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?

Morning, thanks for your messages.

Yes, it is great news that DH is putting some weight back on.

His morphine is currently administered by oral syringe. The plan is to find his pain threshold and then give him slow releasing oral tablets to be taken twice a day, with top ups as and when required.

I didn't go to see him yesterday but we spoke very briefly. He's still unfortuantely in a lot of discomfort. I will be talking to the palliative team when I go there today as poor DH cannot sleep properly - not even for 2 unbroken hours - and so how can his body possibly fight the bad stuff if it's exhausted? I am also going to speak to one of the senior ward nurses about what happened the other day. DH had just had a catheter fitted and about an hour later was in extreme pain. I called for help, a nurse came along, looked at his chart and then buggered off. A couple of minutes later I went to find help, lovely nurse came along, unblocked DH's catheter and his pain was immediately relieved. 15 minutes later the other nurse came back with a shot of morphine Just not bloody good enough.

Two of my SILs went to see him yesterday (after dropping MIL off here for a few nights - other SIL is back in London til Friday). One of them, a soprano, started playing the piano in the reception and then they both sang. I understand they brought an awful lot of joy and comfort to some people.

Whmoved, I can't do today, but thank you so much. I promise, I will take up your offer soon

Rinders, I hope this isn't out of line but I really think you should be getting hospice to come out and do his pain relief - I think you mentioned you're in touch with them already?

They are the best at pain management, far better than the hospital. They wanted my friend to come in, but she couldn't take that step, so instead they came to her to administer pain relief.

They are the absolute experts on it.

Rinders I have only just seen this - I have no words of advice, just want you to know that you and your family are in our thoughts and prayers.

Hi Ciderhouse. I spoke to DH's Mac Nurse (from our local hospice) yesterday and she had been in contact with the palliative care team at the hospital, so while DH is still in hospital, they are the people I should be speaking to. But you weren't speaking out of turn at all

Cameron, thank you. Prayers and positive thoughts help.

I understand - that makes sense. I hope he is able to come home soon and then maybe Hospice suggestion will be more appropriate. Take care xx we are all thinking about you.

I am glad the hospice people are on board and helping him to be pain free. Am thinking of you and your family very much. Take care.

Thank you. I am at the hospital now. His mum has just gone to see him while I wait with the girls. V v hard on her, I really feel for her.

DH is less pain today, has a great appetite but is very stiff. Probably a combination of treatment plus so much time in bed. No news on what's happening at the moment - just taking each day as it comes.

I am still feeling very detached by it all. Can't summon any emotional reaction. Think it's self preservation. Hmm.

Hey Rinders,

I know you don't know me from adam, but i just want you to know that you, your DH and your dd's are all in my thoughts. I don't hold much with any kind of God, but i just want you to know that people are thinking of you and sending love and urging you all on.

Much love x

Hello there

Just adding my prayers for your Dh and your family to this. We're going through it with FIL as well so I have some understanding of how hard it must be for you.

Thinking of you all. It's a difficult path you're walking and not one, anyone would choose to walk.
Oj xx

Rinders - how are things today? Did you see DH again today?
Thinking of you xx

Just seen this, sorry not been on much.
Sorry that this come to this hun, and hope he was in less pain today. xx

Once again, thank you all for checking in on me and all your kind thoughts & messages.

Saw DH today. He is slightly more comfortable. Turned out his matters was upside down, which was causing him a huge amount of discomfort sich a simple thing, but it had been like that since he's been there - so for 6 days.

They now think that the kidney blockage is caused by enlarged lymph nodes, rather than the prostate, so did a biopsy today with the plan to target those with radiotherapy. He has his final radiotherapy for his spine tomorrow. We're not sure when he's coming home. I'm a little worried about the level of care he may need if he comes home too early.

So it's a wait and see game. I'm still feeling very detatched - most definitely a coping mechanism. If I allowed myself to think about it too deeply I just don't think I could ever stop crying.

Thank you so much for yor thoughts xxx

Matress grr

Rindercella, I've been watching this thread for a while, and had seen your other ones. Just wanted to add my thoughts for you and your family on to the others. I wish you strength and dignity and send you much love.

