The waiting is the hardest bit
Discussion
Odd isn't it ... the human mind. My missus has a biopsy tomorrow sometime. Poor lass is pretty poorly and at the moment and CT, MRI scans and xrays have drawn a complete blank as to why.
Odd how you sit sometimes, not wanting to do anything at all, but at the same time want to do so much. Odder still how even when you know the outcome is more than likely to be positive, the mind drifts to the darkest of dark places. I was thinking a while earlier, when I was waiting for my BC results, the waiting wasn't that bad, but this is 100 times worse.
Odd how you sit sometimes, not wanting to do anything at all, but at the same time want to do so much. Odder still how even when you know the outcome is more than likely to be positive, the mind drifts to the darkest of dark places. I was thinking a while earlier, when I was waiting for my BC results, the waiting wasn't that bad, but this is 100 times worse.
Well it's early in the morning and after a few hours of sleep, here's me banging away on the internet to a world full of strangers because I can;t sleep more than a handful of hours. So much seems daunting and so much seems unanswerable. Wednesday seems to be the day for us, but already we are aware enough to know between the lines that it's not looking great. Every day, step by step, but what ever happens I will be with her every day for the rest of my life.
Funny, life turns on a sixpence. So much potential, so much to do, so much good stuff going on, so many plans and now it comes to a life of waiting for the one thing in my life, the most important thing of all to have the right outcome.
Forgive the early morning ramblings, life at this moment has taken on a preciousness that this time last week spanned decades.
edit: does anyone know if you can get married at short notice?
Funny, life turns on a sixpence. So much potential, so much to do, so much good stuff going on, so many plans and now it comes to a life of waiting for the one thing in my life, the most important thing of all to have the right outcome.
Forgive the early morning ramblings, life at this moment has taken on a preciousness that this time last week spanned decades.
edit: does anyone know if you can get married at short notice?
Edited by drivin_me_nuts on Friday 11th June 07:18
good news, she comes home today - had me in tears on the phone to her. Nothing more to be said or done until the big meet on Wednesday. So much to sort out, so much to say and do. Life turns on a sixpence. Today I feel on top of the world like nothiing is wrong - please let every day be like today.
Thanks for all your kind words, it means so very much, it really does.
Thanks for all your kind words, it means so very much, it really does.
Thank you for all your kind words and support. Today life goes on as normal. A few things new to add, just like many others on here, with pills to take in the morning and things to be done at certain times. It's not a big deal and slowly, the mind gets over the initial horrible shock and fear and something more resolute and stronger starts to emerge. It's not easy. She's sitting in a chair opposite me reading some bits and pieces - her normal morning 'ritual' and my ears are attuned to every different sound and stance. Life goes on, but these days are precious. I don't know what the outcome of all this will be and of course I am worried sick, but one thing fills me with joy and gives me inner strength and calmness and that is the knowledge that I have told her every day since before I can remember that I love her more than life itself.
What doesn't kill you makes you stronger....
It's odd really, here I am sitting at somewhere near 2am thinking about the last week and I can say without a doubt that it has been the worst and arguably the longest week of my life. From sunday before yesterday to today, life has taken such a turn. The shock was just that.. shocking and daunting beyond belief and for pretty much the whole of the week I was running full blown headless mode. Yet as the weekend has come around and my lass came home, something called normality and sanity returned. When she called me at the end of the week and told me she was coming home it was utter relief. The weekend was peaceful and quiet with smatterings of wellwishers and distraught calls from relatives half way around the world who dream the worst and expect bad news at a moments notice. But even in that, there was a calmness lost at the beginning of the week.
Today she had to go back - nothing's changed really but as she has such great difficulty swallowing she needs to be in hospital for saline, vitamins and a rig to be fitted. At the end of the week we find out the real story - plan for the worst and hope for the best seems to be the sane way to do it and I think that as time has passed, mentally I am becoming more prepared for what the worst might be, but if I cry when I hear good news it will be tears of utter relief. Bits of life go into a holding pattern, much of life continues and part of the joy of life continuing as normal is just that - it keeps life focused. The house is empty, but returning to hospital today was under our control and the difference emotionally, mentally and psychologically was huge compared to last week. Control is returning, slowly and that in itself makes a huge difference. This weekeend was so needed, just to gather our breath and feel 'normal' again.
The staff in the hospital are just ace; human, compassionate, charming, sometimes funny and they show their caring in so many different ways. They are a credit to their differing professions.
