Newbie, advice and support please?

[PCUK Nurse Jeni]

Hi Sam,

It was really a pleasure to speak with you. You are such a compassionate and caring person, and as someone else mentioned, so nice to hear you speak of Anne the way you do. She is blessed to have you as a daughter-in-law.

I hope the weekend was OK - emotional, sad and probably some happy moments also in there. I hope the syringe driver is working now for Anne - possibly by the time you read this, she will already have been moved to the hospice. I do hope that she is out of pain and comfortable for whatever time she has left.

Do take care, and yes, we are all still here, and this of course includes the support line.

Very best wishes to you and the family,

Jeni.

[Sammy-Lou]

Thanks so much everyone, the kindest of 'strangers' along this jourmney has made it all the more bearable.

Thank you Jeni, that's kind of you to say but I honestly cannot find the words to express to you how grateful I am for speaking to me, it made such a difference and has helped me process my thoughts and emotions.

You're right, Anne is now in the safe hands of the hospice team, an ambulance came to move her this morning, it's a time of complete mixed emotions, happy that she is now being made comfortable and coming to the end of her relentless suffering but so much pain and sadness that she is having to leave her home, a home she has built for the last 20+ years, a home she spent a lot of time raising her children in, her beautiful garden she has spent many hours in and all the while knowing she is not to return.

My husband has gone to work again today and I just don't know how he is managing, I think he is using work as a welcome distraction and it's keeping him busy but I do hope he is coping. He actually works quite close to the hospice so is going there after work. It is his birthday tomorrow although nobody feels like celebrating at the moment, I will try to make it special for him, I took him for a lovely meal yesterday with our daughter and we laughed and smiled and I think we both actually allowed ourselves to briefly forget..

Thank you to everyone, I really don't know how I would be coping without you all.

S x

[DRAD3]

Lots of love to you Sam - you are doing amazingly well, as is your husband and Anne. So nice to hear that you had a nice meal, the two of you and your daughter and were able to smile for a while. I do hope your husband has a nice birthday tomorrow - bittersweet I am sure. Continuing to think of you all.

Deb

x

[laura]

hello sam, just to let you know i am thinking about you all, wishing peace and love to anne and love and strength to you and yours, look after yourself eh! love laura xxx

[Catherine]

Hi Sam,

I just thought I'd pop on quickly to wish you some love and say I'm glad you had some nice times with your family.

Thinking of you

Catherine xxx

[PCUK Nurse Jeni]

Hi Sam,

How are things?

Just thought I would send you a message to say thinking of you.

How is Anne?

Kind regards,

Jeni.

[Sammy-Lou]

Hi Everyone,

Sorry its been such a long time since I posted but the last month has been a total blur and doesn't seem to be focusing anytime soon but I have managed to find time to pop on here, mainly because I am unable to sleep!

Well I'm not really sure where to start but I better update you; Anne is miraculously still with us, sadly just a shadow of herself but still holding on! We are all in disbelief that we have been so fortunate to have so much more time than anyone predicted, in the middle of Jan we were told 2 weeks and then first week Feb she was moved to the hospice where she has deteriorated but baffled the doctors.. They have told us that they are amazed at how she is coping with what is happening to her body and they (in the doctors words) 'By all means, she really shouldn't be with us..' The Time we have had has been borrowed time.. My brave, strong mother-in-law fighting til the very end, will not give up and let this awful disease take her life on its terms.. I'm sure she's determined to give it her life when she is ready and not a moment before!

It has however left us all in a constant limbo of unanswered questions and feelings of confusion.. I'm constantly facing a internal battle between not wanting her to die and feeling guilty that I'm even thinking that enough is enough and she's suffered far too much already. The guilt you feel when you are torn between wanting desperately for someone you loves release from suffering when it means they will no longer be with you is a inner turmoil I can't express too well and its become somewhat a longstanding fixture at the moment. Physically drained and not sleeping, dealing with the rest of life, my poor husband, my sensitive toddler who is also not sleeping and my own emotions are sometimes getting too much to cope with but I have to be strong, I must carry on!! We were told on Monday we only had a few days left and here I am on Friday telling you all Anne is still with us.. Again defying the odds... She is very weak now, very tired, unable to swallow fluid, restless and uncomfortable.. I know she's a fighter but I can't see how she can fight this much more.. And I don't want her to have to either.

I will try to update when I can and hope everyone else is doing well!

Love to all xxx

[Sammy-Lou]

Sorry, Thank you to everyone for taking the time to think of us! So much appreciated!!! You are all so supportive and I wouldn't have made it this far without your kindness!! Xx

[laura]

dear sammy, my thoughts and love are with you, i really hope anne is peaceful, for all your sakes. love laura xxxx

[Catherine]

Hello Sam, I'd been wondering how you were getting on. Sending you strength love and hugs. Catherine xxx

[DRAD3]

Hi Sam

So sorry to hear how Anne is now. It is quite clear that she is an incredible lady. Living (and dying) on her terms and showing this cancer that she is the one in control - what an inspiration! You are understandably in turmoil and all of the emotions and thoughts you describe I can relate to. I think you will know by now how strong you are - I am sure you never knew you had such strength?! Will continue to think of you all and send you lots of love.

