great. It's quite the journey back from this surgery but it's do-able.

I'm sorry to hear about the nodule on the lungs. Sometimes these are unrelated. But perhaps it will be easily handled in any case.

I'm playing whack-a-mole with precancerous polyps. Yeah, we're getting them in time but so nerve wracking!