I am also lucky in another respect in having family in the 'business'. It's been a godsend having someone professional to talk to at stupid hours of the morning who has been able to talk me through my darkest thoughts with calm doses or reality and understanding of the processes and steps. Thanks sis, you may never read this, but your words have helped me beyond measure and I will be forever in your debt for offering such pragmatic advice in the depths of darkest hours last monday and tuesday night.
I have met the cancer monster before in my life, it stalks my family - sometimes directly, more often indirectly. It has been like a sniper, taking friends and family when they least expect it. This time it might have tried to take a bite out of my dearest. But you know what cancer, I see you for what you are. I know your cells are weak, I know the power of the mind, I know the strength of resolve and I see you for what you are. You have no hold over me. I name you for what you are. T cells, B cells, NK cells do your stuff. If you think you can take this life, you can f
k right off.
It's odd really, here I am sitting at somewhere near 2am thinking about the last week and I can say without a doubt that it has been the worst and arguably the longest week of my life. From sunday before yesterday to today, life has taken such a turn. The shock was just that.. shocking and daunting beyond belief and for pretty much the whole of the week I was running full blown headless mode. Yet as the weekend has come around and my lass came home, something called normality and sanity returned. When she called me at the end of the week and told me she was coming home it was utter relief. The weekend was peaceful and quiet with smatterings of wellwishers and distraught calls from relatives half way around the world who dream the worst and expect bad news at a moments notice. But even in that, there was a calmness lost at the beginning of the week.
Today she had to go back - nothing's changed really but as she has such great difficulty swallowing she needs to be in hospital for saline, vitamins and a rig to be fitted. At the end of the week we find out the real story - plan for the worst and hope for the best seems to be the sane way to do it and I think that as time has passed, mentally I am becoming more prepared for what the worst might be, but if I cry when I hear good news it will be tears of utter relief. Bits of life go into a holding pattern, much of life continues and part of the joy of life continuing as normal is just that - it keeps life focused. The house is empty, but returning to hospital today was under our control and the difference emotionally, mentally and psychologically was huge compared to last week. Control is returning, slowly and that in itself makes a huge difference. This weekeend was so needed, just to gather our breath and feel 'normal' again.
The staff in the hospital are just ace; human, compassionate, charming, sometimes funny and they show their caring in so many different ways. They are a credit to their differing professions.
I am also lucky in another respect in having family in the 'business'. It's been a godsend having someone professional to talk to at stupid hours of the morning who has been able to talk me through my darkest thoughts with calm doses or reality and understanding of the processes and steps. Thanks sis, you may never read this, but your words have helped me beyond measure and I will be forever in your debt for offering such pragmatic advice in the depths of darkest hours last monday and tuesday night.
I have met the cancer monster before in my life, it stalks my family - sometimes directly, more often indirectly. It has been like a sniper, taking friends and family when they least expect it. This time it might have tried to take a bite out of my dearest. But you know what cancer, I see you for what you are. I know your cells are weak, I know the power of the mind, I know the strength of resolve and I see you for what you are. You have no hold over me. I name you for what you are. T cells, B cells, NK cells do your stuff. If you think you can take this life, you can f
k right off.So we now know that it's cancer - the way the consultants just throw it into the conversation is laughably amusing. It is just as well that my missues is phased by bugger all, because by christ there approach to telling patients lacks and form of finesse. We have our big meet tomorrow morning for the staging, prognosis and treatment plan. Oh well, the positive thing is that it has a name, it holds no fear for either of us, it is what it is. For the first time since last week I feel proper relief and calmness. Uncertainty is the worst bit. I shall sleep better tonight knowing what it is. Stage I - IV... it's all pretty bloody meaningless. It is what it is, we deal with what ever comes along. Pragmatism and logic wins out.
Thanks once again for all your kind words and support. Sorry of this thread is turning into a brain dump, but it feels really positive and knowing that there are people out there in 'internet land' wishing us well strengthens me from the inside out. You have my deepest thanks.
Thanks once again for all your kind words and support. Sorry of this thread is turning into a brain dump, but it feels really positive and knowing that there are people out there in 'internet land' wishing us well strengthens me from the inside out. You have my deepest thanks.
Well it has been an interesting morning. Chemotherapy beckons and then all things being well, radiotherapy. It was an interesting approach to see the whole team at the same time and the honesty and approach of the consultants after this long ten days has been a very pleasant relief. I think our calmness and natural curiosity somewhat bemused the team. I don't think they were quite expecting us to be the way we were!
