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Update on Rindercella's DH
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Rindercella · 09/02/2011 12:21

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?

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Buda · 09/02/2011 12:25

Oh love. I am so sorry. It is a fucking awful disease.

I have no advice on how to help him through his chemo. Am about to post a thread asking how bad radiotherapy is for prostate cancer as my Dad is just about to start that in March.

Your SIL sounds like a God-send.

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kizzie · 09/02/2011 12:52

Sorry I havent got anything helpful to say - but just wanted to say im so sorry that you, your DH and your family are going through this x

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sb6699 · 09/02/2011 12:53

Sorry, no advice but sending you lots of love and strength x

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MmeLindt · 09/02/2011 12:55

Oh, sweetheart, so sorry you are going through this.

I have no advice, only sympathy and handholding.

Thank goodness for your SIL.

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WorzselMummage · 09/02/2011 12:58

I've read your posts, never known what to write but I'm just letting you know I'm thinking of you x

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YankNCock · 09/02/2011 12:58

Sorry, no advice, but wanted to bump for you and say I am thinking of your family. I can't even imagine what you all must be going through. Your SIL sounds wonderful.

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Cakesandale · 09/02/2011 13:00

I don't know how much help this will be, but I have had chemo for breast cancer. I imagine your poor dh's regime will be different, and of course he is much iller than I was.

But I would say that these are useful tips for anyone on chemo: - drink plenty of water for a day or two before the treatment, and for a day or two after. Staying hydrated is really important.

Rinsing his mouth out several times a day with a weak sat water solution for a week after each chemo dose will do a lot to help in stopping sores from developing in the mouth.

Eating/drinking anything with pineapple and/or ginger in helps a lot with nausea.

If I think of anything else I'll get back to you.

I don't think I have posted to you before though I have watched your threads in great sadness. I am very, very sorry you are all going through this.

If you have any questions just ask - although I recognise that I was not in extremis, as your dh is. But I'll try to answer if I can. x

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Cakesandale · 09/02/2011 13:01

Sorry - line 5 should say 'salt' not 'sat', which is just meaningless. Blush

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ohmeohmy · 09/02/2011 13:18

my thoughts with you all but sorry no helpful advice.

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BarenakedLady · 09/02/2011 13:18

I'm sorry I have no advice to share, but you sound amazingly brave and I too am thinking of you x

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northender · 09/02/2011 13:20

So sorry. Glad you're finding sil such a support.

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oldenoughtowearpurple · 09/02/2011 13:27

Are you in touch with Macmillan and Marie Curie? Is DH getting enough help/advice with pain relief? Do you have a community or palliative care nurse?

I don't have any specific advice, but I do know that when my father was terminally ill with cancer my mum got very little support because it was assumed that she and he were coping OK without it. They weren't - they were classic wartime stiff-upper-lip dont-want-to-bother-the-doctor types and when he died Mum discovered she could have had far more help if she'd asked for it.

Thinking of you.

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Tillyscoutsmum · 09/02/2011 13:31

I have seen your threads and have never known what to say. I still don't. I'm just so sorry you are all having to deal with this Sad It is just such a fucker of a disease Angry

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thumbdabwitch · 09/02/2011 13:33

Rindercella, so :( to hear that. I hope you are getting good support from Macmillan etc.

If you want to, you could try looking at the Penny Brohn Cancer centre in Bristol - they might be able to offer more ways of offsetting the side-effects of the treatment.

Utterly heartbreaking for you - glad that you have your SIL there to help out.

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RumourOfAHurricane · 09/02/2011 13:38

Message withdrawn

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Hassled · 09/02/2011 13:39

I thought of you the other day but I couldn't remember your name so I couldn't search - mind like a sieve. Thank you for updating us, as painful and awful as it had to have been for you. I watched my mother die from cancer a long time ago and you're right re the surrealness of it all - like every day is another hideous nightmare to get through.

I'm so glad your SIL is there, and that you have your DDs. And you'll see your DH in the girls as they get older, just when you're least expecting it - there'll be a look or a smile or a comment and you'll see him again, healthy and well. Will be thinking of you.

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KurriKurri · 09/02/2011 13:42

Rindercella - what can one say? - I'm so very, very sorry your family is going through this.
It is such an awful illness.

I'm glad you have your SIL and that you can support each other.

Take care of yourself sweetheart. x

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oiwhatsoccuring · 09/02/2011 13:42

I have read your posts in the past and never known what to say, so I haven't posted.
There is nothing i can say that will make it better.
I am so sorry you are all going through this.

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mustdash · 09/02/2011 13:46

Is there a Maggie's centre near you? They can offer the most amazing support in your situation. We did find that they didn't come and find us though, we had to find them.

Look after yourself.x

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Rindercella · 09/02/2011 13:47

Thank you all for your messages. People say I am brave, but I certainly don't feel it. Thumb, DH went to Penny Nrohn in Jan. It certainly helped, but I think he's just been too ill to fully appreciate it. I just took him his (tiny) lunch & he was throwing up. Think is the ABs he's on.

We now have two MacMillan nurses and also the community nurse. Jis blue badge has come and he's also receiving the full DLA. So, finally, we are getting the help & support we need. There's a wonderful hospice just down the road where I am sure DH will be able to go for respite/ convalescing.

See, hospice and DH really shouldn't be said together Sad

SIL is just wonderful. I know how hard she is finding this too. She & DH are really close.

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caramelwaffle · 09/02/2011 13:49

I am sorry you are all going through this. I would second the advice about the water.
Our thoughts and prayers are with you xx

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ViolaTricolor · 09/02/2011 13:49

I too have read your past posts, and just can't conceive of anything I could say as being a comfort in this terrible, unfair situation. I am so, so sorry that anyone has to suffer such pain. My thoughts are with you and your family.

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AtYourCervix · 09/02/2011 13:50

thought/hugs/prayers/strength/peace/stuff.

so sorry you are having to deal with this.

where abouts are you? (geographically) am wondering if there is anything i/we could do to help (but no idea what).

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IngridBergmann · 09/02/2011 13:54

I am so, so sorry.

I don't have much advice. The only thing I can think of is - depending on where he's being treated and who his consultant is, they might have access to some different forms of pain relief - presuming he's on morphine or similar. That can cause a cyclical thing with pain thus the need to increase dosages so often but there is something called LDN that my best friend had before she sadly passed away from cancer.

She stopped morphine, and started this stuff and within a couple of weeks was not in much pain at all; by the time she died, she was in none.

It also has no side effects so makes you less 'out of it'. It might be worth asking about anyway...I'm sorry I'm not medically trained but I just thought I'd pass that on in case it's useful xxx

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IngridBergmann · 09/02/2011 13:57

  • Low Dose Naltrexone

    She was being treated by people at the Marsden and St Georges, Tooting. Different cancer but mets to bones etc etc. I can PM you consultant names if it might help, though not sure if they do prostate or not x
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