The waiting is the hardest bit
Discussion
littlegreenfairy said:
Have you made her hospital room a bit more like home? Some bits and bobs around the place and a lovely duvet? Probably suggesting stuff that you've already done but it crossed my mind today whilst cooking. What about taking your own mug there that you drink from, and leave it at night so it kinda leaves you there?
LGF, she does not want anything from home - she does not want 'hospital contamination' as she calls it. I will take in a mug tomorrow and a few other little bits and pieces. I don't want to shift focus, as in this is still very much short term, but I have a 'feeling' that will extend by at least several more weeks. Being in a side room is proving very useful indeed, that extra bit of privacy makes a great deal of difference.I shall go and spend all day with my missus today. Today is one of those days when the right side needs a lot more support. All this lack of sleep and last weeks stress has finally caught up with me. I feel like i've been hit by a train and there are parts of me that need to be close and give and reveive that closeness in equal measure. No idea where my headspace is today, other than to say completely empty. Some days are like wading through treacle.
Good news, the consultant has said there is no reason for her to stay., Yay. Bad(ish) news there is something very strange happening with her throat cyst so the ward sisters want her to stay until thursday. So we plan for thursday after various meetings have taken place. It's all looking positive. She is in a much much better place, not just in how she looks but in everything; feeding, rest, sleep, energy.. wellness, for want of a word. Just for a moment you could easily forget that she is so very ill. Her eyes sparkle and she's got her cheeky smile back. The nurses give her hugs and say they'll miss her when she goes. Crossed fingers for thursday. If you don't hear from me tomorrow it's because i'll be up to my neck in dusters! It's so exciting, I can't wait to have her home again!
Night all
Night all
br d said:
Here's hoping you're up to your ears in housework DMN! Fingers crossed she comes home tomorrow.
ta 
5 minute breather <reaches for mother's little helper>. Even if I say so myself, I look damned fine in rubber gloves and pinny! (OK, so it is a guinness pinny - but never the less, damn i'm sexy ! * )Right, back to it...
* some hope
BIg day today. Nervous as hell this morning. Lots to do before she comes home, including yet another clinical meeting. No idea what the big banana will say but what ever it is we will as always go through it hand in hand. This last three weeks has been a rollercoaster of raw emotion, stress and at times mental exhaustion beyond anything I have ever known. Perhaps for the both of us tonight will be the first night we can both sleep in peace. Here's hoping. But first, mask, meeting, goodbyes and at the end of all of this a nice big brew - still haven't had a chance to get the mug. I will need to have a look around to see if it's in one of Brightons more eclectic shops. Keep calm and carry on - yes if you're a swan that is; calm on the surface, but underneath paddling like xxxx.
Oh the best laid plans ...
It was so simple really, sort out the mask, have meetings and go home.
But of course, nothing ever goes quite to plan. She is fine, in fact more than able to come home and she really does want to come home ... but she cannot because she does not have a spare tracy tube and the ward won't release her without one just in case it falls out, or something happens. TBO having taken one look at what are in effect surgical pliers that you are supposed to use to keep the stoma open if you don't have a tube, I can see why. Tomorrow ... or Monday. Yep Monday. The spare was ordered a week ago but is still yet to materialise on the ward. Dear reader I will leave it to your imagination to fill in the blanks of the words I feel like writing now. She shrugged her shoulders when they said it to her, but she really needs and wants to come home - that need is growing by the hour. Monday will make in effect a month.
On the positive side the mask making went well and the CT plan scan was stressless. Radio is scheduled to start thursday next week. Having had a look at the CT slices with her consultant today it's blinding obviously that she so very nearly died that tuesday. There is no space and the tumour is running rampant throughout her neck. For many reasons I do not want to write about prognosis, but today the pen scribbled some more and we stay positive for it tells us little that we did not already know. I think the consultant almost cried. When he said to her what he thought and wrote of his beliefs and expectations she wrote that there are people worse off than herself and that she doesn't live a moment of her life in regret, I could see him shake. I shall return to the ward later and I shall be there all night. I think we could both do with a little head space and time to gather our thoughts before I return. Hope is never lost I said in the meeting and then I said, and I don't know why, rage againt the dying of the light, do not go gently into the night. She smiled, shook her head and wrote never.
