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?

I almost hate to write this, as I want to write positive things about all the years you'll have left, and how he will be so much better tomorrow...

My mum died of cancer when I was 4 and my sister was 2. They "protected" us from it entirely. I have a handful of photos and a chatty letter from my mum - and very few memories.

It breaks my heart to say it, but anything your DH and you can do to "make" things to remember him by will be SO appreciated by your girls when they are older. Photos, letters, video, audio messages - anything really.

I would kill to have my mum still here. Photos aren't an adequate replacement. But I would love to hear her talking about us as babies, to have a sense of the person she was. As I was growing up she was only ever talked about in hushed voices; "too upsetting" sort of thing. She was "taken" from me, not only by illness, but by other people's emotions IFYSWIM.

I am so desperately sad for what you are all going through!

You don't 'know' me or anything, but I want to say how strong, brave and wonderful you sound. Such a lot to cope with for anyone. Lovely that you have SIL's help but if there is anything else anyone can do for you all don't be afraid to ask.

What a wonderful dd you have running the bath it made me smile but also cry. I'm going through the same horrid thing with my father who is 60 so sort of now what you are going through but in a more removed way. Just to let you know my charity is prostate cancer and I'm braving the channel this year to raise as much money to help fund the research on this terrible terrible disease.

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

I'd love to give you all a massive hug, just to say thank you. As unbelievable as it sounds, each one of you, with your advice, kind words, thoughts and prayers - even if you think you personally add nothing - each one of you gives me so much. Words just cannot express how much I value your posts on here.

NL, I have thought about you and your sister a lot over the last couple of days since I heard your news. I hope you're doing ok xxx

Porto, I am so dreadfully sorry that you lost your mother at such a young age. It's very interesting talking to my SIL as they lost their father at a very young age - she was 4, DH was 9 when their father died of a heart attack at 34 (yes Jan Moir, I was incredibly insulted by that article you wrote). Anyhow, she has been incredibly helpful re the emotional impact on DD1 and has said how their mother has never - even 40 odd years later - been able to speak of their father to them and how difficult she personally found it. Now, it seems impossible to put myself in the position of my MIL - a young woman, barely 30 years old, suddenly widowed. A recent immigrant to a strange country with 5 children aged 9 and under. I cannot judge her at all for how she coped with that unimaginable situation. But hopefully, from the thoughts of her children, I can learn from it and use their experiences to help forge the best way I can for my children and me. I hope that makes sense. I don't actually know if anything makes sense at the moment. Sometimes I breathe and it seems that my whole body is going to be consummed with that breath - it just sort of wells up within me.

DH is definitely not going to see his oncologist tomorrow. I am so pleased. He cannot get out of bed at the moment and so I was so worried about the impact an unnecessary hospital visit was going to have on his body. He has to go to the hospital again next week for his next session of chemo (unless they can do it at the hospice) so actually, the god consultant can see him then.
Or come out to see DH where he is. I am sure he'd like a trip to the country.

Did our wills today. Solicitor is coming back on Weds with the drafts. It was surprisingly easy and unemotional.

One of my other SILs ( I have 3) was up today with my MIL. She brought shed loads of lovely food from her brilliant restaurant. If you're ever in Bristol & fancy some Caribbean food and a bit of a party, go to Plantation. It is fab It was so nice to get back this evening and just heat up some brown stew chicken & rice & peas for the girls & me.

DH was slightly better today. But he can be a right grumpy so & so. I think that one thing being seriously ill can make you is selfish - probably unsurprisingly and I can't say I blame DH at all. But it does make it more difficult on the people closest to him. Sometimes I have to brace myself before I knock on his door, worried about what I am going to walk in to. I was just going to say that I just want him to be comfortable and happy. But how can he be happy??? He was one of the fittest men I have ever known, and that has been stripped away from him. He cannot get out of bed unaided now. How fucking unfair is that? I hope he regains a level of mobility as I would hate to think that this is his life now.

God, what an essay from me. Sorry. And I have acknowdleged so many people. Whomoved, Blenheim sounds a plan...PD, I tell you, those chocolates are absolutely bloody gorgeous. Blathers, you're right it is DD2's 1st birthday this month - a week on Saturday to be exact. I have barely thought about it and really don't know what to do. I suspect we will have tea and cake (boy, does DD2 love cake and biscuits) with whoever is around. It's one thing I don't feel guilty about as we hardly did anything for DD1's first b'day either. Everyone else, thank you. Your kind words have not been lost on me xxx

Rindercella, I do not 'know' you on Mumsnet, but have just read part of your thread and want to add my best wishes to you and to your DP and to all your family.

