He is still hanging in there, mostly sleeping he does try and speak if I speak to him but it’s so garbled it’s hard to understand what he is saying . He has lots of secretions in his throat , they have given him something to help stop it building but can’t suction what is already there.
He is not in pain as such but when they try and move him he calls for his Mum.
Tomorrow is D day depending on blood results whether they will continue with the Aunti Bs or call it a day and I have to be honest I wish they had not even started them for me there doesn’t seem much point to try and get him over this for what would be a few more weeks.
Zack our youngest is terrified he is a lot like Trevor and is refusing to accept he has said that I am overly dramatic and people are cured of pca all the time so why am I being so negative.
James is accepting of the situation but doesn’t want to talk about it .
All I can do is be there for them when they need me , I can’t force them to talk and I can’t force them to accept. Everyone handles things in there own time and in there own way.
It has been a long and at times very hard 4 plus years but we are now nearing the end of our Rocky Road .
I would just like to thank each and everyone of you for being my support network in the last 4 years , you guys have no idea how much you have helped me in every way possible .
You have been my crutch in my many hours of need .
Thank You
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Julie sending love at hugs at this very difficult time.
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Sending all your family my love right now.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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So sad to read these latest updates, sending all our love to your family
Don't deny the diagnosis; try to defy the verdict |
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Thinking of you and your family at this very difficult time. I hate this disease and what it does to people and their families. Xxx
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Treble xxxxhugsxxxx xxxxhugsxxxx xxxxhugsxxxx you need them now!
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You know that we are and always will be your crutch though i suspect that you prefer to manage by yourself.
Life is so hard for you all at the moment and is likely to get worse. There isn't anything we can do to help apart from be here for you. I'm one hundred percent certain that if it was just a matter of everyone sending you positive vibes to lift you all, you'd be sky high now with the speed of the response.
~Instead of which we watch and wait with you and send you virtual hugs and the warmth of our caring..
We can't control the winds - but we can adjust our sails |
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All my thoughts are with you Julie - I hope as you do that Trevor can simply be at peace and that you are able to be with him when he finally stops fighting. A friend sent me this poem after Tony died. It's by Raymond Carver who had cancer and was written shortly before his death as a tribute to his wife. When I was full of useless guilt about what I had and hadn't done she reminded me that I had been the best there could possibly be for him, and that he absolutely knew that he was loved. That's all that matters in the end and if ever a man was loved and cared for and fought for and supported and comforted, it's Trevor. You have been and are extraordinary - for him and for us all. Love and hugs to all of you, Ruth xxx
Late Fragment
And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
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Thinking of you all, Julie, and wishing for sufficient pain relief for Trevor, and as much calm as possible. You are right we all deal with these times differently in our own ways. Look after you, these are exhausting days physically and mentally, for you all, Love Janet, x
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Dearest Julie. Like all on here I am so so sad to read your last updates. I have many times on reading your posts been in awe of your strength, your capacity and determination to fight for your man and your relentless and unconditional love for Trevor. The greatest comfort for me when Graham died was that he did so peacefully in my arms, his hands cradled in the hands of his children being told he was and would always be loved by us all. I wish for you and your boys that Trevor’s journey is pain free and peaceful and that you also find some comfort in the certain knowledge that you were the greatest most supportive and loving person he could ever have and that, as the poem that Ruth sent said, that he knew for certain that he was truly loved on this earth, you made sure of that and that is your lasting gift to Trevor. I can see by all the posts to you Julie that you too are greatly loved and respected by your friends on this forum and I hope you find strength and comfort from this at this very difficult time.
Much love and respect
Yvonne
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Oh Guys ,
So D day has turned into another wait , some of his bloods have improved and some are worse so the Wiz wants to extend the deadline to Wed she has changed the Aunty Bs and said let’s try for a few more days partly because he rallied last time.
He is still asleep most of the time he does open his eyes and acknowledge that I am there but then drifts back into sleep. They tried to feed him soft food , soup and ice cream but he wasn’t alert enough to eat he hasn’t eaten since Sat 21st.
I am struggling with this decision for me at the moment this is just dragging out the inevitable the way I see it even IF and it’s such a big IF they manage to bring him back when he finds out that all cancer treatment has been stopped he will just give in anyway.
He is unable to swallow so can’t take any of his heart meds .
I am feeling so overwhelmed at the moment maybe it’s just me but it doesn’t make sense to continue with the antibiotics to bring him back for a few weeks knowing that he has so little time anyway.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi Julie
Must be impossible to think straight under the circumstances - and given 4-years-worth of anxiety and exhaustion piling up - but I do agree with you. Are you able to talk to the Wiz about it? Maybe she's just assuming that you will both want to keep on fighting since that's what she has seen you do over and over again.
Our consultant kept encouraging us to keep going until eventually she realised that Tony had absolutely had enough; she really supported us with that decision once she understood it. It's a rock and a hard place and neither decision will be an easy one of course but I hope that common sense prevails. You have both been through enough.
Will be thinking of you lovely lady and sending love and hugs and a shed-load of comfort-blankets.
Ruth xxx
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Is he only having antibiotics? If so, that may be more about keeping him comfortable for the time that is remaining - uncontrolled infection could cause unnecessary discomfort and distress? I don't think ABs could keep T with you for longer than his body can bear.
I know what old friends would be telling you - Alathays would say that the fat lady isn't singing yet, Topgun would offer to lock her in the cellar but Spurspark and Nimeniton would say let her sing, the music may be very beautiful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Julie, no one can give you the right answers as there is none in this situation. You can only follow your instincts which have always served you so well. As Lyn suggests he is not on treatment at the moment just care to make him comfortable. I hope you get chance to talk with him again. It’s a long road and we know the end comes at some point. If this is it, I so hope he goes with as little pain as possible, knowing you could not have done more to support him. I am thinking of you both and your family, it’s so so hard. Your friend Paul
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Hi Julie & Trevor,
I just wanted to send my love to the two of you. You are both remarkable people who haven't deserved any of what life's thrown at you. I wish I knew how I could help.
Your strength has helped me through difficult times and I feel I should be able to help you more. I just wanted to let you know I care.
Steve xx
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I hope no one finds this inappropriate, 3 years ago when I was diagnosed Trevor's story was one of the first I latched onto. Trevor gave me hope and I used to (I still do) hope I am a tenth as strong as Trevor as my cancer develops.
Julie has been such an angel and fought so hard for Trevor, and like a few others on the forum been here for everyone when they need it.
I watched my mum die of alchzeimers and towards the end she was I imagine like Trevor is now in part, my family made the choice to make what was left as pain free and short for my mum as the doctors could allow.
Reading about Trevor brings tears to my eyes, when I am unable to post and should my wife ever join the forum please tell her fast and pain free is the way for me when I am where Trevor is. I am sure that I speak for others on this forum that we will support you Julie if any difficult decision has to be made.
I wish Trevor and you peace now and spiritually peace in eternity.
Thinking of you constantly
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |