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Hopefulwife
Posts: 27
Joined: Mon Aug 08, 2011 3:55 pm

Steve Didn't Make Christmas

Postby Hopefulwife » Mon Dec 26, 2011 5:20 pm

Hello all,
I just wanted to let you know that Steve passed away just before 11 pm on Friday 23rd December. Last weekend they told us that his care would be purely palliative as there was nothing more that cold be done. The embolisation to stop his bleed may or may not have worked but it wasn't in Steve's interests to poke and prod him any further. They withdrew the naso gastric tube and his catheter and waited for nature to take its course. He received two further blood transfusions over the weekend to top him up. Then on Monday he was transferred from the xx to our local hospice - xx. Over the week he just slept more and more and ate less and less and found it increasingly difficult to speak. The doctors and nurses at the hospice were amazing with him - and me and the boys. They kept on top of his pain and made him comfortable. They told us what changes to look out for and the signs that he was nearing the end. My parents came to visit him, as did my brother and family and close friends called to pay their last respects to him. Some of it he was aware of, some not. Then on Friday we were told that it would be very soon. I had been with him all day, though he was slipping into a peaceful coma. We got a call at 10.15 to say his breathing had changed and we should come in. Michael (my younger stronger son) came with me and we were both at Steve's side when he passed away.

Due to the Christmas holidays none of the formalities have been carried out yet so we are waiting till tomorrow to see Funeral Directors and arrange to visit the Register Office. Steve was thoughtful to the end. He said he didn't think he'd make Christmas, so he went before Christmas Eve. We had a very busy day on Saturday with friends calling in and phone calls to make, then yesterday we did our best to celebrate Christmas doing what we usually do. It was a quiet day with lots of talk of Steve and a drink or two was had to toast him.

It feels like the treadmill has been going for so long and all of a sudden it's stopped and I don't know what to do. It'd s a kind of numbness. Our lives over the last 11 months have revolved round doctor's visits, hospital visits, long stays in hospital, endless trips up and down to visit, and the emotional turmoil that this horrible horrible disease brings. Now it's just stopped. I have time on my hands to look after me and the boys. I actually went up to our Club this lunchtime and had a swim, a steam and a leisurely time getting ready afterwards - and I didn't feel guilty. I timed my visit when I knew it would be quiet so I didn't have to face lots of people who would want to be kind and talk. When Steve was here I was torn between remembering to look after me and being with him. Now I don't have to feel I should be somewhere else. I can take friends' advice and look after me for a change.

Looking back on all that Steve has gone through the thing that has been hardest to watch has been him in pain. For any of you with loved ones going through this that is the thing you have to be really insistant on - the patient does not need to suffer and they are often not strong enough to fight for pain relief. That is our job.

I send my thoughts and prayers to those of you still going through this awful process. One of you said it was comforting to know that the pain was over when they have gone- how right you were.

Big hugs xxxx Diane xxxx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Steve Didn't Make Christmas

Postby louiepc » Mon Dec 26, 2011 7:12 pm

Diane

I am truly sorry to hear your sad news, please accept my sincere condolences to you and your family at this terribly sad time.

Louie

xxx

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Steve Didn't Make Christmas

Postby rachelqt » Mon Dec 26, 2011 7:46 pm

Hi Diane,

I am so very sorry to hear about Steve. You and your family are in my thoughts and prayers.

Look after yourself..Rachel xx

AnneD
Posts: 58
Joined: Wed Feb 09, 2011 10:45 pm

Re: Steve Didn't Make Christmas

Postby AnneD » Tue Dec 27, 2011 9:12 am

Dear Diane,
I'm so sorry to hear the sad news about Steve.
Sincere condolences to you and your family,
Anne.

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Steve Didn't Make Christmas

Postby Nardobd » Tue Dec 27, 2011 10:03 am

Diane

I'm so sorry and you and the family are in my thoughts and prayers.

Can I just say that your wonderful post, whilst terribly sad, gave me a sense of peace and hope - strange as that may sound. What a lovely person you are to still be thinking of others on the forum at this awful time.

Much love
Nicki

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Steve Didn't Make Christmas

Postby laura » Tue Dec 27, 2011 2:57 pm

dear diane, my love and thoughts are with you, your boys and family, thank you for letting us know about steve, i so understand some of your feelings, am always available if you want to "chat" ok ? big hugs laura xxxxx

HelenF
Posts: 24
Joined: Tue Aug 23, 2011 1:06 pm

Re: Steve Didn't Make Christmas

Postby HelenF » Wed Dec 28, 2011 12:40 am

Hi Diane,

I am so sorry to hear about Steve, as everyone says they are in a better place and I truly believe this. It's some comfort.

Take care
Helen

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: Steve Didn't Make Christmas

Postby lynbo » Wed Dec 28, 2011 5:02 pm

Dear Diane
I am very sorry to hear your news, my love to you and your family.
We are all here for you if you need us
Xxxxx

Hopefulwife
Posts: 27
Joined: Mon Aug 08, 2011 3:55 pm

Re: Steve Didn't Make Christmas

Postby Hopefulwife » Wed Dec 28, 2011 11:08 pm

Hello lovely ladies,
Thank you for all your lovely words and kind wishes. It has been a truly awful time especially with the holiday period to get through when everything was in limbo. Now we have returned to the normal working week I have had a very productive, if harrowing, day. I collected the death certificate - I'm sure not the first to state metastatic pancreatic carcinoma as the cause of death - then went to the Registrar's office to do all the legal stuff, then went to the funeral directors to start making arrangements. The earliest suitable date isn't until the 17th January - they offered Friday 13th but I thought poor Steve had had enough bad luck without the final indignation of being sent off on that day. That will be exactly a year since he first noticed his back pain.

