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 - and you are so right, it isn't fair

Thinking of you all too. I hope that the Hospice can get his meds and pain under control and stabilise things so that you can get some good family time in. Wishing you the best possible weekend! xxxx

Just to let you know, thinking of you all.

Hospices are amazing places and I am glad you and your DH have one nearby and are using its services.

It IS not fair and I know only too well how often awful things happen to good people

When the time comes, you will cope - it might not feel like it, but you will as there is no other choice. You are stronger than you might think and you will remain an amazing mother to your children.

xx

Hope you are having a calm weekend Rinders. Am thinking of you all and sending virtual love and positive thoughts from S London. Take care.

Wow, what a roller coaster couple of days. Thank you all so much for your words of support and encouragement. It's been such a hard bloody week that it has really helped seeing your messages. I am so bloody sad though that so many of us have been through this and so can offer advice - really, no-one should have to go through this. It is too hard and too distressing. If I were Prime Minister for the day, I would dictate that cancer just would not be allowed (if only it were that easy).

So, on Thursday morning DH went into the hospice. Which was really, really hard. I am 40 years old. My husband should not be in a hospice - isn;t that where people go to die? That was certainly my thought on Thursday morning.

But, probably very predictably, they are just absolutely fantastic there. He has a private room with doors out to a patio and views over a beautiful garden. The staff are just wonderful. They cannot do enough for him, or for me, and DH's pain is just starting to get under control. There are some concerns - mainly around some of the possible effects of radiotherapy. We are hoping these are short term things and will ease over the coming days.

DH has decided to sell his car - it is a 2 seater coupe, so hardly practical - and get a more suitable car under the motability scheme. We are now talking about maybe then going to the south coast for a day or two in the early summer with the girls. Something to aim for, and something DH can take little, tiny, steps towards over the next month or two.

We have to have hope. The cancer is so aggressive, but we have to hope that the treatment can put it at bay, at least for a while. My biggest hope is that the pain DH is currently suffering can be managed so that he can get more mobile and start to live life again. That is a big ask, I know. But it is what I would like.

The girls are great and giving us both a huge amount of joy. DD2 is thankfully starting to sleep through more which helps me so much. Sleep = gives me strength to face the day ahead.

I know I can do this. The girls will force me to, whether or not I really want to. I would just far, far prefer to do it with DH. I love him, I want him here, with me and our beautiful girls.

Well hopefully he will be with you for a long while yet. :)

Thanks for the update, I'm really glad you got a bit of space to breathe and I'm sending you all good wishes for productive treatment in the coming weeks.

Rinders - so glad your DH's hospice is as it should be and that the pain is starting to be more manageable. I am going to PM you with some info that might help - up to you what you do with it :)

Whatever happens, you can deal with it - and I hope your DH is around for a lot longer to help you deal with it.

Rinder, I had no idea this was all happening, I am so sorry. xx

Rinders, i'm so sorry to learn that your dh is ill, it's a rotten, rotten shame. I hope that his pain team get the cocktail right soon. here's to the south coast on a sunny day...

Rinder, I'm so sorry this is happening to you and your little family.
I think I am pretty local to you.
Please could you contact Homestart South Oxon, it's a Didcot number.
Ask to speak to Lynne, tell her that Sarah has seen this and wants to help 01235 511152.
I've been a Homestart volunteer for 10 yrs now, I would be happy to meet you and get to know your daughters, if this would help, or you can just tell me to get lost.
I'm really good at babysitting.Our twins are now 13 yrs old.
Sadly, I'm also a bit familiar with cancer, I had breast cancer in 2004. I had a mastectomy, chemo and radiotherapy.
I think you had a bad Homestart experience before, please give Lynne a call, or your HV, we are not all wierd!

