The waiting is the hardest bit
Discussion
I've just been through chemo and the docs think I'm going to be OK- 3 month screening is clear, and they look at me again in another 3 months. At age 31, I think I've suddenly realised all the things that were important to me- my friends rallied round and even though it was s
te at times, they really carried me through it. I don't have words enough to thank them.
My thoughts really are with you, internet stranger.
Much manhugs, go marry that woman of yours and have an awesome life together.
te at times, they really carried me through it. I don't have words enough to thank them.My thoughts really are with you, internet stranger.
Much manhugs, go marry that woman of yours and have an awesome life together.
DMN, I've only just come across this thread....
My mum defeated the pesky "C" and has been clear 5 years now. We cried, of course, when we found out but I'll never forget the humour and positive attitude we all (me, mum and dad) found in our love for each other. I am totally convinced that had much to do with the defeating of it.
You are so lucky to have found unconditional love in another person and I trust that that love will see you both through. If we could all experience a love like you have found, we would all be richer people for it.
I wish you both happiness and health.
My mum defeated the pesky "C" and has been clear 5 years now. We cried, of course, when we found out but I'll never forget the humour and positive attitude we all (me, mum and dad) found in our love for each other. I am totally convinced that had much to do with the defeating of it.
You are so lucky to have found unconditional love in another person and I trust that that love will see you both through. If we could all experience a love like you have found, we would all be richer people for it.
I wish you both happiness and health.
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.
When I was in treatment, I was always told that if my temperature was above 37.5 for more than 2 hours then I was to get in touch immediately, above 38 and it meant an instant phonecall and visit to the ward.
Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
IforB said:
When I was in treatment, I was always told that if my temperature was above 37.5 for more than 2 hours then I was to get in touch immediately, above 38 and it meant an instant phonecall and visit to the ward.
Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
IforB, thanks for the reply. Other than paracetamol and a few 'just in case' things for constipation she has no other meds to take. So in that respect crossed fingers we're doing well. The mornings are the worst. This morning was hard - just as she gets off to sleep the phone rings or someone knocks on the door and getting back to sleep becomes hard. But like I said so far so good(ish!) Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
drivin_me_nuts said:
This morning was hard - just as she gets off to sleep the phone rings or someone knocks on the door and getting back to sleep becomes hard. But like I said so far so good(ish!)
I had this problem. Thankfully my mum- bless her no-nonsense West Cork ways 
- marshalled my mates. One Uni mate would update all the others, one Irish relative would update the Irish relatives, one neighbour rang all the others... and so on. That way, I had 3-4 people ringing up later in the day (to give me a lie in!) instead of a dozen every morning before 10am and I got more sleep.At the time I felt bloody awful
and I just wanted to lie down for a very long time, so that space without the multiple phonecalls was very important for me. (My chemo was carboplatin though, so my experience will be very different to your girl's in a lot of ways.)Thinking of you both.
drivin_me_nuts said:
IforB said:
When I was in treatment, I was always told that if my temperature was above 37.5 for more than 2 hours then I was to get in touch immediately, above 38 and it meant an instant phonecall and visit to the ward.
Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
IforB, thanks for the reply. Other than paracetamol and a few 'just in case' things for constipation she has no other meds to take. So in that respect crossed fingers we're doing well. The mornings are the worst. This morning was hard - just as she gets off to sleep the phone rings or someone knocks on the door and getting back to sleep becomes hard. But like I said so far so good(ish!) Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
drivin_me_nuts said:
IforB said:
When I was in treatment, I was always told that if my temperature was above 37.5 for more than 2 hours then I was to get in touch immediately, above 38 and it meant an instant phonecall and visit to the ward.
Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
IforB, thanks for the reply. Other than paracetamol and a few 'just in case' things for constipation she has no other meds to take. So in that respect crossed fingers we're doing well. The mornings are the worst. This morning was hard - just as she gets off to sleep the phone rings or someone knocks on the door and getting back to sleep becomes hard. But like I said so far so good(ish!) Infections are the big problem and I'm assuming that you've got a whole host of anti-viral, anti-fungal and broad spectrum antibiotics to take on a daily basis.
I always found days 7-9 the worst and after that my body started to recover. Obviously it's different for everyone, with different drugs, but talking to lots of people on cycles like this, it's pretty standard.
You're both doing brilliantly. Keep it up.
With that in mind, make sure that if there is even a hint of constipation, she takes the movicol (or whatever it you have) it makes a massive difference to how you feel and the last thing you want is any hint of something like piles, which are a bit of a hazard.
With regards to people coming around or the 'phone ringing, we ran a system where I'd unplug the 'phone and people would ring my wife to see if it was alright if they could go round. When I got up in the morning, I'd let her know how I was feeling (she'd invariably gone to work by the time I woke up.) Everyone was under strict instructions not to come anywhere near me if they had a cold or illness or had even been around other people who'd been ill.
It might sound like over-kill, but it worked and I came through over a year of chemo and a stem cell transplant with no issues. Most other people I went through treatment ended up having treatment delayed or having to spend time on the ward because of getting colds. Whilst most people think nothing of a case of the sniffles, it can be very serious to those with a stuffed immune system and you need to protect her as much as possible.
IforB said:
Whilst most people get squeamish about stuff, most people who've been through chemo couldn't give a monkeys about talking about the most intimate details of their anatomy.
Amen to that. I lost any squeamishness I had.IforB said:
With that in mind, make sure that if there is even a hint of constipation, she takes the movicol (or whatever it you have) it makes a massive difference to how you feel and the last thing you want is any hint of something like piles, which are a bit of a hazard.
Amen to that too. But get it in early if you think you need it cos it takes a day or two to kick in properly. I put it off saying "Ah it's not too bad yet, it'll be fine" and had flipping awful piles a day later.Chemo cycle 1 is coming to an end this week and cycle two starts this coming thursday. The plus signs so far, the pain that was in the ear is now gone, the sense of restriction in the throat easing slightly. The bad bits, the tumour shows no real sign of diminishing and the first consultant visit last weeks mentioned surgery - something that he was not really willing to discuss earlier. Chemo side effects so far border more on the side of inconvenient than miserable. 5FU produced a week of exploding stomach syndrome and made her very hot at nights and oral thrush which still hasn't gone and for which there seems to be little by way of effective medicine. I suspect it's going to have to be one of those things she will have to put up with.
I am worried about the radiotherapy bit. There are a few what if questions lurking around the back of my head - the what if he says it's not an option, is surgery really going to work? What if it's too radical. Quality of life is everything - she's too young for the type of radical surgery on offer, so what then - is the care going to be palliative?
There's a big meeting after the second round - all 15 odd people in the room discussing what the plan of action will be. The beginning of August looks like it's heading into real decision time and for the first time really I think I am feeling real anxiety about the future. We have so much to do in our lives, so much good stuff going on at the moment and so many plans in the pipeline that this could not have come at a worst time. Still, I suppose I hold the thought in my head 'what doesn't kill you makes you stronger', yet at times I wonder about the 'other future' , the one with just me in it and it feels like an utter void of complete nothingness. I know this is a work in progress, that you take every day, day by day, but sometimes, just occasionally I hear the very scared voice in the back of my head - the one that is scared of loss and dying and is full of fear about the future. I try to reason with it, to make it see sense, to help it understand that this is just a process that we are going through and yes, it's ok to be scared and yes it's ok to lie there at night till the early hours thinking nothing, yet thinking a million thoughts at the same time. Sometimes it seems reassured - yet I make it no promises, yet other times it says 'promise me it will be ok' - to which I reply, I cannot, because I don't know myself.
It's sunday afternoon and we're sitting here quiety doing very little. I want to go back to bed - maybe if I pull the duvet back over my head i'll wake up and this will all have been a bad dream. Yet even as I write this, I feel the other side of me - the stronger side that says, no matter what, we'll get through, that life goes on, that you are so blessed to have eachother and that together you are both unbreakable. Please universe, give us the strength to remain strong and resolute throughout this.
I am worried about the radiotherapy bit. There are a few what if questions lurking around the back of my head - the what if he says it's not an option, is surgery really going to work? What if it's too radical. Quality of life is everything - she's too young for the type of radical surgery on offer, so what then - is the care going to be palliative?
There's a big meeting after the second round - all 15 odd people in the room discussing what the plan of action will be. The beginning of August looks like it's heading into real decision time and for the first time really I think I am feeling real anxiety about the future. We have so much to do in our lives, so much good stuff going on at the moment and so many plans in the pipeline that this could not have come at a worst time. Still, I suppose I hold the thought in my head 'what doesn't kill you makes you stronger', yet at times I wonder about the 'other future' , the one with just me in it and it feels like an utter void of complete nothingness. I know this is a work in progress, that you take every day, day by day, but sometimes, just occasionally I hear the very scared voice in the back of my head - the one that is scared of loss and dying and is full of fear about the future. I try to reason with it, to make it see sense, to help it understand that this is just a process that we are going through and yes, it's ok to be scared and yes it's ok to lie there at night till the early hours thinking nothing, yet thinking a million thoughts at the same time. Sometimes it seems reassured - yet I make it no promises, yet other times it says 'promise me it will be ok' - to which I reply, I cannot, because I don't know myself.
It's sunday afternoon and we're sitting here quiety doing very little. I want to go back to bed - maybe if I pull the duvet back over my head i'll wake up and this will all have been a bad dream. Yet even as I write this, I feel the other side of me - the stronger side that says, no matter what, we'll get through, that life goes on, that you are so blessed to have eachother and that together you are both unbreakable. Please universe, give us the strength to remain strong and resolute throughout this.
One of the things to remember is that even though the chemo is working, the tumour itself might not always shrink, even though the cancer itself is being killed off, so the surgery might be needed simply to remove the dead/scar tissue.
I have lots of little nodules left in my body, but PET scans and CT scans show that they aren't active and haven't changed. That might be the case with your O/H's tumour.
Don't worry too much about results yet. Give it time to do what it needs to do.
You are allowed to have wobbles. If you didn't, you'd be a nutter with no sense of reality. Just don't let them last any longer than a few minutes.
As per usual, all the best from me. There's a way to go yet and the fact that something is happening is a really good sign, it shows that this cancer can be affected. Plan A might not be perfect, but Cancer isn't as simple as just taking a pill. The Doc's might need to try a couple of different treatments. Yes it is worrying, but I had to have second line chemo after the first effort did most of the job, but not all of it.
Docs don't run out of ideas after the first go, they have numerous different combinations that can work. It might take until Plan F to finish it off, but they'll keep going as long as they see it having some effect.
I have lots of little nodules left in my body, but PET scans and CT scans show that they aren't active and haven't changed. That might be the case with your O/H's tumour.
Don't worry too much about results yet. Give it time to do what it needs to do.
You are allowed to have wobbles. If you didn't, you'd be a nutter with no sense of reality. Just don't let them last any longer than a few minutes.
As per usual, all the best from me. There's a way to go yet and the fact that something is happening is a really good sign, it shows that this cancer can be affected. Plan A might not be perfect, but Cancer isn't as simple as just taking a pill. The Doc's might need to try a couple of different treatments. Yes it is worrying, but I had to have second line chemo after the first effort did most of the job, but not all of it.
Docs don't run out of ideas after the first go, they have numerous different combinations that can work. It might take until Plan F to finish it off, but they'll keep going as long as they see it having some effect.
Edited by IforB on Sunday 18th July 13:03
Edited by IforB on Sunday 18th July 13:04
Your posts have been so heart wrenching and emotional that I just wanted to say good luck to both of you. Cancer is a terrible thing - but can and will continue to be beaten with the right strength and medical care, and it sounds like you have both well in hand - I genuinely hope things start to improve for your OH and that you can start so see some of your future plans to fruition.
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