CHEMOTHERAPY

[Nardobd]

Hi Gill and Ellie,

Gill, I hope that the meeting on Monday will help with the confusion you feel. Sometimes it's really difficult to take in a lot of information in such traumatic circumstances. The main thing is "ask, ask, ask"! When my hubby was diagnosed, I made a doctor repeat an explaination three times to ensure that I fully understood what he meant. Remember there's no such thing as a stupid question! Of course the timespan will be important to you and it will also have a bearing on what decisions you make as a family. Don't be afraid to take the time you need to decide either - the most important thing is that you make the right decision in your family's circumstances. We're thinking of you all.

Ellie, I was so sorry to read that your husband's tumour has grown. 1 in 20 still equates to 5% and I know that you believe, as I do, that someone has to beat the odds! You know that I'm thinking of you both.

Love Nicki xx

[Guest]

Hi Gill,

Was just wondering how the meeting went yesterday and if you got more clarity on what will happen next for your dad?

Please let us know, we are thinking about you!

Just a follow up from Nicki's excellent advise - not sure if you've had chance to get in touch with Bridges yet? But my mom was put in touch with them through her local Macmillan nurse and they do offer some great services. For example they now arrange for my mom (and my sister who goes with her every time) to be picked up and taken to the hospital for her chemo sessions! This means that my dad doesn't need to lose time from work to take her to and from her the hospital, we all know how difficult it is juggling work, mortgages and bills with caring for someone! They are also arranging for someone to come round and see my mom to talk about other ways they could help her. Hope they are also able to help your dad!

Kind Regards

Lisa xx

[gillvb1]

Hi Lisa, Ellie and Nicki,

Monday's meeting went ok but things haven't gone according to plan. On Monday we (the family) felt that it was feasible for Dad to come home and we intended making his time with us comfortable and enjoyable for him. However, today he has taken a turn for the worse and there is nothing more the hospital can do for him. He is now very ill and is suffering badly with jaundice. He is sleeping a lot and is incoherent. I don't think he can see us but he's comfortable, rested and content. We feel that Monday's meeting was aimed at closure for the family and not in the interest of my Dad. We've come to the regrettable decision not to bring him home which we are so upset about but the thought of him going through another trauma is too much to bear. We don't think he's aware of his surroundings but we do know that he is content and at peace. I asked how long we had left with him and was told that he wouldn't be with us by this time next week. We feel that we only have a day or two left with him. I wish he could have left us when he was in a coma instead of enduring all that he has in the last 6 weeks. We've been told that the chemotherapy did not do anything to help him and that because pancreatic cancer is so aggresive it has quickly spread to his bile duct. One saving grace is that over the 6 months of chemotherapy, my Dad had a good time and did not have any side effects so that's something but we really felt he had so much more time with us that this has come as a terrible shock and we feel we have failed him in not bringing him home. It's off my chest now and I'm in floods! Love, Gill xxx

[Ellie]

Dear Gill

I am so terribly upset to hear about your dad. It seems truly awful that he was doing so well for so long, and then it comes to this.

You must be feeling so many emotions and nothing I say will help, but I hope you find comfort in knowing that your dad did have those 6 months when he was able to enjoy being with his family, without suffering the side effects of chemo, like so many others do. At least you will have made him happy during that time. Another blessing is that he is not suffering now.

All I can say is that I hope the hospital keep him comfortable and pain free. It is so very, very sad that it had to end this way, but you have done everything you possibly can for him. I hope you find the strength to see this through and please know that I will be thinking of you.

Love

Ellie

xx

[Nardobd]

Oh Gill, I'm so very sorry to hear about your Dad's sudden deteroriation. I empathise with the difficulty of coming to a decision not to bring him home. The solace must be that you are all being completely unselfish and doing what is best for your Dad under the circumstances. You haven't 'failed' him at all. Your reluctance to put him through more trauma is a testament to your love and concern for him!

I know you think he can't see you but I wouldn't be so sure - I am convinced that he will know that you are there, loving him. Many doctors and nurses have said to me in the past that desperately ill people can often hear their loved ones speaking to them and sense the compassion and love surrounding them. It's clear from your messages that your Dad couldn't wish for a more loving family and perhaps that's the source of his contentment.

