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Original poster

Update on Rindercella's DH

1000 replies

Rindercella · 09/02/2011 12:21

Apologies for putting my name in the thread title - it seems so self important but I don't mean it to be. So many of you offered so much help, support and fantastic advice, I just wanted to let you know where we are at. Previous threads here and here.

DH was diagnosed with advanced metastatic prostate cancer with secondary lymph node cancer in May last year, when our DD2 was just 5 weeks old. 9 months on and things are very far from well. DH's health has unfortunately really deteriorated since then. Particularly since Christmas he is suffering so much more pain and discomfort. He can now barely eat and is just so, so weak.

He saw his oncologist yesterday and he is to start a course of chemotherapy starting next Wednesday. He also needs a blood transfusion next week (and thank you to everyone who gives blood, what a brilliant thing you do).

He is a very, very ill man. It is so bloody hard to see the man I love so very much waste away. There is no prognosis. I know he is going to die from this fucking awful disease. I just don't know when.

I am getting counselling, which is definitely helping me. And my SIL is now more or less living with us which is so fanastic I cannot tell you - her being here helps us all so much, and it helps her and it helps the rest of their family, knowing that she is here. I actually don't know how I coped for the last couple of months before her arrival. I am still manically busy, and that's with an extra person helping me. I think DD1 feels it very much too and is especially clingy to me and she really hates me leaving her (eg when I drop her off at preschool).

Mostly this seems so surreal. Like I am not really typing these words. Cancer. Chemo. Only pallative. My darling husband. Those things just shouldn't be joined together. But they are and it is very, very painful.

I hope that the chemo does make DH feel better (I understand that he is likely to have bad days following the treatment). The worst pain for him is in his bones. He sometimes screams out with the pain. Just heartbreaking.

Does anyone have andy advice on how best to help him through his chemo?

OP posts:
Ormirian · 09/02/2011 13:59

So so sorry rinders Sad.

Original poster
Rindercella · 09/02/2011 14:06

Hassled, you post brought tears to my eyes, but in a nice way. Thank you. Shiney, you're the awe inspiring one, seriously. Will catch up with your news later.

This morning has been quite a difficult one. After dropping Dd1 off I was 2nd on the scene after a friend had written her car off. She had her 2 yr old with her. I waited with them and then took them to dr's, etc. Poor thing is so upset and keeps reliving it and thinking what if... I am actually quite shaken by it.

Of course all of that through out DH's routine and now I feel bad as I should have been at home.

OP posts:
everlong · 09/02/2011 14:09

This reply has been deleted

Message withdrawn at poster's request.

AFingerofFudge · 09/02/2011 14:43

Positive thoughts and prayers from here too. Have just read back through all this posts from the last few months and your own bravery and honesty really come through. You are doing an amazing job even if at times you don't feel you are!

onlyjoking9329 · 09/02/2011 17:37

Hello there.
Sorry to hear that the treatment is now pallative.
Are the mac nurses addressing the pain management?
He really shouldn't have to be in pain, they may suggest a short stay in the hospice so that they can get on top of the pain management, try to see that as a good thing.
I know the thought of going into a hospice will bring up all manner of thoughts and feelings for all of you.
The hospice my DH spent time in was fantastic, the staff were great and they really took their time to get to know the whole family and when the consultant comes in then you will be given plenty of time with them and a chance to speak to them on your own if you wish.
My kids were made very welcome and were given lemonade ice cream and an Easter egg.
Advice for chemo
Lots of fluids, pineapple juice is good for sore mouths.
Make sure not to be fobbed of with the cheapest anti sickness tablets, they often try the cheap ones first, steve ended up on ondansetron (sp) £7.19 per tablet but we did have to push for it.
I'm glad that you have SIL with you, but so sorry you're all having to deal with cancer. your family remain in my thoughts.

Original poster
Rindercella · 09/02/2011 22:31

Thank you all for your thoughts and your prayers. OJ, thank you so much for your advice. I have made a note of the anti-sickness drug and will do my utmost to make sure DH gets this. For DH, pain management is his #1 priority. He has said that he is totally happy to go to a hospice, but just so long as they get his pain under control and have a strategy to effectively manage it. He has said that he's as well to be vomiting here as he is in the hospice, but if they can control his pain then he's all for stays there. He loves pineapple, so that's great to know.

My DD1 is cuddled up in bed with me now. We have given up on the pretence that she is ever to sleep a night in her own bed and she now just takes herself off to my bed (spare room) after I have read the girls their bedtime story. I actually love her being in with me and I guess I will deal with it if/when it becomes a problem. For now we both draw great comfort from it.

DD1 is actually having great difficulty in me leaving her at the moment. It takes forever to leave her at preschool, as she's asking to come home with me, for me to stay with her, etc. But when I ask her at the end of the evening what the best part of the day has been she always says 'little school'.

Driving back with her today nearly broke my heart. For 3.5 years old she shows such emotional intelligence it staggers me. She said that 'Daddy goes to the hospital too much'. That the 'doctors are trying to make him better but can't'. How 'Daddy won't be here for always'. And 'I will go into Mummy and Daddy's room but Daddy won't be there anymore'. God it nearly broke my heart hearing her. And I really don't know where she has picked up all of that from. But she knows. She can see just how ill DH is and is starting to understand, in her own way.