Nothing changes, the pen may write what it wishes. I draw strength from her courage and determination. She draws strength from my love. The pen may write, but this story is far from told, there are many lines that as yet remain blank pages.
Tea, wash face, ward. Night all.
It was so simple really, sort out the mask, have meetings and go home.
But of course, nothing ever goes quite to plan. She is fine, in fact more than able to come home and she really does want to come home ... but she cannot because she does not have a spare tracy tube and the ward won't release her without one just in case it falls out, or something happens. TBO having taken one look at what are in effect surgical pliers that you are supposed to use to keep the stoma open if you don't have a tube, I can see why. Tomorrow ... or Monday. Yep Monday. The spare was ordered a week ago but is still yet to materialise on the ward. Dear reader I will leave it to your imagination to fill in the blanks of the words I feel like writing now. She shrugged her shoulders when they said it to her, but she really needs and wants to come home - that need is growing by the hour. Monday will make in effect a month.
On the positive side the mask making went well and the CT plan scan was stressless. Radio is scheduled to start thursday next week. Having had a look at the CT slices with her consultant today it's blinding obviously that she so very nearly died that tuesday. There is no space and the tumour is running rampant throughout her neck. For many reasons I do not want to write about prognosis, but today the pen scribbled some more and we stay positive for it tells us little that we did not already know. I think the consultant almost cried. When he said to her what he thought and wrote of his beliefs and expectations she wrote that there are people worse off than herself and that she doesn't live a moment of her life in regret, I could see him shake. I shall return to the ward later and I shall be there all night. I think we could both do with a little head space and time to gather our thoughts before I return. Hope is never lost I said in the meeting and then I said, and I don't know why, rage againt the dying of the light, do not go gently into the night. She smiled, shook her head and wrote never.
Nothing changes, the pen may write what it wishes. I draw strength from her courage and determination. She draws strength from my love. The pen may write, but this story is far from told, there are many lines that as yet remain blank pages.
Tea, wash face, ward. Night all.
My missus is getting ready... so please don't shout at me for posting! It helps me too.
First I want to say a big thankyou from my missus to all of you wishing her support. I showed her this thread late last night and she wanted to thank you all for your support and kind words. She had a big smile of surprise when I showed her the thread - she knows I've been writing it, but I don't think she realised just how many people wish her well. She said it means a great lot and really, her smile was huge. Thank you so much from the both of us. It means so much.
What can I say that you haven't already assumed or worked out for yourselves. Well in many respects the hardest part of this is about to begin. Radio starts next week and it's going to be an acute adventure into yuk by all accounts. Fortunately it's only two weeks to start with but the consultant is configuring Mr X Ray to hit with as hard a dose as he can ethically do, whilst leaving enough in reserve for a second bash next month if it all goes to plan. We have lots to do in the meantime to prepare ourselves so it's going to be a few days of serious head work.
I think for the first time in a long time she slept very well. It was so reassuring to have her home and I know imagination can run wild at times, but I swear the house seems happier at her return. Weird, but there you go. For a few minutes she laid by my side and I put my arms around her and held her tight. We were back at the beginning of June. Our Acer had it's new leaves of vibrant red, the day was warm, and the willow was shimmering in the afternoon sun. It was before cancer was a cloud. I closed my eyes and she did the same and I feld her tight and tears came down my face. For a few moments it was perfect. Then the district nurse rang <sigh> You take your moments when you can - you become a 'moment thief' and it's so good to steal a few precious moments of love in the routine of care.
That call was very reassuring, it's good to know that as well and in addition to all the well wishes and support here and in the 'real world' there is also a DN available 24/7. Carelink is planned for the week as well, so that is another practical thing sorted. But bloody hell, we eat dressings. I think next week we'll have an NHS artic to ourselves - first job of the morning, buy another storage unit. She has come down now. I can hear the so familiar sounds of heels walking down stairs. God i've missed that sound. Stuff to do, life to live. You won't hear from me for a while. Your request for me to depart a while have been duly noted! Thanks.
