The waiting is the hardest bit
Discussion
... the patterns of daily life....
If you had told me several weeks ago that cancer would come into our lives so suddenly I would have not comprehended it. There is something reassuring in all of this, that no matter how horrible the initial shock is,it passes quickly and life takes on a series of pragmatic steps.
The picc line is in, the feeding tube will be placed today and our chemo meet and greet session is scheduled for the beginning of next week, along with the session on how to looking after the feeding aparatus and feeding regimes.
I was thinking about all of this yesterday and just how complex the managing of cancer is for those surrounding us. We are very close to a family with a teen and a ten year old and it takes great care and careful thinking in being able to help them come to terms with and understand their own feelings. It will be much easier next week when they can see my lass at home and have the conversation face to face. Yet again I come fact to face with the cancer monster. Not in me, but in the eyes of those who, even at a young age live in constant fear of it. It's the word itself that is the issue - the word that comes loaded with fear and perceptions that just aren't there when you talk about other disease processes.. and it's just that, simply a process just like any other disease. Anyway, they know they can knock on the door any time of day or night to talk to us about their worries or concerns and we want them to have no fears or hidden worries about any of this. Definately humour is the way ahead and talking about my lass to them, telling them about the antics she got up to at their age lifts them and makes all of this much easier. For the moment they are in a good place.
It's not the kids I worry about, it's the adults and the complexities of friends and family wanting to 'help' someone who for her whole life has been fiercely independant and strong willed. Keeping them at arms length so she/we can go through this in the way we need to is a challenge and it's going to be hard to do.
As for the chemo, well that starts soon enough. Practicalities abound - need to find a bed that tilts so she can be semi upright whilst feeding at night and normal life goes on. Funny, today feels like the last day of life on hold. Mentally, life goes back to normal tomorrow and I sense a big change in me over this and a big change in her to. Time to kick arse, get things in place and take logical steps forwards - and yesterday she made me laugh ... 'a hospital bed is no place to ask me to marry you...'
I see, what ever you say my darling. Bugger, now I have to try and do the romantic thing.. Mental note to self, find somewhere special to propose 'properly'. Cancer, f
k you. Proposing properly... now i'm properly scared.
If you had told me several weeks ago that cancer would come into our lives so suddenly I would have not comprehended it. There is something reassuring in all of this, that no matter how horrible the initial shock is,it passes quickly and life takes on a series of pragmatic steps.
The picc line is in, the feeding tube will be placed today and our chemo meet and greet session is scheduled for the beginning of next week, along with the session on how to looking after the feeding aparatus and feeding regimes.
I was thinking about all of this yesterday and just how complex the managing of cancer is for those surrounding us. We are very close to a family with a teen and a ten year old and it takes great care and careful thinking in being able to help them come to terms with and understand their own feelings. It will be much easier next week when they can see my lass at home and have the conversation face to face. Yet again I come fact to face with the cancer monster. Not in me, but in the eyes of those who, even at a young age live in constant fear of it. It's the word itself that is the issue - the word that comes loaded with fear and perceptions that just aren't there when you talk about other disease processes.. and it's just that, simply a process just like any other disease. Anyway, they know they can knock on the door any time of day or night to talk to us about their worries or concerns and we want them to have no fears or hidden worries about any of this. Definately humour is the way ahead and talking about my lass to them, telling them about the antics she got up to at their age lifts them and makes all of this much easier. For the moment they are in a good place.
It's not the kids I worry about, it's the adults and the complexities of friends and family wanting to 'help' someone who for her whole life has been fiercely independant and strong willed. Keeping them at arms length so she/we can go through this in the way we need to is a challenge and it's going to be hard to do.
As for the chemo, well that starts soon enough. Practicalities abound - need to find a bed that tilts so she can be semi upright whilst feeding at night and normal life goes on. Funny, today feels like the last day of life on hold. Mentally, life goes back to normal tomorrow and I sense a big change in me over this and a big change in her to. Time to kick arse, get things in place and take logical steps forwards - and yesterday she made me laugh ... 'a hospital bed is no place to ask me to marry you...'
