The waiting is the hardest bit
Discussion
anonymous said:
[redacted]
Thank you Lois. To be honest most of the time it's fine, but every now and then it leaves me in pieces. Saturday night we were watching Lord of the Rings and the last bit, where they all say their good byes and depart had me in utter pieces - literally sobbing my eyes out. I was so scared and so afraid. I remember telling her that I don't want her to die. How stupid, of course I don't, but it's like I was pleading with the tumour not to take her. It was the first time throughout all of this that I felt a sensation of utter loss and almost hopelessness. It's gone now - in fact the feeling went in a few minutes, but it scared the hell out of me at the time. It followed the previous nights horrendous dream about being swept along in a crowd and losing her and panicking that I would never see her again. I know it's best out than in, and fortunately whese feeling don't hit often at all, but when they do it's utterly overwhelming. I am working thus week, my first proper week away from her since this all began and I feel like i'm letting her down. I have to pay the bills, but the conflict with doing that and looking after the woman I love more than life itself is utter utter s
t. I feel so far away from her. I can't wait for Friday.anonymous said:
[redacted]
Ummmm. It's a mix bag of stuff. Radio starts on Monday with the verification later this morning. Another drug to add to the list, a short term steroid to reduce the inflamation as her throat is now so obstructed her left vocal chord can no longer be seen. Oh that and a higher rate of pain medication. She's got some oralmorph for breakthrough pain relief as co-codamol has proved more trouble than it's worth. Fortunately, most of the time pain meds stops at paracetamol, though there are times when the pain level has been off the scale and morphine should work (fortunately it's a very low dose). Funny how it's pretty much left up to you to take as much as you need when you need it. No more messing around with take x twice a day, it's more a case of glug back as much as you need until you start to see the dancing fairies!This is going to be a close run thing in terms of radio therapy. IF it's going to kill the tumour it will need to start working very soon as a delay could potentially be a case of balancing up breathing vs speaking with the need for a tracheostomy - and all the mess and hassle that one of those entails. There have been times recently where he coughing spasms have been horrendous and all I can say is it reminds me of those old descriptions of people with consumption. Horrible to go through and horrible to watch. (Hence me recently asking if there is a way to contact emergency services if she cannot speak).
Mentally she's rock solid, no fuss and no drama, in fact she's perked up the last few days and she's in really good spirits. I think my own wobbles of the past couple of weeks have dissipated. I realise I am very sensitive at the moment to anything visually emotional at all - any film that has any emotional loading has me in tears; the curse of being visual.
Speedguy, I wish there was something that I could say to you that would make your pain and stress the easier to bear. As has been mentioned above, a virtual hug is yours free for the taking and I hope and wish that today is a better day than yesterday.
Edit: Actually today went pretty badly. Can't fit in the mask, it's too tight and she chokes. She can't lie flat for long enough to not choke on her own saliva. Where the cyst was is still too raw on the inside to war the mask. Next try Monday. 3 days for anti-inflamatories to work enough to reduce the tumour swelling or plan B. Properly frustrated and worried today. Without the mask there is no radiotherapy in which plan B would more than likely be palliative. 4 days to wait.
Edited by drivin_me_nuts on Thursday 16th September 20:04
Not a bump. 10am tomorrow meeting again. Already heard the news. Care goes palliative, days, weeks or months. The bloody consultant already introduced her to the palliative reg without me being there. fking bh. She's going to answer to me tomorrow. Right from the start she was the one who said don't bother. I hope she fking rots in hell. She knows I am always there with her and the only fking week I am not she pulls a stunt like this. This is psychological warfare and the bh isn't going to win. My missus doesn't give in that easily.
king bh. She's going to answer to me tomorrow. Right from the start she was the one who said don't bother. I hope she fking rots in hell. She knows I am always there with her and the only fking week I am not she pulls a stunt like this. This is psychological warfare and the bh isn't going to win. My missus doesn't give in that easily. Thanks, don't worry - you really can't say anything bad. Fortunately i've got a pretty good grasp of the palliative stuff - my sis is a palliative consultant in a hopsice and her knoeledge has been a godsend. What really pisses me odd is that the palliative person was literally just thrown into the room without any warning. Yesterday we were talking curative radio, this morning we were talking trac, delay of a few days and continued radio, now we're talking pretty much that's in - in so far as there's nothing more they will do. Best intention stuff I understand, but this is just plain wrong. No support, no warning and just jump in with what was in effect a 'sorry, we're done here, off you go to the palliative team, have a trac because it will give you extra time to 'settle your affairs' and go away into a corner and die'. Angry does not even come close to how I feel right now. fking raging is more like it.