Deb

x

[PCUK Nurse Jeni]

Hi Sammy,

Nice to hear from you and thanks for posting with the update on Anne.

Yes, quite amazing that she is still alive.

I can totally empathise with you about how you are feeling regarding wanting them to die/not to die. I have had personal experience of this, but I think in my circumstance, my "nursing head" stepped in at some stage, and I could see the reality of what was happening and felt as you did, enough is enough. She is am amazingly strong lady, for sure.

It is probably difficult for you to juggle everything these days, and trying to get on with everyday life also. Sounds like you are managing it, but don't forget to ask for help if you need it.

Take care,

Jeni.

[charney]

Sam I have been wondering how things were, Anne

is truly a remarkable Lady, My heart goes out to you and your family

Big Hugs

cheryl xxxxxxxxxxxxxxx

[Sammy-Lou]

Thank you so much everyone!!

Here we are a week after we were told a couple of days and Anne is still fighting! Sadly she now has a cough, my husband says phlemy and sounds from the chest although she is too weak to clear it. I'm back at home now and working all week so won't get back over until Sat but my husband and his brother are spending 10 hours each there daily, split into 'shifts' so they can still put in some hours at work each, they are both very hardworking and also want to retain a small ounce of normality. When I visited at the weekend I was shocked to see the deterioration which is obvious after 6 days having not seen her, when I think she couldn't get more frail, there we are a week later shocked by how much more weak and frail she is! She is now mostly sleeping and we were unable to wake her, usually she would manage to open her eyes when she heard voices or slightly grip our hands. Seeing what this awful disease has done makes me think about my future and I hope that I never have to experience the suffering that a dying cancer patient does.. Heartbreaking, soul destroying, I wish nobody had to endure that.. Brings me to understand why people say sick animals get treated better.. It's no way to finish your life is it!

Thanks for your continued support, you are truly amazing individuals. I'm pleased to have this forum to tell Anne's story and my own journey. No one life is the same as another and we are each unique in our death.. Well Anne is anyway, baffling doctors and nurses like I'm sure she will continue to do for a little longer still.

Take care, lots of love xxx

[DRAD3]

Hi Sam

You are right - it is incredible how we allow people to suffer when we would never allow an animal to do so. I guess ultimately we play God with animals' lives but no-one would dare to think they can do that with human life, so step back and let Mother Nature do her thing - she can be a cruel lady! I don't know what the answer is and until we all agree what is right, I suppose things will never change.

I do hope Anne is comfortable - I am sure she is secure in the knowledge she is very much cherished - sending you all love and strength.

Deb

x

[Sammy-Lou]

I know what you mean Deb, it seems cruel but can't see there being a change because there will be uproar, just can't stand seeing her suffer.

I'm probably going to sound ridiculous saying this and I apologise to those who have lost their loved ones but I'm finding it to be a terribly lonely place, my poor husband is working half days and spending til gone midnight at the hospice and so yes he's going through so much worse than me just feeling lonely but just a shallow gripe, god I miss him and 'normal' family life..

Again apologies because it seems pathetic saying it! I've been really worried tonight cos my husband said Anne was in lots if pain yesterday and again today, she was taking pregabalin(? spelling) which is prescribed for Neurological pain, I think this was for nerve pain to do with the cancer and her 2 collapsed vertebrae but since she has been unable to swallow tablets she has been off it and so the pain has just worsened.. I wish they could help her, I've sat worrying and I find that is making me feel more lonely, so far away from Anne and my husband, am I confusing helplessness with loneliness!?

Totally selfish post just about my feelings but I suppose this forum is like my blog too, my way of expressing my journey and my feelings.. My outlet, not sure how I would cope without it!

xxx

[yorkypaul]

Hi Sam

Don't feel selfish. I have experienced those same feelings. The helplessness makes you feel alone and vulnerable. You are so right to use this place as a means to unload and vent. We have all done it. Stay strong. One day at a time. Sending you a big hug

Paul x

[charney]

Sam your feelings are normal, when my mother in law was ill, my husband was going in to

see her every day after work and I too felt like you, then would feel so guilty because his mum needed him far more than I did and he needed to do this as well. You are on such a roller coaster ride, your emotions will be turned upside down, After my mother in law died my husband was so pleased that he had spent this time with her. I am sorry that

you are having to watch Anne suffer so much it is not easy, and with such mixed emotions

going through your head and heart im not surprised you are feeling so low and helpless.

Audrey was only really poorly for 2/3days and that was hard enough, but what you are going through with Anne must be heartbreaking and I so admire you for being strong.

