Back in Hospital

[Damien67]

After being discharged on Wednesday with a syringe driver and district nurses visiting daily. My poor wife has been taken back into hospital in acute pain. Her cancer is now all over her small bowel, causing her to have blockages. She is now unable to eat normal meals, she is also being sick regularly. A lesson from the Local hospice is coming on Monday. I was wondering if I should ask her if myself and my children could talk to someone to help us through what comes next as things seem to be getting worse. I feel awful saying this but I feel as if I need to be prepared should things take a turn for the worst. I don't want to lose Jo but I don't want her in constant pain. We have been together since the age of 17 we are both 50.

[Seasun36-uk]

Dear Damien,

You definitely need to talk your worries through and have information to help you and the children....whether it is via the hospice, Oncology Dept or your GP. This is such a difficult time for you all and you want to know how to help your wife and to be strong for her and the children.

Ask your friends to help too, this is when we need our friends and extended family.

Let us know how you get on.

Linda

[Neona]

Our hospice does family support so definately ask about this. Sending prayers for your wife to improve and get home again.

[Petrolhead]

Agree with what the others have said. It is not being disloyal or failing to support if you ask for help. Such an unknown situation for you is so difficult.

Best wishes to you all

Fay

[triplets]

I am so sorry to read your post, I feel so much for you even though we don’t know each other. Your love for Jo shines through your words. As the others have said please seek help, it’s such a terribly hard time for you all. Sending you all much love and prayers. x

[BeeWild]

I would not think Jo would be upset by you seeking support for yourself and the children it might actually ease some of her worry xx you need help to navigate your way through this

I hope she can get proper pain control and her symptoms ease off soon xx

Thinking of you all and sending hugs

[Suzanne333]

Hi Damien.

I was discharged from hospital last week. At home now with a syringe driver and daily visits from nurse. They drain my tummy too as it fills with fluid. I’m sick constantly too. My cancer is blocking my tummy.

Can you get a second opinion for your wife? I did and am hoping a London hospital can help me.

Don’t give up. Sending your wife, yourself and family lots of love and strength xx

[Welshandproud]

You certainly need some help and support at this awful time. That is not disloyal, quite the opposite. Please talk to the people from the hospice and approach Maggie's if you have one nearby. They are brilliant and are there to support anyone affected by cancer, both patients and family and friends. Ours does lots of support groups, counselling and activities. I cannot recommend them enough.

[Cropcrop]

Hi Damien, speak with the hospice staff, they have specialist staff who can help you all through this difficult time. Your family sounds really close and they are very lucky to have you. I send all my love to you all ❤️Xx Jane

[Coldethyl]

Do speak to the palliative care team at the hospice and get some support for you and your children - I’m sure it will help you to deal with what sounds like a very difficult situation - it is hard for all of you but I think it’s far better to acknowledge what is coming and prepare as much as one ever can for these things - as I say to my husband , in some respects I’m the lucky one as if I die , I’m not the one left behind with the grief - you sound very caring so now is the time to take care of you a bit too x

[WoodyB]

Hello Damien, reading about Jo and also Suzanne333 reminds me of when my own wife Suzanne went through similar three years ago. She is now doing well on olaparib (she has the faulty BRCA2 gene) but we went through dark times in 2015. I know everyone is different, but Suzanne recovered by firstly being fed by TPN through a tube in her neck straight into the bloodstream (also IV fluids & minerals) to build up her strength and stop the vomitting (as she was then "nil by mouth") and secondly weekly chemo which reduced the tumours and allowed the bowel to unblock.

If you're not happy with the treatment in your local hospital, you will see that Suzanne333 found Prof Christina in London very helpful. Also see Nicky100's posts. If Manchester is nearer try the Christie Hospital.

Sending very best wishes to Jo, the children and yourself.

[Suzanne333 in reply to WoodyB]

Hi Woody.

Thank you for your messages you wrote. I hope your Suzanne is doing ok. You’ve really helped me lately. Thank you xx

[WoodyB in reply to Suzanne333]

Hello Suzanne, you're more than welcome. You deserve all the help and support you can get because you give so much to others. How are you? Have you got a date yet to see the gastro team at Charing Cross?

My Suzanne is well, had 6 monthly CT scan today, so we will hope for good news at her next clinic appointment xx

[Suzanne333 in reply to WoodyB]

I’m so glad your Suzanne is doing well. I’ll be thinking of you both with the scan results.

I go to the gynaecology oncology dept at London hospital on Monday. I guess from there they’ll get the gastric team at charring cross involved. Hope they can help me somehow.

Sending you and Suzanne loads of love xxxx

[Lily-Anne]

The family liaison lady at our hospice spoke to my husband and my son, and then my husband also asked for a chat with the palliative doc and this has really helped. I’d definitely recommend approaching them. He found Macmillan to be too matter of fact and not overly helpful.

I don’t have time on my side. Although my next appointment is November after this weekend I believe that to be optimistic. It’s really a difficult thing to cope with. My children are coping in extremely opposite ways. My youngest is 19 my eldest is 33 so you can imagine the emotions there.

From my husband I just want to feel that he sees me as the same person I was before getting to this point of disease. I want to talk about normal things and despite being virtually bed bound at least go through the motions of normality. Where there is life there is hope. On down days you want it to be all over. I trust him to get me through those days and back to positivity no matter how bad it is.

We went cemetery shopping, my funeral is planned, I’m quite a realist but I also want to relish every moment. Every hold of my hand, every kiss, every cuddle, every conversation

Just love her during the days whether it’s many or few and definitely speak to the people involved in her hospice care

LA xx

[Hertsmum]

Hi Damien I am saddened to read your post, I hope that the nurses are keeping your wife comfortable. As others have said, it makes a lot of sense to talk to the hospice staff and be prepared. I’ve been verging on a similar situation and had bowel blockages but was then prescribed steroids to reduce the inflammation and this is working currently so I can still eat normally. I expect they have tried this with your wife? It is really important to get specialist palliative doctor on board.

Wishing you and your wife as much pain-free loving time together as possible.

Madeline. Xx

[lorraine71-Australia]

HI , Sorry to hear you feel things are getting worst for Jo , I think it would be a good idea for you and family to talk to some one to help you all ,we understand that this is hard on our loved ones, my best wishes to you all ..take care Lorraine xx