Your Dad did very well on chemotherapy and I'm sure that he treasured every minute of those six months with the support of you all. After having to fight so hard over the last six weeks, at least he is no longer in pain and suffering. That thought will give you the strength to come through this and we're all thinking of you and your family.

Love

Nicki xx

[pauline]

Hi Gill ,

I am so sorry to hear about your dad. My thoughts are with you i do know what you are going through it's been 3 weeks since we have been in your situation' and the one thing that has kept me going is knowing he is finally at peace.

sending all my love and thoughts to you

take care Gill and try to get plenty of rest

all my love

Pauline XX

[gillvb1]

Pauline, Nicki and Ellie,

Thank you for your messages of support. I have been reading all your past posts and feel guilty that I have been harping on about myself when you are all going through so much too. Pauline, I am so very sorry to hear about the loss of your Dad, I don't know what to say to you, it is such a massive blow after everything you've been through.

Ellie and Nicki, you both have been so generous in your advice and support to me and I sincerely thank you for that and hope that you can stay strong.

I had already done my own research and have been realistic in my expectations but even then, one can never prepare for the actual events that we have and are going through.

My Dad was able to open his Father's Day cards on Sunday and he really enjoyed the family all getting together for him. Each day after that has seen him deteriorate. The hospital staff have removed all his monitors, ie blood pressure, heart rate etc, and he is just on a feeding tube and is receiving air to assist with his breathing. My Dad has fluid on his lungs and renal failure but is not sedated. Today he is in a very bad way in that his jaundice is a lot worse and he is sleeping most of the time. He turned his head and looked at me today and I know he knew we were there with him. My Dad is a shadow of himself but every now and then you can see a little of the real him. My Dad was suffering from itching which is all part of the obstructive jaundice but we got the staff to administer Piriton and he shows no sign of discomfort now. My Dad is not in pain and looks comfortable and at times content but he has lost so much weight.

I think that one of the most painful things I will face is having to tell my 6 year old daughter that her adorable Grandad has gone. They were so close and it breaks my heart to think that they will never see each other again. My Dad does not look like my Dad any more and I have no intention of my daughter seeing him like this so I shall have to choose my words carefully when the time comes. My daughter knows most of what is going on but thinks that her Grandad is staying in hospital forever (her interpretation of the situation). I don't have the heart to tell her the truth just now and will wait until the time comes. Sorry to go on but my partner, who is a fabulous person, is not a good listener or talker and I have just written what I feel. Love, Gill xxx

[chinup]

Dear Gill

Just signed in and I am so very sorry to hear about your brave dad. Please don't think you have failed him, your sheer determination and dedication to get him the right help and treatment throughout the good times and bad has been absolutely faultless. The decision to take my mum into the hospice was probably the best one we made for her and you are unquestionably doing the best for your dad now.

My mum didn't seem to be able to see us, but every now and again she focused and tried to communicate with us, she wasn't able to speak but we kept chatting and telling her everything because by the way she responded we knew she could hear us. Listening to music definitely calmed her a great deal. Once she stopped eating and drinking the main problem was keeping her mouth comfortable. The doctor was keen to sedate her which we agreed to, though it was a hard decision, but we realised that it was very important for her to have a calm end after all the trauma of the previous weeks.

Pleased be assured that you are not alone. You've been a good friend to us all and we are all here for you and thinking of you especially now.

[gillvb1]

Chinup, thank you so much for your reply to my message - I had just posted it and as you can imagine I am not doing at all well. I am so reassured by what you said and can entirely relate to what you have said. My Dad is also not taking food or fluids now and we have been cleansing his mouth. He definitely knows we are around him and I am amazed that he hasn't shown any signs of anxiety. As soon as my Dad needs it we will not hesitate to sedate him because, like you, we too want a peaceful passing.

Thank you for your stirling support - it came at precisely the time I needed it!

Love, Gill xxx

[Ellie]

Dear Gill

You are certainly not "going on". That is what this forum is for, and you know you have friends here who will listen and support you as best they can. Don't every worry about what you write. We all need to get our feelings out sometime and it helps to write things down. Everyone on here going through one stage or another of dealing with PC themselves, or watching a relative go through it.

By writing down our experiences, it could help someone else understand more about this awful illness, with either the practical or emotional aspects. I've always felt this is a very genuine site and it is easier to read just about others with PC, rather than the many other types of cancer that are dealt with by other sites.

