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sheena
Posts: 173
Joined: Sat Jun 13, 2015 7:42 pm

Re: Trevor's Story

Postby sheena » Sun Jul 12, 2015 5:37 pm

Yes please Sandra would love you to give me e mail

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 5:37 am

Re: Trevor's Story

Postby kittycat » Mon Jul 20, 2015 12:58 am

Hi Sandra, just wondered how you were coping at the moment after losing your Trevor. I can't imagine what it must be like and fear that I too will be in your position at some stage. You offer such support to others who are going through this terrible ordeal and I just wanted to let you know that my thoughts are with you.

Sue

sandraW
Posts: 1010
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Mon Jul 20, 2015 2:31 pm

Hi Sue,
On the whole I am doing ok, silly little things upset me, but I know Trevor would just want me to get on with life.
Perhaps its too early to really say how well I am doing, but I was just so glad he only suffered for a very short time, I know how incredibly lucky we were with this truly wicked disease.
As strange as this sounds I would rather he died when he did, than struggle on as he would not have coped well with the pain and indignity. He really did so incredibly well, but when the end came it was sudden, and for him that was the best thing to have happened.
I still miss him dreadfully, but try to take comfort from the fact that he stayed so well for so long, unfortunately not every one is as lucky as us.
Try not to worry too much about how you will cope, just try to live for the moment, thank you for your kind thoughts and wishes, they are truly appreciated. love sandrax xx

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 6:57 pm

Re: Trevor's Story

Postby allyc1 » Tue Jul 21, 2015 7:23 am

Hi Sandra
So sorry about your news, its absolutely devastating, but at least he isnt suffering anymore. You have been so helpful to people with your story, and i know at some point i will probably go through the same thing which terrifies me. Take care Alison x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 5:37 am

Re: Trevor's Story

Postby kittycat » Tue Jul 21, 2015 8:24 am

Hi Sandra, I can understand what you say about you would rather he died than linger on and I think that's the best we can all hope for - isn't it a dreadful thought. I know it's early days but you are such a support to the rest of us who are trying to deal with this awful disease and I do think of what you must be going through but I'm sure, like me, you have such wonderful memories and no one can take them away.

Ally, I agree with you, I too will go through the same thing and I try not to think about it but it does rear it's ugly head sometimes and I too am terrified!!

Sue

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Trevor's Story

Postby jay » Wed Jul 22, 2015 6:03 am

Ah Sandra,Glad you are doing ok, totally understand about not wanting them to suffer, your words gave me comfort on Monday night as it would have been our 24 th wedding anniversary, I realised I was being selfish wanting Jem here at all costs when I now realise it was better for him to go quickly,Its 11 months since he died and I still wake up 6 times a night wondering why the bed is empty,
Hugs Sandra,
love Jayne
x

sandraW
Posts: 1010
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Sat Oct 03, 2015 12:04 pm

Hi All,
Just thought I would post to let you know about my contact with PALS.
As some of you know Trevor became jaundiced on 15th March this year and had to wait for 2 weeks due to the machine not working and staff shortages, before they attempted to put in a drain/stent under a local anaesthetic. They couldn't do the procedure as Trevor was in so much pain, and to be honest he was upset as they were quite brusque and short with him, implying he was being a baby, and they felt that they weren't causing him pain. We then spent the next two weeks being told he was being admitted, then he wasn't then the next day he was to go for a scan and so on, until on the 14th April they did the procedure to fit a drain under a general anaesthetic. He had had 2 lots of antibiotics for 7 days the first time they had attempted to put it in, but when I asked if he was on antibiotics this time, they said he had had some intravenously before the procedure but his liver wouldn't cope with any more. He died 9 days later.
My question for PALS was WHY did we have to wait 29 days for the procedure when the nurses (outpatients/Macmillan/Health centre) were saying he should have had it almost immediately.
The case was taken by the Matron of our specialist centre and after a meeting with our Oncologist he rang me back on Wednesday to say that firstly the oncologist apologised as he was away on holiday when Trevor was admitted for the last time and he felt we had been left somewhat in the dark, and had he been around he would have talked things through with us. In retrospect the drain should probably not have been fitted at that late stage, as the tumour had obviously grown ( which of course it had, it had had 4 more weeks to grow) and it obviously hastened Trevor's death, (they didn't say that bit} The reason that Trevor had to wait for the 4 weeks was basically a lack of resources, the right person to do the job,and the availability of the machine used to do it. So there we are!!!! The answer I got was no more or less than the answer I expected.
I keep telling myself that probably for Trevor it was the best outcome, he had managed so well to be independent, apart from the 2 weeks after his surgery in September 2013, he had managed to do everything for himself, it was only the last 2 days before he was admitted that I had to help him with socks undies trousers and shoes when dressing. When he was admitted he had to use a wheelchair to get to the ward, and on the Monday before he died he made them get him out of bed so he could use the toilet, and for the first time I had to help him clean himself, no problem for me but a major upset for him.
While we had amazing care at the specialist centre, and I am a realist, I knew the end was near, they did say a matter of weeks when he was admitted not the 10 days he got, and any extra time is such a blessing, but then what would the quality of his life have been. Unfortunately that is something we will never know, but I still feel that after his brave fight he was cheated by the system.
Sorry for such a long post, think I just needed to get it out,
sending love to you all sandrax