I see, what ever you say my darling. Bugger, now I have to try and do the romantic thing.. Mental note to self, find somewhere special to propose 'properly'. Cancer, f
k you. Proposing properly... now i'm properly scared.Edited by drivin_me_nuts on Friday 18th June 13:21
Monday morning and the start of what is going to be a difficult week. We have to tell her family this week, sisters and a brother miles away need to know what is happening, we meet the chemo nurses and on top of all of this they are still to fit her with a feeding tube as thursday went poorly and no matter how much they made her bleed, they could still not put the marker down the back of her throat to find her stomach.
Apart from all this, she is in good spirits and we are (upper GI surgeons compliant!) still planning for her to come home in the middle to end of the week. SO much to do, before chemo starts in terms of mental preparation and we need to do it alone and quiet. The hardest part is definately family - they quite literally kill you with kindness. Sometimes you just need to be left alone to do your own thing and sometimes to do that you can come across as being selfish. But you do what you need to survive and sod the rest.
At least the waiting bit is almost over and things start to happen soon. I used to think that I was more right brained than left i.e. my emotive and kinesthetic side was slightly more dominant. Actually I realise now it isn't. Logic and pragmatism win out. Oh well, not that i'm wishing life away, but roll on the end of the week.
Apart from all this, she is in good spirits and we are (upper GI surgeons compliant!) still planning for her to come home in the middle to end of the week. SO much to do, before chemo starts in terms of mental preparation and we need to do it alone and quiet. The hardest part is definately family - they quite literally kill you with kindness. Sometimes you just need to be left alone to do your own thing and sometimes to do that you can come across as being selfish. But you do what you need to survive and sod the rest.
At least the waiting bit is almost over and things start to happen soon. I used to think that I was more right brained than left i.e. my emotive and kinesthetic side was slightly more dominant. Actually I realise now it isn't. Logic and pragmatism win out. Oh well, not that i'm wishing life away, but roll on the end of the week.
Chemo intro day...
Friendly place, lovely nurses, comfy reclining chairs and some lovely lass to massage your hands and make you feel a bit special. Cool cap ordered and seen in action - sorry, but it did make me giggle at watching the contraption go on some other lass's head. -5 for about half an hour before and a half an hour afterwards. Funky. Think Mars attacks and you're not far off.
Food arrives tomorrow, chemo set for the end of next week, surgery tomorrow morning (finally!) for the feeding tube. Home at the weekend? One can only hope. (or course the downside is I now have to clean the house which it's fair to say looks like a bloke's house after a fight with the clothes rack, and more clutter than any table can stand. Ho hum, now does anyone know how to remove a sock from the bendy bit of a hover? Break the news day tomorrow. Big drama's, tears and trantrums to follow. Just as well we know what we are doing already as I have a feeling they sure as hell are not going to make it easy for us.
Wig shop needs to be added to the do list, as for scarves, well personally i've always had a thing for bald headed women under scarves. I shall kiss it every day and tell it that it's the most beautiful head I know.
Sleep beckons ...
Friendly place, lovely nurses, comfy reclining chairs and some lovely lass to massage your hands and make you feel a bit special. Cool cap ordered and seen in action - sorry, but it did make me giggle at watching the contraption go on some other lass's head. -5 for about half an hour before and a half an hour afterwards. Funky. Think Mars attacks and you're not far off.
Food arrives tomorrow, chemo set for the end of next week, surgery tomorrow morning (finally!) for the feeding tube. Home at the weekend? One can only hope. (or course the downside is I now have to clean the house which it's fair to say looks like a bloke's house after a fight with the clothes rack, and more clutter than any table can stand. Ho hum, now does anyone know how to remove a sock from the bendy bit of a hover? Break the news day tomorrow. Big drama's, tears and trantrums to follow. Just as well we know what we are doing already as I have a feeling they sure as hell are not going to make it easy for us.
Wig shop needs to be added to the do list, as for scarves, well personally i've always had a thing for bald headed women under scarves. I shall kiss it every day and tell it that it's the most beautiful head I know.
Sleep beckons ...
Word on the cold cap - it is the greatest item of torture invented by man for woman to suffer - but is worth it I promise - I lost a lot of my hair but kept some, and now it's growing back - SO slowly!! - I look at it and think at least I had a 'head' start.