First I want to say a big thankyou from my missus to all of you wishing her support. I showed her this thread late last night and she wanted to thank you all for your support and kind words. She had a big smile of surprise when I showed her the thread - she knows I've been writing it, but I don't think she realised just how many people wish her well. She said it means a great lot and really, her smile was huge. Thank you so much from the both of us. It means so much.
What can I say that you haven't already assumed or worked out for yourselves. Well in many respects the hardest part of this is about to begin. Radio starts next week and it's going to be an acute adventure into yuk by all accounts. Fortunately it's only two weeks to start with but the consultant is configuring Mr X Ray to hit with as hard a dose as he can ethically do, whilst leaving enough in reserve for a second bash next month if it all goes to plan. We have lots to do in the meantime to prepare ourselves so it's going to be a few days of serious head work.
I think for the first time in a long time she slept very well. It was so reassuring to have her home and I know imagination can run wild at times, but I swear the house seems happier at her return. Weird, but there you go. For a few minutes she laid by my side and I put my arms around her and held her tight. We were back at the beginning of June. Our Acer had it's new leaves of vibrant red, the day was warm, and the willow was shimmering in the afternoon sun. It was before cancer was a cloud. I closed my eyes and she did the same and I feld her tight and tears came down my face. For a few moments it was perfect. Then the district nurse rang <sigh>
You take your moments when you can - you become a 'moment thief' and it's so good to steal a few precious moments of love in the routine of care. That call was very reassuring, it's good to know that as well and in addition to all the well wishes and support here and in the 'real world' there is also a DN available 24/7. Carelink is planned for the week as well, so that is another practical thing sorted. But bloody hell, we eat dressings. I think next week we'll have an NHS artic to ourselves - first job of the morning, buy another storage unit. She has come down now. I can hear the so familiar sounds of heels walking down stairs. God i've missed that sound. Stuff to do, life to live. You won't hear from me for a while. Your request for me to depart a while have been duly noted! Thanks.
Thic cancer is a demanding mistress at times. The weekend was lovely and peaceful and both of us actually had some rest and quiet. Funny how quickly the mind forgets the last month - mind you most women with multiple kids already know that ... I mean there's no way you'd let him touch you with that if you did not have some evolutionarily developed forgetfulness.
Cue this morning to be woken with a large thump of the missus slamming her feet on the floor waking me from my slumber. Cue paramedics, drama blues-and-twos and a fast and speedy trip to the hospital and time in A&E and time on the ward we only just left. Anyway, she's home now, we know more about what we need to do with regards to suctioning, we now have a spare suction pump because the one at homes flaked out at entirely the wrong moment. Keep calm and carry on. Belive me it's s
t scary when you're waiting for the parametic to arrive, there's barely controlled panic at not being able to breathe and you quite literally stand there in a hyper controlled state, whilst every scrap of your being wants to do the opposite. We learned a lot today about managing tracy's. More soberingly, I realised we are on our own in an emergency. We are the best people who know about tracy and the suctioning and how deep and how long etc. The paramedics helped, they certainly did, but it's send a cold hard chill down my spine to realise that in an emergency we are pretty much it. We have to rely on our own calm interventions. Pretty much all the ambulance crew can do is get her to the hospital ASAP. Keep calm and carry on. I was writing part in jest, part in sanguine humour when I wrote about it. I should not have. I've never written a truer word. Keep calm and carry on. Said this evening with a cold hard steel to it. There's no longer a humour to it, it's the sobering reality.
Cue this morning to be woken with a large thump of the missus slamming her feet on the floor waking me from my slumber. Cue paramedics, drama blues-and-twos and a fast and speedy trip to the hospital and time in A&E and time on the ward we only just left. Anyway, she's home now, we know more about what we need to do with regards to suctioning, we now have a spare suction pump because the one at homes flaked out at entirely the wrong moment. Keep calm and carry on. Belive me it's s
t scary when you're waiting for the parametic to arrive, there's barely controlled panic at not being able to breathe and you quite literally stand there in a hyper controlled state, whilst every scrap of your being wants to do the opposite. We learned a lot today about managing tracy's. More soberingly, I realised we are on our own in an emergency. We are the best people who know about tracy and the suctioning and how deep and how long etc. The paramedics helped, they certainly did, but it's send a cold hard chill down my spine to realise that in an emergency we are pretty much it. We have to rely on our own calm interventions. Pretty much all the ambulance crew can do is get her to the hospital ASAP. Keep calm and carry on. I was writing part in jest, part in sanguine humour when I wrote about it. I should not have. I've never written a truer word. Keep calm and carry on. Said this evening with a cold hard steel to it. There's no longer a humour to it, it's the sobering reality.BlackVanGirl said:
Aaaargh, that's no good. Sorry you guys had to experience that hopefully back at home and all well (relatively) now.
Ideas: foot pump suction for backup and in case of long powercut
Ambu-bag for giving rescue breaths via the trach (you can also do mouth to tracheotomy in an emergency)
Mrs signs her phone up to the text 999 service
Cheat Sheet with essential info in an emergency for your missus to give to paramedics in an emergency - diagnosis, surgical history, meds, anything else she might need to tell them.
Assume you already have spare trach tubes etc.
hopefully back at home and all well (relatively) now.Ideas: foot pump suction for backup and in case of long powercut
Ambu-bag for giving rescue breaths via the trach (you can also do mouth to tracheotomy in an emergency)
Mrs signs her phone up to the text 999 service
Cheat Sheet with essential info in an emergency for your missus to give to paramedics in an emergency - diagnosis, surgical history, meds, anything else she might need to tell them.
Assume you already have spare trach tubes etc.
Hi Becca, thanks for the info. I hadn't thought of a powercut before. Do you have any idea where you can buy such a manual suction pump from? And and ambu bag is something I have never heard of before. Can you explain more.
We now have two cheat sheets, one explaining her history and medical details and the other the lists of do's and don'ts.
We do have a spare tube - a generic one at the moment as the proper one is still en route from Germany (10 days now!).
I'm wondering now at the idea of getting some kind of portable battery pack - something that would give 10-15 minutes mains electrical power in an emergency. I have no idea if such a thing exists, but for sure we have had a few powercuts over the last few years and some of them have been longer than a few minutes.
Thanks very much for the suggestions.
It did surprise me that the ambulance crews knew so little about tracys. On our way back from the hospital I was thinking that there even in a town/city as small as Brighton (~300k people) there mush be a good few hundred people with them and by the nature of the often underlying medical conditions they must be visited on occasion. Something else to be aware of. Funny how the brain thinks ahead. We live on a steepish hill and last year it was iced up for two weeks (RIP M5 ...). Winter tyres are also part of the buy list. No idea how an ambulance could get down up/down the hill if it is needed. We could at least meet them on the main road in an emergency. I know you can end up like Chicken Licken with this stuff, thinking about all the what if's .... but you try and sort out all the practical ones you can think about - and it's an ever growing list. If I hadn't already realised yesterday that she needed me/someone constantly about, today I certainly do. I know she hates that, but unfortunately for now it has become the reality.
Oh, I think I might have burned my District Nurse (DN) bridges today. She called by way of courtesy for tomorrow and I gave her a BIG shopping list. I think I shall be persona non gratia from now on...
Intersting the difference regular nebulisation makes. It's definately the answer to some of these problems with the traccy. Now, is it possible to become addicted to saline. Anyway proper DN visit tomorrow and the Mac nurse is scheduled to visit sometime soon so all the little pieces of the jigsaw are slotting into place for now. It's all positive. Funny really, I am much less anxious about radiotherapy than I was about chemotherapy, yet chemo did bugger all and radio almost killed her. The brains got its bloomin wires crossed. I refilled my rucksack today, you won't believe the amount of different stuff I carry around now. I hope I never get stopped by the police, i'll have the devil's own job of trying to explain away most of it!
I love the sound of my missus walking around. Time to go, lots to do before bedtime. Thanks for all the advice today, it's been a great help. Pete you are right - I can buy pretty much anything now... Mindyou, I haven't quite gotten up the courage to ask her if we can get a V8 chainsaw to get into the bloody shrinkwrap dressings... It;s only a matter of time before I do a Basil Fawlty on them and attack them with something hard and wooden. Night all.
