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

Re: Living day by day

Postby laura » Thu Oct 25, 2012 11:30 pm

dear sue, i am so very very sorry, to read that pete lost his battle, in spite of the total support and love that you gave him, you must be so exhausted ! i am lost for words, but am sending you lots of love and strength, stay in touch when you are up to it.
love laura xxxxxx :cry:

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Living day by day

Postby susikus » Fri Oct 26, 2012 8:28 am

Yesterday was such a busy day as my younger daughter was moving into her first house and it couldn't be any other day - we all helped her and it gave us all something very positive to do. I wanted to let you know something of what happened this week:

Firstly, I cannot tell you how pleased I am with the ward and the staff - they were wonderful - a specialist, purpose built oncology ward for patients who might have infections with 10 single rooms, all with en suite toilets and shower rooms, lots of space and light, quite quiet, a relatives room with tv, dvds, wii, exercise bike, aromatherapy sticks burning. And lovely, lovely staff. In the afternoon the nurse looking after Pete was an old friend who has known Pete since before he met me!

Pete was admitted at 2am on Wednesday morning after vomiting a number of times at home, for no apparent reason. When he went in he was too unwell to walk the long corridors so I got him a chair. But once established in his room he was still able to do stuff himself. We agreed I would go home, see to the dogs, organise the dog walker, get a couple of hours sleep and come back. I got back about 9.30am. He still seemed ok. He wanted to get up and sit in the chair so did, where he went very pale and breathless and I quickly said get back in bed and we got him in and I went and got a nurse, who had a dr with her, so he came too. Then we had lots of people. They did lots of things - he was being actively treated for sure. Then the same dr (Tom) asked me how I was feeling about resuscitating Pete and what did I want, what did I feel Pete would want and we agreed we would do all the obvious things but no CPR if he went, no ITU and no ventilation.

The consultant came out of clinic for us and reviewed what everyone was doing. I said to her I was unsure about calling in family and she was very positive about it - go on call them, if they come and he recovers no-one will mind, and in any case he is very sick, his blood results were very odd. So I went in the office and called everyone.

Then Pete rallied, he had IV fluids, antibiotics, x-rays, oxygen. And he was in bed, and chatting to me, and I thought all these people are going to come and he's going to wonder why, so I explained he'd had everyone worried and that the doctors had suggested I call the family. I then told him about the resuscitation conversation and he grasped my hand and said 'Thank God! Thank you, I have been thinking about that for over a week now and thinking who do I talk to and what do I tell them and now you've done it for me, thank you so much.'

Our younger daughter arrived with her boyfriend, then Pete's cousin who stayed a while, went away and came back later, Pete's brother and wife, then mid afternoon, their son, his wife and 4 week old baby and Pete cuddled the baby in bed and talked away to him. And he seemed ok-ish, tho' clearly quite unwell still.

And it felt for a while like he was improving, though if truth be known this was the oxygen and the extra lots of fluids. And then between 5 and 6pm he was weaker again and the consultant came back and went to hurry up getting a ct scan, when she returned he was clearly unwell and we all agreed no more, no more.

And then it became very calm and loving and lovely and there was a time when Pete couldn't talk but he could clearly hear us and understood what we were saying and our older daughter and her husband arrived, and we cried and smiled and laughed. And then he became unresponsive and we all carried on talking to him and each other, and his body gradually shut down and he died just before midnight.

His best friend and wife were en route from Dover and didn't arrive in time, so we waited for them and then they came and we all stayed with Pete till about 2.30am. The ward were happy - we could all stay as long as we liked.

So, all in all, it wasn't what I expected, it is/was a shock, but it couldn't have been better handled and Pete has had his last wish fulfilled - to die quickly without needing lots of care so I am pleased.

Thank you all for your company on this extraordinary journey and for being the most wonderful friends

love Sue
Last edited by susikus on Fri Nov 02, 2012 7:16 am, edited 1 time in total.

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Living day by day

Postby yorkypaul » Fri Oct 26, 2012 8:54 am

Dear Sue. I was so moved reading your post. How brave of you to give such detail of your night at the hospital with Pete and your family. For those of us a few steps behind you on this terrible road, it was, believe it or not, a help to see that you were so able to cope with the inevitable - that we often try to push to the back of our mind. Your love for Pete was so obvious, deep and unconditional to all whe read your posts.
I do hope that you will be able to continue to visit the site. As I said previously, your posts have been a beacon of light to other members of your forum family who, I am sure, will in turn continue to offer their love and support to you.
I hope that the fight to raise awareness of PC and the need for early diagnosis and further research will continue. My Dr friend says that things have changed little in the 25 years that he has been in the medical profession - unlike some other cancers where real progress has been made.
Sue, you and Pete are in my thoughts and prayers. I feel so sad for your loss, but so glad for Pete that he had your tremendous love and support. Thank you soooo much for the support you have offered me during our struggle which, for now, continues.
Hugs,
Paul xx

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: Living day by day

Postby PCUK Nurse Dianne » Fri Oct 26, 2012 5:54 pm

Dear Sue,

I am so sorry to hear that Pete has lost his battle with this disease. May I pass on my sincere condolences and also those of everyone at PCUK, we are all thinking of you at this sad time. I hope over the weeks ahead that you find time to remember the great times that you and Pete had together.

May I also say you have given a lot of love,support and inspiration to others at this most difficult time of your life and this has bought a lot of comfort to others. Thank you for that.

Thinking of you,

Dianne

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Living day by day

Postby DRAD3 » Sat Oct 27, 2012 12:39 am

Sue - you and Pete have been amazing and allowing us to walk this journey with you will help others who are a few steps behind. As Dianne said, to have helped and supported others at a time when you needed it yourself has been inspiring and selfless. I feel so very sad for you but also very proud of you both. I know that your courage will get you through the coming weeks and months and I do hope that you will consider us to be your friends during these times too. Take care, Sue and know that you are being thought of and our love is with you.
Deb
x

Hope56
Posts: 5
Joined: Wed Jun 27, 2012 7:28 pm

Re: Living day by day

Postby Hope56 » Sat Oct 27, 2012 10:59 am

I am so very sorry for your loss. I too have followed your words and what stands out for me is that you and Pete have shown such dignity throughout this horrendous journey. I feel that you are very special people and hope that your dear family hold you close and that happy memories will help you through the weeks and months ahead. Once again please accept my condolences and a big thank you from the bottom of my heart for sharing your experience.

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Living day by day

Postby Jool2504 » Sat Oct 27, 2012 12:31 pm

Sue,

I was shocked to read your post, I am thinking of you and your family at this awful time. Your support I have found invaluable and that of others on the forum. We are all here for you, it may take a day or two for me to reply but I do try and get onto the forum most days.

Enjoy every good memory,

Massive hugs

Jools & Bill.

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Living day by day

Postby susikus » Sun Oct 28, 2012 6:25 am

Thank you all for your kind wishes. I have completely forgotten the hour change and so find myself with an extra hour. It has been very busy in this household and I have found little time to visit the website. So I am now giving myself the gift of an hour with all of you.

We are surrounded by love. Cards, flowers, messages. Lovely, lovely messages. Pete would have been touched (and a bit embarassed) to know how people felt about him. We are in the very early stages of planning the funeral but it will be filled with music and singing, with performances by the choir, the group, the folk club and the amateur dramatic society that Pete was a part of as well as from our own daughters (who luckily have inherited their dad's wonderful singing voice and not mine - I am tone deaf!) and musician friends.

I intend to continue to visit this site and offer whatever support I can to others following. As time goes by I won't have so much time as I will return to work and, eventually, to the charity that I volunteer for in a very time consuming role. But for now I am around and will continue to visit the site every day.

My love and lots of hugs to you all
Sue
xxx

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Living day by day

Postby Jool2504 » Sun Oct 28, 2012 10:31 am

Morning Sue,

I've had the hour change problems to, but as Bill was up a few times in the night it made no difference until 07.30 when I was in the bathroom colouring my hair!! Bill was up but snoozing on the sofa.