It first goes on - not too bad - then the cold starts to take effect on your head - the first 20 minutes are hell on earth - I was screaming and swearing for someone to take it off. BUT - like yours, our chemo unit had a complementary therapist who sat patiently with me massaging my feet, telling me I'd gone another minute and just to go one more for her... and after 20 minutes, I could bear it and I'm so glad I did. It's not easy, and it delays the time you're in the unit as you say because of the need to cool down and stay cool before and after - I recall longer than 30 minutes after so be warned - this seemed to vary from nurse to nurse, but it can be worth it.
good luck!!
It first goes on - not too bad - then the cold starts to take effect on your head - the first 20 minutes are hell on earth - I was screaming and swearing for someone to take it off. BUT - like yours, our chemo unit had a complementary therapist who sat patiently with me massaging my feet, telling me I'd gone another minute and just to go one more for her... and after 20 minutes, I could bear it and I'm so glad I did. It's not easy, and it delays the time you're in the unit as you say because of the need to cool down and stay cool before and after - I recall longer than 30 minutes after so be warned - this seemed to vary from nurse to nurse, but it can be worth it.
good luck!!
Losing your hair matters so much to some and not at all to others. I suppose being a bloke helped me because when mine started to fall out I didn't give 2 hoots and just got the razor out.
I actually enjoyed not having to shave or go to the barbers etc. Though when ALL of your hair falls out, it is mildly disconcerting. Especially when you have no asre hair and let's just say things get a bit sweaty...!
DMN, you sound like you are both handling it really well. Keep it up, but don't worry if there are wobbles along the way, everyone has them occasionally.
I actually enjoyed not having to shave or go to the barbers etc. Though when ALL of your hair falls out, it is mildly disconcerting. Especially when you have no asre hair and let's just say things get a bit sweaty...!
DMN, you sound like you are both handling it really well. Keep it up, but don't worry if there are wobbles along the way, everyone has them occasionally.
Edited by IforB on Wednesday 23 June 17:32
Thanks for the advice - and especially Nina thank you for your experience. Today was both a good day and a bad day and mentally draining. In fact, part of the reason for writing 'this entry' (is this a diary, i'm not sure any more) is that it helps me declutter what is actually a very cluttered brain.
Well a feeding tube is fitted and in 24 hours or so my lass gets to use it properly. Finally her electrolyte levels have stabalised and in effect since the start of refeeding she is just about reaching the point of a healthy daily flow rate intake. So a big yay to electrolytes and the nutrition specialist who has been ace throughout all of this.
As for breaking the news to relatives. Well in some ways that was easier than I thought, tears and sadness and after the initial shock of the diagnosis day and the grieving surrounding this it will get better. For the rellies back home this is so painful and when her sister told them, it is very needless to say very difficult. This makes me so sad even writing this to think that somewhere out there in the world there are sisters and borthers who are sobbing their heart out at not being able to see their 'baby sister' and not being able to do anything about it. I feel so sad for them and I know they need time to come to terms with all of this. It is a huge shock to take on board and it will take time to calm down. Nothing I can do about that I suppose.
Ever get those days when your head feel numb? Numb from relief of saying things, but also numb from the effort in saying it as it is. A bit punch drunk - got a good friend to speak to soon to make me laugh and I so need a decent cup of Yorkshire tea - hospital tea is 'orrible. Good night world, thanks for listening. Tomorrow will be a very positive day. 3 sleeps till she comes home. Problem. Do I clean the house now in the knowledge that it will be a tip again soon and i'll have to clean it again before she comes home, or do I wait until 5 minutes before she comes home, have a mad panic and do just enough. Damnit, being male at times is just so much hard work. Find Freedy Mercury CD, adorn pini and mop the floor..... tomorrow......
Well a feeding tube is fitted and in 24 hours or so my lass gets to use it properly. Finally her electrolyte levels have stabalised and in effect since the start of refeeding she is just about reaching the point of a healthy daily flow rate intake. So a big yay to electrolytes and the nutrition specialist who has been ace throughout all of this.
