The waiting is the hardest bit
Discussion
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. 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.
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.
Another positive day. At last we got to spend some time together in what was a relatively quiet space. Lots going on, but the nurses are learning to leave us alone when the curtains are drawn. The odd weird hiccup with the tumour though - it grew a cyst in the course of a few hours that was full of no more than air. Yet another oddity of bacterial necrosis I suppose.
Anyway, another week beckons. I hope for a quieter week, though somewhere in it will be a hard and frank meeting about radiotherapy. You know what, I don't mind anymore. If it happens, then so be it, of it doesn't then so what, we'll find another way. As my missue pointed out, her body seems to be throwing up obstacle after obstacle to her not having to wear that mask. There must be a reason for it. Odd perhaps, but we shall see. What ever the outcome, we'll still be here. Doris Day had it so right... que sera sera the future's not ours to see.
A while back, in quieter times, when I was thinking of wedding songs, I was struggling for something that felt special for me - you know, 'it', 'the song'. Then I remembered this, a song that for many a month was on endless repeat. On hearing it again, it was like rediscovering an old and much loved friend. The words go like this.
I am a sailor, you're my first mate
We signed on together, we coupled our fate
Hauled up our anchor, determined not to fail
For the hearts treasure, together we set sail
With no maps to guide us we steered our own course
Rode out the storms when the winds were gale force
Sat out the doldrums in patience and hope
Working together we learned how to cope
Chorus:
Life is an ocean and love is a boat
In troubled water that keeps us afloat
When we started the voyage, there was just me and you
Now gathered round us, we have our own crew
Together we're in this relationship
We built it with care to last the whole trip
Our true destination's not marked on any charts
We're navigating to the shores of the heart
His name is Christy Moore, the song is called the Voyage and on my wedding day this shall be played as I hold her tight. Funny really, we went to a concert of his many moons back and even then I remember how hearing this song and holding her hand made me feel so special.
Roll on this week, i'm already up and at it. Night all.
Anyway, another week beckons. I hope for a quieter week, though somewhere in it will be a hard and frank meeting about radiotherapy. You know what, I don't mind anymore. If it happens, then so be it, of it doesn't then so what, we'll find another way. As my missue pointed out, her body seems to be throwing up obstacle after obstacle to her not having to wear that mask. There must be a reason for it. Odd perhaps, but we shall see. What ever the outcome, we'll still be here. Doris Day had it so right... que sera sera the future's not ours to see.
A while back, in quieter times, when I was thinking of wedding songs, I was struggling for something that felt special for me - you know, 'it', 'the song'. Then I remembered this, a song that for many a month was on endless repeat. On hearing it again, it was like rediscovering an old and much loved friend. The words go like this.
I am a sailor, you're my first mate
We signed on together, we coupled our fate
Hauled up our anchor, determined not to fail
For the hearts treasure, together we set sail
With no maps to guide us we steered our own course
Rode out the storms when the winds were gale force
Sat out the doldrums in patience and hope
Working together we learned how to cope
Chorus:
Life is an ocean and love is a boat
In troubled water that keeps us afloat
When we started the voyage, there was just me and you
Now gathered round us, we have our own crew
Together we're in this relationship
We built it with care to last the whole trip
Our true destination's not marked on any charts
We're navigating to the shores of the heart
His name is Christy Moore, the song is called the Voyage and on my wedding day this shall be played as I hold her tight. Funny really, we went to a concert of his many moons back and even then I remember how hearing this song and holding her hand made me feel so special.
Roll on this week, i'm already up and at it. Night all.
Another good day. Life with cancer is indeed a succession of hopes; hope for a good day, hopes for a positive consultation, hope for a decent nights sleep... some hope!.
