The waiting is the hardest bit
Discussion
I've been keeping up with this thread but I have never posted on it until now. I've never met and probably will never meet you,I don't even have words to describe you other than hugely brave and what a genuienly nice/thoughtfull guy you are. Your wife must be very proud of you, I know there is nothing I can say that will have an effect on you like some of the things you say here - this thread has moved me to tears and I don't care what some on Ph think of that. I can't express myself like you can and a thread like this makes my problems seem so small.
We've never spoken or met but I am thinking of you and your wife.
Barry.
We've never spoken or met but I am thinking of you and your wife.
Barry.
Another positive day. At last we got to spend some time together in what was a relatively quiet space. Lots going on, but the nurses are learning to leave us alone when the curtains are drawn. The odd weird hiccup with the tumour though - it grew a cyst in the course of a few hours that was full of no more than air. Yet another oddity of bacterial necrosis I suppose.
Anyway, another week beckons. I hope for a quieter week, though somewhere in it will be a hard and frank meeting about radiotherapy. You know what, I don't mind anymore. If it happens, then so be it, of it doesn't then so what, we'll find another way. As my missue pointed out, her body seems to be throwing up obstacle after obstacle to her not having to wear that mask. There must be a reason for it. Odd perhaps, but we shall see. What ever the outcome, we'll still be here. Doris Day had it so right... que sera sera the future's not ours to see.
A while back, in quieter times, when I was thinking of wedding songs, I was struggling for something that felt special for me - you know, 'it', 'the song'. Then I remembered this, a song that for many a month was on endless repeat. On hearing it again, it was like rediscovering an old and much loved friend. The words go like this.
I am a sailor, you're my first mate
We signed on together, we coupled our fate
Hauled up our anchor, determined not to fail
For the hearts treasure, together we set sail
With no maps to guide us we steered our own course
Rode out the storms when the winds were gale force
Sat out the doldrums in patience and hope
Working together we learned how to cope
Chorus:
Life is an ocean and love is a boat
In troubled water that keeps us afloat
When we started the voyage, there was just me and you
Now gathered round us, we have our own crew
Together we're in this relationship
We built it with care to last the whole trip
Our true destination's not marked on any charts
We're navigating to the shores of the heart
His name is Christy Moore, the song is called the Voyage and on my wedding day this shall be played as I hold her tight. Funny really, we went to a concert of his many moons back and even then I remember how hearing this song and holding her hand made me feel so special.
Roll on this week, i'm already up and at it. Night all.
Anyway, another week beckons. I hope for a quieter week, though somewhere in it will be a hard and frank meeting about radiotherapy. You know what, I don't mind anymore. If it happens, then so be it, of it doesn't then so what, we'll find another way. As my missue pointed out, her body seems to be throwing up obstacle after obstacle to her not having to wear that mask. There must be a reason for it. Odd perhaps, but we shall see. What ever the outcome, we'll still be here. Doris Day had it so right... que sera sera the future's not ours to see.
A while back, in quieter times, when I was thinking of wedding songs, I was struggling for something that felt special for me - you know, 'it', 'the song'. Then I remembered this, a song that for many a month was on endless repeat. On hearing it again, it was like rediscovering an old and much loved friend. The words go like this.
I am a sailor, you're my first mate
We signed on together, we coupled our fate
Hauled up our anchor, determined not to fail
For the hearts treasure, together we set sail
With no maps to guide us we steered our own course
Rode out the storms when the winds were gale force
Sat out the doldrums in patience and hope
Working together we learned how to cope
Chorus:
Life is an ocean and love is a boat
In troubled water that keeps us afloat
When we started the voyage, there was just me and you
Now gathered round us, we have our own crew
Together we're in this relationship
We built it with care to last the whole trip
Our true destination's not marked on any charts
We're navigating to the shores of the heart
His name is Christy Moore, the song is called the Voyage and on my wedding day this shall be played as I hold her tight. Funny really, we went to a concert of his many moons back and even then I remember how hearing this song and holding her hand made me feel so special.
Roll on this week, i'm already up and at it. Night all.
Another good day. Life with cancer is indeed a succession of hopes; hope for a good day, hopes for a positive consultation, hope for a decent nights sleep... some hope!.