I wish my words were more than words.

Many hugs to you all.

Okay Rinders, how about Thursday? I can either pick them up at say 9:30 and have them back by 2pm or I can pick them up at 1pm and have them back by fiveish. Whatever works better. I'll feed them so don't worry about sending anything other than a change of clothes. Will need a carseat for your DD2 though. (I have a spare for your DD1) And a sling if you have one.

rinders, i know the feeling you mean about the breathing, i used to get it when my dad was dying of cancer (i was luckier, though, i got him until i was 23). it's awful, i used to say it felt like i was drowning, like i was breathing in water or something... not waving, but drowning, i suppose...

i feel for you and dh and the children, my mum was left with four of us, the youngest was 14. we are so lucky to have clear memories of our dad, and to speak of him often. it's inconceivable that we wouldn't, tbh.
regarding the photos, i imagine it is genuinely tricky for dh to be represented by a man he doesn't recognise as 'himself'... do you know anyone with a good camera who might be able to get round this a bit? there are a lot of things that might be done, make the colours vivid to lighten the 'mood', or perhaps you could focus on his eyes during a smile or something? i would LOVE to be able to see my dad's eyes crinkling with a smile now, but of course the photos we have can't be blown up in that way, they're just snaps.

my dad also said he was going to write me a letter and for one reason and another he didn't manage to and it is a tremendous sadness to me that i don't have it.

love to you and yours, Rinders.

Rinders - I'm sorry DH hasn't picked up like you hoped he would (yet). I think it was a good decision not to go the the Onc today as you say, he can see him next week or he can come to DH.

DD1 is an absolute little star isn't she :)

I guess as you have re written your wills and DH has asked you to speak at his funeral - he is facing up to the fact that he may not recover from this :( so - I think you have to be quite blunt about the photo boxes - just tell him that even though he feels he doesn't look great it wont matter to the girls, they will want photos of him and with him - recent ones, not just ones of when they were much younger (especially DD2) and that if he does perk up you can take more and the ones where he's looking very ill can be thrown out... stress to him it's not fair on them not to have photos of him because he doesn't feel he looks his best. It's fine to be quite selfish (if that's even the right word) when you are as ill as he is, but at the same time, he needs to do whatever he is able to do, to help the girls in the future.

Re you speaking at his funeral - it's amazing what grief/love/shock will get you through, just tell him you will do your best to do it, then don't think about it again x

Take up any offers that enable you to spend time with DH on your own x

I know it doesn't really help you, but I'm sitting here crying for you and so angry/upset that you are having to go through this - it isn't fucking fair!! Not at all xxx

Whomoved - please give them all a hug from me when you see them x

NorthernLurker - I'm sorry about your BIL, I haven't been on MN at all this week really and I missed your thread. It is a bloody horrible, unfair, sad, disease that robs of those we love. Much love to you all. I hope the funeral goes as well as it possibly can x

Thanks Chipping and Rindercella. I'm doing ok. Better today. I think my 'shell' is growing back a bit.

Rindercella - my sister said her dh changed. It is just one of the horrible things about this malignant disease. It can't take away the love though.

I think Chipping is totally right about the photos btw. Hopefully you'll get many, many more - but you need some from now.

Sorry quick message for Whomoved. Thanks for the offer, bit tomorrow not good. Richard has taken a massive turn for the worse. Dr's don't know how long left x

Thoughts and prayers for you, your DH and your family

Oh Rinders. I am sorry. Shit.

Thinking of you. Wish there was something I could do or say.

So sorry - will be thinking of you.

Oh Rinders

I was so sorry to read your last post.

Am thinking of you all so much and praying for you all. Take care. XXX

I'm thinking of you too - you have been so strong in the face of horrid unfair adversity.

Rinders - I'm so very sorry to read your last post. Keeping you in my thoughts xx

Rinders - so sorry to hear things are so bad! My thoughts and prayers are with you x

Rinders, I am so sorry

You and your family are in my thoughts xxx

so sorry to hear this!

It is a lovely idea to "make" things to remember him by like a treasure box with photos, letters, video, audio messages - anything that the girls can come back to as years go by.

A friend who lost her dad quite recently keeps a box of small mementos like a nail clipper, a mug, a couple of favorite books etc...the importance is all in the memory that raises from those little insignificant objects and always puts a smile on her face.

take care

Thinking of you all

More love coming from Italy. xx

Sending so much love and thought for you and your entire family xxx.