You & your children are an inspiration to us all, the funeral plans sound lovely, I believe a funeral should be a celebration of someone life, not like the old days when it was so dark & sad, well thats what I recall from when I was younger. Bill wants the same as his first wife had, I may change a couple of things to make it a little lighter, I have no idea what his wifes ceremony was like.

I'm pleased your staying in touch, you have really helped me, with us being at a similar stage when I was a newbee on the forum.

Hope you manage to get some rest.

Thinking of you and yours.

Jools & Bill

Ella50
Posts: 57
Joined: Sat Jun 02, 2012 3:14 pm

Re: Living day by day

Postby Ella50 » Sun Oct 28, 2012 12:18 pm

So sorry to read about your loss.. I have read your story which has moved me to tears.

Another brave loved one taken too soon.. my thoughts are with you and your family..

Take care, Ella x

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Living day by day

Postby DRAD3 » Sun Oct 28, 2012 6:08 pm

Hi Sue - lovely to hear from you and agree with Jools that funerals definitely should be about celebrating life and the person. Gary's funeral was a lovely day where friends and family I hadn't seen for years came and talked about old times and how generally wonderful he was! (I was so, so proud to be his wife that day). Like Pete, he would have been very embarrassed, but secretly pleased, and I did feel he was by my side all day and sharing it all with me. I hope you have a good day, surreal as that seems, but if you plan it well and do all that you and Pete had wished, it all helps afterwards (no regrets and all that). Take care.
lots of love
Deb
x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Living day by day

Postby susikus » Fri Nov 02, 2012 7:28 am

It seems hard to believe Pete has been gone over a week. Tonight will be my first night alone in the house - with my lovely dogs for company - and I'm quite looking forward to it. Funeral plans are all coming along nicely - Pete would have been amazed at how many people are coming - it will be standing room only in the church. I have written my eulogy and am determined to be able to do it, but have written it all out just in case someone else needs to take over. Similarly my girls are going to sing ("For Good" from the musical Wicked) and we are going on Monday to a friend's recording studio to record them just in case they are not able to perform on the day.

I have told work I am coming back the monday after the funeral - they are giving me an admin week and then I will start seeing patients the following week, but in reduced clinics. I am so very lucky with my work - not many employers would give you unlimited compassionate leave and I've been off for three months.

Love to you all on this rollercoaster ride - and don't forget to contact your MP - I was a little harsh with mine - told him I needed his help because I had a funeral to organise! Got his attention though.
Sue, xxx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Living day by day

Postby DRAD3 » Fri Nov 02, 2012 5:04 pm

Hi Sue - as always, you are doing amazingly well. There is lots to do isn't there? Being busy is a good thing I think. I do hope that you find the strength to speak at Pete's funeral. I did. It was, quite frankly, one of the hardest things I have done but no-one else could have said what needed to be said and I wanted to make sure everyone knew how wonderful and courageous and good Gary was. It was very therapeutic writing the eulogy - I cried many tears during that time but that was good and I did manage to hold it together on the day (just). My trick was not to look up, just concentrate on what I had written. If I had caught anyone's eyes, I would have crumpled. I did feel like I was going to faint but just kept breathing deeply and held on to the pulpit. Take a little water with you too as I found my mouth suddenly became the driest I had ever experienced it! I am sure you will be absolutely fine as you are a strong person, we know that. Hope your girls also manage to sing and the CD idea is great - something to keep forever.
Keep going, Sue. You are an inspiration.
love
Deb
x

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Living day by day

Postby Jool2504 » Sat Nov 03, 2012 9:55 pm

Hi Sue,

Pete would be so proud of you and the children, your all doing so well.

Stay Brave.

J&B

Lulu
Posts: 30
Joined: Fri Oct 19, 2012 6:05 pm

Re: Living day by day

Postby Lulu » Sun Nov 04, 2012 1:26 pm

Sue,
Jools has said it all, Pete would be so proud of you and the children. I am proud of you myself, you have an inner strength and it will get you through. Stay strong and know your cyber family here will all be with you xx