king raging is more like it.I'm going to bed now. Today has been surreal. From a morning of teaching and sorting out stuff for after this is all over and she'd out the other side, to an evening of the ward and shock and suprises i'm done in. My head is screwed. It's not often I feel like i've had enough, but i've had more than enough of today. Please, just for a couple of minutes tomorrow send a few positive thought our way, because at the moment I can't even summon the energy to think about the day ahead. Thanks for your support.
Well it could have been better, it could have been worse.
Apparently the palliative doc was there yesterday because they believed she had only hours to live and was present to make her passing as comfortable and respectful as possible. Not much else to say really, other than it would have been nice to have been aware of this fact yesterday...
Anyway, about today. So we have choices. Yes the care is going from cure to palliative. Many choices and in a short while I need to go back to the hospital to talk this through with her and plan the steps ahead.
Choices; Do nothing, Trac, Trac plus nothing, Trac + full radio as before, back to the beginning, new mask and planning, Trac + compressed cycle radiotherapy i.e. 4 weeks not 7.
No idea what to do next, hence the need for discussion.
I am encouraged by the fact that her consultant is positive and pretty much knows that she wants to continue radio. Yet again their faces were a picture when she walked in - compared to yesterday she was 'normal'. They seem to forget her resilliance and determination to get through this is unbreakable. It made me chuckle inside, her consultant seems to have developed and openly encouringly smile at her positive attitude!
So the pen writes some more. My love and profound respect for my darlings resillience and unbroken spirit leaves me breathless. This does not feel like the beginning of the end. Deep in my soul I know it isn't. We have many miles yet to go and it's going to be an adventure. The pen will write some more, but it writes with a new determination and resolve.
Thanks for your support today. TBO I felt an utter wreck this morning and felt so unprepared mentally for it. Yet in truth there was no real drama and life changing decisions. Cure to palliative may be the shift in emphasis, yet we remain unbroken. The nice thing is she is back on her 'favourite' ward where the staff are lovely and were so welcoming. It makes a difference.
Take her some diner, get a brew inside me and then off I go. A night of late discussions and choices.
Apparently the palliative doc was there yesterday because they believed she had only hours to live and was present to make her passing as comfortable and respectful as possible. Not much else to say really, other than it would have been nice to have been aware of this fact yesterday...
Anyway, about today. So we have choices. Yes the care is going from cure to palliative. Many choices and in a short while I need to go back to the hospital to talk this through with her and plan the steps ahead.
Choices; Do nothing, Trac, Trac plus nothing, Trac + full radio as before, back to the beginning, new mask and planning, Trac + compressed cycle radiotherapy i.e. 4 weeks not 7.
No idea what to do next, hence the need for discussion.
I am encouraged by the fact that her consultant is positive and pretty much knows that she wants to continue radio. Yet again their faces were a picture when she walked in - compared to yesterday she was 'normal'. They seem to forget her resilliance and determination to get through this is unbreakable. It made me chuckle inside, her consultant seems to have developed and openly encouringly smile at her positive attitude!
So the pen writes some more. My love and profound respect for my darlings resillience and unbroken spirit leaves me breathless. This does not feel like the beginning of the end. Deep in my soul I know it isn't. We have many miles yet to go and it's going to be an adventure. The pen will write some more, but it writes with a new determination and resolve.
Thanks for your support today. TBO I felt an utter wreck this morning and felt so unprepared mentally for it. Yet in truth there was no real drama and life changing decisions. Cure to palliative may be the shift in emphasis, yet we remain unbroken. The nice thing is she is back on her 'favourite' ward where the staff are lovely and were so welcoming. It makes a difference.
Take her some diner, get a brew inside me and then off I go. A night of late discussions and choices.
Dear PH, thank you all for your kind words of support today. Just got in, it's been a long and hard day but also in some bizarre way also very life affirming.