Positive day, interesting to see life from the other side of the syringe driver. We've got a good support team around us and more potential help than I could ever have dreamed of asking for or ever wanted. Every thing is lining up nicely.
Now the fun bit, We need to see if we can still see our own clients whilst she is going through chemo. She won't stay at home and 'resting' for her is the last thing she needs. She is one tough coookie and it will do us both the world of good to just get on with our lives whilst chemo does its own thing. It may be odd to read this, but you know what, Cancer is a beautiful thing - not the disease process of cancer itself, but the cells are stunningly beautiful. My missues has spent her life around some serious 'nasties' and has turned them into the most beautiful artwork (one of the other things she does so very well), in fact our workplace is adorned with canvas after canvas and we use them with our own cancer clients. It's a shame that her artwork has embraced her so literally! I learned long ago with cancer that it takes way too much energy 'fighting cancer', that the calmer approach is so much less stress on the immune system and the mindset of both of us is so important. So positivity, pragmatism and humour are definately the way forward.
Once again I am impressed with the sheer compassion and understanding of all the staff involved. They have been utterly brilliant today and I am also so pleased that this is all taking place locally to us.
Life goes on, the world still spins, and we will do what we need to do. Thanks for listening world, in all this upheavel it's good to remain grounded. Cancer, I see you for what you are, you are beautiful, but you are an inconvenience and you don't belong in my girl. Time you went on your way.
... She said yes by the way, so somewhere in all of this I need to make plans for a wedding. I can't wait. That prospect in itself makes my heart leap and fills me with joy. She knows I love her dearly, sometimes when I think about it, it feels like my heart will burst.
Positive day, interesting to see life from the other side of the syringe driver. We've got a good support team around us and more potential help than I could ever have dreamed of asking for or ever wanted. Every thing is lining up nicely.
Now the fun bit, We need to see if we can still see our own clients whilst she is going through chemo. She won't stay at home and 'resting' for her is the last thing she needs. She is one tough coookie and it will do us both the world of good to just get on with our lives whilst chemo does its own thing. It may be odd to read this, but you know what, Cancer is a beautiful thing - not the disease process of cancer itself, but the cells are stunningly beautiful. My missues has spent her life around some serious 'nasties' and has turned them into the most beautiful artwork (one of the other things she does so very well), in fact our workplace is adorned with canvas after canvas and we use them with our own cancer clients. It's a shame that her artwork has embraced her so literally! I learned long ago with cancer that it takes way too much energy 'fighting cancer', that the calmer approach is so much less stress on the immune system and the mindset of both of us is so important. So positivity, pragmatism and humour are definately the way forward.
Once again I am impressed with the sheer compassion and understanding of all the staff involved. They have been utterly brilliant today and I am also so pleased that this is all taking place locally to us.
Life goes on, the world still spins, and we will do what we need to do. Thanks for listening world, in all this upheavel it's good to remain grounded. Cancer, I see you for what you are, you are beautiful, but you are an inconvenience and you don't belong in my girl. Time you went on your way.
... She said yes by the way, so somewhere in all of this I need to make plans for a wedding. I can't wait. That prospect in itself makes my heart leap and fills me with joy. She knows I love her dearly, sometimes when I think about it, it feels like my heart will burst.
... 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, fk 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 ...
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......
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.
Snotrag, 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.
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.
Thank you for your replies and kind words and thoughts. It is much appreciated.
We are getting through this. Today is the last full day of the 5FU and ever so slightly it is becoming increasingly harder. Her metabolic rate is increasing and it is hard for her to stay cool and sleep is broken into 3 hour chunks of feeding, toilet, stop feeding, anti sickness drugs and then more antisickness drugs. She is very tired and as I write this on Sunday the house is very quiet and she is resting on the sofa. 5fu stops tomorrow and I hope that then life will, for the next two weeks return to a simple regime of just one or two nightly interuptions. It's exhausting for her and she looks quite knackered now. Funny also, the first couple of nights of this regime I also found knackering, but the mind and body just get used to it. On a very positive note, her weight is increasing almost day by day. About 2500 cals seems to be making a difference. BMI must be heading up towards 17, hopefully 18 so it's all going in the right direction. I look forward to the day when her weight hits 40kgs. Seeing her at 33 was frightening. It's amazing just how much difference and extra 2-3 kgs makes and how far it goes.
