Living day by day

[susikus]

I thought it was about time I started a new thread, as I am definitely not 'new to this' any more! Yesterday was two months after learning Pete's diagnosis. It was a diagnosis that we knew was possible and were dreading. My daughter had looked it all up even before we knew what it was for certain.

Those two months have been the best of times and the worst of times. I was reflecting on that this weekend when we had an awful day on Saturday and a brilliant day on Sunday. And yet, nothing really changed. The awful day was because Pete has realised he will never be the man he was, never again be able to do what he wants to do (and what he wants to do most is to walk the dogs!) and the brilliant day was because we had fun and Pete seemed to have more energy than he has had for many a day/week.

Our plans for this week are ring shopping, PICC line insertion and consultant appointment on Wednesday and resume chemotherapy on Friday. What are you planning?

Thank you all for 'being there', Couldn't imagine doing all this without you now.

Sue

xxx

[rachelqt]

Hi Sue!

Your words struck a cord with me as the hardest part for my dad was also that he was not the man he was before. Although on his good months he let nothing stop him, when he had energy he done lots of nice things, like going on family walks, picking my kids up from school and even painting a few rooms in the house (his trade)!

Just over 2wks now since he has gone and it is hard to believe he is not coming home, would you believe its hard getting use to normal life again, as in no hospitals and no worries as how he was feeling/coping! Its just saddness, we feel we dealt with the shock factor a long time ago that dad was terminally ill and this has helped us be that little bit stronger i think!

Hope Pete has plenty more GOOD days infront of him, enjoy them!

Im off to work now which is a welcomed distraction at the minute!

Takecare Sue and will pop in again soon to see how your all doing!

Rachel xx

[susikus]

Rachel, lovely to hear from you, two weeks is no time at all, you are doing so well. I think you are absolutely right - knowing in advance where you are going does make it a tiny bit easier when you get there. But it is still such a hard journey to make.

Today was a good day for us - we bought a ring! I love it and wearing it will remind me always of this time and of making the best of each and every day.

I wanted to ask you all - does anyone have any experience of taking antidepressants with pc. Our GP suggested them a while back and we refused. Now we are rethinking and they are mentioned in the MacMillan pc booklet (which, by the way, is excellent) and our GP is coming to visit us tomorrow afternoon. Any thoughts would be much appreciated.

love to you all

Sue

xxx

[DRAD3]

Hi all - Been a bad week for me, don't know why - feel very down and tearful. Wedding anniversary coming up, first signs that Christmas is drawing near perhaps? I'm off work this week for half term and have packed it full of activities to avoid too much free time (can't allow that as that will allow me to think too much!) Gary and I were "lucky" as we had a precious 15 months of coming to terms with the diagnosis so I am left with just a deep, deep sadness, rather than any shock to deal with. During that 15 months it was a rollercoaster of, as you said Sue, the best and worst of times.

I'm taking my daughter to Harry Potter world tomorrow - I will be looking out for some magic potions, or that magic wand I am so desperate to find for everyone - oh I wish!

I hope you enjoy the ring shopping, Sue. The one Gary bought me in the same circumstances is the most precious thing I own.

Love to everyone.

Deb

x

[DRAD3]

Hi Sue - we must have posted at the same time! So glad you found your ring. Good day. xx

With regards to anti-depressants, Gary had diazepan/lorazapan (not sure of spelling) as he used to get very anxious around chemo days (he hated needles) and they did seem to give him a lift and really helped. I really noticed how chilled he appeared when he'd had one and no negative side effects. Hope this helps.

Deb

x

[laura]

hello sue, bri has been on venlafaxine for over 2yrs, he was on something else before diagnosis, he had a breakdown whilst working, at home office, he also of course has MCD [mild cognitive disorder] so bit difficult to separate the problems, what causes what!

but certainly they had NO side effects , during the 19months of chemo, or since, i believe anything that helps someone feel,cope better, has got to be good, i have been given, citolaprim since bri was diagnosed, i feel sure it has helped me cope, i seldom shed a tear, and feel fairly steady, even with my friend wendy really ill, im able to carry on, so give it a go, lots of love and good wishes lauraxxx

deb, sorry your experiencing a down time, not surprising love, is it ? youve done so well, and on here such a lot, supporting others, no advice sorry, have a big cyber hug and take care of you, lots of love laura xxxx

rachel, lovely to hear from you, glad your coping a little, such a difficult time, thinking of you. lots of love, take care laura xx

[susikus]

That's really helpful to hear your experiences with antidepressants, thank you Deb and Laura. I am sorry to hear you're having a bad week Deb, the rollercoaster goes on and on...

