General Discussion

tonibates1

Steves reversal!!!

Hi everyone, as some of you know Steve could not create that 'special bond' with Barry the bag, and therefore has been waiting for the day when he and Barry would go their separate ways. WELL THAT DAY HAS COME!!! Yes Barry has now left the building and Steve (after an almost 5 hour operation) looks and feels amazingly well. No more hernia and no more Barry, he is super excited and looking forward to the next rounds of chemo. He had his op yesterday and I cannot believe how well he is doing, so much better from the night before and his run in with the MOVEPREP!!!!!!!!!!!!!!! (sooooooooooooo not good). Anyway the moral of this story is "No matter how bad things feel right now and no matter what you think may or may not happen, there is always a little piece of light and when you see it GRAB IT AND RUN WITH IT, because this time last year, we were looking at Advanced Bowel Cancer with not much to hold on to. Now look at us!! YAYYYYYYYYYYYYYYYYYY Love to everyone who has been on our journey with us. :x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x:

tonibates1
Quote from @Gary not Gavin:
First time I have seen any of your posts but the name Barry for his bags made me giggle. Cannot if possible wait to get rid off Lance a lot if the time comes. But reading your post it's good news and shows positives happen..
Well done and congratulates to you both Barry must have known 3 a crowd.

Gav

@Gary not Gavin Hey there Mr. Absolutely love the Lance 'a lot' bit soooooooo funny, you have to keep on laughing otherwise you will just fall into the darkest place. I have told Steve, that in a weird sort of way, getting this has been one of the best things to happen to us (although he doesn't feel like it sometimes), but we are now stronger and enjoying life so much more. We appreciate life and Steve isn't as miserable or grumpy as he used to be. We also now live in the country in a lovely village - so everything has a bright side. (Oh yes, and we also have a posh car!!!) What else could we wish for????? Keep smiling, love to you and Lance. I think we should all arrange a time when you're reversed when we can have a 'burning of the bag ceremony' What do you think??? Take care big hugs. Toni :x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x::x:

Sally1963

Hello @tonibates1 so glad that all is going well for Steve, it is such a relief isn't it! I am 4 weeks post reversal (after Hartmann's) and was 'normal' quite quickly. Cinema trip after just 10 days!

Was a bit surprised to see such an enormous hole from where 'Stiggy' (short for Stig 0' the Dump!) had protruded for 18 months. I thought it would be pulled together and stitched up like a string bag but no - a big hole 1 inch diameter and deep that healed from the bottom up! Today for the first time, no residue on the plaster, so will leave it undressed from now, looking just like a cat's youknowwot.

Hope that Steve heals just as quickly. It's true, you really do look at life from a different perspective when you go through something like this.

@charleyb @eyeofthetiger @Kareno62 hope this is encouraging for you. I didn't have any Moviprep either this time or when I went in for the first stage of reversal last September. Will have that joy to face when I have my first ever Colonoscopy in a few weeks time!

tonibates1

@Sally1963
Hey there, how lovely to hear from you and also to know what to expect in a few weeks time. Steve is feeling pretty good, although he did walk a bit too far today, and is suffering the consequences for not listening to the advice from the doctors or myself. I am changing his dressings for him and giving him the clexane injections, so am keeping an eye on things in that department. It seems all clear at the moment, but I do know what you mean about the 'cats bum', it does look quite similar!! hes just so glad not to have 'Barry' hanging around any longer. Please keep updating your progress so we can compare notes. Take care and speak soon. Toni :x::x::x::x::x:

Kareno62

Thanks @Sally1963. I was worried I might have more problems with mine being 15 months old so I hope to follow everyone's success story :x:

Catherine Blakeney

Hi @Kareno62 I had mine reversed after 14 months all went ok wishing you well with your reversal

Gary not Gavin

@tonibates1 brilliant idea it would be like an inauguration but please let's make sure the bags are empty whilst burning lol.

Keep it up and sending the best wishes.

Regards Gavin and Lance's lot and of course the wifie poo who would want to be there as the VIP :x::x::x:

Kareno62

Thanks @Catherine Blakeney. Got pre-op appointment through yesterday for next Tuesday so looking imminent ? eek! :x:

eyeofthetiger

@tonibates1 @Catherine Blakeney and @Sally1963 Thank you all for sharing! You have given me the confidence to go for the reversal if the colorectal surgeon gives me the go-ahead in May. My stoma is called Stevie and always has something to say for himself and gets the blame for everything in our household! @Kareno62 All the best for your forthcoming surgery. xxx P.s I was curious what the stoma reversal scar would look like so just googled images and now regretting it lol. It will definitely add to my impressive scar collection.