As for breaking the news to relatives. Well in some ways that was easier than I thought, tears and sadness and after the initial shock of the diagnosis day and the grieving surrounding this it will get better. For the rellies back home this is so painful and when her sister told them, it is very needless to say very difficult. This makes me so sad even writing this to think that somewhere out there in the world there are sisters and borthers who are sobbing their heart out at not being able to see their 'baby sister' and not being able to do anything about it. I feel so sad for them and I know they need time to come to terms with all of this. It is a huge shock to take on board and it will take time to calm down. Nothing I can do about that I suppose.
Ever get those days when your head feel numb? Numb from relief of saying things, but also numb from the effort in saying it as it is. A bit punch drunk - got a good friend to speak to soon to make me laugh and I so need a decent cup of Yorkshire tea - hospital tea is 'orrible. Good night world, thanks for listening. Tomorrow will be a very positive day. 3 sleeps till she comes home. Problem. Do I clean the house now in the knowledge that it will be a tip again soon and i'll have to clean it again before she comes home, or do I wait until 5 minutes before she comes home, have a mad panic and do just enough. Damnit, being male at times is just so much hard work. Find Freedy Mercury CD, adorn pini and mop the floor..... tomorrow......
No problem - so glad to help even if only in a very minor way. Another thought occurred during the night - I never actually wore my wig but my own hair when I felt brave and hats when I didn't! Contact Sandra Rook at bonnytonhats.co.uk - she's been thru chemo herself and altho her website I don't think is great, she's very helpful and sends sample hat styles and fabric swatches after she's spoken to you and established what kind of thing you like.
I also bought hats on ebay - I found the seller in my old feedback - have a look at item 390193985081 - I had a couple of these in varying designs and people always commented favourably when I wore them. I've actually kept my favourite in case I need it again - my chances of secondaries are unfortunately quite high- but we don't go there!!
One other thing - looking forward a bit - is Hospices of Hope in Kent take unwanted wigs et al when you're done with them and send to Romania for ladies there who have a pretty rough time with chemo after care.
Do keep posting - I kept a blog while I was going thru this and it helped me a lot, even when I was very low - somehow outpouring in a tangible way seemed to help. You and your lady are obviously going thru a really stty time and any way of releasing some of the tension helps you and you've got lots of people on here gunning for you so don't leave us!!
I also bought hats on ebay - I found the seller in my old feedback - have a look at item 390193985081 - I had a couple of these in varying designs and people always commented favourably when I wore them. I've actually kept my favourite in case I need it again - my chances of secondaries are unfortunately quite high- but we don't go there!!
One other thing - looking forward a bit - is Hospices of Hope in Kent take unwanted wigs et al when you're done with them and send to Romania for ladies there who have a pretty rough time with chemo after care.
Do keep posting - I kept a blog while I was going thru this and it helped me a lot, even when I was very low - somehow outpouring in a tangible way seemed to help. You and your lady are obviously going thru a really s
tty time and any way of releasing some of the tension helps you and you've got lots of people on here gunning for you so don't leave us!! Edited by Broomsticklady on Thursday 24th June 14:25
Eating!
Yes, yes yes. Food, calories, meals, down a plug hole into the tum! Lots of strange gurgling sounds, slight discomfort, but a deep sense of satisfaction. Bye bye to three baxter pumps, potassium, sodium and Hartmann solutions.. Food and drink through a simple tube. A small, but a huge step forwards in all of this. Weekend exit? looking promising....
Funny how people react now that a few know. Friends shake my hands with the solmenity of greating the family of the deceased. Please stop it people, it really is a tad too dramatic for my liking and actually slightly annoying. She ain't going anywhere and she certainly isn't dead yet. Now can we talk about the football or something else please - it's not that I don't mind talking about it, i'm more than OK with it, but there is more to life than cancer and it's actually quite a boring conversation after a while. Life doesn't revolve around us so please, next time lets talk about other stuff and some other peoples lives.
I sat on the bed, rubbed her feet, told her a silly story before I left and dozed off on the bed with her for ten minutes whilst she held my hand. Soon we'll be doing the same on the sofa and these few weeks will be now't but a fading memory. I can't wait. Good night world, thanks for today, it's been a goodun.