IforB, you are bang on with your reply. I read it before I left for the hospital and it was going through my mind all the time - reading your words was like a mental 'click' that said yes, do the whole thing. Go for it - what have you got to lose?
So, assuming nothing becomes undone, we go forward with the trac on friday afternoon and when the dust has settled and she has had a little breathing space (in more sense than one!), we go forwards with a new mask and seven weeks Radio. Something else to learn - how to keep a trac well looked after. Flippin 'ek she's turing into a borg. Picc, PEG and Trac. She's worth her weight in recycled plastic ... which incidentally has hit 39kg so well out of the danger zone.
IforB, you are bang on with your reply. I read it before I left for the hospital and it was going through my mind all the time - reading your words was like a mental 'click' that said yes, do the whole thing. Go for it - what have you got to lose?
So, assuming nothing becomes undone, we go forward with the trac on friday afternoon and when the dust has settled and she has had a little breathing space (in more sense than one!), we go forwards with a new mask and seven weeks Radio. Something else to learn - how to keep a trac well looked after. Flippin 'ek she's turing into a borg. Picc, PEG and Trac. She's worth her weight in recycled plastic ... which incidentally has hit 39kg so well out of the danger zone.
I'm sitting here tonight wondering about the future. I feel so many things at the moment, from raw emotion to numbness. I am afaid that I am witnessing the last few weeks of her life and I watch the tumour take a life all of its own.
Life before all of this was so recent, it was just the beginning warm weeks of summer and before it even starts to get cool I sit here wondering if she will even make the Autumn equinox, let alone Christmas.
I so want her to live and she is not ready to die, yet why is it that more than even I am scared of her dying. I am not ready to let her go, yet all the signs all the cues from everyone around her is that this is the last chapter being written. I want her to be strong enough for radiotherapy yet I feel so terrified of losing her suddenly. On tuesday she almost died and tonight of all nights it has hit home with avengance that at any time she is just a few moments from death.
Everything is almost in place. The wills are written, the wedding, that we put off for so long to do 'properly' is only a few days away with a special granted licence. Tonight I can't bare this. Tonight I am breaking
Life before all of this was so recent, it was just the beginning warm weeks of summer and before it even starts to get cool I sit here wondering if she will even make the Autumn equinox, let alone Christmas.
I so want her to live and she is not ready to die, yet why is it that more than even I am scared of her dying. I am not ready to let her go, yet all the signs all the cues from everyone around her is that this is the last chapter being written. I want her to be strong enough for radiotherapy yet I feel so terrified of losing her suddenly. On tuesday she almost died and tonight of all nights it has hit home with avengance that at any time she is just a few moments from death.
Everything is almost in place. The wills are written, the wedding, that we put off for so long to do 'properly' is only a few days away with a special granted licence. Tonight I can't bare this. Tonight I am breaking
... tonight is a killer. It is so hard to go to bed. I am knackered and my head is literally dropping off, but for some reason I cannot. It's almost as if I am afraid. I know this is not a difficult procedure normally, yet with it being so close to the tumour, there are added risks that make this more risky. Like I said some deeper part of me knows that this is not the end of it, yet there is a part that late at night alone in a house that is full of her yet at the same time completly empty of her body is unbearable. It doesn't even feel like home. In fact, I feel completely homeless at the moment. It's horrible and it's something I have never felt before, a sense that goes beyond 'normal' feelings of loss and death, but an almost incomprehensible sense of something that is nothing. I've met cancer before, I am familiar with loss and how the mind and body heal over time but this feels so off the scale at the moment to be unbearable. It's like being chased by some kinda of horror demon. I can feel it behind me, sense its colour, size, shape and presence. It is tangible and very real. Maybe it is my 'death' demon - my profound sense of fear surrounding losing the love of my life. Yet it can't be that because she will never be lost to me, so I can't work out what it is. In part I understand what is going on, that my mind is trying to make solid (and therefore rational) something that to it is incomprehensible and unreal.
