Trevor's Story

[Sueoliver]

Sandra ,

That sounded brilliant! It made me smile and also brought tears to my eyes. I would love you to still post on here please don't leave us!

Take care of yourself and you should be proud to have arranged such a lovely send off.

Love Sue x

[nikkis]

Well done Sandra that sounded absolutely amazing. A fitting tribute for a very special man. I spoke at Paul's funeral, it felt the least I could do after all he had been through, and it has also helped me, as when I worry that I can't do things, I think if I can do that, I am strong enough to do anything I need to!

Lots of love,

Nikki

[PCUK Nurse Dianne]

Dear Sandra,

What an amazing day, Trevor would have been so proud. I laughed, and of course I would not be human if I did not admit it all brought tears to my eyes. It sounds so fabulous, and most importantly that this is how Trevor would have wanted it to be.

As others have said Sandra, you have been an inspiration and very supportive of your other 'forum family' members, so i know they will still be keen to hear from you when you are up to it. Thank you for sharing this special memory of Trevor.

Take care and our thoughts are with you in these days ahead.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

[Slewis7313]

Sandra, it sounds like the perfect 'send off', if somewhat unusual. It also sounds like it was well choreographed with appropriate props. The fact that words were said by family members of all ages sounds like a nice touch. He was obviously much loved and must have had a great sense of humour. I am really saddened by your loss but glad that you were able to arrange what must have been an amazing celebration of his life.

Please take care.

Steve

X

[Guest]

Sandra,

I think it takes a lot, and says a lot, about what a good relationship you and trevor had, to ' brighten' up a funeral. Something I could never have done. I nearly didn't have a wake, for fear of laughter! I think you were so brave to stand up and read your letter for Trevor. From the little I know, I know he would have been proud of his entire family.

I hope you stick around on here Sandra, I would miss you. And thank you, for your beautiful flower. As I have said on previous posts and to yourself, such a beautiful idea, and I treasure it, thank you.

Leila xx

[Didge]

Sandra, the funeral sounded great, if you know what I mean! I am thinking of you in the times to come, it's often harder when everything is 'supposed' to return to 'normal', I know there will be times when it is easier and times when it is not. I do hope you come back to the forum from time to time. There are several people whose journeys started around the same time as ours and it is hard to say goodbye, but inevitably people need to gradually build their lives again - a life without the ever present threat of PC. Sending you lots of love, Didge xx

[Janiebobs]

Sorry Sandra,

I don't get on the site as much now. I was sorry to read the very sad news about Trevor.

I am glad his funeral went well. You were all very brave being able to read at his funeral. I was in bits at my dad's funeral though my teenage daughter read a poem. We had a celebrant for my dad's funeral also who made sure the day was very personal and the funeral director very kind.

Look after yourself over the coming weeks

Jane x

[RLF]

Hi Sandra. Glad the funeral went well and you managed to approach it with the humour that Trevor would have wanted. I'm very impressed you got through your speach, I know I wouldn't be able to!

I hope you're coping ok now, I can imagine it's odd to not have to be "fighting" all the time now and I for one definitely hope you still come on.

Rob

X

[sandraW]

Thank you all for your lovely replies.

I went to the oncology unit yesterday to say some very well deserved Thankyous I took some cards and started with the girls in the cafe, went onto pharmacy, then outpatients, treatment room, and finally the health centre, went in bright and breezy, came out a blubbering wreck, but a very happy blubbering wreck.

The main comment from every one was how every time they saw Trevor, he made them smile, and that he was a breath of fresh air, and that they missed him too.

So even though I came out upset, I was also very proud, it's probably good for me to shed some tears, as really they were happy tears, strange as that seems, love to all sandrax

[Sueoliver]

Hi Sandra that was a lovely thing to do I can imagine how you would have happy and sad feelings all at the same time! I hope you are ok and have some good support around you.

Sue xxx

[SusannaUK]

Dear Sandra,

I am so sorry to read that Trevor has passed away. I have tears in my eyes now.

I haven't been on the forum for a long time. I am glad that the funeral went well. And what a special funeral.

You and Trevor were always so brave a true inspiration to everyone here. You must be so proud of him and yourself!

It was such a nice thing that you went to the oncologist unit to say thank you to everyone. I also still keep in touch with my husband's oncologist and the hospice too. Actually I will help to a counsellor in the hospice to run a group for people who lost their loved ones.

Well done Sandra for all the things you've done for Trevor!

Please keep posting.

Lots of love,

Susanna xxx

[LMD]

Dear Sandra

So very sorry for your loss.

What a lovely, unique, send off you gave Trevor!

Have not been on the forum for a while otherwise I would have written sooner. Take care and sending you love & strength for the coming months..xxx

[sheena]

Hi Sandra Ty to taking the time to reply to me .I will definitely take your advice and go one day at a time.Do you think I can keep in touch with you ,I feel even though you have not long lost Trevor,that I would be able to relate with you many thanks sheenax

[sandraW]

Hi Sheena,

I am happy for you to have my email address if you would like to keep in touch that way, just let me know sandrax xx

[kittycat]

He Sandra, I can't believe it's so many weeks since you lost Trevor and just think you're so brave to keep on supporting those of us who are still on this dreadful journey. I can't imagine how you must be feeling, but thank you for taking the trouble to care.

Sue

[sheena]

Yes please Sandra would love you to give me e mail

[kittycat]

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]

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]

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]

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]

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]

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]

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

[Guest]

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]

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