Yes, yes yes. Food, calories, meals, down a plug hole into the tum! Lots of strange gurgling sounds, slight discomfort, but a deep sense of satisfaction. Bye bye to three baxter pumps, potassium, sodium and Hartmann solutions.. Food and drink through a simple tube. A small, but a huge step forwards in all of this. Weekend exit? looking promising....
Funny how people react now that a few know. Friends shake my hands with the solmenity of greating the family of the deceased. Please stop it people, it really is a tad too dramatic for my liking and actually slightly annoying. She ain't going anywhere and she certainly isn't dead yet. Now can we talk about the football or something else please - it's not that I don't mind talking about it, i'm more than OK with it, but there is more to life than cancer and it's actually quite a boring conversation after a while. Life doesn't revolve around us so please, next time lets talk about other stuff and some other peoples lives.
I sat on the bed, rubbed her feet, told her a silly story before I left and dozed off on the bed with her for ten minutes whilst she held my hand. Soon we'll be doing the same on the sofa and these few weeks will be now't but a fading memory. I can't wait. Good night world, thanks for today, it's been a goodun.
Home.
A bit sore everywhere, feeding tube is time consuming for now until we get more practice. Sleep beckons for her. 2 weeks on a ward and I thnk she is in desperate need of a few proper nights sleep.
For the first time in 3 weeks, something resembling normality returns. The sense of inner relief is palpable.
A very good day. (also the first time i've felt like having a glass of wine and a felt any inclination to cook something for myself. Tuna spag beckons with a shiraz or two). Have a great weekend all.
A bit sore everywhere, feeding tube is time consuming for now until we get more practice. Sleep beckons for her. 2 weeks on a ward and I thnk she is in desperate need of a few proper nights sleep.
For the first time in 3 weeks, something resembling normality returns. The sense of inner relief is palpable.
A very good day. (also the first time i've felt like having a glass of wine and a felt any inclination to cook something for myself. Tuna spag beckons with a shiraz or two). Have a great weekend all.
I've read this thread a few times over that past days, its been really interesting seeing the OP's reaction to things - I have been impressed by your attitude, and it makes (take this in the good way its intended) a good read.
But its odd how I've just read most of it again and taken it in a little bit more, as my Dads justs told me this weekend that he may have Bowel Cancer, which is what got his Dad. I have absolutely no idea how it all works, and I think he's picked up whatever 'it' is really early, and there other options (hes had other problems with his bowel before, ulcers etc, but I think he's now waiting to gave a biopsy to check it, apparently theres some kind of time limit as to how long this will take (2 weeks? I dont know). So everything kind of went really serious all of a sudden, and I mainly felt a bit of a tit because I forgot to send him a fathers day car last week. Also he conveniently waited till I had absolutely panned him at 30 minutes of Karting, and completely put a stop to all my ribbing, the sod.
So yeah, please keep updating this, as I'll be even more interested to read it now. I dont really know what I'm supposed to though.
But its odd how I've just read most of it again and taken it in a little bit more, as my Dads justs told me this weekend that he may have Bowel Cancer, which is what got his Dad. I have absolutely no idea how it all works, and I think he's picked up whatever 'it' is really early, and there other options (hes had other problems with his bowel before, ulcers etc, but I think he's now waiting to gave a biopsy to check it, apparently theres some kind of time limit as to how long this will take (2 weeks? I dont know). So everything kind of went really serious all of a sudden, and I mainly felt a bit of a tit because I forgot to send him a fathers day car last week. Also he conveniently waited till I had absolutely panned him at 30 minutes of Karting, and completely put a stop to all my ribbing, the sod.
So yeah, please keep updating this, as I'll be even more interested to read it now. I dont really know what I'm supposed to though.
Edited by snotrag on Sunday 27th June 19:16
Its so moving to hear your story. Things will be hard for a while, but they will get better and before you know it, it will something that you both will regard as a stage of your lives. She sounds so brave and has you there for her...little tip...new hand bag and shoes will take her mind off the wig stage :P sure she wont mind me hinting at that. Good luck to both of you 
x
xSnotrag, I hope that what your father has is nothing more inconvenient than another ulcer, I wish him and you the best. The worst thing with this is definately the undcertainty of not knowing. If there is one thing that I have learned over the last few weeks is never be afraid of letting your mind go where your mind wants to go. After a little while you'll find that you come out the other side and then your mind will be calmer and you will feel a lot more in control and the anxiety of worry far less than it might be at the moment.