It was only supposed to be a sore throat, it was not supposed to be throat cancer that will kill her. I have to sleep now, I need to be with her in the morning and be sane and sensible. We are getting married in the hospital early next week. She told me what she is going to wear, what she wants me to bring from home. It is my favourite dress, a beautiful red with ribbon corsetry up the back. When she told me I sat oin the bed and wept. She told me the shoes to bring and the matching bar snd I know which perfume she will want and which piece of jewellery I made for her she wants to wear. I sit here crying my eyes out wondering if it is the last time I ever see her in what is my facourite outfit of hers. Where do I find the strength to do this? I am breaking in two
It was only supposed to be a sore throat, it was not supposed to be throat cancer that will kill her. I have to sleep now, I need to be with her in the morning and be sane and sensible. We are getting married in the hospital early next week. She told me what she is going to wear, what she wants me to bring from home. It is my favourite dress, a beautiful red with ribbon corsetry up the back. When she told me I sat oin the bed and wept. She told me the shoes to bring and the matching bar snd I know which perfume she will want and which piece of jewellery I made for her she wants to wear. I sit here crying my eyes out wondering if it is the last time I ever see her in what is my facourite outfit of hers. Where do I find the strength to do this? I am breaking in two
I don't think I have convinced myself that she is a lost cause. Amazing what a little sleep does. I think yesterday was just overwhelming with talks of wills and afterwards and then getting the marriage certificate and vows it was just too much pf one thingh after another. Off to the hospital this morning to be with her before she goes to theatre. I shall consider myself duly snapped out of it! This is bloody hard at times, but you're right, there are wobbles along the way and last nights one was a big bloody WOBBLE, but today is better. I've been thinking of wedding lists and guests and champagne, so in part I know I feel much more positive. Today is the start of something new. It means that the immediate worry of air restriction is gone and then we can think again of radiotherapy. It's hard, but we'll get there. Thanks.
Well She is in theatre at the moment. I was with her for about 20 minutes before she went down and they are doing it under local as te tumour started bleeding when they used the endoscope. I'll see her this afternoon and evening.
Funny really, i'm uploading a video at the moment to add to our website of one of our clients and her experiences of stepping away from bipolar. We were with her when she did the interview and it is fabulous. Later this evening I want to take the laptop to show her. I know it will make her very happy. Focusing on something else at the moment is proving very helpful - as is the thread running in the lounge. It's inspirational on a day when insiprational is what I need. Thanks for all your kind words and thoughts. The day is getting easier and the darkness of yesterday and today is starting to fade away. I feel more like me again.
Funny really, i'm uploading a video at the moment to add to our website of one of our clients and her experiences of stepping away from bipolar. We were with her when she did the interview and it is fabulous. Later this evening I want to take the laptop to show her. I know it will make her very happy. Focusing on something else at the moment is proving very helpful - as is the thread running in the lounge. It's inspirational on a day when insiprational is what I need. Thanks for all your kind words and thoughts. The day is getting easier and the darkness of yesterday and today is starting to fade away. I feel more like me again.
I left the ward at 2am. There were a few complications along the way, nothing serious, but because it's the airway any hiccup is more worrysome. They removed a piece of the tumour yesterday and will tell the consultant. It seems to have advanced yet further. I am back off in a fewe minutes - five minutes of calm before the say begins again. Lets see what today brings.
A few moments of peace and quiet.
There have been times this week that have been truly unbearable and times that have taken me to the limit. The joy and relief of Monday's start to radiotherapy. Dreadful tuesday when shoe could have so easily died and then talk of palliative and introduction to the palliative consultant. MDT meeting on wednesday when a traceostomy was put on the table, along with 'do nothing and die in a few weeks', finalising wills on thursday and arranging a marriage at short notice the same day, surgery friday, emhasima(sp) and another surgery late at night, it's been a rollercoaster of a week.
But today I went early and when I turned the corner of the ward, there she was. made up, face done, hair in place, lipstick on looking radiant. Her smile took my breath away and made my heart soar. IforB, you are so right it made my heart burst. As long as there is hope and determination there is a chance. A big thumbs up from the trac team, all is OK, her breathing, bar the odd bit of congestion which is distressing to watch, it's been a joyfully peaceful day. The lawyer who made our wills came to see us today to get the last bits and pieces signed off. She seemed truly moved and close to tears. It made me feel very humble the way my beautiful lass smiled and say thankyou. I know she's my lass and I know I am probably more than a little biased, but I think she is amazing and this week, beneath all the pain, anxiety, discomfort and stress, I see something else in it;s unadulterated form. She is so strong, she has such resolve and determination it's awe inspiring. sometimes I just stand and stare and think to myself how do you do it? But she does, time and time again. She made me laugh, now she can't speak, she thinks that I should do all the speaking and tell her how I feel. That wasn't easy, but in doing so it helped me make sense of my own shock this week. I had a big big wobble and now I understand it more. That's have the battle with this thing; understanding how it makes you change the way you think and behave. I see it in simplve things like driving. I drive very slowly at the moment, it;s almost as if my brain needs to process every gear change and be extra observant as it knows that I am under extreme stress. At one level it's in 'shock', but at another it knows that and compenssates accordingly. There are so many examples this week of this happening, it's actually very reassuring, my in built compensating systems are working!