Intersting the difference regular nebulisation makes. It's definately the answer to some of these problems with the traccy. Now, is it possible to become addicted to saline
. Anyway proper DN visit tomorrow and the Mac nurse is scheduled to visit sometime soon so all the little pieces of the jigsaw are slotting into place for now. It's all positive. Funny really, I am much less anxious about radiotherapy than I was about chemotherapy, yet chemo did bugger all and radio almost killed her. The brains got its bloomin wires crossed. I refilled my rucksack today, you won't believe the amount of different stuff I carry around now. I hope I never get stopped by the police, i'll have the devil's own job of trying to explain away most of it!I love the sound of my missus walking around. Time to go, lots to do before bedtime. Thanks for all the advice today, it's been a great help. Pete you are right - I can buy pretty much anything now... Mindyou, I haven't quite gotten up the courage to ask her if we can get a V8 chainsaw to get into the bloody shrinkwrap dressings... It;s only a matter of time before I do a Basil Fawlty on them and attack them with something hard and wooden. Night all.
A few minutes peace and quiet. Tomorrow afternoon it all starts again. I hope this time it isn't so bad, this time it doesn't cause the drama of before, this time it means no trips in ambulances and weeks on wards. There is so much to do now in the course of the day that there is little time for the mind to begin to address, let alone resolve the nagging thoughts and worries. We go in with eyes open and full of hope for a positive outcome and a silent prayer to the universe itself. If you're listening, let tomorrow be the start of the road home. I don't mind if it's a bumpy road, that's OK by us, I don't mind the odd hiccup, the odd stone, dip or rise, but just let us know, give us a sign along the way. You don't even have to write the whole word on the sign, just the letters Ho will do. Just so we know.
Recipe: A day in radiotherapy land
Ingredients: Take one missus, one traccy box, one mobile suction machine, one feeding rucksack, one bowl, paper for writing, one nebuliser, one other rucksack filled with everything including the kitchen sink ..
Sit for a while waiting.
Go into a waiting room and scare the life out of all the other people waiting whilst they look on in distinct discomfort as suction machine bought into use. Wait a while longer, wait yet a while longer whilst missus goes into radio. Cross fingers, toes, legs, say a silent prayer to the gods of calmness and smooth paddling swans and then .....
I know, the suspense is killing
but I only tease when I am happy
(that might have been a clue there ... )
Yay, yay and bloody BIG yay. Done. Mask on, radio session 1 done. No big dramas. No choking, no medical emergencies (still got everything crossed and I've been busting for a pee since 9 am! will have to waith till tomorrow now!)
We've been home for a while. Relief, satisfaction, calmness, aching tiredness as you realise that you've been worried sick about it for days but now it's happened the brain goes splut. As I write she is having another neb and they are definately making a difference to the traccy performance. I saw something different on her face today in the car coming home, something that i've not seen before - something along the lines of relief. I am so proud of her, she has been amazing - oh and she's a real cuddle floozie. All the staff at the cancer centre cuddle her as soon as they see her and their smiles when she comes in the room light up my world. It fills me full of hope. I saw the H today. I saw it not in the radiotherapy itself, but in something else. Of course it;s early days, but today marks the beginning of a new chapter. After waiting so long, hope starts here.
Ingredients: Take one missus, one traccy box, one mobile suction machine, one feeding rucksack, one bowl, paper for writing, one nebuliser, one other rucksack filled with everything including the kitchen sink ..
Sit for a while waiting.
Go into a waiting room and scare the life out of all the other people waiting whilst they look on in distinct discomfort as suction machine bought into use. Wait a while longer, wait yet a while longer whilst missus goes into radio. Cross fingers, toes, legs, say a silent prayer to the gods of calmness and smooth paddling swans and then .....
I know, the suspense is killing
but I only tease when I am happy
(that might have been a clue there ... )
Yay, yay and bloody BIG yay. Done. Mask on, radio session 1 done. No big dramas. No choking, no medical emergencies (still got everything crossed and I've been busting for a pee since 9 am! will have to waith till tomorrow now!)