There is someting very hard in this and it is nothing to do with us. It is when you tell others whose loved ones have been through cancer. I see it in their eyes, it is as if the pain and tourment of their own loss gets relived once again. It is almost as if you don't want anyone to know for fear of inflicting more suffering onto them.
It is strange how other things come to pass as well. Guilt is a curious one that I have been aware of over the last few days but today I think I finally found an answer. Eating. I have not been eating 'properly' because I felt so guilty about her not being able to do so. I mentioned it yesterday and today we ate together, in so far as whilst I ate my diner she was tube feeding her meal. Odd how little things make a difference. Just one more precious gem in creating normality. Of well, the stoma is healing, albeit still painful. Every day gets a little easier and I am sure it won't be long before the process of feeding - i.e. the protocol of the feeding machine becomes normal.
Thw wierdest day in all of this was the day I told here sister. It felt almost unreal - quite literally I thought I was in some kind of weird dream and I was expecting to wake up as if it was a bad dream. I've never experienced that feeling ever before and it is best described as having the kind of head you get when you've had a few drinks - enough to alter perception slightly, but not enough to feel drunk. Very odd and not nice at all.
Oh well, chemo at the end of the week and lots to do in the mean time. It's been blisfully quiet this weekend - no hard phone calls and the world has left us alone to just do what we do best.
I know this is a blokey forum and such things aren't talked about, but I feel so lucky. I worked out the other day what gets me through this, what gives me the strength to stay positive and calm. It is that I think I am truly blessed. No matter what happens, good or not so good, I am truly blessed in my life to have experienced unconditional love. I can count on the fingers of one hand the number of long term relationships that I know. At the moment she is sitting on a chair opposite me reading and I look at her and all I feel is love. I am in love, I have been for 22 odd years, in ways I only begin to understand now. She is my strength and my life, she is my one true love and she gives me the strength to get through this day by day. I think she knows I love her, I tell her every day, but I wish she could reach into my heart to know just how much she means to me. One day i'll find the words - god knows, in all these years I've never got beyond 'i love you' and every day it's getting more and more lame! Where are the great poets when you need them eh? Where are the wordsmiths and the creators of written art? My darling girl, I love you more than life itself. Stay strong for the both of us and I will be strong for you till the day I die.
There is someting very hard in this and it is nothing to do with us. It is when you tell others whose loved ones have been through cancer. I see it in their eyes, it is as if the pain and tourment of their own loss gets relived once again. It is almost as if you don't want anyone to know for fear of inflicting more suffering onto them.
It is strange how other things come to pass as well. Guilt is a curious one that I have been aware of over the last few days but today I think I finally found an answer. Eating. I have not been eating 'properly' because I felt so guilty about her not being able to do so. I mentioned it yesterday and today we ate together, in so far as whilst I ate my diner she was tube feeding her meal. Odd how little things make a difference. Just one more precious gem in creating normality. Of well, the stoma is healing, albeit still painful. Every day gets a little easier and I am sure it won't be long before the process of feeding - i.e. the protocol of the feeding machine becomes normal.
Thw wierdest day in all of this was the day I told here sister. It felt almost unreal - quite literally I thought I was in some kind of weird dream and I was expecting to wake up as if it was a bad dream. I've never experienced that feeling ever before and it is best described as having the kind of head you get when you've had a few drinks - enough to alter perception slightly, but not enough to feel drunk. Very odd and not nice at all.
Oh well, chemo at the end of the week and lots to do in the mean time. It's been blisfully quiet this weekend - no hard phone calls and the world has left us alone to just do what we do best.
