What a week; My husband went into the hospice last Wednesday as his pain increased. We were hoping it would be a short stay but he’s still there with terrible diarreah. Still not sure of the cause as waiting for stool sample results. Could be an infection or could be from the radioetherapy, no idea.
It’s just all hit home today just how devestating this is. It’s my birthday today and our sons 13th birthday on Wednesday. My husband just wants to come home but I know I won’t cope caring for him 24 hours and having 2 kids to look after. His stomach is so much worse at night and his mobility is too poor for him to look after himself.
Life really has dealt me a sh!t hand…
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I am so sorry to read this @Nori you are going though so much crap especially today .
It’s my birthday on Wednesday - just want the day to be over .
How are the boys holding up ?
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So sorry to hear. Just wanted to wish you Happy Birthday. xx Can you take the boys in on Wednesday so you can all enjoy your son’s birthday together?
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They’re ok. I’ll take my youngest in on Wednesday to open his presents there. My eldest said he’d rather go to school 
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My son has just started secondary and I am grateful he has something normal to do , away from all this sadness. I do put a brave face on at home though .
How utterly rubbish for you all . Wish I could say something right x
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Nori I am so sorry to read this, but no words can express how difficult things are for you all. I am wishing you a Happy Birthday although it isn’t, not sure how to say it to be honest sorry. At least the hospice will get his pain under control so he can come home. Keep messaging here for you xx
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So sorry to hear that, the pain is hard to control , when they said to my son where is the pain he said all over, he did not have diarrhoea but his urine was full of blood. I be thinking of you ,although it does not help us,I wish they would do more research into the hard to find cancers and metastasis . All you seem to hear about is breast ,prostrate cancers but their can come back as metastasis
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The pain is ok but now it’s the bowels. You sort one thing out and another hits. 
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@Nori you are doing the best you can. I’m sure they wont consider discharging him unless they provide support. My husbands cancer was so rapid we cared for him at home. The NHS provided a hospital bed and commode. I had district nurses and Marie Curie health care assistants who came several times a day . They were a anĝels. However i didnt have children to care for and I wont lie, its exhausting.
Be kind to yourself you are important too.
Happy Birthday.
If I didn’t have the boys I’d absolutely do that right until the end. I have been doing it for the 17 months now.
I had a conversation with both boys about my husband dying at home. The youngest (12) said he doesn’t mind if he stays home but the eldest (15) said “absolutely not that would be terrible”, I do agree with my eldest, it would scar him for life.
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@Nori I have been thinking of you lately and wondered how you and your husband was. What a awful situation that you are in and how hard it must be for all of you. I won’t say happy birthday as you most probably won’t have a happy birthday with what is happening with you and your family. I do hope some how that your son will get through his birthday. Sending you lots of love nori. . Take care of yourself xx
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Nori, how is your husband, have they got his pain under control. I hope your son had a nice birthday under the circumstances. Stupid question but how are you doing. Thinking of you xx
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Hi! The pain is much more under control. The problem we now have is his bowels… he’s had a few days of terrible diarreah and it’s not an infection. Could be cancer related or radiotherapy side effects (although that was a few weeks back) he’s on a high dose of Imodium which has calmed it (although it’s still liquid) but now he’s not up all night I should be able to cope at home.
He came home today for a few hours and both boys stayed home so that was nice.
Should be discharged from hospice on Friday
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Hi nori glad that your husband pain is more under control and that you had a nice day as a family. Like I said to you before that my husband died suddenly and unexpectedly with undiagnosed kidney at the age of 53 so older than your husband. I miss him terribly and didn’t get to say what I would of wanted to say to him. I just can’t imagine what you are going through with caring for your husband. You have got so much strength. Lots of love Xx
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Just after I typed this, my son came into me in tears saying he was upset about his Dad. It’s only the second time he’s cried. Makes me so sad that he’s so sad. 
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@Nori At least your son has come to you, take that as a positive. Cancer is the worst thief. Take this time to let your husband know just how much you love him and what a wonderful life you had together. I say this because there was so much I would like to have said but didnt get the opportunity as my husbands medication was increased. You have a hard road to travel but you are stronger than you think. X
Hi, glad to hear that fingers crossed your husband will be home tomorrow where you and the boys will be together. You have a tough time ahead, but please make sure you all have quality time as a family together and in amongst it all try and find a few minutes a day for yourself. I really understand how difficult that can be when looking after someone, I did that for both of my parents and felt not enough hours in the day, I wish I had listened to what I was told for once, few minutes for yourself, take care xx
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Hi Nori, was your husband well enough to come out of hospital yesterday. Thinking of you all. Xx
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Hi! Sadly not. His bowels are still bad and I wouldn’t have coped overnight and having two kids to look after.
I’m getting quite frustrated with the slow pace of everything in the hospice. They are now saying they are concerned about his weight yet I said as soon as he started having diarreah that they need to be giving supplements. I think they all hate me going on but I honestly feel i can do a better job and be more proactive.
I know my husband can’t be saved/cured etc… but things can be put in place to make things not get quite so bad.
I truly feel like giving up… I’ve had 2.5 years of battling with doctors and hospitals for my dad, my uncle and now my husband. I’m wondering if it’s even bloody worth it anymore
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