Update on Rindercella's DH

[Rindercella]

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?

Thinking of you all. Hope dh is less sick today.

Same from me too RInders hope your DH is feeling less sick today too.

Thinking of you all x

Thinking of you here too Rinders. Great advice from OJ.

Hope you are having a nice weekend.

I am so glad to hear whomoved was able to help out - what a lovely lady .

I am late to this, but sorry to hear about DD1 having been ill and you poor toe. And also sorry to hear your DH had a bad night/day - how is he now? I hope much brighter again.

It is so sad that there are so many people on this thread who have been through similar ( OJ ), but so good of them to share their experiences and what they found helped them and their families. You are all very brave, amazing people.

Thinking of you lots, Rinders.

OJ, thank you so much for your thoughts and advice. Really helpful. I have tried to take photos of DH several times in the last few months, but he refuses as he think he looks so terrible. I'm not really sure how to broach it with him next as I know he hopes he's going to rally and look better, but what if he doesn't? We have so few photos of him & DD2 together and no recent ones of him & DD1. Nor any recent ones of the two of us together or with DSS or with us all together. I am going to ask one of the Mac Nurses to help me to persuade him I think. Also to start talking about memory boxes with him.

PD, we all know you are a lovely lady too - but you're right, WhoMoved helped me out big time on Friday and I managed to get a rare hour or so alone with DH. You are also right when you say how sad it is that so many people on this thread are able to offer advice as they have been through similar. It's too bloody sad for words.

DH still in a very bad way. Today was awful actually. I am so scared now that he will not be able to come home. I just don't know. He is so desperately, desperately ill. His pain relief is being better managed. He is seeing his oncologist on Tuesday. He is having an ambulance to take him to the hospital 25 odd miles away, but I just don't know how he's going to cope with the journey and also all the waiting around he normally experiences when seeing the doctor. I will be going with him.

My SIL is currently with DH and will be with me shortly. She'll be staying for a few days and then I have a couple of other people on standby to stay depending on when my SIL needs to go home again. My mum, brother and my brother's gf came today which was lovely. Even though DH was in a bad way, I know he was pleased to see them. The girls love to see them too and it takes some of the stress away from me as I don't have to keep 2 active girls occupied by myself. I love my mum! Wish I could see her more.

I really need to spend time with DH, just him and me. Time feels so bitterly short at the moment. A solicitor is coming to the hospice tomorrow to re-do our wills. It's obviously important stuff but I am rather dreading it. DH has asked me to speak at his funeral, but I know I won't be able to. It's because he saw me speak at my father's funeral last year I think and it's now one of his wishes that I speak at his. How????!!!

Oh, I just have to say about DD1. After being very demanding yesterday, she has just been so lovely today. After dinner, I heard her go upstairs. Heard water running but didn't think too much about it. She came down a little while later to say that she had run the bath but couldn't find DD2's PJs. My darling, darling little girl had tried to run their bath (water was running, but plug wasn't in!), put toothpaste on both of their toothbrushes, got her PJs out and a nappy out for her little sister. She is meant to be sleeping in her bed, but sneaked into mine when I wasn't looking! I forgive her, even though she is now snoring next to me.

best wishes again xx how lovely of dd

Oh Rinders - your post has brought tears to my eyes! Bless your dd! You must be proud of them both - it is a lot for everyone to cope with at the moment. Sending you all my thoughts and best wishes x

Rinders, I am teary at the thought of your lovely DD1 hlping you like this. My love and kind thoughts to you all

Your DD sounds so amazing Rinders. Bless her.

Am sorry DH is so ill. I hope he feels better soon and manages to come home.

Doing the wills will be horrible but very necessary.

Thinking of you lots here.

Rinders nothing to say useful I am afraid. But thinking of you

Hugs xxx

(((hugs)))

Thinking of you all here too, and what a lovely lovely girl you have there xx

Rinders, I've been offline for a month and one of the first things I did when reconnected was check to see how your DH is doing. I am so sorry that he is so desperately ill, and that you are being robbed of your family life together. It is shit, shit, shittier than shit. I wish there was something I could do to help :(

Sending you all much love anyway. What a kind DD1 you have there; she has obviously learned a lot from the loving example of her parents.

I haven't posted on the thread before although I have lurked. Just wanted say my thoughts are with you often.

I have no better words than others have already used but want you to know I am thinking of you xx

I have been following your thread but never posted on it.

Your last post about your dd bought tears to my eyes as has many of your other posts.