We've been home for a while. Relief, satisfaction, calmness, aching tiredness as you realise that you've been worried sick about it for days but now it's happened the brain goes splut. As I write she is having another neb and they are definately making a difference to the traccy performance. I saw something different on her face today in the car coming home, something that i've not seen before - something along the lines of relief. I am so proud of her, she has been amazing - oh and she's a real cuddle floozie. All the staff at the cancer centre cuddle her as soon as they see her and their smiles when she comes in the room light up my world. It fills me full of hope. I saw the H today. I saw it not in the radiotherapy itself, but in something else. Of course it;s early days, but today marks the beginning of a new chapter. After waiting so long, hope starts here.
I am hoping that someone here might be able to help me.
My missus needs a pillow and the only place that sells one that will even remotely do is Ikea.
If anyone is going to Ikea soonish, would they be able to get me this specific pillow and some how drop it off to me in Brighton. There is no way I am going to be able to go there myself at the moment and unfortunately it can't be bought on line.
If by chance someone is going soon I would be very grateful indeed. Getting comfortable at the moment is very difficult indeed and I know it will make a difference.
Thanks
My missus needs a pillow and the only place that sells one that will even remotely do is Ikea.
If anyone is going to Ikea soonish, would they be able to get me this specific pillow and some how drop it off to me in Brighton. There is no way I am going to be able to go there myself at the moment and unfortunately it can't be bought on line.
If by chance someone is going soon I would be very grateful indeed. Getting comfortable at the moment is very difficult indeed and I know it will make a difference.
Thanks
Thanks for the replies. I think I might have a plan B.. (will need to ask her later!)
Radio day 2. Mask as tight as her face has blown up hugely. The reg recommended more ibuprofen by the gallon.. Wait until Monday and see how she gets on. If it shows no sign of abaiting then a short course of steroids would be the next option.
GP receptionists are amusing. Yes I know ot's friday afternoon and I won't have enough for next week. Unfortunately things change and no, I did not know that the hospital reg would tripple her dose and no, we don't have enough until Monday and yes, I would like to speak to her GP thankyou. Have a great weekend all.
Radio day 2. Mask as tight as her face has blown up hugely. The reg recommended more ibuprofen by the gallon.. Wait until Monday and see how she gets on. If it shows no sign of abaiting then a short course of steroids would be the next option.
GP receptionists are amusing. Yes I know ot's friday afternoon and I won't have enough for next week. Unfortunately things change and no, I did not know that the hospital reg would tripple her dose and no, we don't have enough until Monday and yes, I would like to speak to her GP thankyou. Have a great weekend all.
I'm sitting here at 1:15 friday/saturday morning just before we go to bed. It's odd how fast the mind adapts to the sense of 'normal' and how quickly time passes. She has been home a week now yet it seems barely five minutes. I can hear her in the other room, the nebuliser is on; an almost constant thing now and a mixture of electirical compressor and hissing pump. Simply put, it's a life saver, but one that goes about its job with an intrusive 'look at me i'm busy' type drama to it. Finally, after two weeks, we have our spare proper tracy tube. I am so glad they didn't keep her in until it arrived, I think she would have gone utterly crazy this last week.
I was back on the ward today to pick up the tube and so many people asked after her and sent their love, it was heartwarming. Sometimes it takes me by surprise - all the warmth and affection people show her and us can feel overwhelming at times.
Cancer can seem so isolating at times. Even when you are in a centre surrounded by dozens of other people all going through their own personal dramas and tragedies, it's not often a shared response. Today when she went into the radio room I was called in a few minutes later to help her clean her inner tube and as I walked out I could feel all the eyes of people looking at me. She looks the 'worst', certainly the youngest and with a tracy and a feed tube and bags and boxes all over the shop. I felt almost like an intruder when I walked out - no eye contact and it's almost as if people shrunk back into the walls. I know it's people not wanting to intrude, but at the same time I can't help but wonder whether it is their own fears and nightmares being put away somewhere deeper. Don't get me wrong i'm not criticising them, this is a bloody crap thing for all of us, yet sometimes it feels more isolating than other times - and the more isolating bit is when in the company of other people.
