Aged 36 and stage 4 bowel cancer

Hi,

Writing this is hard as I can hear my 3 children playing so nicely. Just over two weeks ago I went to A&E with what I thought was a hernia or appendicitis. Little did I know that 12 hours later I’m being told I’ll be having  emergency surgery to remove a “mass” in my large bowel. What a difference a day makes. Now I have a stoma and bag fitted which I have become used to (if that was my only issue) as well as a 20cm abdominal wound that is healing (far to slowly for my liking). After seeing my oncologist on Friday I’ve been advised that the chemotherapy will be palliative care to lengthen my life (by how much they will not know until the first round of chemotherapy).

Now the support/advice I’m looking for is how me and my wife can break this news to my children who are aged 6,4 and 16 months. Then how to make however long I’ve left to make it memorable for them and me.

Lifeaquatic

Parents
  • Oh bless you! I feel for you as my husband is 40 and was diagnosed with terminal cancer back in April. We have a three year old and a 1 year old. How are you coping and how is treatment going? Sorry to jump in after your first post (not read any further as yet) but I hope you’re ok. Thinking of you and your family so please get in touch if you need to talk xx

  • Hi, my husband was diagnosed in april too!  What type has he got?  Chemo helped but the tumors started growing back in the liver at the last scan in november so we have started new chemo and herceptin, won't find out till next scan if it is working (about 6 weeks). Nervewracking waiting for results!  But had blood tests yesterday and they were 'stable'. We've been recommended doing vegan and 'raw' diet from some people, apparently there is more nutrition in food that is raw.  We started vegan a few weeks ago and he feels good but has lost weight, used to be around 80 kilos and now 76kilos, oncologist said its ok at the moment but they wouldn't want him to lose much more.  I'm finding it very busy researching, cooking new meals and looking after everyone! Feels like everyone needs a piece of me and there's not enough to go around! (Also have elderly parents that need attention). How is your husband going and how are you coping?

Reply
  • Hi, my husband was diagnosed in april too!  What type has he got?  Chemo helped but the tumors started growing back in the liver at the last scan in november so we have started new chemo and herceptin, won't find out till next scan if it is working (about 6 weeks). Nervewracking waiting for results!  But had blood tests yesterday and they were 'stable'. We've been recommended doing vegan and 'raw' diet from some people, apparently there is more nutrition in food that is raw.  We started vegan a few weeks ago and he feels good but has lost weight, used to be around 80 kilos and now 76kilos, oncologist said its ok at the moment but they wouldn't want him to lose much more.  I'm finding it very busy researching, cooking new meals and looking after everyone! Feels like everyone needs a piece of me and there's not enough to go around! (Also have elderly parents that need attention). How is your husband going and how are you coping?

Children
  • Hi plebbs,

    wow - what a pair we are then! Will was diagnosed in April with stage 4 pancreatic neuroendocrine carcinoma and it’s high grade so nice and aggressive!

    He had chemo during the spring and summer which kept his cancer stable. It didn’t result in any shrinkage even though they said it had a 70% of doing so. Then after a break of 5 months his cancer had increased by 20% and he’s now on second line treatment - but when that stops working, that’s it there’s nothing else!

    It’s really hard coping I have to say. I’m not sleeping well, anxious, trying to be super mum and super wife etc but it’s so exhausting and overwhelming. I have elderly parents but thankfully they’re still independent and helping care for Will (as are his parents), which is fantastic. 

    How about you? And your children, how are they?

    i know what you mean about scans too - they’re horrific. Good luck and keep in touch! X

  • Hi, I know what you mean about being super wife / super mum etc.  And the sleeping.... I take a lot of really deep breaths which helps.  I was having terrible panic attacks when he was first diagnosed.   He is very irritable at the moment, getting a lot of stomach pain which is worrying, the dr thinks it is just constipation but who knows. Today I came home exhausted lugging in all this shopping and 6 big bottles of spring water as we were told by a holistic guy he shouldn't be drinking the tapwater - only to have him go mad at me because they were in plastic bottles which he thinks is bad for the environment!!!! Sometimes it feels you are doing your absolute best and pushed to the max and they are quite ungrateful!  Bit like a selfish child, but it must be such an awful way to live with it on your mind like that...hard enough for us so what it's like for them must be a thousand times worse.  A lot of extra stress too as he has had to stop work and being on a benefit now is so hard, not what any of us are used to!  We were never rich but he earnt a decent wage for us to live on comfortably, now we have the extra stress of trying to make ends meet.  My kids seem ok at the moment as he seems quite well, but they don't like it when he gets really grumpy after chemo.  I'm glad you have good family support, I have very little but at least my kids are older and don't need so much attention now, it's so hard looking after everyone isn't it, I've been doing a lot of research and making him special foods which is all takes extra time too.  I guess your children wouldn't understand the signifigance of it all at their age, blessing in disguise maybe?  Mine do know what's going on, my oldest daughter has developed an eating disorder we think because of it (apparently when something in their life goes way out of control they sometimes control their eating instead). On the up side they are old enough to remember doing things with him, we are about to go away on holday, try and get away as much as possible, at home there's always so much to do, its the only way we can all spend proper family time together.  Have to have chemo while we are away tho, hope that works out ok and doesn't put too much of a downer on things!