It's a relief to know that your Dad isn't suffering and is aware of you all being there. I hope that continues for as long as it needs to.

My thoughts are with you, Gill. Keep strong and remember you've done everything you possibly can for your dear Dad.

Love

Ellie

xx

[gillvb1]

Ellie,

Thank you so much. I am so glad that we have this website on which to convey our feelings. It has been a tremendous tower of strength for me to be able to say what I feel without being judged. I don't go out much at all so this website allows me to vent, but I don't want to do that at the expense of others feelings. We are all going through a hellish time and I wish there was more hope. It seems that hospital staff give you an ounce of hope then deal out a ton of despair.

Grab every day as it comes.

Love, Gill xxxxx

[Nardobd]

Dear Gill

We are all living similar nightmares and I truly believe that no one on this site would judge or criticise other members. Having said that, even the harshest critic couldn't find fault with you or your family. Your Dad is very, very lucky to be so loved.

Ellie was right: you're not 'going on', nor are you writing at the expense of others feelings. We are, in a way, like a huge family on here, giving and taking support as needed. Don't forget, too, that the messages will remain on the forum and may help others going through the same thing in the future.

I'm so pleased that your Dad was able to enjoy Fathers Day and isn't in pain. As for your daughter, you know her best and I'm sure that you will choose just the right words for her. She will always remember her Grandad with love and affection.

Gill, we're sending you all the love and strength we can at this awful time.

Love

Nicki xx

[Guest]

Dear Gill,

I haven’t been on for a couple of days and I’m so shocked to read now how quickly your dad has deteriorated. Everyone has offered (as always) great support so all I will add is to remind you again that this is THE place for getting everything off your chest, that’s what we are here for!

I’m so glad your dad enjoyed father’s day and just remember that now everything you and your family are doing is in the best interests of your dad!

Wishing you lots of love and strength!

Lisa xx

[gillvb1]

Thank you for your messages. My Dad is in a very poorly state now but we know that he is getting very good palliative care. He is no longer taking nutriments, he is just taking water by drip so he's slipping away now. I visit my Dad every day and he is comfortable and seems happy, he's like a baby again, looking at us and giving us lovely smiles. In a way it has taken the taboo of death away from us in that he is having a peaceful and restful time. My Dad is hanging on in there but we know this is it - the final chapter and it's very hard to bear. Pain is minimal and he is given an injection for minor discomfort on an as and when basis. The most upsetting thing is the change in Dad's appearance, his is suffering from jaundice and is so very thin now. I am hoping that he continues his journey in comfort and with dignity. Love, Gill xxxx

[chinup]

Hello Gill, I just thought I would see how things were, been thinking about you today. It is good that your father is calm and peaceful, that is testament to the love that he is surrounded with. You have reminded me a lot of how my dad was with my mum throughout her illness, it is hard to put into words but it has a lot to do with devotion. Try not to be upset by the jaundice etc, those images will fade from your mind soon enough. My mum looked exactly the same and she also gave us those wonderful yet heartbreaking smiles you describe. She had no idea at all how she looked - we just kept up the cleaning and moisturising routine she had done all her life and told her she was beautiful and she was happy with that. I know things are very very hard for you now and it won't get better for some time, but I promise it will sooner than you might imagine. Just keep doing what you are doing, bye for now, XXXXX

[gillvb1]

Chinup,

Thank you so much for your message of support, it's a comfort to have someone relate to how I'm feeling, and I can relate to you too. My Dad is now on constant morphine and after a pretty restless day he is comfortable again, the hospital took his air tube away today so he is working hard to breath. His situation is so hopeless and I really worry about how he is feeling emotionally. My Dad has been so good natured throughout, so much so that I can hardly believe it. Thanks again, you have made me feel strong and able to face another day. Love, Gill xxxx

[gillvb1]

The nightmare is over - my gorgeous Dad died this afternoon after a very traumatic week for us all. Thank you for all your support - you've been an absolute tower of strength to me. I wish I could say that he died a peaceful death but I can't. He had fluid on his lungs and seemed uncomfortable although we were told that he would not have been aware of that. The decision not to take him home was definitely the right one. My Dad needed lots of medical attention and pain relief over the last 7 days. The lack of hasty treatment would have only added to the trauma of it all. I shall keep in touch with you all as I come to terms with the past 9 months and as I follow your respective journies. Lots of love and optimism to you all, Gill xxxxx

Edited June 28, 2009 by gillvb1

[Ellie]

Dear Gill

I am so terribly sorry to hear that your much-loved Dad has passed away. It is the message I didn't want to read.....