Rinders - of course you want DH to be with you & of course he should be here bringing the girls up with you and hopefully he will be for a good while - however, if he isn't, you are strong, you & the girls will be there to help each other and we will all do what (little) we can x

Hospices are amazing places aren't they. I haven't ever (fortunately) used or heard of one which wasn't absolutely incredible, with the most amazing people :)

Changing cars sounds like a brilliant idea and will hopefully give you all more freedom. Some time away together sounds lovely. May has been the best month for the past few years and should be lovely and quiet too! I hope you find somewhere nice to go - it will do you all good to have that to look forward to.

Hi. Glad to hear from you. The hospice sounds great. Not what you should be dealing with of course but at least it is good. Fingers crossed they get the pain sorted. South cost trip sounds like a plan!

I think of you often. Which is weird. But I do.

Hugs.

Rinders, thank you for that update. I'm really pleased the hospice sounds all it should be and I'm praying for positive effects from the radiotherapy and effective pain control.

A trip to the coast is a wonderful idea - something to aim for and look forward too.

Hope DD2 continues to sleep better and in all of this don't forget to take care of yourself.

The hospice sounds amazing (aren't they all) and more than anything I hope that they are able to get dH's pain under control.

The days at the coast sounds like a wonderful thing to aim for - I hope you can have lots of sunny, hope filled, family days this summer.

Well done to DD2 for sleeping through most nights! I'm with you on the belief that a good nights sleep enables us to face even the severest challenges better.

How are things today Rinders? Still thinking of you.

Once again, thank you so much for your messages. I have lurked on here a couple of times but haven't had the energy to post (other than about making rice nice or other easy stuff to think about like that). Last year, before all of this stuff, I was quite addicted to MN and would regularly have 50+ messages in my Active list. Now I currently have 6. It is definitely a combination between being too damn busy and also feeling a bit odd about posting about the mundane stuff. I almost feel a fraud, like my opinion will only be important if I'm talking about this. Hard to explain. My life has really been taken over by DH's illness and it's almost what defines me at the moment, although of course it isn't. It just feels like it. Very difficult to explain but I hope I'm making sense.

A wonderful, wonderful MNer sent me the most amazing package from Amazon today. It was a total surprise and really, really lifted me. I know you've posted on this thread and I will PM you separately. But thank you from the bottom of my heart. I have no idea how you got my address!

DH is actually sort of doing ok. He's going to stay in the hospice for at least another week. His pain is starting to get under control and the most acute pain (probably a side effect to the radtiotherapy) is just starting to lessen, slightly. DH is getting a little, tiny bit stronger day by day and getting a little, tiny bit of mobility back. We have to look at the positives and now he can hold a cup of tea by himself. A week ago I had to hold it for him and he would use a straw (or I would hold a beaker to his mouth).

He is coherent and looking forwards. We are having the most lovely converstations and DD1 calls him my Handsome Prince (somewhat appropriately!). Actually, my username on here comes from when we first got together - there was the Rindercella spoonerism doing the email rounds at work, so we referred to one another as Rindercella and Prandsome Hince (or Rinders and Prandsome) respectively

So...little tiny steps. Helped by amazing family, amazing friends and amazing MNers. Thank you. xxx

Lovely post there Rinders, glad things are looking up a little, and what a delightful daughter you have to land on such a particularly apt nickname for her daddy.

Hope the good days are soon outweighing the bad for you guys - sounds like the hospice is a brilliant place for DH to be at the moment.

I agree, what a lovely post . Thinking positive thoughts for you and yours xx

You write so eloquently about such an impossible subject. I've no advice for you, lost my dear dear sister to cancer and it is as you say, an absolutely fucking awful disease.

I don't find prayer easy these days but I will remember you and your family in my thoughts this evening and this helps puts some of my own silly torubles into perspective.

Much love to you all.

PLeased to hear some positive news Rinders - and your DD1 is a complete darling.
Really hope that DH continues to gain strength and the pain comes more and more under control.

just seeen this post sending all my love x

Rinders I should think the mundane is about what you need now. :)

Glad to hear he's getting a bit of strength back.

Thinking of you x.

(and sorry it was me who ratted your address out).

I've only just found this thread, but your strength amazes me. I'm sending you a little more, and my very best wishes.