We are getting through this. Today is the last full day of the 5FU and ever so slightly it is becoming increasingly harder. Her metabolic rate is increasing and it is hard for her to stay cool and sleep is broken into 3 hour chunks of feeding, toilet, stop feeding, anti sickness drugs and then more antisickness drugs. She is very tired and as I write this on Sunday the house is very quiet and she is resting on the sofa. 5fu stops tomorrow and I hope that then life will, for the next two weeks return to a simple regime of just one or two nightly interuptions. It's exhausting for her and she looks quite knackered now. Funny also, the first couple of nights of this regime I also found knackering, but the mind and body just get used to it. On a very positive note, her weight is increasing almost day by day. About 2500 cals seems to be making a difference. BMI must be heading up towards 17, hopefully 18 so it's all going in the right direction. I look forward to the day when her weight hits 40kgs. Seeing her at 33 was frightening. It's amazing just how much difference and extra 2-3 kgs makes and how far it goes.
Day 7 or is it 8 now, not sure.
Well chemo go one is well and truly over and here we are sitting in the sun room with the afternoon sun blazing down and a very pissed off missus. One of the huge downsides of not being able to swallow is not being able to keep your mouth hydrated and oral thrush is the result. Best described as trying to cough up razor blades and it's plain horrible. Getting meds to put down the tube wasn't the easiest thing to source either - after a near heart attack at the suggestion of a seven day wait, we got some in 24 hours, but yuk is the word of the today and yesterday. As for chemo, well the side effects are slowly starting to emerge - bone pain and deep rooted aches as well as temperatures hovering around the 37 and a big bit. 38 is the magic number for chemo patients - any more and it's an instant phone call to the ward and a possible admission. We had to go back to A&E for the thrush meds and it was surprising just how quickly we were seen - literally 5 minutes in and out. As for the tumour, i'm not sure what's going on. She says she can swallow slightly which in itself is a huge improvement - at least a boiled sweet is an option (though not great with candida...) As for the outside - well it's a big bastid that's for sure. It's very pronounced and when I look at it, it creates that deep rooted unease - you know the kind when you are watchng a movie and you just know something isn't right. That's something else that the brain needs to work on now - another balance ( i.e. resolving the conflict) about how I feel about it and how it makes me feel. We have a proper massage couch at home and deep massage has also become part of the evening routine as it helps ease the pain. Things aren't great at the moment, but it could be a lot worse than it is, that's for sure. The GP reckons the thrush meds take 24 - 48 odd hours to kick in. I hope it's sooner. Mentally we're doing fine, other than being pissed off about broken sleep and the thrush life is quiet and calm. Shame there's no more football on during the day. It does break the monotony of feeding regimes. Oh well, I'll have to hunt for some funny DVD's to watch now.
Well chemo go one is well and truly over and here we are sitting in the sun room with the afternoon sun blazing down and a very pissed off missus. One of the huge downsides of not being able to swallow is not being able to keep your mouth hydrated and oral thrush is the result. Best described as trying to cough up razor blades and it's plain horrible. Getting meds to put down the tube wasn't the easiest thing to source either - after a near heart attack at the suggestion of a seven day wait, we got some in 24 hours, but yuk is the word of the today and yesterday. As for chemo, well the side effects are slowly starting to emerge - bone pain and deep rooted aches as well as temperatures hovering around the 37 and a big bit. 38 is the magic number for chemo patients - any more and it's an instant phone call to the ward and a possible admission. We had to go back to A&E for the thrush meds and it was surprising just how quickly we were seen - literally 5 minutes in and out. As for the tumour, i'm not sure what's going on. She says she can swallow slightly which in itself is a huge improvement - at least a boiled sweet is an option (though not great with candida...) As for the outside - well it's a big bastid that's for sure. It's very pronounced and when I look at it, it creates that deep rooted unease - you know the kind when you are watchng a movie and you just know something isn't right. That's something else that the brain needs to work on now - another balance ( i.e. resolving the conflict) about how I feel about it and how it makes me feel. We have a proper massage couch at home and deep massage has also become part of the evening routine as it helps ease the pain. Things aren't great at the moment, but it could be a lot worse than it is, that's for sure. The GP reckons the thrush meds take 24 - 48 odd hours to kick in. I hope it's sooner. Mentally we're doing fine, other than being pissed off about broken sleep and the thrush life is quiet and calm. Shame there's no more football on during the day. It does break the monotony of feeding regimes. Oh well, I'll have to hunt for some funny DVD's to watch now.
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