Anyway there is more I want to write, but bed beckons, but first reset the sodding boiler...which is in the garage and it's cold outside. Night all
I was back on the ward today to pick up the tube and so many people asked after her and sent their love, it was heartwarming. Sometimes it takes me by surprise - all the warmth and affection people show her and us can feel overwhelming at times.
Cancer can seem so isolating at times. Even when you are in a centre surrounded by dozens of other people all going through their own personal dramas and tragedies, it's not often a shared response. Today when she went into the radio room I was called in a few minutes later to help her clean her inner tube and as I walked out I could feel all the eyes of people looking at me. She looks the 'worst', certainly the youngest and with a tracy and a feed tube and bags and boxes all over the shop. I felt almost like an intruder when I walked out - no eye contact and it's almost as if people shrunk back into the walls. I know it's people not wanting to intrude, but at the same time I can't help but wonder whether it is their own fears and nightmares being put away somewhere deeper. Don't get me wrong i'm not criticising them, this is a bloody crap thing for all of us, yet sometimes it feels more isolating than other times - and the more isolating bit is when in the company of other people.
Anyway there is more I want to write, but bed beckons, but first reset the sodding boiler...which is in the garage and it's cold outside. Night all
I have to post this... a few moments of utter bliss. Well a few days ago I bought, from the catalog of dreams an air mattress. Not one of those ones with a foot pump, but a rinky-dinky built in electric hover. Oh the bliss of watching it elevate itself off the floor to its full normal bed hight. And today this morning for a couple of precious hours, there were we, sleeping together, no coughing, no nebuliser, nothing, just us, a couple of warm duvets a few moments of shared bliss and something resembling normality. treasured moments 
Oh yes and Love Film are ace, though Burn After Reading was one of the worst films i've seen. Avoid, avoid, avoid.
Oh yes and Love Film are ace, though Burn After Reading was one of the worst films i've seen. Avoid, avoid, avoid.
My missus is sleeping now and i've been up for a couple of hours. Last night we eventually got to sleep about 5am. It's surprising sometimes just how much of an effort it is to keep on top of things. At times it seems like an almost continuous process of nebs, suctioning, cleaning the inner tube and changing the dressings. The poor girl is exhausted today and quite literally, deep in the arms of morpheus.
I find that I am on constant alert. There is no music in the house anymore, any sound that could stop me hearing her stamp her feet or clap is off limits. At times, like now, it's so peaceful, yet at any minute there could be another episode, a flurry of stress activity involving the suction machine and deep suctioning and cleaning the inner tube. Even these periods of heightened activity and stress are becoming more 'normal'. What worries me is what is coming out from the inner tube, which is often very bloody and the broken off pieces of tumour are large - sometimes larger than the width of the inner tube itself. I try not to look at what's in the tissues anymore, I find it just fills me with a greater anxiety that I just don't have the time to think about, let alone resolve.
Seeing that thread here about Michael Douglas got me thinking as well. I know humour is a way to dispel the morbid and it's a very powerful coping mechanism, but somewhere deep inside it made me feel very unhappy - almost as if people were writing him off and saying his missus is back 'on the market'. Yes I know it's only black humour, but deeper down it pushed the other button, the 'never forget' button that lies at the root of the fears of her dying and my deep childlike terror of 'forgetting' memories, forgetting things and just plain old forgetting. In some respects it reminds me of the old cowboy and indian movies; get the wagons in a circle and stay inside the ring to remain protected. Mentally my mind has built a high set of defences to keep out these anxieties; the memories, the photos, recordings of her voice from when we were busy writing last year. All of this helps ground me and keep me 'safe'. I know, it's a temporary safe as any moment another piece of tumour could break off or the GUPPY could say something yet more insensitive, or a host of things, but at times I feel no different to a child holding on to its teddy for comfort. Comfort for me are the things that I hold dear and are hopes for the future, the aspirations and dreams for our individual lives and our joint life, our business and a host of other things besides. To me, my 'teddy' has become a lifesaver and the only thing at times that keeps me sane in all of this.
