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Aged 36 and stage 4 bowel cancer

31 Aug 2019 12:30

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

Aged 36 and stage 4 bowel cancer

31 Aug 2019 18:50 in response to LifeAquatic

Hi ya ..

Oh my, I've got tears in my eyes reading your thread .. it never ceases to amaze me just how crule this cancer can be ... it doesn't care who it touches.... 

Now when I was diagnosed with a grade 3 , I needed to prepare my little granddaughter as we are inseparable... and she was only 5 at the time ... one day sitting on my lap, she asked me if I was going to die ... well I told her if I did, then I'd be the little star next to the bright one as that's what we've always said was my mum's... and every night I could look down on her, and she could look up and know where I was.... this really helped her .. and she found she could accept that ... 

Your youngest two, probly won't need much said .. as the 4 year old may need to have questions answered gently,  but honestly .. if you don't know, say you don't know .. children pick things up so easily and when no one answers them, they get even more scared .. I had that when my grandad died .. everyone lied to me ... I was 7 and never forgot or forgave them .. gentle honesty is what I did with my 7 year old son when my mum died ... and he coped with it far better .. 

I hope you can make as many memories as possible .. that's what I've done with my family .. though I'm double your age ... but grab every day your given ... and share feelings .. share tears .. and walk this journey all together ...  sending you a vertual hug... Chrissie ❤ 

Aged 36 and stage 4 bowel cancer

16 Sep 2019 22:39 in response to LifeAquatic

Hi, we are in a similar situation to you.  My husband (43) was well and fit, ended up in hospital with suspected gallstones which instead ended up being stage four cancer of the oesophagus with tumors all through his liver.  We were told without chemo he only had 4 months to live.  Even with chemo, under a year, though we are obviously hoping for longer!  We have two girls,  8 and 12.  Our children being older, it was hard to hide things, so we have been honest from the start.  My younger one hasn't seemed too bothered by it apart from affected by him being really grumpy after chemo (there is a steroid they give him for anti-nausea that makes him very agressive and angry to us all called dexamethasone, watch that one if they give it to you, it made our lives hell!  He now only takes it the day of chemo and gets over the anger quicker, didn't think it was helping that much with the nausea anyway).  She's also been affected by me not feeling up to playing princesses and dolls with her as I used to.. though as time has passed I have been able to go back to it though not as much. Cancer diagnosis really takes your 'spark' away. She's quite matter of fact about Dad going to heaven and meeting him up there later! (Even though we are not religeous they go to a religeous school). My husband is not a believer but I have asked him not to keep saying that to her anymore as it gives her comfort and I feel will help her through. My older one is trickier at 12 years and has just been diagnosed with an eating disorder, they think it may be that its happening due to feeling lack of control in her life- apparently when they can't control something that's happening to them they often turn to controling their eating instead.  I;m trying to get her some counselling through the cancer society here (we live in NZ but are british citizens and thinking of returning as there are some meds and drug trials going on in UK not funded here which is why I am on this forum).  My husband was given his prognosis in may and has been having chemo which appears to have shrunk things down but it is also only pallative care.  It's a weird way to live. We've been trying to spend as much time together as possible, when he's well enough we whip the kids out of school and go away, priorities change.  As time has gone by it has got easier to sleep / eat etc, I've also gone on an antidepressant to cope.  There are some really good books around for kids about this but I've found it too close to home to read any to them yet though I guess I will.