chat and hand-holding for those of us supporting a DH with cancer - new thread for the new year

[MrsShrek3]

sign in, folks :)
Hoping that 2013 brings better stuff for all of us.

[cornygrigio]

daisy I am so so sorry xx

[daisydotandgertie]

Thank you all. It is what all of us on this thread fear and I cannot believe it has happened to us.

I have a problem now, and I don't quite know what I should do with it. Mr D was getting much better, and as you know the chemo had worked well. We knew that it wasn't curable but there was hope it could be managed.

Yesterday, at the hospital, the palliative care nurse told me that Mr D would not have been in the crisis he was if the GP had carried out the blood monitoring that the hospital had requested. That if his blood had been monitored, he would not have been in the position he was yesterday. That he wouldn't have died. That the problems which had brewed would have been managed and solved.

Today I have had a meeting with our GP who agreed that they failed. That they failed to care adequately for Mr D. That he failed to spot that MrD was anaemic - on admittance his HB level was through the floor. That he should have admitted him on Friday when he saw him - not said he was OK. That the palliative care team who I called in for a visit on Sunday because I was worried should have noticed he was so ill. That their failure has led directly to his early death.

My brain is in overload. He really, really should not be dead. But he is. I no longer have my wonderful man.

What the fuck do I do?

[Hellenbach]

Daisy, I am so, so sorry to hear your news.
What a huge shock for you.
Do you have family and friends supporting you? I am in North London, please let me know if I can help in any way.

It does sound like you may have a case for medical negligence. I have a friend who works in the field, I can ask her for advice.

Sending you a big hug x

[gingeroots]

Oh Daisy .

The worst thing has happened and now you've learnt that errors were involved ?

How unspeakably cruel to be in your situation .

I hope you can get good advice here ,maybe from Hellenbach .

Have you friends and /or family with you ?

[MrsShrek3]

just read daisys post. shit. I had thought maybe I'd missed something as he appeared to be doing well the last I heard. now it appears... well .
Agree with Lisa, not to use your limited energy on this for now though. concentrate on an amazing celebration of his life, and make sure that everything you want for him gets done. don't let the anger get in the way of it for you. you will get justice for both of you - a little later. if you come back to it with a more clear mind you will make a better case. honestly. perhaps write down that you have heard today, clearly, and date it. if anyone had with you get them to do the same, as a witness statement. Then put it away for a while. Hand holding for as long as you need here. Words aren't enough.

[daisydotandgertie]

This awfulness is growing legs of its own and I can feel it beginning to learn to run.

I have been to collect paperwork from the hospital today, and the bereavement officer brought up the failings and catastrophic consequence himself. I cannot tell you the horror I felt as it became a more official thing; something that has become shockingly real.

Then we went to look at churches - there are two in contention for the funeral and once we'd got home, the GP rang again. To go over the mistakes again. To tell me they were having a major incident meeting over it and to give me the date.

It is unreal at the moment and I am quite glad. I have no clue how I will reconcile myself to the knowledge that my lovely man was let down so badly with such catastrophic and irreversible consequences. That the effort we both put into his fight so that we could squeeze out a little more time together was pointless because just as he was getting OK, just after we'd had the good results of the most recent MRI scan, he has died. And he bloody shouldn't have done. If they'd done their jobs, he would still be here.

How can I deal with that?

i do hope to be able to park it though; so that I can grieve for him. I'll write some notes and pick the brains of the friends I phoned and talked to about it and then leave it, if I can.

Thank you for your support. It helps a lot. And Hellenbach - thank you. I have a horrible feeling this might become a medical negligence issue.

[gingeroots]

daisy I don't know what to say .

That is beyond dreadful .

I think writing stuff down and then trying to leave it is a good approach .

I hope you have people to support you . I hope your mind protects you by continuing to make it seem unreal ,as if happening to someone else .

Think how you would treat someone else going through an unimaginably hard time and try and look after yourself .
Maybe get some sleeping tablets from GP ? Some have very little "hangover" effect ,zoplicone ?

x x

[coreny]

I'm so sorry you've got all this to deal with daisy. It's just terrible.
Perhaps you could write it all down and put it in a drawer somewhere to come back to after the funeral. xx

[Hellenbach]

Daisy -been thinking of you all day.
How are you doing?
Hope you have got some support around you
X

[daisydotandgertie]

Lovely ladies - I've been thinking of asking MNHQ to move my posts about MrD's passing from this thread and start one in bereavement for me.

This thread is about support, love, fear and fighting. It isn't right that it includes this awfulness.

I am doing OK so far; it still feels completely unreal. Like he is the hospital getting better and will come home later on. I know he won't, but that's what it feels like. I am surrounded by him; his clothes, his laundry, shoes, phone, ipad, coats, hats and gloves. What do people do with all this stuff? I can't even wash his dirty clothes at the moment - it feels that I'd be washing the little bits of him that are left away.

I have got a fantastic support network - really I have and I am blown away by the messages of sympathy and love which are flooding in.

To cap off the awfulness, Daisydog3 spent yesterday at the vet - and when I picked her up, they said that with her collection of ongoing symptoms, and as she is not yet 3, they have a strong suspicion that there is some sort of cancer either growing or starting to grow in her. Poor bloody thing. Blood test results will be in today or Monday which they hope might give them a pointer or two. Poor little dog.

[echt]

So sorry for your loss, and its frightful circumstances, daisy.

I've never posted on this thread, and hope I don't appear impertinent when I say keep a record of all your conversations with the relevant professionals. They look now, but the arse-covering may start any time soon.

I'm sorry about your pooch, too. No less of a worry and care for being a beastie.

[gingeroots]

Oh daisy ,not the dog ill as well .
I'm so sorry .

Don't do anything at all that you don't want to ,don't make any hasty decisions .
Don't wash those clothes .

