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?

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!

Hi all,

Sorry not caught up with this in a while. Husband's scan showed a second improvement in his tumours and the main secondary one in his liver shrunk to about 3cm. Unfortunately, since chemo stopped, he has deteriorated and we are waiting to find out if he has fluid on his lungs which means his ct scan will be brought forward to this week. So scared as I know it won't be good news. I feel lost for him, for the kids and myself.  I have no idea what else to do, we have literally tried diet, supplements etc. He had d and v last week and has lost all the weight we managed to get back on him. Anyone know how to get weight on quickly??

Gem

Hi Gem,

Sorry to hear about this. I know exactly how you feel. I hope the CT results come back better than expected and give you more hope? My husband had a CT on Sunday and we see his oncologist next week - absolutely dreading it. He has lost a significant amount of weight too and we are now trying protein shakes and bars for him to eat between meals and so far he has regained 2kg. The issue is chemo makes them feel so I’ll and unlike eating doesn’t it? The doctor also gave him some calorific fruit flavoured shakes on prescription but he hates the taste. 

I have to get back to the kids now but will write again soon. Good luck and thinking of you x

How did you get on? We had an emergency ct scan on Wednesday and heard Friday that it's regrown and chemo starts again on Thursday. We find out more Wednesday. :-( 

Hi Firefly,

We got the results on Tuesday after 4 cycles of his second line chemo. Things are stable for now which is good news. Options after this treatment stops working are limited, perhaps even nothing as his cancer is so rare. Even though things are stable I’m worried about for how long? As between his first line and second line chemos to quote his oncologist there was “significant progression”  

How are you and your husband and family getting on? I know your husband is a similar age? Will is just 40 and it breaks my heart. What helps you to cope if you don’t mind me asking? 

Hiya, well stable is good news for now. Kev's tumours reduced with chemo but as soon as it stopped it came straight away. They may offer chemo to your husband again after a break (when it regrows) . They didn't tell us they would but they have offered it now.

My husband is 41 and hates not being able to work, lift, do normal stuff. I think that's the worse part for hi.. if he could have a normal life until the point when it's a few weeks away then he would be coping better but he can't and that's hard.

How do I cope, I keep very busy, I work 4 days as a teacher and we have dogs that need walking every day and demanding teenagers. I don't think about what will happen in the future. I research everything and give him loads of supplements etc so it feels like I'm doing something. I know it will hit be hard when the time comes though as I lost my dad at 10 and it will all come back x