Oh well, lets see a bright tomorrow and a day of sun and smiles. it did make me laugh the other day - so many of the porters recognise me now, to be asked five times in the course of a not too long jaunt how the wife is, made me think; perhaps, just perhaps we've been coming to this place a tad too long.. Oh well, with a little luck and a touch of fairie dust, perhaps this time next week she will be home. Here's hoping. Night all
Oh well, lets see a bright tomorrow and a day of sun and smiles. it did make me laugh the other day - so many of the porters recognise me now, to be asked five times in the course of a not too long jaunt how the wife is, made me think; perhaps, just perhaps we've been coming to this place a tad too long.. Oh well, with a little luck and a touch of fairie dust, perhaps this time next week she will be home. Here's hoping. Night all
Granville said:
drivin_me_nuts said:
perhaps this time next week she will be home. Here's hoping.
I'm sure everyone following this thread have their fingers crossed for you both and wishing the same.Remember to treasure and make the most of the good days as it will help you through the bad ones.
i've followed this for a while now with a lump in my throat & tears in my eyes she is a very lucky lady to have you & you to have her, shes clearly a fighter & kicking this thing into touch
my thoughts are with you both
S
It's very hard for family members & friends to know what to do. I understand your feelings, but you also need to understand theirs. I realize that's not easy for you, hopefully they will understand, too.
As others have said, we think you're doing a fantastic job - she's lucky to have you! I wish you a good night's sleep and best of luck tomorrow and beyond...
As others have said, we think you're doing a fantastic job - she's lucky to have you! I wish you a good night's sleep and best of luck tomorrow and beyond...
-Pete- said:
It's very hard for family members & friends to know what to do. I understand your feelings, but you also need to understand theirs. I realize that's not easy for you, hopefully they will understand, too.
As others have said, we think you're doing a fantastic job - she's lucky to have you! I wish you a good night's sleep and best of luck tomorrow and beyond...
Pete, thanks for the reply. I deleted my post. TBO I just needed to rant for a moment and then get it out my system. I understand their needs, I really do. It must be so hard for them, so many miles away and I try my best to edit the truly awful anxious stuff so they don't have to be aware of it.As others have said, we think you're doing a fantastic job - she's lucky to have you! I wish you a good night's sleep and best of luck tomorrow and beyond...
But to call her selfish for not wanting to live through the melodrama and their way of handling things, which is highly charged, dramatic, emotional and so not the way she is, makes me rage inside. It show little or no appreciation of her needs, wants or desires in all of this. This is why it makes me so angry - they are putting their needs before hers.
Edited by drivin_me_nuts on Tuesday 5th October 23:09
I know. But they are even more lost than you, they don't have all the information, they feel distant and helpless. I'm not criticizing you in the slightest because I think you've got a massive responsibility, and it seems like you're being the bad guy for standing up for her wishes. I can only wish you strength and determination to do what's right for her (and you).
Tell them, tell them to tell each other, that - hard as it is for them to cope with, it's what she has asked you to do. They *will* try to understand - all of you are swimming in uncharted waters.
Get some sleep, seriously, it's the best thing you can do for her (and yourself).
All the best!
Tell them, tell them to tell each other, that - hard as it is for them to cope with, it's what she has asked you to do. They *will* try to understand - all of you are swimming in uncharted waters.
Get some sleep, seriously, it's the best thing you can do for her (and yourself).
All the best!
DMN- Whatever steam you need to let off, for as long as it helps you to keep typing there's an army of people here to keep reading.
When I was going through chemo, I didn't know what was going to happen. I made a long list of everything I wanted to happen if I didn't make it, and gave it to my mum to keep safe. I planned my funeral, who needed to be informed, how I wanted everything to go, and the party afterwards. Making provisions for my three nieces and my godson, that sort of thing.
One of my biggest regrets was blowing my top at my mum when I found she'd kept what I'd written under the driver's seat of her car... to her, that was safe because if the worst happened she could get it straight away. To me, I meant with the deeds to the house and that sort of thing... it was a really difficult thing to write out and at the time, I felt it was being shoved with the day's newspapers and so on.... and I completely lost my cool and bawled my mum out. We sorted it out and made amends in the end, but to this day I am deeply ashamed of myself at that moment. The fact that she hadn't quite done what I'd asked wasn't the point- she did what she thought was right, and was upset herself. And I should have dealt with it better, more like a grown up. I forgot that she was finding it hard to manage her own emotions too.
