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'm so glad you had a lovely Birthday for Jasmine.

I can't think of the right thing to say, but I know I am thinking of you all. x

Rinders you have a really good way with words. I had a big grin reading about J's shower of cookies. I can picture exactly the same scene with my pair! I'm so pleased that amongst the despair there are still lots of laughs and smiles as well.

at the biscuits. Still thinking of you and yours.

Thank you everyone. Just had a lovely day with DH. My sil brought the girls along a little later, the sun was out, the doors from his room opened to the beautiful gardens and it was another special time.

DH and I spoke a lot about memory boxes, letters, etc (thanks Lisa, you gave me an excellent ice breaker). It was so hard, but also so important. We both cried at little Jasmine standing up and dancing at her party yesterday - it was a magical moment. DH was a fabulous dancer and has always said that'd he'd have lOved to have been a professional dancer. He could have been, easily. My husband is an exceptionately talented man.

He's a bit stronger today, but I am learning fast not to build my hopes up. One day, one hour, at a time. Find out tomorrow when he'll be seeing his oncologist and we can take it from there.

Yesterday was bittersweet but given the circumstances, perfect.

Thinking of you all.

That is one of my wishes for you granted: that you could enjoy a gorgeous sunny day with your DH. You are all in my thoughts daily...and I loved the biscuits story too.

Rinders, I was also just thinking about how, one day, when they're much older, your girls might find it interesting (and heartbreaking of course) to read your posts here. I could imagine that for Jasmine, the story of the biscuits and her first birthday will be precious. I know it's not pressing right now but it would be good to print them off to store away for the day they want to know more about a time they won't remember well. Sorry if this is already said, or it's not the right moment to suggest it. I was just thinking about how well you write about each of these days, which are, as you say, so bittersweet.

xxxx for you and your lovely family.

I'm soo pleased you had a fab sunny family day. You all deserve that xx

Glad you had a lovely day:)

I read your thread and feel so humble that I don't post but I'm sure like many who lurk I pray & wish you well. I wish you could see this invisible hug

Sounds like Miss Jasmine had a lovely birthday. And extra biccies!

I am glad you have all had a nice weekend.

As others have said there is no routine with grief. It just hits you. it wi also exhaust you. So be prepared. And try and get some rest if you can. I'm sure you are running on adreninal.

I am glad the weekend brought those magical moments for you all Rinders :)

"you'll get through because you must and because your girls need you."

I absolutely know this and I expect that somewhere you do too. But, you know, it's okay to hate that knowledge. I did - hated and resented knowing that I would cope and move forward and bear the unbearable. It is normal if you feel that way (and also normal if you don't).

"Bittersweet but perfect"..................such lovely use of words Rinders. I only hope when my times comes with my DH I will find the courage you have. We too find out tomorrow where we go re treatment, his ct two weeks ago has shown two enlarged lymph nodes behind his heart, possibly not operable:(

How wonderful to have had another lovely day after yesterday. Sunshine is so good for your soul x

Richard does sound like he's doing really well :) but as you say, one hour, one day at a time and just make the most of every single minute.

I'm glad you have been able to talk about the letters and memory boxes - it's a bloody hard conversation though isn't it :( but very important for the girls, & you x

He does indeed sound like a very strong, very athletic man. I bet he's gorgeous too!!

I can just picture Jas shaking her booty :) When you get time it would be lovely to have some more photos on your profile (I don't do facebook!).

x

Coming late to this thread as new to the Health board but just wanted to say I'm thinking of you and that you are an inspiration.

Hi Rindercella.
I have been following your thread but not posted before.
Glad you all enjoyed dd2's birthday, the biscuit story made me lol!
I saw somethig whilst out shopping the other day and thought of you. Apologies if someone has already suggested it. They were story books that you could record yourself reading the story onto if that makes sense!
I thought if Richard was up to it, it would be a lovely keepsake for your girls.
I can't remember the shop but will have a search for you if you like.
xx

im glad they were a help and hopefully give focus too.
Im so happy to see his having good days, you really need those. A dancer, boy I wish my DH could dance, his terrible.
Do you need anything? Do you have a video camera? I have one here your welcome to borrow.
If you need me to do anything please let me know xx

Watching your dds together must be very bittersweet.

Re: the memory boxes, could you record or video him reading some story books? I'm sure the recordings would be treasured for many years.

Photos are fab but hearing someones voice is even better.

X

Rinders I haven't been around for a while so missed this thread. I thought about you at the weekend though as I know Jasmine is exactly one month younger than Polly and I thought about her birthday. I am so, so sorry to hear that your DH is so very ill and I wish there was more that I could say or do.

My friend lost her mum when she was 2 and one of the things she cherishes most of all is a tape of her singing Moon River with a little message to her girls who were then 5 and 2. It is such a special thing to my friend and her sister and they still listen to it from time to time. As others have said, if Richard was perhaps strong enough, a recording of him telling them a story could be very special.

Glad you all had a lovely day for Jasmine's birthday.

Sending strength to you all.x

Thinking of you. Hope the trip to the oncologist has been scheduled by now or if it's gone ahead already has been as easy and productive as possible.

Quick update from me, although it is likely to turn in to a long, rambling post based on my previous efforts.

DH had a couple of 'good' days (all relative) on Sunday and Monday, where he was quite a bit stronger and more alert/coherent and seemed in less pain. I ended up staying with him at the hospice on Sunday night, which was really special and hopefully I can again either tomorrow or Thursday night when my SIL is back.

Today DH had gone downhill quite a lot as he was very tired (had family visitors yesterday). No news yet on seeing his oncologist, must chase that tomorrow as that will be another week gone if we're not careful.

Have cried buckets, about all sorts of things, not just DH and our situation. Last week I saw an elderly couple come in to the hospice, the DH obviously seriously ill. His wife burst into tears and was comforted by one of the nurses. I so felt for this tiny little lady - she just seemed so lost. Anyway, I got talking to her on Sunday, we had lunch together. She said she had cried with relief - her DH had been diagnosed with cancer 3 years ago, had gone seriously downhill since last August and she was just desperate for some relief. They have no children, no close family and so it was just her nursing her terribly ill husband. They celebrated their 46th wedding anniversary on Sunday - they met when she had a little sports car and he pretended to be a mechanic when it broke down! That was it she said - they never looked back. Today I realised there was someone else in his bed and he'd died the day before. Am crying now thinking of that lady's loss.

Am thinking about Edgar lots too. Bloody shitty, horrible fucking cancer. Hate hate hate it.

Had some quite difficult conversations today, trying to get 'stuff' sorted out. I remember when Dad died last year seeing my mother taking a deep breath and bracing herself before picking up the phone to call the bank, solicitor, utilities, whoever. Now I sort of realise how/where she needed to get that strength from.

I have thought about my Dad a lot today, and what a special man he was. In a way I feel robbed from grieving from him as my focus has needed to be on Richard and our DDs. I miss him so much. I thought of Fathers' Day today, and for the first time not sending him a card and giving him a bottle of Tanqueray Gin (imaginative of me!). Then of course my thoughts started wondering into the whether the girls will be able to celebrate the day too. Stupid, stupid person am I.

Thank you so much to whoever suggested the video idea. DH thought it was a fantastic suggestion and one day when he's a bit stronger (and there will be a day soon when he's up to it) he's going to do it, and read the girls a special bedtime story. I mentioned it to one of the hospice doctors and she thought it was a fab idea too - I have a feeling it may be an idea used a lot there from now on!

See. Long, rambling post. Helped by seeing a very good friend this evening and sharing a bottle of wine