Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Update on Rindercella's DH

1000 replies

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?

OP posts:
lookingup · 26/02/2011 22:30

I an so sorry for you all, I lost my husband aged 40 to this hideous illness 3 years ago. I well remember the weird detachment I felt at times, it is a coping mechanism that is a godsend if you have children. One thing we did as a family before Matt died was make a family collage, photos, postcards, cards etc etc. it is framed on the wall in the sitting room and Matt got a lot of comfort from doing this with the dcs. Every day as I llok at it I remember the man I loved so much. My thoughts and very best wishes are with you all.

triplets · 27/02/2011 01:39

Hello Rinders, I hope by now you have your darling husband sleeping soundly beside you. You are an incredible woman, I know how very hard it is. Have a lovely day together. xx

trulymadlydeeply · 27/02/2011 16:11

Heartfelt hugs to you all from Dubai, too.

Thinking of you. Hope you've had a LOVELY weekend.

XXX

chimchar · 27/02/2011 18:20

Another hoping you've enjoyed a lovely weekend.

Chipping... I love your little quote. It's beautiful!

Rinders, have a big snuggle tonight x

JaxTellersOldLady · 27/02/2011 18:25

Rindercella just wanted to let you know I am thinking of you and your family.

Original poster
Rindercella · 27/02/2011 19:53

I have a 40.2 temp and have to go to out of hrs dr who was fantastic. Sadly it's been a really difficult weekend, not helped by this. DH's mobility is virtually zero and he needs total care. I can't get anywhere near him because of this thing. Thank God for my sil and friend. Would've been stuffed without them.

Thank you for your your lovely messages, will read thru them properly when a little better xxx

OP posts:
Buda · 27/02/2011 20:42

Oh God. You poor thing. Just what you need. Hope you feelbetter tomorrow.

whomovedmychocolate · 27/02/2011 20:59

Bloody hell Rinders - what fresh hell is this? :(

If you need anything picking up from the shops, email me!

Hope you feel better soon.

StarryEyedMama · 27/02/2011 21:33

Hi Rindercella

So sorry to hear you're ill too - it's so difficult to do all the things you need to do/want to do in this situation, let alone when you're so ill. I hope you feel better soon (please look after yourself, it's easy to say I know and hard to do, but so important, not only must it be physically tiring but it's emotionally tiring for you too and if you are rundown, you're much more likely to pick up bugs - I expect you already know this though and you think I'm being a plonker for even mentioning it)

Anyway just wanted to say you're in my and DD's thoughts and prayers xx

thumbwitch · 27/02/2011 21:35

oh Rinders! :(:(:(
Hope you get/feel better soon

chimchar · 27/02/2011 21:45

Oh no. How dreadful.

Get well soon Rinders. X

essenceofSES · 27/02/2011 21:59

Get well soon Rinders xx

triplets · 27/02/2011 22:02

Its just not fair is it, you must stand at times and want to shout "why me, why us, go on throw it at me". We have felt like that many times in the last three years, but it changes nothing, except I think a good scream has often helped me release things! So hope you feel better, very glad you have got some wonderful support. xx

PacificDogwood · 27/02/2011 23:13

Oh no, Rinders, how awful for you. I am so glad you have family support, so so glad.
Are you on antibiotics now?

I really hope you are going to be better soon.
Sending healing vibes to your DH and you.

ChippingInMistressSteamMop · 27/02/2011 23:26

Just what you need :(

How do you feel about going to a herbalist? Some of the stuff they give you is vile but they really are great at helping to build your immune system etc. You must be so run down with all of this going on :(

Look after yourself x

corns12k · 28/02/2011 08:50

Sorry to hear that you're poorly now Sad
Hope that you feel better soon x

scooby26 · 28/02/2011 15:51

Love to you all rinders- in my thoughts xxx

Original poster
Rindercella · 28/02/2011 16:56

Thanks everyone. I am feeling a little better now. I had a good night with both girls sleeping through so apart from extreme hot/cold/shaking in the early hours (quickly calmed down by appropriate drugs), I feel well rested.

DH is on quite good form, so long as he gets his pain relief before he needs it and his needs are taken care of.

He went to hospital a couple of hours ago with my SIL and will now start chemo tomorrow. I have instructed my SIL to insist that all of his pain relief and personal care needs are dealt with immediately - as these have been severely lacking in the last week, apparently short staffed because of half term - unfortunately, people don't stop being sick/need their extreme pain properly managed because it is half term/a bank holiday/whatever. It's just not fucking good enough. My SIL is far more assertive than I am, so I am sure she will get the message across loud and clear or else I will get the Daily Fail involved. An example of their shocking lack of attention is when I found a used syringe, complete with needle, on the floor by his bed on Saturday. Just where he would normally stand.

