Hi Rachel, I too had primary bowel cancer. After initial radio and chemotherapy I had my op 5 weeks ago. At the time the plan was for an illeostomy with reversal afterwards as from initial scans there was no spread.

after being discharged, I was readmitted 2 days later with sepsis. During a precautionary CT scan they found a spot on my liver.  I was sent for an MRI which confirmed there were further spots, plus my lymph nodes from the primary site were found to have cancerous cells in too.

so it's more chemotherapy and panitumumab next week whilst I wait on the results of my PET scan...so worrying times, again!

we too have a small person to worry about and hope it never gets to the point where we fully have to explain everything that's going on.  My other biggest worry is the support that is ( or isn't!) available for my wife. She has been amazing through this, showing strength I never thought she possessed. However, the lack of local support for her has not helped and I can see this upsetting her.  We hopefully have found someone in a similar position for her to speak to, as I think it is so much harder for the nearest and dearest to deal with than myself! I know how I feel, what I want, when I want it, but my wife spends a lot of time worrying and second guessing my needs. The strain on her is significant and I just wish I could ease the burden.  

We talk as openly as we can and use (dark) humour to get us through this. As ex forces, this comes fairly easily to me and she seems to have grasped the benefits of it too. We try to lead as normal a life as possible, especially with the youngest. This isn't easy with my post op limitations, but he is only 10 and is so conscious of my wellbeing that it isnt currently a major issue.

more than happy to talk, or get my wife to speak to you if this would help in any way. If we can all share the burden to help, then let's do  it.

regards

sean

Hi Sean, sorry to hear of your further finding and diagnosis cancer is so cruel. My husband was given no hope last September so please stay positive. He has had Chemo, chemo tablets and radiotherapy on his bowel. He will have another scan the end of this month. He has also started taking cannabis oil not sure what has helped with shrinkage but read up on it and has good reviews. His oncologist said it wouldn't affect his treatment. We have been given counselling for our children who go into their school as his oncologist told us to tell them. Sometimes just getting your thoughts and feelings out there helps I agree. As you say your wife has no support I would agree  it's the same here. If she ever wants to talk if I can help anyway tell her I will try. 

Rachael

Thank you for your response sometimes it feels better to get it off your chest. He is still managing to work full time as this takes his mind off everything. The only thing is when he comes home he is very tired. I have suggested he takes sometime out to spend with the kids in the holidays which he has agreed to, hopefully we can spend time together.

Thanks Rachael

Hi , my husband was diagnosed with rectal cancer in April, our whole world fell apart, early reports and tests have all been good , but I know that that can change at any time ,geoffs had a ileostomy which he is struggling to come to terms with, and generally has disowned his abdomen as nothing as it it should be to him, he keeps a tshirt on at all times!!! 

Sometimes I just want to hold him :(  

this is truly a horrible time , 

much love 

Tracey xxx

Hi Tracey, 

we definitely all react in different ways! i've accepted my illeostomy (named Donald Trump by my 10 year old), but what i'm struggling with is i've had my catheter in pretty much since the operation as i was getting urinary retention, and this plays on my mind constantly.  i conscisouly try to go out and do things, but its always in my mind that its there and i struggle to relax.  Over time it is easing and i think, like any change, we get used to it and live with it....

So many things have impacted and changed our lives this year, it just seems to be a constant rollercoaster. Hopefully the changes will be less, but with this disease you just never seem to know whats around the corner.

We do what we can to grab at any normality when we can and make the most of it. Easier said than done at times, but its a target :-)

i hope you and Geoff get through this tough time.

regards

Sean

Hi Sean , how true are your words , its just always there , I try to put it to the back of my mind, and have some normality, but so difficult 

geoffs struggling with the old water works , but professionals just keep saying ... welll it was major surgery!!

do you mind me asking what stage you were ? 

Tracey 

Hi Tracey,

i was stage 3, with no spreading. However, they did find spots on my liver in the scan just before surgery, then the biopsy came back stating 18 out of 24 lymph nodes had cancerous cells. Hence why i have another 6 months of chemo to look forward to, plus i should be getting a call today to go in and discuss the PET scan i had on Thursday. Hopefully its just contained to my liver, but we shall see.

i was told the same with regards to the waterworks! and to be fair, i am only just getting the feeling back around my (substantial) scar. Hopefully the catheter will be whipped out (the 6th one, i'm getting used to them.....) next Tuesday or Wednesday and i can claim another slight bit of normality back.

i wish there were magic words i could say to put you both at ease. i fill the void with cake at the moment, my kids are over the moon with dad turning into more of a cakeaholic than normal.  i cling to the small things that make me smile :-)

any other questions or anything i can help with, just ask. Where i had my op (Nuneaton), the colorectal team have started a monthly "surgery" where past patients, relatives,carers get together to discuss all things. So after care, treatment, recipes for us stoma users and so on. May be worth checking if there's one local to you. Seemingly a very good place to sound of. i shall be going to the next one.

take care

Sean

Thankyou so much , there doesn't appear to be any such group locally, I spend so much time on the internet and these forums for support, Geoff doesn't like to discuss what has happened, so I'm afraid I'm probably stressing him out ,  

just so scared 

good luck 

look forward to hear positive news from you

Tracey

Thanks Tracey. 

Claire said if you need to chat to someone in a similar position, she's happy to chat and listen :-)