Kareno62

Thanks @eyeofthetiger. You've just got to make up some impressive stories to explain them - I've decided my open surgery one is going to be due to saving my husband from a shark attack! :x:

Lizalou

Hope things are still going well for you @tonibates1 .

@eyeofthetiger . My wound took ages to heal until a lowly HCA decided to take a swab and I was given antibiotics, then it healed almost instantly. (Hurrah for poorly paid HCAs) . It is now about an inch in diameter and purple but smooth and not unsightly.

tonibates1

HI guys, well its 6 weeks since Steve had his reversal and I can honestly say everything is going great, he is doing exactly the same as he did before his diagnosis and is looking great too. He is so happy to be able to wear jeans again. His tiny little scar is so cool and he shows it off at every given opportunity. His keyhole scars have almost disappeared. Tomorrow he starts round two of the chemo and this time round he will not be having a picc line, he will have the cetuximab, the irinotrican and the tablets for 9 days after, so we are just going to see how he gets on this time round. He is a bit anxious but we know he has to go through it again. Anyway I hope everyone out there who reads this is doing well and we both send our love and prayers to each and everyone of you. Keep strong. Toni and Steve.:x::x::x::x::x::x::x::x::x::x::x::x:

Bear G

Great to hear this update @tonibates1 , so pleased for you both and for Sophie
I’d been wondering how things were going.
Big hugs
Bear
:x::x:

Lizalou

Great to hear your update @tonibates1 . Hope the chemo goes really well too. :x::x:

Baxter2

Great to read your positive update @tonibates1

Best wishes for the ongoing chemo treatment.

K💚💙💜💛❤️

GD62

Marvellous news @tonibates1 :x::x::x:

tonibates1

@Bear G
HI Bear, how are you getting on? If it wasn't for you I wouldn't be on this site, it almost certainly has kept me going. Thank you. :x::x:

Alwyn

Such good news @tonibates1 very happy for you both. :x::x:

tonibates1

@Bear G
hello Bear, I need some advice if you have a moment? Steve has been told they are having trouble getting funding for his Cetuximab this time round, so the oncologist is putting him on a new regime of Folfox. He will be on Oxaliplatin and the Capecitabine tablets. Have you any experience of this? Will it be as successful as his last regime? Steve feels he is being given second best now and worries that it wont be as successful.
I am sorry to be a nuisance.
hope you are well.
Toni :x::x::x::x::x::x::x::x::x::x::x::x::x::x:

Bear G

Hey @tonibates1
You never need to apologise and you’re certainly not a nuisance!

Sorry to hear about this funding problem, I must admit I find the whole drug funding issue confusing and frustrating.

As cetuximab has worked so well for Steve I’d still be tempted to persist trying to get funding approved even if he’s started on his new regimen.

Just to reassure you though, folfox is a really good regimen and lots of people get fab results with it. It doesn’t have an immunotherapy in it but it’s still a highly effective treatment.

I think that if he’s on capcitabine it may be a regimen called CAPOX but that may be something to check. Just as effective though.
The difference is that folfox uses 5FU infusion (the bottle attached for 2 days) while CAPOX uses the tablet version for a couple of weeks.

So if he does end up on folfox or CAPOX it’s not a bad thing!

Not sure if I’ve helped this time.

Big hugs
Bear
:x::x:

tonibates1

@Bear G
thank you for your help and yes it is CAPOX that Steve will be starting on Wednesday. He got a letter from his oncologist yesterday, saying that 'unsurprisingly due to not being on chemo for 6 months the tumours have reappeared in his lungs and liver (which we were aware of), however, seeing it in black and white has really affected him today and he seems so quiet and distant. He keeps saying he has pains in his side, where the stoma used to be, but I think it is because of his state of mind at the moment. Haven't had a follow up with the surgeon yet, thought we might have had one before now. I will show him your message about the treatment and yes we will continue to fight for the cetuximab too. Bless you Bear.
Toni :x::x::x::x::x::x::x::x::x::x: