38 year old husband with stage 4 - mets in liver and lungs. Heartbroken.

You rant here, SmellTheRoses, sending you all (((hugs)))

Sending you all my love. ((Hugs))

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/bowel-colon-rectum-cancer-forum/221768/chemo-care-top-tips--

Hi SmellTheRoses

Welcome to the forum . A difficult time for you and your precious family . Unfortunately before treatment starts the oncologist can not predict the subgroup who will respond to chemotherapy and despite a difficult diagnosis and prognosis there is a group of patients that continue to life a good life using chemo in a maintenance setting . You will see people on the boards in their fifth and sixth year of treatment. My own mum had a good response and was able to get to surgery . Her spread to her lung came later .

It is overwhelming for you with a young family . Sometimes you need to find some solid ground . It does start to feel as though something is being done about it when treatment starts . I have linked in some chemo care tips which you might find helpful to prepare . There is also a lot of research on the go about the benefits of even moderate exercise on enduring treatment . I will link in some information.

If you click on my user name you can read my mum’s story as she navigated a stage 4 diagnosis. It is never straightforward with lots of bumps along the way but it is not without hope . 

It is very early days for you and certain situations triggering . Our helpline staff are always available. 0808 808 0000. Sometimes you need to protect yourself until you feel stronger and you will .

We are here for you . A lot of people are in the same situation and I will leave them to tell of their own situation .

I will also link in a couple of booklets you might find helpful .

Take care ,

Court

https://bowelcancerorguk.s3.amazonaws.com/Publications/TreatingAdvancedBowelCancer_BowelCancerUK.pdf
This is a good overview of the options open to oncologist depending on his cell type .

Court 

https://cdn.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/1656-source/physical-activity?_ga=2.243745985.572095182.1636153207-1308481195.1636153207&_gac=1.150097508.1651158615.cjwkcajw9qitbhbbeiwap-ge0ru2log0ud102mrkyd4eyeytc9czp4uqqhrxme8xwtz3tq7fziwspboc_hcqavd_bwe
This one is also good in finding a way forward !

Take care ,

Court 

Hi. I'm in the same position as you. My husband was 37 when diagnosed he was 1st told surgery would be curative but during surgery then after surgery and 3 rounds into mop up chemo we got the news that cancer had returned but this time in the para aortic lymph nodes and told he is palliative he then went onto have immunotherapy which has kept the cancer stable but unfortunately it caused him to get ulcerative colitis and the immunotherapy has been permanently stopped he's on no treatment at all for cancer he's been in steroids for 4 months with regular infusions of infliximab for the colitis and watch and wait for the cancer and told if it progresses chemo may be an option again to buy time. We have 5 children aged 13, 11, 9,7 and 3 our loves have changed drastically we plan things around my husbands good days but feel like we can't plan ahead and this is something I'm really struggling with not knowing what the future holds :( my husband has gone from working 40 hours a week from age 15 being really active and fit to now spending most days  in bed it's absolutely heartbreaking I have got great support from my children's schools and also macmillain and our local hospice. Here if you want to chat xxx

Sending hugs SmellTheRoses and Hayleyc89 xx

Hi Court, oh thank you so, so much for your reply and for sending that information. The whole thing just feels so unbelievable and overwhelming at the moment. I can't quite get my head around the fact that this is our lives now. I'm so glad your mum responded so well to treatment, that's fantastic news. How lovely of you to continue to help people on here x

I'm really sorry to hear this. Thanks so much for reaching out. How are your children coping? It's great to hear you plan things around your husband's good days. It's just so, so unfair isn't it. I really hope the cancer does not progress. Also here if you want to chat - no-one quite understands do they and I don't know anyone in this position - although I have no idea how to private message on here! xx

Hi. The kids have struggled with the diagnosis. I reached out to macmillan and they were fantastic they gave some great advice. I have been very open and open about everything as I just feel for us it's the best way to be and we all support each other. We were recommended some children's books by our local hospice if I find the list I will send it to you I got a few of them and find them useful for my younger children. 

It really is so cruel and unfair my husband is struggling with the fact that he won't be around to see the kids get married and have their own families this breaks my heart

xxx