Oh well, lets see a bright tomorrow and a day of sun and smiles. it did make me laugh the other day - so many of the porters recognise me now, to be asked five times in the course of a not too long jaunt how the wife is, made me think; perhaps, just perhaps we've been coming to this place a tad too long.. Oh well, with a little luck and a touch of fairie dust, perhaps this time next week she will be home. Here's hoping. Night all
Oh well, lets see a bright tomorrow and a day of sun and smiles. it did make me laugh the other day - so many of the porters recognise me now, to be asked five times in the course of a not too long jaunt how the wife is, made me think; perhaps, just perhaps we've been coming to this place a tad too long.. Oh well, with a little luck and a touch of fairie dust, perhaps this time next week she will be home. Here's hoping. Night all
-Pete- said:
It's very hard for family members & friends to know what to do. I understand your feelings, but you also need to understand theirs. I realize that's not easy for you, hopefully they will understand, too.
As others have said, we think you're doing a fantastic job - she's lucky to have you! I wish you a good night's sleep and best of luck tomorrow and beyond...
Pete, thanks for the reply. I deleted my post. TBO I just needed to rant for a moment and then get it out my system. I understand their needs, I really do. It must be so hard for them, so many miles away and I try my best to edit the truly awful anxious stuff so they don't have to be aware of it.As others have said, we think you're doing a fantastic job - she's lucky to have you! I wish you a good night's sleep and best of luck tomorrow and beyond...
But to call her selfish for not wanting to live through the melodrama and their way of handling things, which is highly charged, dramatic, emotional and so not the way she is, makes me rage inside. It show little or no appreciation of her needs, wants or desires in all of this. This is why it makes me so angry - they are putting their needs before hers.
Edited by drivin_me_nuts on Tuesday 5th October 23:09
... I ranted to my sister earlier on this evening and my missus pretty much as soon as I went on the ward this afternoon. In fact, it didn't stop for hours. What is annoying me this evening is that usually I can deal with anger pretty well. But I am so angry it just does not stop and it's still off the scale. I don't even know what it is anymore. In part it's to do with the frustration of someone calling her selfish, in part it's because I feel that I have to constantly bend and move with this - that in some way those words are forcing me into a box of actions I don't want to take, in part because I know just how bloody hard it is to keep on dealing with this and in part because I think it's just the whole selfish 'what about me' thing.
Everyone has their own notion of what help and 'family' means at a time like this - and her notion is radically different to the constant peopleness version of theirs (yes I know peopleness is not a word - but I can't think of another word to describe being constantly surrounded by people fussing and farting around at your every action, pain or discomfort).
I'm not very lucid this evening, i'm so fking angry I can't sort this out in my own head this evening
Everyone has their own notion of what help and 'family' means at a time like this - and her notion is radically different to the constant peopleness version of theirs (yes I know peopleness is not a word - but I can't think of another word to describe being constantly surrounded by people fussing and farting around at your every action, pain or discomfort).
I'm not very lucid this evening, i'm so f
king angry I can't sort this out in my own head this eveningBetter day, still the draining family stuff only slightly more muted and on the backboiler. Trac changed. Slightly disappointing as not got a voice adaptor; wrong one? Not sure, someone is going to check ...
Missus wants to come home. Completely fed up with it all now. On a positive note, the cyst seems to be draining nicely and a dose of high strength antibiotics is keeping all the ususal hospital suspects like c.diff and mrsa at bay. Long may it keep on working. All talk of radio etc stopped. I can only assume that's because of her ongoing hospitalisation. That conversation needs to happen soon. We need to step out of limbo land and move forwards again. Positive in one other very important respect, she still has her smile and she gets out of bed to give me a hug as I leave late in the evenings. It's hard to leave her, but the kiss she gives me lessens the pain in ways I cannot explain.
Thanks for the words of support yesterday. It was a very frustrating and anger inducing day. I do understand that deep rooted fear and anxiety lie at the root of all of this. It's hard on all of us and we all have to try and strike a balance between our own self(ish?) needs. It's not always an easy balance to keep and sometimes people feel hurt and isolated. It's just part and parcel of the cancer 'gift'. My missus often describes cancer as a great present in crap packaging. She's one funny fish my missus and perhaps that's part of the reason why she is just so precious to me.