Funny how also the mind finds other distractions. I put food into the slow cooker yeaterday afternoon and i'm trying to cook a pork and cider casserole experiment. As I write this, I just realised why i've become so fond of the slow cooker. It's not for practical reasons, it's simply that ours has always been a house of food smells. Stews, casseroles, big food, hearty food that bubbles in pots for hours at a time, with smells that infuse the house's every room with warmth, happiness and that tangile sensation of 'home'. The cooking smells of home have become the antitode to the smell of cancer, to necrosis and dressings, to swabs and alcohol, to cavilon and worst of all, the sickly nauseating smell of morphine. It's wonderful when I think about it - the smell of food brings back such vibrant memories of happy times, of parties, of entertaining, long diner parties and longer parties. Like I said, funny how the mind works, perhaps it's finally found a sensorary way to counter the circling indians. Perhaps if I invite them in we can share a meal and laugh at this all. Perhaps at the end of it when they depart they will never return to bother us again. Us and cancer can smoke our peace pipe and agree not to disturb each other any more. It's the minds way of creating a small positive step in the challenge with cancer, but you know what, I have already tasted it this morning and I already know it's a rather delicious small step.
I find that I am on constant alert. There is no music in the house anymore, any sound that could stop me hearing her stamp her feet or clap is off limits. At times, like now, it's so peaceful, yet at any minute there could be another episode, a flurry of stress activity involving the suction machine and deep suctioning and cleaning the inner tube. Even these periods of heightened activity and stress are becoming more 'normal'. What worries me is what is coming out from the inner tube, which is often very bloody and the broken off pieces of tumour are large - sometimes larger than the width of the inner tube itself. I try not to look at what's in the tissues anymore, I find it just fills me with a greater anxiety that I just don't have the time to think about, let alone resolve.
Seeing that thread here about Michael Douglas got me thinking as well. I know humour is a way to dispel the morbid and it's a very powerful coping mechanism, but somewhere deep inside it made me feel very unhappy - almost as if people were writing him off and saying his missus is back 'on the market'. Yes I know it's only black humour, but deeper down it pushed the other button, the 'never forget' button that lies at the root of the fears of her dying and my deep childlike terror of 'forgetting' memories, forgetting things and just plain old forgetting. In some respects it reminds me of the old cowboy and indian movies; get the wagons in a circle and stay inside the ring to remain protected. Mentally my mind has built a high set of defences to keep out these anxieties; the memories, the photos, recordings of her voice from when we were busy writing last year. All of this helps ground me and keep me 'safe'. I know, it's a temporary safe as any moment another piece of tumour could break off or the GUPPY could say something yet more insensitive, or a host of things, but at times I feel no different to a child holding on to its teddy for comfort. Comfort for me are the things that I hold dear and are hopes for the future, the aspirations and dreams for our individual lives and our joint life, our business and a host of other things besides. To me, my 'teddy' has become a lifesaver and the only thing at times that keeps me sane in all of this.
Funny how also the mind finds other distractions. I put food into the slow cooker yeaterday afternoon and i'm trying to cook a pork and cider casserole experiment. As I write this, I just realised why i've become so fond of the slow cooker. It's not for practical reasons, it's simply that ours has always been a house of food smells. Stews, casseroles, big food, hearty food that bubbles in pots for hours at a time, with smells that infuse the house's every room with warmth, happiness and that tangile sensation of 'home'. The cooking smells of home have become the antitode to the smell of cancer, to necrosis and dressings, to swabs and alcohol, to cavilon and worst of all, the sickly nauseating smell of morphine. It's wonderful when I think about it - the smell of food brings back such vibrant memories of happy times, of parties, of entertaining, long diner parties and longer parties. Like I said, funny how the mind works, perhaps it's finally found a sensorary way to counter the circling indians. Perhaps if I invite them in we can share a meal and laugh at this all. Perhaps at the end of it when they depart they will never return to bother us again. Us and cancer can smoke our peace pipe and agree not to disturb each other any more. It's the minds way of creating a small positive step in the challenge with cancer, but you know what, I have already tasted it this morning and I already know it's a rather delicious small step.
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