Bowel cancer CARERS, FAMILY & FRIENDS chat

Hi everyone. Joined here for support. My husband was diagnosed in late March with rectal c. He had his operation last week amd came home a week later. 

He's very strong minded and did everything he could to get home but I think he may have rushed himself. Obviously its going to take a good while before he's better but he has had trouble with his back and getting in and out of bed and there's been a time when he was stuck and couldn't lift himself up. He has a stoma so we've just been getting used to that together and everything has been so emotional and overwhelming. We have 2 young children as well so I've been taking care of everyone. He came home with his drainage bag because it was producing a strange coloured substance so he is on a zero fat diet along with low fiber. Anyway, had to take him to A&E today because the wound site looks infected and he's in really bad pain there. 

I'm struggling to stay strong and sometimes I feel like I'm in a really bad dream  it's so tough.

Thanks for reading

Hi Becky. So very sorry to hear about your husband. We have been on this journey for over 2 years. Lots of chemo. Liver resection and bowel resection. Back on chemo but this different one from the other two. We have all been on a rollercoaster and to be honest most days I can’t cope with the side effects and moods. He now has it back in liver lungs and Adrenalin gland. This disease is dreadful. Les was sent home 3 days after both ops but took it really easy. He does not have a stoma as he did not want one but if necessary he would have had it. Having 2 young children is really hard. Do you have any other support to help you xxx

Hiya. Thanks so much for your reply.

I'm so sorry to hear about your story too, this disease really sucks! Never knew how big it really is and how difficult it is to deal with. Complete whirlwind. It's like a living nightmare isn't it.

I have all family here in the area, they work full time but everyone has offered support when they can. I don't mind the physical side of things too much, it's more my emotions. I have Health Anxiety myself and am on medication for that but obviously it's really triggered me. 

Your emotions will be up and down also like a rollercoaster. No one knows unless you are watching your loved one suffer. You only seem young and that will s dreadful. We live in the north east bit unfortunately my eldest lives in Australia and youngest has two young daughters and I feel quite alone at times. We have laughed and cried on here but please just come on and moan or whatever as we know what you are going through. Is your hubby having chemo when strong enough xx

Yes, me and my husband are both 37. We live in plymouth so in the south West. 

I'm sorry you feel alone in this, know that I'm always here as well. It's comforting to talk to others in the same situation. We don't know about chemo yet, the first biopsy was inconclusive amd so they're doing it now the tumour is out. They staged it T2 N0/1 so it depends if the nodes are effected. The surgeon told us that lymph nodes have flared up but would happen regardless because immune system causes that to happen but the suspicion is there. Xx

Stage 2 is good. My hubby is stage 4 from the beginning. Sometimes I just think it is not real and then at 4.30 he was up poorly and then it hits me like a brick. You will have a thermometer so just check his temp and ask the GP nurse to call out to check his site. I do check his and blood pressure. He has had sepsis twice. Don’t worry big we don’t answer straight away but we will. We have one or two who still come on and give support which is lovely. Don’t look anything up as it is not good. Wait til you hear from the professionals. It is comforting to talk to others in the same situation but after all these years my hubby does not know I come on here. I doubt he would be angry but best not to tell him. Sending you a big hug xxx

Hi BeckyK87 

I don’t often post on this thread but wanted to say hi as our stories seem quite similar. My husband was diagnosed with rectal cancer just over a year ago at 40. We have a 5 and 8 year old. Unfortunately his was more advanced and he had radiotherapy and chemotherapy to try to reduce the extent of the surgery required. Unfortunately that didn’t work and he ended up having a total pelvic exenteration surgery in February (removal of bladder, prostate and rectum) leaving him with 2 permanent stomas. 

Like everyone else here it just seems like an endless rollercoaster and it is particularly tough when you are trying to stay strong and seem positive for the kids. It is very hard to find time for yourself when you are just trying to keep all the plates spinning to make sure everyone else is ok.

My husband was in hospital for 17days post surgery and then ended up only being home for a week before being readmitted for a further week due to a pelvic abscess and infection. The last 12 weeks are a complete blur and it’s hard not to dwell on all the things that didn’t get done at work or at home, or the times I didn’t feel like I was the mother or wife I wanted to be. But all we can do is do our best and come and vent our worries and frustrations here. 

That said it is not all doom and gloom… this weekend we went away just for a couple of nights for the first time in over a year and it seems like a miracle that we’ve made it this far. Next week is multiple hospital appointments again and back to reality but I’m amazed at how well my husband has recovered and adapted.

I hope you find the forum helpful. I know I do even if I mostly just lurk in the shadows! It’s so nice to know you are not alone. Wishing you, your husband and family all the best. Big hugs and stay strong. Don’t forget to try and look after yourself when you are able. X

Hello and welcome hope your husband gets sorted and out of pain , my husband had has a stoma also, he has a had a stoma for 3 years now and copes well with it , he had chemotherapy and radiotherapy before he had his op and a stoma , then 4 months later he had his op to have the tumour removed and a permanent stoma the opposite side to the first stoma which they closed up and then got the all clear .

unfortunately a year  ago they discovered it was back in his peritoneal and is stage 4 inoperable, he now has chemotherapy almost permanently and it’s a struggle, he copes really well though and remains as positive has he can be .

its a wicked disease and definitely a rollercoaster so take all the support you can get it must be very tough coping with young children too , take care of yourself too other wise you will be no good to anyone.

wishing you all the best x

Hi Angie. Does your husband take anti sickness tablets. Les is the same permanently on chemo and is usually poorly in the early hours or after tea  love to everyone xx

No he doesn’t get sick so no need he get very nauseous after tea but not actually sick , they do give him a anti sickness infusion just before the first chemo infusion, then he has the pump that takes 48 hours for the chemo to drip in , he comes home with the pump then we have to go back 48 hours later to have it taken off, he does get a lot of stomach craps which he takes tablets for. 
we are off to A&E today his leg is swollen and red thinks it’s an infection hopefully just antibioticsxxx