After such a brave and positive fight, it is tragic that it had to end this way. All I can say is that at least he is now at peace and will not suffer anymore. I truly hope that, when you have come to terms with this awful situation, that you will then remember all the wonderful, happy times you shared with him and that those memories will help to ease your pain and bring you some comfort.

You have my heartfelt sympathy and sincere condolences to you and your family.

Thinking of you at this deeply sad time.

Love & hugs

Ellie

xxx

[chinup]

We hardly know each other Gill but please accept my very sincere condolences. I always followed your story with hope - your dear father did so incredibly well and nothing will ever take that away. He won so many battles and as I mentioned to you before my mum and dad were genuinely pleased to hear of his continued success. Never forget what he achieved and all the nice things he was able to do even though he had this disease - add that to what I suspect was a wonderful life and I promise that you and your family will find that the horror of the last couple of months will begin to fade soon enough as you begin to count the good times.

As to you Gill, well, as I say, I don't know you but the love and devotion you have given your dad has shone through in your posts. You're obviously a good woman and I wish you peace and calm as you try to come to terms with what's happened. XXX

[Nardobd]

Dear Gill

I was so very sorry to read that your Dad has passed and you and your family have my deepest condolences.

I'm glad that after much heartache and self-doubt over the last week or so, you now know that it was the right decision not to take your Dad home. I know that was so very, very hard for you all.

Wishing you all lots of strength and tranquility.

Love

Nicki xxx

[pauline]

Dearest Gill

I am so sorry for the loss of your beloved dad,over the last 4 months since i have come on this site your posts alone give me the strength for my dad.

i'm sending you and your family my heart felt condolences at this sad time

please send all my families love to all of your family

lots of love

Pauline

[gillvb1]

A big thank you to everyone who has passed on their thoughts and condolenses after my Dad passed away on 28th June - you'll never know how much strength I have drawn from that. I have arranged his funeral for the immediate family for Monday 6 July followed by a low key celebration to reflect on his life. We're going to put ribbons in the trees and make it as lovely as we can. We've also decided not to wear black - nice bright colours to reflect my Dad's positive attitude and determination in life. I shall keep in touch with all your journies. Love, Gill xxxx

[Guest]

Dear Gill,

I'm so sorry to hear about your dad. I'm sure he was very glad to have you all around him so much during that last week.

I hope very much that the funeral went well and everything turned out as you wanted it to - as a celebration of your dad's life.

I can't even imagine how hard it must be for you and your family now but just remember your dad is at peace.

Please keep in touch.

Lots of love to you and your family

Lisa xx

[gillvb1]

Hi Lisa, yes, the funeral went well - very low key but just how we wanted it. My brother and brother-in-law made the readings which were personal to the family and very well conveyed. I realise now that my Dad has gone that I spent most of my time subconciously worrying about him. I miss him so much but I don't feel the worry I used to - it's quite a relief really and I feel so bad saying that but I can't change the course of events. My Dad used to take my 6 year old daughter out every weekend and would see her a few days a week to boot. Towards the end my Dad became forgetful and would be late home because they 'took the wrong turning' so I had to bite the bullet and allow him to take my daughter out hoping that his instinct would keep them both safe. They did remain safe and they enjoyed some fantastic days out. The Saturday before he was taken into hospital (he never came out) he took my daughter to the zoo and they came back reeling from a fabulous time together. Now I feel I don't have to worry any more - don't get me wrong - most evenings are consumed by my reminiscing and a me shedding a good few tears and I would do anything to have my Dad back, but there is now this sense of calm which I feel quite guilty about.

[Nardobd]

Gill

The last thing your Dad would want is for you to feel guilty! You loved him and cared for him throughout, always putting his needs first and the fact that you were so worried on a subconcious level only shows how deeply you felt for him. What you're feeling is perfectly natural and part of the grieving process.

Love

Nicki x