It is amazing how many people need to be told - all the family and friends and acquaintances before you even start on the official notifications. I did think I'd go round in circles and not get started, but once I did, I'm finding it easier. Then something totally random sets you off with the tears. I was looking in Steve's wallet for his driving licence and found a receipt for a Christmas present he'd bought me back at the end of November. So I went to his usual hiding place in our bedroom and found the pressie tucked away, plus unwritten card. That set me off. It was a new perfume we'd both decided should be my new scent.

I feel I should tell you that there is a definite sense of relief that the suffering is over for Steve, and for us too, in that we don't have to watch him going through it any more. Because he was away in hospital for so many weeks, and for such long periods of time, we have already been adjusting to him not being here. That said, our big bed feels very empty and three teddy bears just aren't the same company.

The last week when Steve was in the Hospice was really hard. The Steve that we knew had already gone and been replaced by someone who struggled to understand us and had to concentrate so hard if asked anything. Speaking was almost impossible for him. So - please, if you have your loved one with you and they are still mentally with it and able to communicate, treasure it, and TALK TALK, because all of a sudden they aren't able to and you can no longer get answers to the questions you thought were OK to save up. Cherish the good times, and stay strong.
End of lesson!!
Lots of love and hugs to all, Diane xxxxxx

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: Steve Didn't Make Christmas

Postby lynbo » Wed Dec 28, 2011 11:20 pm

Oh Diane
That must have been hard - finding the Christmas present.
I have kept all receipts from stuff Andy bought me just before he passed.
And I have hundreds of cards he sent me going back to 1995 when we met.
I was a hoarder, and glad I was.
The 17th Jan seems ages away? But better on a day you feel comfortable with.
Ive been thinking about you today, sometimes I find this site hard to look on, but then it makes me realise I'm not alone, and people understand, and care.
My bed only ever has the covers ruffled on one side, it's almost as if no one been in it coz I hardly sleep anyway xxxxxxx

mints
Posts: 32
Joined: Mon Jul 04, 2011 7:43 pm

Re: Steve Didn't Make Christmas

Postby mints » Thu Dec 29, 2011 12:10 am

Hi Diane,
Many of us have different ways of getting through these days
Our memories and treasured possesions are so very important now
I sincereley hope you find your own way to cope with your loss.
Take care

CFF
Posts: 56
Joined: Fri Apr 22, 2011 9:38 am

Re: Steve Didn't Make Christmas

Postby CFF » Thu Dec 29, 2011 9:17 am

Hi Diane,

Wow - you are being so brave and so very kind to still post on here - it will and does help people who will have to face the inevitable.

We lost my dad 3 months ago this Boxing Day. I know how painful it has been for me so can't quite imagine what it must be like for my mum, and you, to have lost your life partner.

If it's any consolation, my mum is doing ok 3 months on. Things do get easier (and in some ways worse) but we had a good Christmas and I've just found out I'm pregnant. But we can completely empathise with some sense of relief at not having to see our loved one in pain. Whilst the 'promise' is 'no pain' from posts on here it rarely happens successfully and you also have to live with the semi conscious state and the distress and all the other things.

17th Jan seems a long time to wait - we had a 3 week period between when my dad passed and the funeral that I thought was absolutely age but when the time came I felt it would have been ok if it had have been longer. It's important you're able to have the day that you want and not feel too rushed.

Meanwhile, a lesson for you - try to take some time out from all the arrangements even if it's a short spell in an isolated steam room at your club, and try to rest, even if you can't sleep try and lie with your eyes shut for a decent period of time, and don't forget to ask for help. Some of the 'official' paperwork or contacting people can be done by others.

take care, my thoughts are with you.

xxx

PCUK Nurse Jeni
Posts: 1084
Joined: Mon Jun 14, 2010 1:30 pm

Re: Steve Didn't Make Christmas

Postby PCUK Nurse Jeni » Thu Dec 29, 2011 4:10 pm

Hi Diane,

So very sorry to hear the news about Steve. Please accept my personal condolences, as well as those of the charirty, at this sad time.

Jeni.

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Steve Didn't Make Christmas

Postby laura » Thu Dec 29, 2011 6:05 pm

hello diane,, lovely to hear from you, i had wondered how you were! pleased to know you have been able to tackle some of the many things that will arise,do what you can as and when you feel like it, coz some days you wont want to do anything, and thats fine, take care of yourself, love and hugs laura xxxxxx

deb68
Posts: 34
Joined: Sat Apr 17, 2010 4:58 pm

Re: Steve Didn't Make Christmas

Postby deb68 » Wed Jan 04, 2012 8:30 pm

Dear Diane

Sending love and strength to you and your family at this time. My daughter Gemma who died in 2010 from pancreatic cancer at only 27 years old was an outpatient at Sam Beare Hospice and I used to take her there to have her ascites drained and I have to agree with you about the fantastic care and dedication given by the staff there.

I so related to your post about suddenly having time - it is almost a surreal feeling when the caring suddenly stops as you have no structure anymore.
Look after yourself and please know that many people on this forum really understand and are here for you.

with love

Debbie.x