All my love

cheryl xx

[DRAD3]

You are right about this forum being everyone's personal blog - such a godsend when you need to get those thoughts out of your head, especially the ones that make you feel guilty. As you have found, Sam, we have all had them, so no need to punish yourself, what you are thinking and feeling is completely normal. I had so much help and support when I was caring for my husband but in the end I had to deal with my own experience of it on my own and it did feel extremely lonely and frightening and I so wished for it all to be over, to get back to a "normal" life and to have some peace, then the guilt would set in because my husband was obviously suffering so much more than me. Such an awful thing to have to go through, for all of you. Sending you love and strength, as always.

Deb

x

[Sammy-Lou]

Thank you Paul, Cheryl and Deb. I wouldn't have it any other way, I actually was the one who told my husband to be with his mum as much as he possibly can, I know her sons are the most important things in the world to her and she needs them beside her as much as they need to be there too. I suppose I just feel helpless and useless, like I'm in some sort of limbo where the world carries on but we aren't able to enjoy life, I don't feel in anyway resenting of this situation causing our lives to be put on hold I just realised today that I can't remember the last time I took a photo of my daughter (I used to take photos a lot, my camera phone is full of cheesy grins and my giggling 2 year olds face) but recently we haven't taken her anywhere, no trips to the farm or the zoo or walks in the woods.. Must make more of an effort to find a little time to do things with her rather than getting wrapped up in the situation, as important as it is, my little girl smiling and enjoying life is important too, need a bit if normality! I realised we'd not been to my parents since Xmas either, they live an hour away and come to see us weekly but we went at least once a month to their house and maybe stayed the night.

Today Anne was restless and uncomfortable, they made the decision this afternoon to give her a sedative to help her sleep, she slept from 3pm and is still sleeping now.. At least she is comfortable. My husband is spending the whole day there tomorrow while I work and we'll all go on Sat! We are now 10 days since we were told 2-3 days... Still fighting!

xxx

[Welshie]

Hi Sammylou,

I feel so much for you, your Husband and your family. This is such a horrible journey. I cant speak highly enough of the support from PCUK and you are right, it so helps to have someone to talk to who truly understands this. Your story is so similar to my families experience with our Mum, who sadly passed away March 11th 2010. We have also lost her brother and cousin to the same cancer. Explaining to a child as young as yours is extremely hard and I really don't know what to suggest. When Mum was going through it my eldest Grandson was 8 years old and my sisters grandchildren were all under 4. All of them very close to Mum. To this day I am not sure how much they understood at the time, but for Santino (aged 8 ) it was awful. He tried to be a "man" which broke my heart. The main thing now is to make sure that your MIL is as comfortable as she can possibly be. As Debbie said, every journey to this is different so what has worked for one may not be right for another. Just lean on your friends/family for support when you need it, dont bottle your emotions up. If you want to message me I can send you my email address. Sending you strength for the journey ahead x

[Welshie]

ps.... not sure how the smilie got there...I certainly didnt choose it, I put down Santino was eight years old ??

[Catherine]

Sam,

I am not surprised you are feeling lonely. It's a horrid scary place to be in. Don't feel bad about any of your thoughts, life doesn't come with an instruction book on what you are supposed to do/ think / feel at any time. You are doing amazingly well.

Lots of love

Catherine xxx

[Sammy-Lou]

Thank you everyone for your ongoing support.

Welchie thank you so much for replying, I'm sorry for your loss and thank you for the comments about handling the situation with our daughter.

Anne has been unconcious since they sedated her last Thursday, she is/has been moaning on and off but a relief that she is finally comfortable, something she has rarely been throughout her battle. It's a sad waiting game now, knowing what is upon us but just waiting, holding breath, we know what is coming. We took our daughter to the hospice on Saturday and despite heavy sedation and not waking since Thursday we were shocked that after coming to leave I lifted my daughter up to Anne's face and said "Kiss Nanna goodbye and tell her you love her, we have to go now.." As she kissed her and said I love you Anne's eyes pinged open wide, in an instant, while they were face to face and immediately shut again! My heart in my throat, its as if she just held into enough strength to see her grandchild one last time! She hasn't opened her eyes since..

My daughter later said to me that we must help her uncle (my husbands brother), I told her he would be ok and that he was staying at the hospice with Nanna because Nanna was so poorly and she replied "We'll work it out mummy". She's 2 and so clever, so perspective. When we were at Anne's house an hour later she asked to go to Nanna's room, I took her in and she stated at her empty bed and said "Goodbye Nanna, goodbye".

I've heard people say children are somehow closer to spirit before but despite a lack of faith I find myself believing that to be true now!

xxx

[PCUK Nurse Dianne]

Hi Sam,

Such a difficult and heart wrenching time for you. It sounds like you have done an amazing thing with your daughter taking her to see her Grandmother, and at times like these you have to do what you feel is right and not be guided by others. You know your daughter better than anyone else, and to have shared such a beautiful moment with Anne will become a special memory for you all.

Thinking of you all over coming days, and hoping that Anne is comfortable and at peace.

Kind regards,

Dianne

Support Team