Anyway, the first peaceful and relaxed breathing night in a very long time. Saturday night and all I wan going to do in a few minutes is go to sleep. Bliss. the arms of Morpheus beckon and I cannot wait. Night all.
There have been times this week that have been truly unbearable and times that have taken me to the limit. The joy and relief of Monday's start to radiotherapy. Dreadful tuesday when shoe could have so easily died and then talk of palliative and introduction to the palliative consultant. MDT meeting on wednesday when a traceostomy was put on the table, along with 'do nothing and die in a few weeks', finalising wills on thursday and arranging a marriage at short notice the same day, surgery friday, emhasima(sp) and another surgery late at night, it's been a rollercoaster of a week.
But today I went early and when I turned the corner of the ward, there she was. made up, face done, hair in place, lipstick on looking radiant. Her smile took my breath away and made my heart soar. IforB, you are so right it made my heart burst. As long as there is hope and determination there is a chance. A big thumbs up from the trac team, all is OK, her breathing, bar the odd bit of congestion which is distressing to watch, it's been a joyfully peaceful day. The lawyer who made our wills came to see us today to get the last bits and pieces signed off. She seemed truly moved and close to tears. It made me feel very humble the way my beautiful lass smiled and say thankyou. I know she's my lass and I know I am probably more than a little biased, but I think she is amazing and this week, beneath all the pain, anxiety, discomfort and stress, I see something else in it;s unadulterated form. She is so strong, she has such resolve and determination it's awe inspiring. sometimes I just stand and stare and think to myself how do you do it? But she does, time and time again. She made me laugh, now she can't speak, she thinks that I should do all the speaking and tell her how I feel. That wasn't easy, but in doing so it helped me make sense of my own shock this week. I had a big big wobble and now I understand it more. That's have the battle with this thing; understanding how it makes you change the way you think and behave. I see it in simplve things like driving. I drive very slowly at the moment, it;s almost as if my brain needs to process every gear change and be extra observant as it knows that I am under extreme stress. At one level it's in 'shock', but at another it knows that and compenssates accordingly. There are so many examples this week of this happening, it's actually very reassuring, my in built compensating systems are working!
Anyway, the first peaceful and relaxed breathing night in a very long time. Saturday night and all I wan going to do in a few minutes is go to sleep. Bliss. the arms of Morpheus beckon and I cannot wait. Night all.
A moment of calm and serenity ...
Well another day another procedure... Well actually no, not today. Start again. Another day, a day of mostly rest. Yay. Mostly rest, a few unpleasant moments of side effects from the surgical emphasyma(sp) and a few very unwatchable moments of deep suctioning, but apart from that all is good in mistress feisty's hospital bed. She's doing OK, tolerated an 8 pain most of the day with little more than paracetamol and piddly doses of oralmorph. Finally managed to talk of stuff other than cancer and managed to talk about our business and plenty of other things besides. Tomorrow I need to be there early again as she is expecting a visit from a number of different consultants so it will be good to be present. I just hope the 'GUPPY' (Give up it's pointless persevering You know) consultant does not grace us with her presence. Apart from that all is fine and dandy. Bloody hell this thing is absolutely knackering though and it leaves no rest of any kind for either of us.
Tomorrow is another day. I expect nothing, I plan for nothing, I live in hope of positive news and a further step forward. Thanks IforB, you have no idea how much your support helped me this week. In my darkest hour you flicked a logic switch that helped me see a different way forward. I am in your debt. And to everyone else who offers their kindness, though I may not reply in person, please know that from the bottom of my heart I am both touched and bouyed by your compassion, understanding and support. For many reasons there are few places I can turn to for help and PH has been a bedrock for me. I am in your debt too.