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Trevor's Story

Postby Didge » Sat Oct 03, 2015 4:35 pm

Sandra, I don't think lack of resources is any excuse. When something is urgent you should not have to wait. Problem is. Not everyone agrees on the urgency. However we are not talking about someone losing their life because of a delay, only shortening it. As you say, Trevor did so well until nearly the end and although you would have liked to have him for longer it may have been very hard for him. I have never forgotten Rob saying if he could press a button and end it all he would. That was about a month before he died. They could not get his pain under control. They did suggest a stent about a week before he died but he was too weak. Maybe
if they'd suggested it earlier it would have helped but it would not have changed the outcome. I also think that the speed PC can move is underestimated. Rob was also told he had much more time left by the palliative care team and although that gave him hope I didn't believe it for one moment. They were talking months when he had only 3 weeks left. I do hope you can take comfort from the fact that Trevor did so well until right at the end. Lots of love, Didge x

Fifi

Re: Trevor's Story

Postby Fifi » Sun Oct 04, 2015 11:53 am

Oh Sandra,

It is all so unfair. Trevor was treated so unfairly at times. I don't know if them admitted it makes you feel better or more angry? Times have changed so much, the level of care just isn't always there anymore. People are just numbers to some of them. Overworked? Not enough money? Maybe, but they chose this profession, and to do a caring job, you must have such a huge level of care in your heart. It cannot be just a job. It makes me so sick, I can go on about it all day.
Sadly though, I do agree, that it was probably the best outcome for Trevor. It was like with Dad, if he hadn't had the stroke, he would have gone home knowing he only had a few week. His mental state would have been devastating, he would have lost more weight, and be bed bound. He wouldn't have wanted that. It is easy for me to write, it is another making my heart believe that.
If you look out your back window, there Trevor will be, sat in his shed. You gave us some lovely posts about Trevor in his shed. I don't think they ever truly leave us Sandra. I hope they don't.

Take care.

Leila xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 7:22 pm

Re: Trevor's Story

Postby Sueoliver » Wed Oct 07, 2015 10:51 am

Hi Sandra,
I hope you are ok. Please take comfort from the fact that Trevor did so well until the very end. His quality of life was important to him. He will always be with you Sandra.
My Mum is still fairly stable although the fluid on her stomach is getting bigger! I am keeping an eye on it as the oncologist doesn't want to see her until the middle of November! She is managing to go out once a week to a restaurant she just loves her food.
Take care Sandra thinking of you.
Love Sue xxx

sandraW
Posts: 1010
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Fri Jan 01, 2016 10:19 am

Just to let you know, I am thinking of everyone on here, the ones of us who have lost our loved ones this year, the ones still supporting their loved ones and the ones still battling this truly horrendous disease. I found last night particularly hard.
I wish you everything you wish for, sending strength peace and love to you all, on this start to a New Year and I hope it brings some joy to you all, and thank you for all the support you have given me, love sandrax xxx
PS Special New Year wishes to our wonderful nurses and very grateful thanks for all the help and support you provide to us all. xxx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Trevor's Story

Postby Didge » Fri Jan 01, 2016 10:25 am

Thank you, Sandra. I'd echo that. And to all those 'silent' members who never post, thinking of you all and hope you get to enjoy every moment you can in 2016 whether as sufferers or loved ones and may there be new treatments coming soon! Didge x

Fifi

Re: Trevor's Story

Postby Fifi » Fri Jan 01, 2016 12:55 pm

Hi Sandra,

Thank you for your lovely post here. I too found yesterday very hard, and I cried the new year in. I think it is because last year Trevor and Dad were alive and we saw them, spoke to them, hugged them. Now it's a new year, they have never been here in this year. Although last year was the toughest year ever, we still had our loved ones in it.

Leila xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Trevor's Story

Postby Ruthus » Fri Jan 01, 2016 1:51 pm

Thank you Sandra. You are always very supportive on this forum. Thinking of you at a difficult time of year. I am hoping 2016 will be easier for you xx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 7:42 pm

Re: Trevor's Story

Postby sheena » Sat Jan 02, 2016 8:49 pm

Lovely words Sandra you just made me cry .I am dreading this awful path of sorrow,I was happy Steve made it through Xmas and new year ,but each day I see a difference and in him.sending you huge hugs and thank you for supporting me x