I know this is a blokey forum and such things aren't talked about, but I feel so lucky. I worked out the other day what gets me through this, what gives me the strength to stay positive and calm. It is that I think I am truly blessed. No matter what happens, good or not so good, I am truly blessed in my life to have experienced unconditional love. I can count on the fingers of one hand the number of long term relationships that I know. At the moment she is sitting on a chair opposite me reading and I look at her and all I feel is love. I am in love, I have been for 22 odd years, in ways I only begin to understand now. She is my strength and my life, she is my one true love and she gives me the strength to get through this day by day. I think she knows I love her, I tell her every day, but I wish she could reach into my heart to know just how much she means to me. One day i'll find the words - god knows, in all these years I've never got beyond 'i love you' and every day it's getting more and more lame! Where are the great poets when you need them eh? Where are the wordsmiths and the creators of written art? My darling girl, I love you more than life itself. Stay strong for the both of us and I will be strong for you till the day I die.
drivin_me_nuts said:
I know this is a blokey forum and such things aren't talked about, but I feel so lucky. I worked out the other day what gets me through this, what gives me the strength to stay positive and calm. It is that I think I am truly blessed. No matter what happens, good or not so good, I am truly blessed in my life to have experienced unconditional love. I can count on the fingers of one hand the number of long term relationships that I know. At the moment she is sitting on a chair opposite me reading and I look at her and all I feel is love. I am in love, I have been for 22 odd years, in ways I only begin to understand now. She is my strength and my life, she is my one true love and she gives me the strength to get through this day by day. I think she knows I love her, I tell her every day, but I wish she could reach into my heart to know just how much she means to me. One day i'll find the words - god knows, in all these years I've never got beyond 'i love you' and every day it's getting more and more lame! Where are the great poets when you need them eh? Where are the wordsmiths and the creators of written art? My darling girl, I love you more than life itself. Stay strong for the both of us and I will be strong for you till the day I die.
You know what? She knows, you know. We women have this gut instinct, seventh sense, call it what you will. Words aren't needed, it's how you look at her, it's how you subconsciously turn to her in your sleep, it's the little smile you give when the same thought goes thru both minds at once. The 'tangible' things don't matter - yes a bunch of flowers is nice on occasion, but it's the little things you do and say which say it all without you even knowing it. My poor husband of 32 years and 5 years togethe rbefore that(cradle snatcher that he was!) puts it that "I cut, you bleed". She'll be keeping going more for you than her - just don't go letting her down - carry on as you are!! Broomsticklady said:
drivin_me_nuts said:
I know this is a blokey forum and such things aren't talked about, but I feel so lucky. I worked out the other day what gets me through this, what gives me the strength to stay positive and calm. It is that I think I am truly blessed. No matter what happens, good or not so good, I am truly blessed in my life to have experienced unconditional love. I can count on the fingers of one hand the number of long term relationships that I know. At the moment she is sitting on a chair opposite me reading and I look at her and all I feel is love. I am in love, I have been for 22 odd years, in ways I only begin to understand now. She is my strength and my life, she is my one true love and she gives me the strength to get through this day by day. I think she knows I love her, I tell her every day, but I wish she could reach into my heart to know just how much she means to me. One day i'll find the words - god knows, in all these years I've never got beyond 'i love you' and every day it's getting more and more lame! Where are the great poets when you need them eh? Where are the wordsmiths and the creators of written art? My darling girl, I love you more than life itself. Stay strong for the both of us and I will be strong for you till the day I die.
You know what? She knows, you know. We women have this gut instinct, seventh sense, call it what you will. Words aren't needed, it's how you look at her, it's how you subconsciously turn to her in your sleep, it's the little smile you give when the same thought goes thru both minds at once. The 'tangible' things don't matter - yes a bunch of flowers is nice on occasion, but it's the little things you do and say which say it all without you even knowing it. My poor husband of 32 years and 5 years togethe rbefore that(cradle snatcher that he was!) puts it that "I cut, you bleed". She'll be keeping going more for you than her - just don't go letting her down - carry on as you are!! So 10 am thursday Chemo starts. What are my thoughts? Several days ago I was worried and all kinds of thoughts were milling around, but we've done some (to steal a phrase from Terry Pratchett) pretty extensive headology and both of us are in a good place. Calm, collected, ready for pretty much anything. I'm going to take along a good book, a pair of comfy slippers and do what ever needs to be done to make tomorrow easy. The staff have been sweet.