We had such a bad night - Pete was in a LOT of pain and the worst of it is that we have no idea why so it gives no clues as to how to manage it. Repeated doses of oramorph seemed to do absolutely nothing. Glad our GP is coming today. We've had virtually no sleep.

Tired and dispirited

Sue

xxx

[yorkypaul]

SHi Sue. I was very sorry to read that Pete had a bad night of pain and that you both had so little sleep. I can totally empathise with you. For us, Saturday night was awful (pain and vomiting again) and yet Sunday night was great - no pain or sickness and a good night's sleep. What is it all about? It's the old rollercoaster again and very tiring. I do hope the GP is able to give you some help today. I will be thinking of you both.

Hugs,

Paul

[susikus]

The GP has come and we now have different painkillers to add to the morphine based ones, antidepressants and stomach protectors. Our bathroom is beginning to resemble a pharmacy! There was no reason that any of us could discern, just one of those things...

Pete has stayed in bed all day and has had some sleep. He doesn't want to eat at all. I have, depressingly, been filling in life insurance forms ready for tomorrow when we see the consultant.

I have worn my ring all day - I never want to take it off! Our GP loved it and suggested I have a gold chain to wear it on whenever I cannot have it on my finger - very wise.

I hope Andrea is having a good day today Paul. When will you know more about chemo?

Love to all

Sue

xxx

[DRAD3]

Hi Sue

So glad to hear the GP has prescribed some more meds to help Pete. How did it go today with the PICC line insertion and seeing the consultant? Is all OK for chemo on Friday?

Deb

x

[susikus]

It is a long story, which I will tell you later, but for now I need to tell you that Pete died at midnight, and I have just come home two and a half hours later. It all happened very quickly but the ward, the doctors and nurses were superb.

RIP Pete, most loved of men.

Sue

[yorkypaul]

Oh Sue, I am so sorry. I looked yesterday and was afraid I had not seen a recent post and wondered if all was ok. You are such a beacon on this site, always there to help and offer good advice. It was obvious to everyone how much you love Pete. You have been a pillar of strength for him. You can expect people to offer you the comfort that he is now at peace and is no longer suffering. It won't help at first, but, in time, you will know it to be the case. Look after yourself, dear Sue, and continue to use your forum family for comfort and support.

I send you my love and prayers. I also pray for the rest of us who are treading the same path, but a few paces behind you. PLEASE stay in touch when you can.

Massive hugs,

Paul xx

[charney]

I have been reading your posts and I am so sorry to hear about pete

my thoughts are with you,

cheryl x

[DRAD3]

Oh my dearest Sue - I am shocked and so saddened to hear that Pete has died. I cannot begin to think how you are feeling today as this seems to have come so quickly and I am sure you are in shock yourself. Despite knowing what is to come, one cannot prepare oneself for it at all. My heart is aching for you and I so wish I could give you a hug. Remember we are here for you whenever you need us - I feel we have walked a similar path you and I and our men were similar too. You shared some lovely times and you obviously had a wonderful relationship - I know your memories and the knowledge that you shared a special bond will give you great comfort. RIP Pete and love to you Sue.

Deb

x

[rachelqt]

Dear Sue,

Im so sorry and shocked to read your news about Pete. This is truly a dreadful disease and it makes me angry that it has taken another one of our loved ones.

Just take each minute, hour and day as it comes.

You are in my thoughts and prayers

Rachel x

[laura]

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

[susikus]

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

Edited November 2, 2012 by susikus

[yorkypaul]

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]

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]

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]

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]

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]

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]

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]

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