Also, when trying to leave on Saturday the palaver trying to get his meds sorted before leaving was shocking and I blasted the nurse who was supposed to be looking after him that day. He said he'd be lucky to get them within 3 hours from that time, but that he'd 'keep on their case'. I insisted he called the pharmacy immediately. Lo and behold, the medicine appeared within 15 minutes (funnily enough just after a consultant had done his rounds. DH says this is often the case - ignored all day until the consultant does his/her rounds and then not enough staff can help him Hmm. This is an oncology ward in a brand spanking new hospital and is making me so fucking angry.

Our MacMillan nurse has been very helpful today and will provide a great deal of help and support I know. She will either get him a bed in the hospice for the days/nights that he needs it or get home care sorted. DH now needs help 24/7 and I just cannot do it by myself. We have this week covered but at the weekend I was terrified about what I was going to do when my SIL couldn't be around. I did speak to the hospice yesterday specifically about that, but there was nothing they could do because it was the weekend.

Big rant from me. But my DH is fighting this disease with strength, dignity and courage. The very least that could be afforded to him is the level of care needed to allow him to do that.

OP posts:
Buda · 28/02/2011 17:03

Oh Rinders. Glad you are feeling better. But it is beyond fucking shit that you and DH have to fight the sodding staff at the hospital for basic care. I despair at times about the general apathy and attitude.

Thinking of you both often. You pop into my head at odd times and I wonder how you are doing and coping.

ChippingInMistressSteamMop · 28/02/2011 17:09

Rinders - I'm pleased you're feeling a bit better and had a semi decent nights sleep - fingers crossed for tonight!

SIL sounds like a good one to try to get things sorted - it's horrible having to ask for a decent level of care :(

The hospitals are all so understaffed - I already knew that, but not the extent of it until I was talking to some NHS staff on here the other night... it's a dreadful situation for staff and patients. It isn't good enough, not by a very long shot. We should all be very angry about the level of care people are getting in hospital - it's just not good enough :(

Great news that you have found a lovely & helpful MMN - the good ones are worth their weight in gold!!

Rant away my lovely - we're all here for you, feeling woefully inadequate, listening is the least we can do.

Northernlurker · 28/02/2011 17:14

Rindercella - we have had similar issues with bil's care at home. After a horrible couple of days and me trying to help with phone calls my sister seems to have some stuff in place that is quite helpful. Thankfully bil is able to avoid hospital. We have no more treatment planned atm and he wants to stay at home. It's not easy though and if they had little ones like you do I think it would be even harder.

thumbwitch · 01/03/2011 02:14

Rinders - so sorry that the hospital care isn't up to scratch - as you say, the least they can do is help him manage the symptoms of this fucking disease.
I hope the chemo has some benefit for him.
love and hugs to you all - rant whenever you feel like it, we can take it!:)
x

sybilfaulty · 02/03/2011 19:57

How are things today Rinders? Am thinking of you all.

Original poster
Rindercella · 03/03/2011 00:02

NL, thinking of you, your sister and your DH. I hope that your BIL is at least comfortable at the moment and that your sister is managing to cope in some way. You sound like an amazing sister to have.

Thanks so much to everyone else too, most especially those who have their own, very personal, experience if this horrendous fucking disease.

DH is home today from the hospital. We're going to see how tonight goes, but it's 95% certain that he'll be spending the following few nights at least at the hospice. DH is v happy about that, as am I really. It's just 4 miles away and is meant to be absolutely wonderful. If they can help him get thru the bad days post chemo and then hopefully a little bit stronger and more confident then that can only be a good thing.

DH is incredibly strong mentally, a little weepy emotionally and so so weak physically. He's lost the use of his left arm, which is v worrying. It's so hard to know sometimes whether these things are the disease or the treatment or whatever else.

I have been in contact with a lot of his old friends and colleagues, finally, sharing the news. I have had grown men - in one case a 6' 5" former Olympian, in tears on the phone to me, such is the love & respect for DH. It's been a v hard couple of days, but actuallyalso quite uplifting and incredibly heartwarming to hear the love for DH come through. At Christmas I felt utterly alone, abandoned. Now we feel surrounded by love and support.

OP posts:
giraffesisonadiet · 03/03/2011 00:21

I have no advice but have just seen this thread as it was in active and have read it, and felt I should post something, just thinking of you. x

Please create an account

To comment on this thread you need to create a Mumsnet account.

Join Mumsnet Log In
This thread is not accepting new messages.