Missus wants to come home. Completely fed up with it all now. On a positive note, the cyst seems to be draining nicely and a dose of high strength antibiotics is keeping all the ususal hospital suspects like c.diff and mrsa at bay. Long may it keep on working. All talk of radio etc stopped. I can only assume that's because of her ongoing hospitalisation. That conversation needs to happen soon. We need to step out of limbo land and move forwards again. Positive in one other very important respect, she still has her smile and she gets out of bed to give me a hug as I leave late in the evenings. It's hard to leave her, but the kiss she gives me lessens the pain in ways I cannot explain.
Thanks for the words of support yesterday. It was a very frustrating and anger inducing day. I do understand that deep rooted fear and anxiety lie at the root of all of this. It's hard on all of us and we all have to try and strike a balance between our own self(ish?) needs. It's not always an easy balance to keep and sometimes people feel hurt and isolated. It's just part and parcel of the cancer 'gift'. My missus often describes cancer as a great present in crap packaging. She's one funny fish my missus and perhaps that's part of the reason why she is just so precious to me.
IforB said:
Aaaah, the fun and games that is family and cancer treatment... I didn't see your now deleted post, but I can well imagine how it went.
Cancer can bring out the best and the worst in other people. You are all under a huge amount of stress and will cope with it differently. My wife and my mother had a monumental falling out whilst I was in treatment, oddly enough it was when things had started to go a little bit wrong, with me being in isolation and very unwell thanks to some (at the time) unidentified infections. I was waltzing along as normal, completely unaware of the chaos around me and that people really were fearing for my life.
Now my wife looks back on that time and realises that she'd acted very badly, my mother admits the same. They both wanted what was best for me, but somehow got their wires crossed and ended up fighting eachother instead of pulling together as a team.
All I can suggest is that you deal with your anger, take a deep breath and weld a smile onto your face and grit your teeth. Maybe people want to have more information and feel shut out. Your loved ones want to help, so why not help them to feel useful and also take the pressure off yourself? My MiL took it on herself to do our washing and provide meals whenever requested. It made her feel useful and helped us too. Silly little things like that can make a massive difference and help to keep things under control.
All the best.
This is so very difficult at times. It's like those old chinese wooden puzzles that were around when I was a kid - you know the ones with the odd shaped bits of wood that would only go back together in one way. I'm sure it can fit, it's just trying to find a way to make it all fit.Cancer can bring out the best and the worst in other people. You are all under a huge amount of stress and will cope with it differently. My wife and my mother had a monumental falling out whilst I was in treatment, oddly enough it was when things had started to go a little bit wrong, with me being in isolation and very unwell thanks to some (at the time) unidentified infections. I was waltzing along as normal, completely unaware of the chaos around me and that people really were fearing for my life.
Now my wife looks back on that time and realises that she'd acted very badly, my mother admits the same. They both wanted what was best for me, but somehow got their wires crossed and ended up fighting eachother instead of pulling together as a team.
All I can suggest is that you deal with your anger, take a deep breath and weld a smile onto your face and grit your teeth. Maybe people want to have more information and feel shut out. Your loved ones want to help, so why not help them to feel useful and also take the pressure off yourself? My MiL took it on herself to do our washing and provide meals whenever requested. It made her feel useful and helped us too. Silly little things like that can make a massive difference and help to keep things under control.
All the best.
'Family' play a big part in the complexities of this - not just in the wanting to help, but in some the need to mother, or take complete control in order for themselves to have any sense of control. My missus wrote many times on her scribble pad things like I AM IN CONTROL I'M NOT f
kING DEAD YET... I just have to find a way fo dealing with a brash, rude adult who has zero social filters and little appreciation that the reality of hospital life is that the only way to survive the process intact and sane is to bend like a reed on a day by day basis.I think also in part there is my own sense of hurt. Perhaps at times I do feel conflict between my own 'what about me needs' and in part I do ask myself if I am being selfish too. I don't want to 'hog her', so to speak, i'm just carrying out her wishes and it is she who doesn't want visitors and more importantly, someone who, thought very caring, also has the tendancy to try and take control. It's been a battle for years and one that cannot take place now. I will speak with her later today before I go see my missus and try and find a middle ground. Personally I find this very hard. I, by nature am a negotiator and someone who can generally speaking work around and with pretty much anyone. This situation forces me to be a certain way that goes against the grain. Perhaps this is my cancer 'gift' - the need to confront my own dislikes. But before all of this, a tea beckons and a chance to get my head straight. I had a very disturbed nights sleep and feel completely wasted. Yorkshire's finest is needed; and the prescription this morning is by the bucket!
... thanks for the replies.
Sometimes to speak to an adult the only way is to address the child.. Job done, it's a bit like speaking to a petulant 2 year old. Anyway, I think she gets the message.
You are more than welcome to come today, says I. 'oh I'm busy today, I have to see ...' was the reply.
As you wish.
<shrug><sigh>
Like I said, the petulance of a two year old.
I'm in a much better place this afternoon - I can laugh about this today.
Off now buying eye shaddow and assorted other stuffs. Great, I get to play with all the makeup in Booties! See, there is an upside to cancer; I get to talk to 18 yr old pretty little things about what's the best eyeliner ...
Sometimes to speak to an adult the only way is to address the child.. Job done, it's a bit like speaking to a petulant 2 year old. Anyway, I think she gets the message.
You are more than welcome to come today, says I. 'oh I'm busy today, I have to see ...' was the reply.
As you wish.
<shrug><sigh>
Like I said, the petulance of a two year old.
I'm in a much better place this afternoon - I can laugh about this today.
Off now buying eye shaddow and assorted other stuffs. Great, I get to play with all the makeup in Booties! See, there is an upside to cancer; I get to talk to 18 yr old pretty little things about what's the best eyeliner ...
Yay, yay and tripple yay.
Well chaps and chapesses, we seem to be moving forward in a big way. Mask early next week, planning CT scan to follow the next day and consultant meeting at the end of the week. It's the perfect antidote to midweek histrionics.
Oh... and the best of the bestest bits. She's been moved to a side room all by herself for some peace and quiet until her discharge ...... on Tuesday.
I can only describe my feelings right now as exhausted relief. She game me the most beautiful smile as I left and to know that she can sleep better means I too will sleep better. Job done. Good day. Now, beer and a cheesie movie beckon.
Well chaps and chapesses, we seem to be moving forward in a big way. Mask early next week, planning CT scan to follow the next day and consultant meeting at the end of the week. It's the perfect antidote to midweek histrionics.
Oh... and the best of the bestest bits. She's been moved to a side room all by herself for some peace and quiet until her discharge ...... on Tuesday.
I can only describe my feelings right now as exhausted relief. She game me the most beautiful smile as I left and to know that she can sleep better means I too will sleep better. Job done. Good day. Now, beer and a cheesie movie beckon.
Edited by drivin_me_nuts on Thursday 7th October 22:25
Thanks for the replies. It's great to read a reply from you BVG - you disappeared for so long I thought you'd taken than van of yours on a world tour! I will look into a voice. I am hoping that the speech therapist will be able to suggest something soon, but if she does need a voice, I might struggle trying to find one that includes a certain element of 'feisty' in it.
As for the movie last night.. lets just say I got past the opening few scenes, but it was close
We will talk about the wedding again soon. At the moment it was put slightly onto the back burner as the imminent need has receded slightly. The dietician is looking into a low profile feeding tube which would mean that she could wear my favourite dress, a figure hugging corestried delight ... we'll see. (Perhaps I should think less about that the frockerie aspects and just make sure we get to the reg office in the first place!)
I can't tell you how exciting it is to be writing of lighter things. I am so mindful of not dropping the ball, or wishing for too much... you know what I mean, but to be able to share some happier thoughts and words makes me feel so emotional - but in a nice way, a happy way.. a relief way.
Thanks for your ongoing support and kindness, it means so very much.
As for the movie last night.. lets just say I got past the opening few scenes, but it was close
We will talk about the wedding again soon. At the moment it was put slightly onto the back burner as the imminent need has receded slightly. The dietician is looking into a low profile feeding tube which would mean that she could wear my favourite dress, a figure hugging corestried delight ... we'll see. (Perhaps I should think less about that the frockerie aspects and just make sure we get to the reg office in the first place!)
I can't tell you how exciting it is to be writing of lighter things. I am so mindful of not dropping the ball, or wishing for too much... you know what I mean, but to be able to share some happier thoughts and words makes me feel so emotional - but in a nice way, a happy way.. a relief way.
Thanks for your ongoing support and kindness, it means so very much.
Another good day. All heading in the right direction. We spent an antertaining few minutes raiding the trachy products catalog. The staff sister has been so helpful and she 'won't let us go without a decent amount of supplies' She's been so lovely and helpful. I can't really think of a better place to be if you need medical care, they really are ace and I can't praise them enough.
It's funny how the body, once it rediscovers sleep then falls into a big sleep 'hole'. She slept much better last night and today as well and for the first time in all of this, she was sleeping whilst I was there. I take this as a good sign and one that finally she can get some peace and quiet. They are going to do some enhanced obs for her over the weekend re the cyst. They are not sure if/what the infection is so if it does not start to clear soon they will further investigate. Maybe it's just necrosis from the tumour? Who knows.
Anyway, she's in good spirits, but just a little worn down/out at the moment. Nowt that a good nights sleep won;t fix. I think that's me off to bed as well - i'd be deluding myself if I thought I could even sit in front of the box for five minutes without crashing out.
It's a bit of an adventure all of this. Sometimes, just sometimes, at the end of a rollercoaster week, it's good to look back and reflect on how far you've come and what you've achieved. This week I think we dun good. It's not easy, but actually something stronger has come through. Call it resolve, pig headedness, or something else entirely different, but at the end of this week i'm different to the man I was at the beginning. This disease is making me stronger. I can't explain it, I don't even know how to begin, it seems non-sensical in many ways, but surely and steadily it is. Throughout I have drawn strength from her great resolve and determination. Finally I am beginning to feel that I can be the man I always wanted to be for her. I love her so dearly, she means the world to me in every way and finally I can show her the strength that I have and that I give to her with all my heart. I wish I could give her some of me. I would do anything, give anything to have her well and strong. But all i've got is what I am. She can have it all, every last drop. She is my love and I am hers. We are for ever bound. In that lies my strength and that is what gives me the resolve to go on. Night all.
It's funny how the body, once it rediscovers sleep then falls into a big sleep 'hole'. She slept much better last night and today as well and for the first time in all of this, she was sleeping whilst I was there. I take this as a good sign and one that finally she can get some peace and quiet. They are going to do some enhanced obs for her over the weekend re the cyst. They are not sure if/what the infection is so if it does not start to clear soon they will further investigate. Maybe it's just necrosis from the tumour? Who knows.
Anyway, she's in good spirits, but just a little worn down/out at the moment. Nowt that a good nights sleep won;t fix. I think that's me off to bed as well - i'd be deluding myself if I thought I could even sit in front of the box for five minutes without crashing out.
It's a bit of an adventure all of this. Sometimes, just sometimes, at the end of a rollercoaster week, it's good to look back and reflect on how far you've come and what you've achieved. This week I think we dun good. It's not easy, but actually something stronger has come through. Call it resolve, pig headedness, or something else entirely different, but at the end of this week i'm different to the man I was at the beginning. This disease is making me stronger. I can't explain it, I don't even know how to begin, it seems non-sensical in many ways, but surely and steadily it is. Throughout I have drawn strength from her great resolve and determination. Finally I am beginning to feel that I can be the man I always wanted to be for her. I love her so dearly, she means the world to me in every way and finally I can show her the strength that I have and that I give to her with all my heart. I wish I could give her some of me. I would do anything, give anything to have her well and strong. But all i've got is what I am. She can have it all, every last drop. She is my love and I am hers. We are for ever bound. In that lies my strength and that is what gives me the resolve to go on. Night all.
IforB said:
When I was in for the first attempt at a stem cell transplant, I kept getting random infections that initially couldn't be traced. After a few weeks of IV anti-biotics, anti-virals and anti-fungals they came to the conclusion that it was because of the necrosis of the cancer in my spleen after it had been wopped by the chemo and killed off. So in a way the infection was a good thing, even if it did nearly kill me!
This is what I am thinking and the missus says exactly the same thing. There doesn't have to be an infection per se - it could simply be the necrosis of the tumour that has found the easiest route out. The worrying thing is it has left a cavity/pocket just above the trac and there is a depression in the side of her trachea as well and I think this is the reason why they are being more alert. Obviously they don't want something eating away at the trachea itself. I know they will be doing closer obs over the weekend, including some more blood work. Last night I did ask about her blood results and she has always been close to borderline anaemia, which probably doesn't help the healing. I am hoping they have the latest results back by the time I go in later.TBO i'm not as worried as I was the last time. The cyst is freely draining and what comes out isn't nearly as offensive as before. I know it's all part and parcel of the package of cancer, but it would make a world of difference if these niggly thngs would just bugger off for a while and leave her the chance to regain her strength!
Odd isn't it, the ageless humour in bodily functions. It's great to read that your dad is so well sorted. I hope these are happy days with life lasting memories.
Another good day, hospital weekends do drag as the pace of life fades to, forgive the expression, the skeleton crew. A little more oramorph, still piddly doses of which she takes half, but she is become more willing to take them, which is some ways is a relief (for me anyway) as I hate to see her in pain. A bit more rest and finally she seems to have hit the wall of sleep which means she drifts off even when I am there.
This blooming trac is going to be a PITA, as it needs cleaning every 4 hours. Unbroken sleep for her seems to be a long distant and faded memory. Bugger, I was rather hoping some sense of sleep normality might be returning. If the cleaning time can be stretched to six hours, that would be a good thing.
Another good day, hospital weekends do drag as the pace of life fades to, forgive the expression, the skeleton crew. A little more oramorph, still piddly doses of which she takes half, but she is become more willing to take them, which is some ways is a relief (for me anyway) as I hate to see her in pain. A bit more rest and finally she seems to have hit the wall of sleep which means she drifts off even when I am there.
This blooming trac is going to be a PITA, as it needs cleaning every 4 hours. Unbroken sleep for her seems to be a long distant and faded memory. Bugger, I was rather hoping some sense of sleep normality might be returning. If the cleaning time can be stretched to six hours, that would be a good thing.
Edited by drivin_me_nuts on Sunday 10th October 01:57
Looking up a bit more. No real drama with respect to the cyst. Nothing untowards going on, no change in antibiotics needed and no real drama regarding the tumour itself today. So we wait for next week. Nothing planned for tomorrow - some aspects deferred to thursday which is handy actually as we can get all the bits and pieces done at the same time.
It's been a quiet weekend and a positive one at that. It's funny how there is always a lag of several days between events and talking about the events. I know it;s just brain processing time, but to have an afternoon of calm serenity was welcome and very precious indeed.
Precious seems to be a word I use a lot at the moment. Days are precious, time is precious, moments are precious; it's a word that has taken on a meaning and a gravitas all of its own recently. It's also a word that in some bizarre way my mind also associates with being chased by the 'something'. When you live with this you realise that no matter how well balanced you feel you know that biochemistry is one step away from tilting the pinball table against you. After a while you do learn to accept that and then a while after that ... you really learn to accept it. Then it doesn't seem so scary any more and precious becomes of the now, of the moment and not precious as a substitute for last.
We had a lovely visitor today. I surprised her with someone we have only very recently met, who my missus has made a great impression on. It touched me that someone who was a stranger until a handful of weeks ago cuddled her and kissed her like a long lost friend. To witness that made me feel very happy indeed. She has always touched people my missus, for many reasons she has never been one to forget and even now, in a bed in a hospital separate from the world at large she still makes friends. She has always been one of those people with that 'X' factor, that ability to walk into a room and own it completely. She's not very tall, it would be so easy to miss her, but when she enters the room, the room stops. She went to a conference in Cold Spring Harbour a few years back. I was not with her that year and when she returned it took someone else to tell me she had been awarded a prize for the most innovative research. When she told me about it she just shrugged her shoulders and told me not to make a fuss. She just gets on with it, she has always done it her way, with modesty, humour and a pragmatism that to this day I find remarkable. I asked her today if she is bothered by any of this and again she shook her head and wrote not really. She is more concerned for other people, how they are coping than she is for herself. Left brained to the very core and it is that logical approach that gets her through this. I've written elsewhere that it is because of the way that she is that lets me be the way I am. I believe that more every day. She gives me the space to handle this in my way and deal with the bits I struggle with in the way I need. It was always going to be the right brained (emotive) stuff for me that was going to be the hardest to handle. Living with someone who understands what I need so well has helped me get through this. That's the thing I have learned and continue to learn with this. It's the unsaid things that are the real killer, the 'i'm scared that you're are going to die' thing, the 'don't leave me..' stuff that when remained unsaid eats away as a secondary to cancer. Once it's out in the open it can be dealt with. You can find a place for it, make sense of it, put it into a context and move on. When it remains unsaid and unvoiced then it does so much core damage.
The day I told her I was scared of her dying and I begged the cancer not to take her was the worst day in all of this. It was the day I felt that I had lost control. That cancer had 'won' and that I was at its mercy. I was so very wrong. It was the day I started to live with cancer and to face up to my fears and move away from them. Yes I am scared of her dying, of course I am. Yes I occasionally wonder at the 'what ifs...', but not nearly as much and they don't hold me to ransom any more. She knows I don't want her to die. She knows I want her to live and get better and thrive and a million other things besides. But in telling her I voiced something fundamental that I needed to say, to her and no one else. It's done now and the brain moves on... to other priorities such as cleaning the house and buying new bedding and sorting out where things need to go.
I hope this all makes sense. Sometimes i'm not sure, but it seems to me that the more you deal with the hidden stuff, the 'i don't want to talk about it' ...; stuff, the more you are able to live your life and at the end of the day, it's the living that matters. Dieing takes but a handful of moments and little effort. The thrill of the game is in the living and I live in the hope for a long and entertaining game.
It's been a quiet weekend and a positive one at that. It's funny how there is always a lag of several days between events and talking about the events. I know it;s just brain processing time, but to have an afternoon of calm serenity was welcome and very precious indeed.
Precious seems to be a word I use a lot at the moment. Days are precious, time is precious, moments are precious; it's a word that has taken on a meaning and a gravitas all of its own recently. It's also a word that in some bizarre way my mind also associates with being chased by the 'something'. When you live with this you realise that no matter how well balanced you feel you know that biochemistry is one step away from tilting the pinball table against you. After a while you do learn to accept that and then a while after that ... you really learn to accept it. Then it doesn't seem so scary any more and precious becomes of the now, of the moment and not precious as a substitute for last.
We had a lovely visitor today. I surprised her with someone we have only very recently met, who my missus has made a great impression on. It touched me that someone who was a stranger until a handful of weeks ago cuddled her and kissed her like a long lost friend. To witness that made me feel very happy indeed. She has always touched people my missus, for many reasons she has never been one to forget and even now, in a bed in a hospital separate from the world at large she still makes friends. She has always been one of those people with that 'X' factor, that ability to walk into a room and own it completely. She's not very tall, it would be so easy to miss her, but when she enters the room, the room stops. She went to a conference in Cold Spring Harbour a few years back. I was not with her that year and when she returned it took someone else to tell me she had been awarded a prize for the most innovative research. When she told me about it she just shrugged her shoulders and told me not to make a fuss. She just gets on with it, she has always done it her way, with modesty, humour and a pragmatism that to this day I find remarkable. I asked her today if she is bothered by any of this and again she shook her head and wrote not really. She is more concerned for other people, how they are coping than she is for herself. Left brained to the very core and it is that logical approach that gets her through this. I've written elsewhere that it is because of the way that she is that lets me be the way I am. I believe that more every day. She gives me the space to handle this in my way and deal with the bits I struggle with in the way I need. It was always going to be the right brained (emotive) stuff for me that was going to be the hardest to handle. Living with someone who understands what I need so well has helped me get through this. That's the thing I have learned and continue to learn with this. It's the unsaid things that are the real killer, the 'i'm scared that you're are going to die' thing, the 'don't leave me..' stuff that when remained unsaid eats away as a secondary to cancer. Once it's out in the open it can be dealt with. You can find a place for it, make sense of it, put it into a context and move on. When it remains unsaid and unvoiced then it does so much core damage.
The day I told her I was scared of her dying and I begged the cancer not to take her was the worst day in all of this. It was the day I felt that I had lost control. That cancer had 'won' and that I was at its mercy. I was so very wrong. It was the day I started to live with cancer and to face up to my fears and move away from them. Yes I am scared of her dying, of course I am. Yes I occasionally wonder at the 'what ifs...', but not nearly as much and they don't hold me to ransom any more. She knows I don't want her to die. She knows I want her to live and get better and thrive and a million other things besides. But in telling her I voiced something fundamental that I needed to say, to her and no one else. It's done now and the brain moves on... to other priorities such as cleaning the house and buying new bedding and sorting out where things need to go.
I hope this all makes sense. Sometimes i'm not sure, but it seems to me that the more you deal with the hidden stuff, the 'i don't want to talk about it' ...; stuff, the more you are able to live your life and at the end of the day, it's the living that matters. Dieing takes but a handful of moments and little effort. The thrill of the game is in the living and I live in the hope for a long and entertaining game.
-Pete- said:
I think you write very well, not many of us could transfer our thoughts, hopes, fears and wishes into a PH post. Many of the people replying have found themseleves in equally unbearable situations, but not many of us could express what we're going through. I wish you both strength and a good week!
Thank you. I have found so many of the replies invaluable. From Nina suggesting chillows, that have been an absolute godsend this week and last, to being given a shove when I was feeling very wobbly, the support here has been wonderful. It made me laugh out loud, the daft thread by Luftwaffe(?) bemoaning PH - this is the side of PH that he missed; amazing people who don't think twice about offering their support. I never used to write, I don't think i'm particularly good at it, but what I write I try to write unfiltered because then I am being true to myself and that for me at the moment is very important. I am glad that people do find it helpful because I know that sometimes it takes someone elses words to help me understand how I feel and I know if that's true for me, then it must work the other way as well. I said to myself i'd do it until it stopped being helpful or the forum got sick of reading my stuff. Until either of these events, my rambing late night thoughts meander on. Thanks for your support and encouragment, it is greatly appreciated.Revision to plan, There is the intention of keeping her in until at least the first radiotherapy to see how she reacts to it. When it starts is as yet to be confirmed. I think it's a good call. The last thing is for there to be some form of post radio crisis that she needs immediate attention for. We are some minutes away from the hospital and there are some scenarios that have crossed my mind that I don't want to think about, but have been bubbling away in the back of my mind. I think she's a bit disappointed, but I think 'safe' is something that is important and is a major consideration in all of this. Though, as has already been pointed out, what could actually be done if she does react badly to the radio anyway... is a point that has been left hanging. Radio is fast turning into the kill or cure bogeyman. She just has to get through the first two weeks and all the evidence is that it gets easier.
I think I am going to get that tea mug i've seen an image of posted around PH from time to time - no idea where to get it from though. I think I need it as a constant daily reminder and tea comforter ... Keep calm and carry on. Thats' the one.
I think I am going to get that tea mug i've seen an image of posted around PH from time to time - no idea where to get it from though. I think I need it as a constant daily reminder and tea comforter ... Keep calm and carry on. Thats' the one.
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