The waiting is the hardest bit
Discussion
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.
Her tumour seems to have taken on all the best features of your lady - stubborness and determination to hang on there as long as it can - sorry for my black 'humour' but that suddenlty struck me when I read it bled rather than be endoscoped.
Seriously, like others here, I may not reply always but my thoughts and crossed everything are always with you both.
Seriously, like others here, I may not reply always but my thoughts and crossed everything are always with you both.
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.
I'm late to this thread and have spent the last couple of days reading through.
I commend you for sharing such a personal and heart wrenching part of your life, you have written it so beautifully, heart breaking at times, warm and yet so full of pain and frustration, and full of love for your partner.
I will follow your updates from now on. I got my partner to also read this and it made him cry.
Sending you and yours the warmest of wishes and good luck.
I commend you for sharing such a personal and heart wrenching part of your life, you have written it so beautifully, heart breaking at times, warm and yet so full of pain and frustration, and full of love for your partner.
I will follow your updates from now on. I got my partner to also read this and it made him cry.
Sending you and yours the warmest of wishes and good luck.
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.
Sleep well. Even for a hardened git like me, that brought a tear to my eye and a lump to my throat.
You are both doing brilliantly, I know it doesn't feel like it sometimes, but you are. I've seen plenty of "strong" people turn into basket cases at the mention of the word cancer and others who you'd never imagine they had it in them display strength that defies belief. You two are being tested and no matter what the future might bring, you are both passing the test with flying colours.
Well done and keep it up.
You are both doing brilliantly, I know it doesn't feel like it sometimes, but you are. I've seen plenty of "strong" people turn into basket cases at the mention of the word cancer and others who you'd never imagine they had it in them display strength that defies belief. You two are being tested and no matter what the future might bring, you are both passing the test with flying colours.
Well done and keep it up.
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.
You do not need to feel in debt to any of us on PH. If posting on here helps to put your feelings and what is happening in to some form of clarity then those of us that are following your thread I am sure are more than happy to read and listen and help you where we can.
My thoughts are with you today and every day.
My thoughts are with you today and every day.
Granville said:
You do not need to feel in debt to any of us on PH. If posting on here helps to put your feelings and what is happening in to some form of clarity then those of us that are following your thread I am sure are more than happy to read and listen and help you where we can.
My thoughts are with you today and every day.
Exactly.My thoughts are with you today and every day.
You don't owe me nor anyone else any debt DMN. I'm just glad I could be of some assistance and I'm sure everyone else is the same.
Keep it up, I'm really proud of you both and if the GUPPY opens her mouth and suggests anything like that, you have my permission to ask her to go away and never come back.
Edited by IforB on Tuesday 28th September 13:15
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