She's forgiven me- mums do. But I've never quit forgiven myself for that moment and I wish I could undo it.
So if typing stuff you don't want to say out loud to your nearest and dearest helps, DMN, I get that. I wish (in retrospect) that I'd done the same. Like I've said before, I wish I was half the man I think you're being.
When I was going through chemo, I didn't know what was going to happen. I made a long list of everything I wanted to happen if I didn't make it, and gave it to my mum to keep safe. I planned my funeral, who needed to be informed, how I wanted everything to go, and the party afterwards. Making provisions for my three nieces and my godson, that sort of thing.
One of my biggest regrets was blowing my top at my mum when I found she'd kept what I'd written under the driver's seat of her car... to her, that was safe because if the worst happened she could get it straight away. To me, I meant with the deeds to the house and that sort of thing... it was a really difficult thing to write out and at the time, I felt it was being shoved with the day's newspapers and so on.... and I completely lost my cool and bawled my mum out. We sorted it out and made amends in the end, but to this day I am deeply ashamed of myself at that moment. The fact that she hadn't quite done what I'd asked wasn't the point- she did what she thought was right, and was upset herself. And I should have dealt with it better, more like a grown up. I forgot that she was finding it hard to manage her own emotions too.
She's forgiven me- mums do. But I've never quit forgiven myself for that moment and I wish I could undo it.
So if typing stuff you don't want to say out loud to your nearest and dearest helps, DMN, I get that. I wish (in retrospect) that I'd done the same. Like I've said before, I wish I was half the man I think you're being.
Edited by blearyeyedboy on Wednesday 6th October 00:16
Edited by blearyeyedboy on Wednesday 6th October 00:17
... I ranted to my sister earlier on this evening and my missus pretty much as soon as I went on the ward this afternoon. In fact, it didn't stop for hours. What is annoying me this evening is that usually I can deal with anger pretty well. But I am so angry it just does not stop and it's still off the scale. I don't even know what it is anymore. In part it's to do with the frustration of someone calling her selfish, in part it's because I feel that I have to constantly bend and move with this - that in some way those words are forcing me into a box of actions I don't want to take, in part because I know just how bloody hard it is to keep on dealing with this and in part because I think it's just the whole selfish 'what about me' thing.
Everyone has their own notion of what help and 'family' means at a time like this - and her notion is radically different to the constant peopleness version of theirs (yes I know peopleness is not a word - but I can't think of another word to describe being constantly surrounded by people fussing and farting around at your every action, pain or discomfort).
I'm not very lucid this evening, i'm so f
king angry I can't sort this out in my own head this evening
Everyone has their own notion of what help and 'family' means at a time like this - and her notion is radically different to the constant peopleness version of theirs (yes I know peopleness is not a word - but I can't think of another word to describe being constantly surrounded by people fussing and farting around at your every action, pain or discomfort).
I'm not very lucid this evening, i'm so f
king angry I can't sort this out in my own head this eveningdrivin_me_nuts said:
... I ranted to my sister earlier on this evening and my missus pretty much as soon as I went on the ward this afternoon. In fact, it didn't stop for hours. What is annoying me this evening is that usually I can deal with anger pretty well. But I am so angry it just does not stop and it's still off the scale. I don't even know what it is anymore. In part it's to do with the frustration of someone calling her selfish, in part it's because I feel that I have to constantly bend and move with this - that in some way those words are forcing me into a box of actions I don't want to take, in part because I know just how bloody hard it is to keep on dealing with this and in part because I think it's just the whole selfish 'what about me' thing.
Everyone has their own notion of what help and 'family' means at a time like this - and her notion is radically different to the constant peopleness version of theirs (yes I know peopleness is not a word - but I can't think of another word to describe being constantly surrounded by people fussing and farting around at your every action, pain or discomfort).
I'm not very lucid this evening, i'm so fking angry I can't sort this out in my own head this evening
Get some sleep fella- best thing you can do.Everyone has their own notion of what help and 'family' means at a time like this - and her notion is radically different to the constant peopleness version of theirs (yes I know peopleness is not a word - but I can't think of another word to describe being constantly surrounded by people fussing and farting around at your every action, pain or discomfort).
I'm not very lucid this evening, i'm so f
king angry I can't sort this out in my own head this eveningThink it over with a clear head tomorrow.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff