The waiting is the hardest bit
Discussion
Granville said:
I commend you for sharing such a personal and heart wrenching part of your life, you have written it so beautifully, heart breaking at times, warm and yet so full of pain and frustration, and full of love for your partner.
Sending you and yours the warmest of wishes and good luck.
Wishing you both all the best for your special day this week.Sending you and yours the warmest of wishes and good luck.
I actually stumbled onto this from Ali asking after your missus on the food thread, but having read most of it I'm not ashamed to admit I've got a lump in my throat and tear in my eye.
OP, I wish you and the missus the very best of luck and sincerely hope that she can fight her way through this. I am in awe of your attitude and devotion to her and whilst clearly the focus should be on her, I do think she is very lucky to have somebody like you supporting her through this.
Anyway, as I said, I really do hope that tomorrow brings positive news and that eventually you can both return to enjoying life.
OP, I wish you and the missus the very best of luck and sincerely hope that she can fight her way through this. I am in awe of your attitude and devotion to her and whilst clearly the focus should be on her, I do think she is very lucky to have somebody like you supporting her through this.
Anyway, as I said, I really do hope that tomorrow brings positive news and that eventually you can both return to enjoying life.
Another peaceful day yesterday. I'm stuck at home today with some kind of bug, so the last thing I want to do is give her the lurgy.. Anyway, late yesterday evening her consultant surgeon came to visit and it was all positive. Trac in place doing its job nicely, breathing improving by the day. Slight problem with the feeding tube, it seems to have developed some kind of fracture whereby all that goes in them comes out again. So it's probably off to IR (Interventional Radiology) to have the tube changed. Rather important this tube as it is her means of getting calories. Fortunately it broke yesterday after her first feed, so at least she has 1200 cals. So back on saline last night through the picc and hopefully today the feeding tube will be sorted. She needs her 2400 cals a day in readines for radiotherapy. If there was some way of giving her some of mine, she'd be more than welcome to 10,000 or so - hospital sandwichs are not great for the waistline. No sign of the GUPPY. Good, hopefully she gets the message that she's not wanted!
I am bugged up at the moment and feeling mentally knackered as well so I'm not planning to see her today. The last thing she needs is the lurgy. Anyway, I called the ward and she's having a much better day and is improving nicely. All good.
It made me laugh, after putting the phone down, two minutes later I received a call from her nurse - She says eat well and take some rest. Daft bird my missus, she should be thinking about herself, not me. Anyway. faced with a choice of resting and tidying up a house that looks like a bomb site and at the moment the rest wins. It's odd really, it's only now, after the chaos of last week and the fact that I know she's recovering nicely, do I switch off enough to realise i'm feeling utterly crap myself. This time it's the body not the mind playing games. Lemsip, stew and rest beckon. Perhaps it;s a good time to recharge my own batteries.
No marriage yet. If I can, I will defer it to do it properly. Let me see what the next few days bring. the licence is valid for three more weeks.
It made me laugh, after putting the phone down, two minutes later I received a call from her nurse - She says eat well and take some rest. Daft bird my missus, she should be thinking about herself, not me. Anyway. faced with a choice of resting and tidying up a house that looks like a bomb site and at the moment the rest wins. It's odd really, it's only now, after the chaos of last week and the fact that I know she's recovering nicely, do I switch off enough to realise i'm feeling utterly crap myself. This time it's the body not the mind playing games. Lemsip, stew and rest beckon. Perhaps it;s a good time to recharge my own batteries.
No marriage yet. If I can, I will defer it to do it properly. Let me see what the next few days bring. the licence is valid for three more weeks.
sounds like you need a duvet day. Stew or a good hearty broth, duvet and a film followed my an early night will do you the power of good.
I'm glad you partner is doing better, she sounds about as selfless as I am, always worrying about someone else rather than my own self.
Rest and get better, I am sure you will have more challenging days ahead yet to come.
I'm glad you partner is doing better, she sounds about as selfless as I am, always worrying about someone else rather than my own self.
Rest and get better, I am sure you will have more challenging days ahead yet to come.
I've had a knackered internet connection and have just caught up with the events over the past few weeks. A lot has obviously changed.
I don't think I have anything to add to the other sensible posts here, other to say that I'm still thinking of you both.
Get well soon yourself, and all the best for the upcoming wedding!
I don't think I have anything to add to the other sensible posts here, other to say that I'm still thinking of you both.
Get well soon yourself, and all the best for the upcoming wedding!
Edited by blearyeyedboy on Thursday 30th September 17:51
That's the last time I get ill...
I go to see my missus this evening and she is mightily pissed off. No replacement tube, no sign of the tube being replaced - apparently she has been assessed by some faceless nobody as not being a priority case. let me see, T4 tumour, just had invasive surgery, not eaten since Monday. This is running perilously close to clinical malpractice. There is much more I want to say but cannot and will not on a public forum. Oh and again they are talking of palliatice radio not curative radio and talking about 'quality of life' and her not being strong enough. Well if you don't f
kin feed her for three days what the fk do you expect. She never complains, yet this evening she was raging. Tomorrow i'm off to the team to speak to them. This is fkin ludicrous.
I go to see my missus this evening and she is mightily pissed off. No replacement tube, no sign of the tube being replaced - apparently she has been assessed by some faceless nobody as not being a priority case. let me see, T4 tumour, just had invasive surgery, not eaten since Monday. This is running perilously close to clinical malpractice. There is much more I want to say but cannot and will not on a public forum. Oh and again they are talking of palliatice radio not curative radio and talking about 'quality of life' and her not being strong enough. Well if you don't f
kin feed her for three days what the fk do you expect. She never complains, yet this evening she was raging. Tomorrow i'm off to the team to speak to them. This is fkin ludicrous. That's rubbish DMN. I hope you get it sorted quickly.
When I was in treatment I didn't realise how much of a difference it made having my FiL along with me most of the time. He's a retired consultant and used to be clinical director at the hospital I was treated at, so when he was around I got gold plated treatment. However, when he went on holiday for a month, suddenly I found I had to drive my own treatment and tell the Drs and Nurses what should be happening. Generally, it's because it's so busy and they have so many patients to deal with, but that's not really a good enough excuse to be honest.
If you just let the treatment flow, then you'll get worse care than someone who kicks, screams and drives their own treatment along. It's a terrible thing, but that just seems to be the way it is.
Get in there with your size 9's on and whilst there is no excuse for being rude or threatening, as long as you keep calm, then give them hell and force the issue. Get a treatment plan sorted and get it in writing so that there is no possible wiggle room.
When I was in treatment I didn't realise how much of a difference it made having my FiL along with me most of the time. He's a retired consultant and used to be clinical director at the hospital I was treated at, so when he was around I got gold plated treatment. However, when he went on holiday for a month, suddenly I found I had to drive my own treatment and tell the Drs and Nurses what should be happening. Generally, it's because it's so busy and they have so many patients to deal with, but that's not really a good enough excuse to be honest.
If you just let the treatment flow, then you'll get worse care than someone who kicks, screams and drives their own treatment along. It's a terrible thing, but that just seems to be the way it is.
Get in there with your size 9's on and whilst there is no excuse for being rude or threatening, as long as you keep calm, then give them hell and force the issue. Get a treatment plan sorted and get it in writing so that there is no possible wiggle room.
Done. Tube changed, feeding begins tomorrow as they need to test it regularly for leeks over the next few hours. She is utterly exhausted and I left her in her bed already half asleep.
Feeding needs tos start very slowly as her electrolytes will be completely buggered up again, but just very grateful she did not require TPN feeding.
As for the hospital, a little bit of wind and it falls apart. The lifts don't close properly because the pressure in the tower means they don't seal. Apart from that the nurses have been great today and the procedure was stress free, but we did not know it was going to take place until 11am. It took the concerted efforts of a number of critical people to make this happen. It shouldn't be like this, but you are right, if you don't shout and kick up a fuss, you are forgotten.
Feeding needs tos start very slowly as her electrolytes will be completely buggered up again, but just very grateful she did not require TPN feeding.
As for the hospital, a little bit of wind and it falls apart. The lifts don't close properly because the pressure in the tower means they don't seal. Apart from that the nurses have been great today and the procedure was stress free, but we did not know it was going to take place until 11am. It took the concerted efforts of a number of critical people to make this happen. It shouldn't be like this, but you are right, if you don't shout and kick up a fuss, you are forgotten.
anonymous said:
[redacted]
I am sorry to hear this. It's horrible and it leaves you mentally, physically and emotionally exhausted. The amount of effort and worry that you go through is utterly draining. I understand things aren't great, but I do hope things in the weeks to come work out at least a little better for you and your family - that's it's not all negative. I sit here again at yet another 3am wondering about things, unable to sleep. In all of this I have wondered how I have managed to keep my head together over the least few weeks and months. In fact today, before all the drama with tube changes we managed to 'talk' for a while and in all the things we spoke about, there were many things that struck home as truth. My missus knows me so very well and was able with the meerest handful of pen strokes to get to what is really bugging me.
I realise that in part I am still in a state of shock, that I have not yet dealt with the initial shock of all of this. In some way I have been living in denial about all of this - how it really makes me feel and that's because as much as logic and pragmatism won out in the mechanics of this, there is a big part of me that is locked down tight. I am beginning to understand that to deal with some of the things moving forwards I am going to have to take quite a few steps backwards and resolve some complex and tricky issues I have around fear of her dying, a profound sense of loss and abandonment and much else besides. To move on to deal with what's ahead I need my eyes wide open and I can no longer live with the caged fear of death and bereavement. Something has to resolve itself over the next few days so I can do the other things I need to do to be able to support her and not fall apart myself. I understand that sometimes to be the best for someone else, you have to pull yourself apart, reconstruct yourself in a positve way so that what stopped you before no longer hinders your path. I've done it a few times before. It's going to be an interesting weekend. Beyond the fear of death their lies the adventure of life. Night all.
I realise that in part I am still in a state of shock, that I have not yet dealt with the initial shock of all of this. In some way I have been living in denial about all of this - how it really makes me feel and that's because as much as logic and pragmatism won out in the mechanics of this, there is a big part of me that is locked down tight. I am beginning to understand that to deal with some of the things moving forwards I am going to have to take quite a few steps backwards and resolve some complex and tricky issues I have around fear of her dying, a profound sense of loss and abandonment and much else besides. To move on to deal with what's ahead I need my eyes wide open and I can no longer live with the caged fear of death and bereavement. Something has to resolve itself over the next few days so I can do the other things I need to do to be able to support her and not fall apart myself. I understand that sometimes to be the best for someone else, you have to pull yourself apart, reconstruct yourself in a positve way so that what stopped you before no longer hinders your path. I've done it a few times before. It's going to be an interesting weekend. Beyond the fear of death their lies the adventure of life. Night all.
I've been following your thoughts on this thread DMN and have felt humbled by your courage, humility and clarity. Much of what you have said has struck a deep chord with me and I'm sure, with many others. My thoughts have been with you and your wife often.
This recent comment:
"Beyond the fear of death their lies the adventure of life."
honestly stopped me in my tracks, simple yet deeply profound.
I wish you and she all the hope an luck in the world and I know neither of you will give up the fight.
This recent comment:
"Beyond the fear of death their lies the adventure of life."
honestly stopped me in my tracks, simple yet deeply profound.
I wish you and she all the hope an luck in the world and I know neither of you will give up the fight.
drivin_me_nuts said:
I sit here again at yet another 3am wondering about things, unable to sleep. In all of this I have wondered how I have managed to keep my head together over the least few weeks and months. In fact today, before all the drama with tube changes we managed to 'talk' for a while and in all the things we spoke about, there were many things that struck home as truth. My missus knows me so very well and was able with the meerest handful of pen strokes to get to what is really bugging me.
I realise that in part I am still in a state of shock, that I have not yet dealt with the initial shock of all of this. In some way I have been living in denial about all of this - how it really makes me feel and that's because as much as logic and pragmatism won out in the mechanics of this, there is a big part of me that is locked down tight. I am beginning to understand that to deal with some of the things moving forwards I am going to have to take quite a few steps backwards and resolve some complex and tricky issues I have around fear of her dying, a profound sense of loss and abandonment and much else besides. To move on to deal with what's ahead I need my eyes wide open and I can no longer live with the caged fear of death and bereavement. Something has to resolve itself over the next few days so I can do the other things I need to do to be able to support her and not fall apart myself. I understand that sometimes to be the best for someone else, you have to pull yourself apart, reconstruct yourself in a positve way so that what stopped you before no longer hinders your path. I've done it a few times before. It's going to be an interesting weekend. Beyond the fear of death their lies the adventure of life. Night all.
There does come a point where you have to let go a bit. It took me a while to get there too, but eventually I simply got to the point of thinking "what will be, will be" I couldn't control what was happening to me and in reality nor could anyone else. Nobody wants to die, but you sort of accept the possibility after a while and that is what you are now dealing with. I can promise you that what you are doing now is healthy and it takes a hell of a lot to get to this point.I realise that in part I am still in a state of shock, that I have not yet dealt with the initial shock of all of this. In some way I have been living in denial about all of this - how it really makes me feel and that's because as much as logic and pragmatism won out in the mechanics of this, there is a big part of me that is locked down tight. I am beginning to understand that to deal with some of the things moving forwards I am going to have to take quite a few steps backwards and resolve some complex and tricky issues I have around fear of her dying, a profound sense of loss and abandonment and much else besides. To move on to deal with what's ahead I need my eyes wide open and I can no longer live with the caged fear of death and bereavement. Something has to resolve itself over the next few days so I can do the other things I need to do to be able to support her and not fall apart myself. I understand that sometimes to be the best for someone else, you have to pull yourself apart, reconstruct yourself in a positve way so that what stopped you before no longer hinders your path. I've done it a few times before. It's going to be an interesting weekend. Beyond the fear of death their lies the adventure of life. Night all.
I cannot tell you enough how well you are both doing. The psychological issues that surround such things as Cancer are one of biggest hurdles and hardest things to deal with. I don't know anyone who has been through cancer treatment either as a patient or someone supporting their partner/friend/family who hasn't had their view on life changed.
Death or the possibility of it had never really crossed my mind before I was diagnosed. I'd known people of my age who'd died or been seriously ill, but it had never really been real.
Keep going DMN, you are doing both yourself and Mrs DMN proud.
I wish all of you the best of luck, and my thoughts are with you at this black time. I really don't know what else to say...
When we found out my mum/bestfriend/rock had terminal cancer it was devasting, I honestly believed I couldn't survive with out her. I was in a complete mess, but for obvious reasons you have to hold it together.
This was diagnosed in September after she went in to what they thought was gall stones removed and then they found the Pancreatic cancer, which by then it was too late. They told us about Christmas time would be the end.
Over the next few months there was lots of changes and I tried my hardest to cope. Christmas came and went and things slowly began to go downhill.
By May it was inevitable its was coming, June she was taken into a hospice to make her remaining time more comfortable.
The Macmillan nurses were fantastic and sat me down for a long chat. They told me to accept that my mum was very near death and instead of being down and sad, to try and spent our last few days together as happy as possible.
I spent every waking minute by her bedside, rubbing cream in her dry skin, helping her sip water and spoke about many happy things.
Once I had accepted her death and there was nothing I or anyone could do about it, it was easier.
The end 24 hours was one of the worse times of my life, and we were just waiting for the final breath. Which came in the early hours. Strangely it was a relife, she was finally at peace.
The next 24 hours which was the second worse time in my life was all the closure of her death, funeral and collecting belongings form the hospice.
This was 6 years ago and theres not a day that goes past that I dont think of her, but time is a good healer and having family and friends around help hugely.
So I know what your going through. Keep your chin up and try to keep smiling.
Leesa x
(off to have a good cry now)
When we found out my mum/bestfriend/rock had terminal cancer it was devasting, I honestly believed I couldn't survive with out her. I was in a complete mess, but for obvious reasons you have to hold it together.
This was diagnosed in September after she went in to what they thought was gall stones removed and then they found the Pancreatic cancer, which by then it was too late. They told us about Christmas time would be the end.
Over the next few months there was lots of changes and I tried my hardest to cope. Christmas came and went and things slowly began to go downhill.
By May it was inevitable its was coming, June she was taken into a hospice to make her remaining time more comfortable.
The Macmillan nurses were fantastic and sat me down for a long chat. They told me to accept that my mum was very near death and instead of being down and sad, to try and spent our last few days together as happy as possible.
I spent every waking minute by her bedside, rubbing cream in her dry skin, helping her sip water and spoke about many happy things.
Once I had accepted her death and there was nothing I or anyone could do about it, it was easier.
The end 24 hours was one of the worse times of my life, and we were just waiting for the final breath. Which came in the early hours. Strangely it was a relife, she was finally at peace.
The next 24 hours which was the second worse time in my life was all the closure of her death, funeral and collecting belongings form the hospice.
This was 6 years ago and theres not a day that goes past that I dont think of her, but time is a good healer and having family and friends around help hugely.
So I know what your going through. Keep your chin up and try to keep smiling.
Leesa x
(off to have a good cry now)
drivin_me_nuts said:
I understand that sometimes to be the best for someone else, you have to pull yourself apart, reconstruct yourself in a positve way so that what stopped you before no longer hinders your path. I've done it a few times before. It's going to be an interesting weekend. Beyond the fear of death their lies the adventure of life. Night all.
This honestly made my bottom lip quiver a bit. If I ever go through rubbish bits of my life again, I hope I can be even half as much of a man as you're being. Hang in there DMN- we're thinking of you.
Today was a good day. Positive, thoughtful, quiet and precious in a host of different ways. I realise what the terror is. It isn't her dying, it's her dying NOW; as in me living with the constant fear that the next cough, the next secretion from the trac tube, the next bout of 8/9 pain will be the signal of something dramatic and terminal. This is my fear and this is what at the moment stalks me and needs nailing.
We sat today and I talked a lot about living and dying. I said that even if the worst case did happen, that that would be unbearable, but not the end, that I would be OK, that I would cope and I would always have her near me. She will always be with me and I count myself trully blessed in this life to have known true love, a real 'soul mate' for the last twenty two odd years. That bond can never be broken and even in death, of either of us, it will not be broken. But what she wrote was; It's the now, of this present moment that the trauma and huge emotional, mental and psychological trauma lies. And she's right. It is that that causes me to burst into tears at random moments in the shower, or play poignent(sp) songs over and over again, or a host of other things that keep the cycle of shock repeating.
But what I find reassuring in now knowing this, is that like a mental boil it finally has a head that can be lanced. Now I know what it is, i'm OK. I am calmer than at any time in this. I feel more collected and composed. My head has greater space, quite literally, my lungs breathe in more air. Now it has a name and a clarity it did not have before, I feel I can handle it, that I am regaining my sense of control, that for a long time has been lost to me in all of this. It's not just the waiting that's hard, it's also the huge crippling uncertainty of not knowing what is going on in the back of my own mind at times. But now, having finally showed itself, the brain says phew, OK, now I know what you are, I can get a handle on you. I can let go of the enormous fear and stranglehold that her dying now, RIGHT NOW, has on me. That's been the monster at the back and now it's out in the open, it does not scare me any more.
These last few days have seen a huge shift in my thinking and attitude. It started with a 'snap out of it'... followed by some deeper more protracted thought processes, but there is something new and exciting emerging. I looked at my darling differently today, I felt different and in doing so, something emerged that has been buried in fear for a long time. I am truly in love. I have been for 22 years. Things got in the way at times, life got in the way at other times. But today, yet again, I realised that no matter how crap this is, no matter how much cancer transforms the outward appearance of my quirkily, beautiful and utterly unique missus, I have never loved her more. I am in love, truly in love and that is something that cancer cannot ever touch. It lifts me beyond words and it is this, more than anything else that gives me the strength to deal with all of this. When I really think about it, when it does feel like it is breaking me, I understand now what I need to do is reach inside to that place where it resides and connect with it again. Connect and reconnect and make the bond even stronger. Indeed, a day of relevations and insight. I feel so clear headed, so alive, so liberated and so very free. It's wonderful. Night all.
We sat today and I talked a lot about living and dying. I said that even if the worst case did happen, that that would be unbearable, but not the end, that I would be OK, that I would cope and I would always have her near me. She will always be with me and I count myself trully blessed in this life to have known true love, a real 'soul mate' for the last twenty two odd years. That bond can never be broken and even in death, of either of us, it will not be broken. But what she wrote was; It's the now, of this present moment that the trauma and huge emotional, mental and psychological trauma lies. And she's right. It is that that causes me to burst into tears at random moments in the shower, or play poignent(sp) songs over and over again, or a host of other things that keep the cycle of shock repeating.
But what I find reassuring in now knowing this, is that like a mental boil it finally has a head that can be lanced. Now I know what it is, i'm OK. I am calmer than at any time in this. I feel more collected and composed. My head has greater space, quite literally, my lungs breathe in more air. Now it has a name and a clarity it did not have before, I feel I can handle it, that I am regaining my sense of control, that for a long time has been lost to me in all of this. It's not just the waiting that's hard, it's also the huge crippling uncertainty of not knowing what is going on in the back of my own mind at times. But now, having finally showed itself, the brain says phew, OK, now I know what you are, I can get a handle on you. I can let go of the enormous fear and stranglehold that her dying now, RIGHT NOW, has on me. That's been the monster at the back and now it's out in the open, it does not scare me any more.
These last few days have seen a huge shift in my thinking and attitude. It started with a 'snap out of it'... followed by some deeper more protracted thought processes, but there is something new and exciting emerging. I looked at my darling differently today, I felt different and in doing so, something emerged that has been buried in fear for a long time. I am truly in love. I have been for 22 years. Things got in the way at times, life got in the way at other times. But today, yet again, I realised that no matter how crap this is, no matter how much cancer transforms the outward appearance of my quirkily, beautiful and utterly unique missus, I have never loved her more. I am in love, truly in love and that is something that cancer cannot ever touch. It lifts me beyond words and it is this, more than anything else that gives me the strength to deal with all of this. When I really think about it, when it does feel like it is breaking me, I understand now what I need to do is reach inside to that place where it resides and connect with it again. Connect and reconnect and make the bond even stronger. Indeed, a day of relevations and insight. I feel so clear headed, so alive, so liberated and so very free. It's wonderful. Night all.
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