I'm glad (that sounds wrong but you know what I mean) to see this again - you've been in my thoughts. Terrible re the bloody mattress, wonderful re the singing SILs. If you have worries re the care at home - who can you talk to about that? Detachment sounds like a good policy for now - the mind/body is fantastic at self-preservation, I think.

Sweetheart it is a coping mechanism. You need it to get through this. I know it's not the same but my darling Mum died 4 weeks ago from this shitty disease and I was the same. I supported Dad and her and was with her at every Oncologist appointment. It's funny what your 'norm' becomes.

Have you and your DH thought about ways of making memories for your girls. We had Mum record a message in a teddy bear for my DD and it has brought so much comfort since Mum died (mostly to me), just hearing her voice. Apologies if I am speaking out of turn and touching on a subject you don't want to consider yet.

The feelings you are describing have struck such a chord with me. I want you to know you are in my thoughts and I'm sending you love and strength for the coming days, weeks, months.

Thinking of you all.

Have nothing useful to say, except that you are in my thoughts.

Morning Rinders

Just another poster popping in to see how things are. Thinking of you. Take care.

Sending love and strength over from Italy. xx

You really come across as an inspiring woman Rinders. Your humour and wit shines through even when you are talking about this horrible horrible disease. Your husband and daughter are very lucky to have you. xx

Love & strength from Italy , I like that (lived there for a couple of years about 20 odd years ago). PictureThis, I haven't brought up memory boxes for the DDs with DH yet, but it is something I have spoken to his Mac Nurse about and she said she would help facilitate the conversation if I wanted her to. I think when DH gets home I can help start him thinking about it, however damn difficult it is going to be. Thank you everyone else for your thoughts, I cannot stress enough how much it helps, knowing you are thinking kindly for us and sending us strength.

Today hasn't been great. Unsuprisingly, DH is still in hospital. He broke down when he saw us today. I think it was seeing the girls, probably being absolutely petrified that he will probably never see them grow up Also he spoke to a very good friend of his last night who had been to the funeral of a mutual friend who had died of cancer. DH was always so respectful and always, always attended funerals of people who he had known. Sadly he obviously wasn't up to going yesterday and I know that that, and the loss of his friend (especially from this fucking disease) really upset him.

He is also getting angry. And very, very grumpy. He is spending 22 odd hours a day in his hospital bed, by himself thinking about stuff. I think he is really disappointed in certain people that they haven't stepped up better, or that it has taken them until now, basically our breaking point, to realise he needs help, support and love (as do I). I tend to agree with him unfortunately but also realise he was bluffing it for a few months last year - there was a lot of bravdo going on - so some people were probably more than happy to accept that rather than question it, preferring to think, ah that's Ricky, of course he's going to be ok.

I have had a goddamn awful headache today, doubtless brought on by stress and a hacking cough I am taking ABs for. Should really get myself to sleep now. MIL has gone home and SIL arrives tomorrow night. I rather like being by myself, with DD1 cuddled up to me in bed and DD2 safely asleep in her cot.

When am I going to break? It feels like it will be soon. I am terrified of allowing myself to think of the true consequences of this disease, of what my darling DH is going to have to face.

You may well find that you cope with everything fine now and for quite a while. You tend to go numb to help you deal with the practicalities, I found.

(For me, this continued for many years after I lost someone close to me due to cancer.)

Can your DH have a laptop or dvd player in the hospital? It will stop him brooding so much.

You're all in my thoughts.

Thinking of you and sending love and strength.(from Greece in my case)

The thought of having to have a conversation with dh about memory boxes must be immensly harrowing, if you can do it though I think it will mean a lot to your daughters later. Obviously, I hope,that they won't need to be made or seen.

You are being so amazingly strong.

Ah, Rindercella. Love and strength coming at you from Switzerland.

It is hard for you all, and particularly when you find out who your true friends are. Gather those close in your heart who are your true friends and try not to get upset at those who show their true colours (or who would like to be there but are scared of doing or saying the wrong thing).

Rinders - keeping you, your DH, and your girls in my thoughts, much love xx