I have no words that will make you feel better, just wanted to say i am thinking of you all.

x

Oh what a sweetie trying to run the bath!!

Hope you don't mind but I had a little nosey at your profile to see how old DD1 was and noticed that it's DD2's 1st birthday this month. Do you need anything to help make it special?

Another one who 's never posted on your threads before but thinks of your family often. aStarWithHerOwnWays puts it so well about your DD1 - " she has obviously learned a lot from the loving example of her parents ". I really hope you can have quiet time with your DH, aside from all those who also want to be with you both.

The visit to the oncologist at another hospital does sound onerous. I'm sure you've been debating the possible pros and cons in your own mind as to which option is least likely to distress your DH. If there doesn't seem to be a reasonable alternative to this journey, I hope they don't have to keep you waiting around. I'm sure you've thought of this (if you've had time to think at all today) but what do the secretary / other contactable person at the oncology clinic your DH is due at, say about the conditions for waiting inpatients? Apologies if this is irrelevant as the hospice staff probably know the score.
Hope you have some decent sleep.

Unless he's a lot better tomorrow I would think twice about the journey to see the oncologist tbh.

Your dd sounds adorable.

Rinders - you've made me cry, and I'm hard as nails, me . I can't imagine how you cope - and I bet you can't imagine how often you're in my, and I bet loads of MNers', thoughts. Please do what you can to get those photos - they'll mean so much to your DDs one day.

And bless your DD1 - what a little star. My stepmother would say that she hasn't got it off the bushes (which means she's got it from you) :).

I'm sorry he's no better Rinders :(

May I make a suggestion re the photographs. I've just got - for my MiL and my mother for Mothering Sunday a book called A Mothers Memories Book, Our story, our life. There is a version for fathers, and one of the things it requires is photos. You and your DH could fill it in together and it'd be something for you to keep for the children later on?

There is one here but there are lots of sorts available

I was wondering if next week you'd like me to take your monsters to Blenheim palace for the afternoon, give you a bit of time on your own or with your DH. If you have a sling that'll help but otherwise I'll just take the buggy and DS can just walk a bit. :)

We've been going quite regularly so I've worked it all out and it's entirely doable. I will return your children knackered and possibly sandy/muddy, but happy. Although I reserve the right to feed them unsuitable foods such as ice cream if the sun is shining.

Regarding funerals, try not to think about it. If it comes to it, you can try and if you can't get the words out, any one of the hundreds of people who will turn out to mourn this beautiful man will step in and say the words for you.

And if it's not going to help going to see the oncologist, it's okay to say enough and not do anymore, if that's what you both want.

For my cousin's wife's funeral, my cousin wrote the words and the vicar read them. It was beautiful. My sister and her stepchildren are doing the same for her husband at the end of the week. I echo the 'HOW' - how did we get here, how did this happen, how did we not know and I know it's the same for you Rindercella - this time last year life was very different. That scares me so much.

Oh, your lovely, lovely DD1, Rinders, how v lovely of her to try and help like that . They do have v finely tuned radars, those little ones, don't they? Quite scary really, but it also means, she will pick up on all the love and respect between you and their father.

I was utterly unable to speak at our wedding due to tears and have total sympathy that you cannot even contemplate speaking at DH's funeral . I think Whomoved is right, there is no point thinking about it now - if and when the time comes, it'll either happen or it won't, and nobody is going to think anything less of you.

I see bereaved people quite often (I am a GP) who feel guilty for feeling sad/upset/tearful/whatever emotion X amount of weeks/months/years after they lost somebody close to them. Apart from the fact that there is no 'right' amount of time or intensity for grieving,
it is also nothing to be ashamed about to have had a relationship that was of such a quality that losing it, is of course upsetting. TBH, people who 'move on' supposedly easily are either deep waters who are doing their crying inside, or were not that close to the person they lost.
Sorry, this is a very superficial, gross generalisation of course, but not being able to even contemplate how the earth will remain on its axis if you lose your DH, is a credit to how much he means to you. You should be proud of this, and hopefully at some point be able to take strength from it.
Gawd, I am rambling; it makes sense in my own head.

I hope tomorrow is a better day and you and him will be happy with whatever decision you make regarding going for his clinic visit.

I wish there was more than chocolates I could do .

I'm even 'arder than Hassled, and I have moist eye issues. So sad and so beautiful re your dd. Am watching. hoping and waiting with the rest of MN.