SIL has now gone back to London for a couple of nights. I think we are all missing each other. But she'll be back soon and I know I can cope between now and then.

OP posts:
Buda · 10/02/2011 11:26

Poor DD1. She sounds great but it is just not fair that she is having to deal with all this.

I agree that keeping her in with you are night is good for both of you. My DS is now 9 and although as a baby he slept in his own cot and then bed, we moved country when he was 3 and that unsettled him and he would come in to us most nights. Some nights we wouldn't hear him and just find him at the bottom of the bed in the morning! We ended up with me in the spare room with him a lot. Then we moved house again and he really didn't settle in this house for some reason (which was odd as his best friend lived in it before us so he knew it well). Anyway.... we ended up with DH in spare room (he is still there!) and DS in with me. Tried and tried for ages to get him into his own bed but he was having none of it. But in the last 6 months he has moved into his own room fine. Even when DH is away he doesn't want to be in with me. Sad What I am saying in a very long fashion is that even if it takes a long time she will eventually moved back into her own room. And both of you getting comfort from the closeness can only be a good thing.

kuckingfunt · 10/02/2011 13:08

So, so sorry to read this Rinders, my thoughts are with you and your family.

PositiveAttitude · 10/02/2011 13:20

So Sad Rinders, no words will help, but please be assured of thoughts and prayers for you, DH and your family.

Flisspaps · 10/02/2011 13:23

Rinders :(

Thoughts are with you x

PositiveAttitude · 10/02/2011 13:24

So Sad Rinders, no words will help, but please be assured of thoughts and prayers for you, DH and your family.

Bumperlicious · 10/02/2011 13:25

So sorry you and your family are going through this awful thing.

PixieOnaLeaf · 10/02/2011 13:25

This reply has been deleted

Message withdrawn

Richlinn · 10/02/2011 13:35

My partner's son died of cancer one year ago at the age of 20. All I can say is my thoughts are with you and your family at this time. If you can, please take some time to think about - and look after - yourself. I used to find that going to sit by myself in a cinema brought some relief from a very stressful situation. Take care x..x

exexpat · 10/02/2011 13:36

So sorry to hear you're going through this.

I hope this is still premature, but if your DD is already starting to talk about how 'Daddy won't be here for always' have you been in touch with any of the organisations that help children through bereavement? I think they can help you prepare children for what's likely to happen and make it as un-traumatic for them as possible.

The one I know best is Winston's Wish which has a very useful website and phone helpline which anyone can use (they only offer direct counselling and support in their local areas), and I know there are other local charities doing similar things. Another one near me is the Rainbow Centre which a friend's DCs used when her husband was going through chemo.

I've heard some hospices and Macmillan teams also have specialists who can help with this.

ThisIsANiceCage · 10/02/2011 13:37

So so sorry. Sad

Understand exactly what you mean about the words "not belonging in the same sentence."

Here's another wrong word, tho I'm sure the hospice have suggested it: "memory box". Sad

BusyMissIzzy · 10/02/2011 13:44

Rinders I'm so sorry to hear this. I'll be keeping you, your DH and your gorgeous girls in my thoughts. x

BlessedAssurance · 10/02/2011 13:44

Rinders Sad so sorry, my thoughts and prayers are with you and your family,,no one should ever go through this,

FlipFantasia · 10/02/2011 14:07

Rinders Sad. I have no advice, but wanted to say my thoughts are with you all.

I lost my father (to a heart attack) when I was 8. So different from your girls' experience but I know what it's like to grow up with just an (amazing, inspiring) mum. The suggestion to get help from a bereavement charity for your girls is a good one.

Lulumaam · 10/02/2011 14:10

I am so sorry that the news is bad. what to say, except thinking of you x Sad and your girls xx

evitas · 10/02/2011 14:32

Rinders so sorry. Think of you and your family x

slimmingsarahandco · 10/02/2011 14:33

Rinders, so so sorry to read your thread, you really are a very strong woman, Glad to hear you Sil is living with you and offering much needed support for you and your beautiful girls x

i am thinking of you all x

Take care

madamimadam · 10/02/2011 14:56

Rindercella, I am so, so sorry for you and your family.

I don't know if it's too daft to mention but I used to bring my best friend chewing gum. She didn't chew it, I don't think but it seemed to help her mouth feel less dry.

I don't know what to say - I can't imagine what you're going through or what it must take to be the anchor for your family. I hope you are managing to rest and look after yourself, too.

You and your family are in my thoughts and prayers x x

TheGashlycrumbTinies · 10/02/2011 15:07

Rindercella, you DD sounds like an amazing little girl.

Really hope your DH gets his pain relief sorted out quickly.

You will all be in my thoughts.

marriednotdead · 10/02/2011 15:19

I am so Sad for you, cancer is a hideous disease. I hope the pain relief gets sorted asap to give your DH a little respite.

Could you consider DH recording messages for the DCs and you? It could be cathartic for him, and would give you all some comfort at a later date.
Just a suggestion.

xx

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