Ali, thanks for listening this evening. Sorry if I haven't spoken to you more often, but I find it hard to talk openly about this. God knows I want to talk face to face but I fear I won't ever be able to come back from what I know will happen when I start. Now is not the time. But thank you so much for even offering. You are a great friend and I love you dearly.
Well another day another procedure... Well actually no, not today. Start again. Another day, a day of mostly rest. Yay. Mostly rest, a few unpleasant moments of side effects from the surgical emphasyma(sp) and a few very unwatchable moments of deep suctioning, but apart from that all is good in mistress feisty's hospital bed. She's doing OK, tolerated an 8 pain most of the day with little more than paracetamol and piddly doses of oralmorph. Finally managed to talk of stuff other than cancer and managed to talk about our business and plenty of other things besides. Tomorrow I need to be there early again as she is expecting a visit from a number of different consultants so it will be good to be present. I just hope the 'GUPPY' (Give up it's pointless persevering You know) consultant does not grace us with her presence. Apart from that all is fine and dandy. Bloody hell this thing is absolutely knackering though and it leaves no rest of any kind for either of us.
Tomorrow is another day. I expect nothing, I plan for nothing, I live in hope of positive news and a further step forward. Thanks IforB, you have no idea how much your support helped me this week. In my darkest hour you flicked a logic switch that helped me see a different way forward. I am in your debt. And to everyone else who offers their kindness, though I may not reply in person, please know that from the bottom of my heart I am both touched and bouyed by your compassion, understanding and support. For many reasons there are few places I can turn to for help and PH has been a bedrock for me. I am in your debt too.
Ali, thanks for listening this evening. Sorry if I haven't spoken to you more often, but I find it hard to talk openly about this. God knows I want to talk face to face but I fear I won't ever be able to come back from what I know will happen when I start. Now is not the time. But thank you so much for even offering. You are a great friend and I love you dearly.
Another peaceful day yesterday. I'm stuck at home today with some kind of bug, so the last thing I want to do is give her the lurgy.. Anyway, late yesterday evening her consultant surgeon came to visit and it was all positive. Trac in place doing its job nicely, breathing improving by the day. Slight problem with the feeding tube, it seems to have developed some kind of fracture whereby all that goes in them comes out again. So it's probably off to IR (Interventional Radiology) to have the tube changed. Rather important this tube as it is her means of getting calories. Fortunately it broke yesterday after her first feed, so at least she has 1200 cals. So back on saline last night through the picc and hopefully today the feeding tube will be sorted. She needs her 2400 cals a day in readines for radiotherapy. If there was some way of giving her some of mine, she'd be more than welcome to 10,000 or so - hospital sandwichs are not great for the waistline. No sign of the GUPPY. Good, hopefully she gets the message that she's not wanted!
I am bugged up at the moment and feeling mentally knackered as well so I'm not planning to see her today. The last thing she needs is the lurgy. Anyway, I called the ward and she's having a much better day and is improving nicely. All good.
It made me laugh, after putting the phone down, two minutes later I received a call from her nurse - She says eat well and take some rest. Daft bird my missus, she should be thinking about herself, not me. Anyway. faced with a choice of resting and tidying up a house that looks like a bomb site and at the moment the rest wins. It's odd really, it's only now, after the chaos of last week and the fact that I know she's recovering nicely, do I switch off enough to realise i'm feeling utterly crap myself. This time it's the body not the mind playing games. Lemsip, stew and rest beckon. Perhaps it;s a good time to recharge my own batteries.
No marriage yet. If I can, I will defer it to do it properly. Let me see what the next few days bring. the licence is valid for three more weeks.
It made me laugh, after putting the phone down, two minutes later I received a call from her nurse - She says eat well and take some rest. Daft bird my missus, she should be thinking about herself, not me. Anyway. faced with a choice of resting and tidying up a house that looks like a bomb site and at the moment the rest wins. It's odd really, it's only now, after the chaos of last week and the fact that I know she's recovering nicely, do I switch off enough to realise i'm feeling utterly crap myself. This time it's the body not the mind playing games. Lemsip, stew and rest beckon. Perhaps it;s a good time to recharge my own batteries.
No marriage yet. If I can, I will defer it to do it properly. Let me see what the next few days bring. the licence is valid for three more weeks.
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