One bit of seriously cool news, eating is now full on - 2300+ cals a day, taking place day and night. BMI is off the scale at the moment. 2 weeks in hospital lost another 3 kilos on a BMI of 16! so we've got our work cut out upping it to something sensible. When the feeding tube was first mentioned, I thought it was the end of the world, but actually it might be a real blessing. Feeding through chemo at least can be direct, no drama and she can 'eat' even if she might not feel like it. All good.
Fingers crossed for tomorrow. If you don't hear from me, you know where I am! Night all
One bit of seriously cool news, eating is now full on - 2300+ cals a day, taking place day and night. BMI is off the scale at the moment. 2 weeks in hospital lost another 3 kilos on a BMI of 16! so we've got our work cut out upping it to something sensible. When the feeding tube was first mentioned, I thought it was the end of the world, but actually it might be a real blessing. Feeding through chemo at least can be direct, no drama and she can 'eat' even if she might not feel like it. All good.
Fingers crossed for tomorrow. If you don't hear from me, you know where I am! Night all
Edited by drivin_me_nuts on Wednesday 30th June 23:31
... a data with the alien ...
it went OK. No real drama, no great pain or discomfort and as of yet no real discomfort due to the drugs (which even the nurses commented at being tiny volumes because she is so small). Why the alien comment? Well the head freezing was a curious experience (and painful for the first half an hour) and she described her head for the next three hours as feeling liquified). Other than needed a number of heat pads and many blankets to keep warm it was fine. It was surprising just how busy the centre was and the hustle and bustle of people coming and going was both reassuring and at the same time saddening. Lots of bald men, a few thinning women and the effects of the steroids were apparent on more than a few.
Kids ... seem to the the hardest part of this. Listening to the stories of (especially) mums worrying about their young families and a few tears of them not being there for them. Just sitting in a corner and watching these life stories unfold was both humbling and also life affirming. The respect and the compassion that the nurses have for their patients is a joy to see - it's lovely to see someone actually get a cuddle when they are in tears and actually have someone sit with them when they talk about their worries is, in this day and age of remote and disconnected people, refreshingly wonderful. Compassion is alive and well in the UK - the oft peddled myth about this being a heartless and soulless country is just not true. This disease brings out someting sometimes rather special in people and when you see it for yourself it's rather wonderful to behold.
Feeding is interesting. It's a real juggling act to get the balance right with the various different types of food, when and how to eat them and the best way to rest. What with the drugs being connected to the Picc line for the next few days and a gastric line delivering food overnight, sleeping positions becomes restrictive. We'll learn. So far, so good. 5FU stops on monday so it's fine.
Just today, when I gave my darling a cuddle, for the first time in a long long time, there was a little less bone and a little more her. It pleases me in a way I cannot put into words.
it went OK. No real drama, no great pain or discomfort and as of yet no real discomfort due to the drugs (which even the nurses commented at being tiny volumes because she is so small). Why the alien comment? Well the head freezing was a curious experience (and painful for the first half an hour) and she described her head for the next three hours as feeling liquified). Other than needed a number of heat pads and many blankets to keep warm it was fine. It was surprising just how busy the centre was and the hustle and bustle of people coming and going was both reassuring and at the same time saddening. Lots of bald men, a few thinning women and the effects of the steroids were apparent on more than a few.
Kids ... seem to the the hardest part of this. Listening to the stories of (especially) mums worrying about their young families and a few tears of them not being there for them. Just sitting in a corner and watching these life stories unfold was both humbling and also life affirming. The respect and the compassion that the nurses have for their patients is a joy to see - it's lovely to see someone actually get a cuddle when they are in tears and actually have someone sit with them when they talk about their worries is, in this day and age of remote and disconnected people, refreshingly wonderful. Compassion is alive and well in the UK - the oft peddled myth about this being a heartless and soulless country is just not true. This disease brings out someting sometimes rather special in people and when you see it for yourself it's rather wonderful to behold.
Feeding is interesting. It's a real juggling act to get the balance right with the various different types of food, when and how to eat them and the best way to rest. What with the drugs being connected to the Picc line for the next few days and a gastric line delivering food overnight, sleeping positions becomes restrictive. We'll learn. So far, so good. 5FU stops on monday so it's fine.
Just today, when I gave my darling a cuddle, for the first time in a long long time, there was a little less bone and a little more her. It pleases me in a way I cannot put into words.
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