Let the unreality of the situation buffer you a little ,don't try and question or fight it . It's your mind protecting you a tiny bit ,take it in as little as you can for now .

Good advice from others about writing stuff down and not moving these posts . Maybe duplicate them ,but not move .

G x

[coreny]

I'm so sorry about daisydog3 -I hope you get some better news on Monday. Please don't feel that you need to move from the thread - we are all here to support you.

I agree with echt about keeping a record of meetings with professionals if you feel able to. Is there somebody that can go with you to meetings to handle that for you?

I'm so sorry you're going through all this x

[MrsShrek3]

daisy, stay. it's what we're here for.

[JulieMumsnet]

We're so very sorry to hear this, daisy. We're all thinking of you.

[daisydotandgertie]

God. I hope the numbness stays a while - when I first wake up it's not there and the pain is overwhelming. I so, so loved him. I have found a little poem for his service of thanksgiving though which is a start -

He is not lost our dearest love,
Nor has he travelled far,
Just stepped inside home's loveliest room
And left the door ajar.

But I've got so much more to sort out. So bloody much. I went to the registry office yesterday to register his death, but they advised me that I need to speak with the Coroner because of the circumstances. I tried to write the notes yesterday afternoon, but the phone didn't stop. At all. Mostly from the hospital, the vet, the funeral director and stuff. I will do it today though and turn off the phone - before I start to forget things. I have a problem with my MIL brewing - she wants to hold her own service for him where she lives which I am not included in (neither are his siblings). I absolutely don't want her to. I am furious with her. I know she is grieving badly, I cannot imagine her loss but he is my husband and he chose to live here, with me, in an incredibly happy marriage and this is where we should send him on his way. Not there. And not with a split in mourners.

DDog 3 got bloods back and had a very low glucose level which indicates an insulinoma - agressive, fast growing cancer of the pancreas. They'll repeat the tests to be sure it wasn't a blip but I'm not surprised by the news. I know that if it is confirmed, I can't put her through treatment. Depending on its progress, there's surgery or medical management - surgery gives her maybe a year and MM gives about a month and a half. She is a dog. I can't explain what is happening to her, and she can't decide herself; treatment just wouldn't be fair. Poor girlie. After a long and challenging few years, she has finally turned into a fabulous dog.

Thank you for encouraging me stay here. I feel quite at home and I am sure you will all win your battles - we knew we were on the losing team from the outset; the docs left us with no doubt.

[gingeroots]

Oh Daisy ,Daisy , i'm so sorry .

That horrible realisation on waking up must be terrible to go through .

His mother is wrong and selfish . He's not just her son ,he's your love and if she had any awareness she should be happy for him that he found you and should celebrate it .Not try and deny it and sweep it away .

I have no idea as to how you resolve that situation - could someone in RL help ?

I love the reading you've chosen . It reminds a little of this one

^A ship sails and I stand watching till she fades on the horizon and someone at my side says She is gone
Gone where? Gone from my sight, that is all. She is just as large now as when I last saw her. Her diminished size and total loss from my sight is in me, not in her.
And just at the moment when someone at my side says she is gone there are others who are watching her coming over their horizon and other voices take up a glad shout There she comes!
That is what dying is. An horizon and just the limit of our sight.^

Hugs to you and daisydog .

[Turningupsidedown]

Oh Daisy, having finally managed to get back on here after a bit of an absence for a few weeks. I am so terribly, terribly sorry to see your news. I am so, so sad for you, especially given the awful circumstances. The loss on its own of dear Mr D would be shock enough, particularly as he had been doing better, but to be told is shouldn't have happened, I am gutted for you, it must be incomprehensible. I am so sorry too, that there are family difficulties over the funeral and also DDog3 - our pets our so much part of our lives and it is very hard that you have this to deal with this too right now.

I too hope you don't go from the thread, although it is a good idea to open another as there will be people there you will know what you are going through now. But you are a part of this thread and it is for everything that comes with supporting a DH with cancer, including this ultimate awfulness. You have supported me and others during the last few months, I hope that there is some support in the words we write, although they feel inadequate in these circumstances.

I also love the poem you have chosen and also gingeroots poem. You will work out a beautiful service, your love for MrD has always just shone out of your posts. I hope you and your RL support will resolve the issue with your MIL and I am sorry that is added stress. Wish there was more I could do than just send you all my love and virtual hugs. xx

To everyone else, including the new people, that I am sorry have found themselves here, I will catch up with how things are going soon, but right now just full of thoughts for Daisy

[TorianaTollywobbles]

Hello. Posted for first time last week as dh was undergoing tests for cancer.

Came to thread to post results and saw daisy's awful news. I am so so sorry and my heart goes out to you daisy. Just tragic and even more so because it should not have happened. I wish you all the very best.

Dh's results have come back positive for cancer, I don;t think either of us were surprised by that. It is in his bowel/rectum. However, thank goodness it has not spread and they are operating next month. He may need radio or chemo, we won't know full details until we see the surgeon.

The bad news is because of where it is, it may result in temporary or permanent colostomy. We hope it won't come to that, but if if does we will have to cope.

We are lucky in some ways that it is treatable and must count our blessings in that respect. It's still a shock and both of us are still trying to come to terms with the news.

I hope that no one minds me posting here as a newbie so soon after daisy's news. Best wishes to everyone on this thread.

[frostyfingers]

You may know this, I find it incredibly moving - Leo Marks.

The life that I have
Is all that I have
And the life that I have
Is yours.

The love that I have
Of the life that I have
Is yours and yours and yours.

A sleep I shall have
A rest I shall have
Yet death will be but a pause.

For the peace of my years
In the long green grass
Will be yours and yours and yours.

[gingeroots]

Dear daisy thinking of you .