Hi faithful blog readers,
As mum is with dad at St Johns she has asked me to give you all an update on how dad is getting on.
Well things are looking very different from when Mum last blogged. On Tuesday evening (I think, the days start to merge into one) Dad started to have a new pain in his side under his ribcage, he had a very rough nights sleep and the nurses tried everything that they could to control it for him but all day yesterday he was in continual agonising pain. (Grandma and Grandad came down from Derby yesterday morning) A series of different types of drugs were used over a few hours to try and control it for him but he got to the point where it was too much and he had to be sedated. He then had an uncomfortable afternoon where every time he woke up he was in a lot of pain and wanting to get out of bed,as I'm sure you can imagine this was so horrible to witness, its unbearable to see someone you love in that much pain and not be able to do anything for them, but finally things calmed down and he went off to sleep by about 6pm.
Mum stayed with him last night for what was a reasonably peaceful night compared to the afternoon, he had a bit of a struggle at around 6am but managed to get off to sleep again.
I haven't seen him yet today but Mum has told me that his pain appears to be a little better, its just a case of seeing how he feels every time he comes round. The doctors think that the pain may be nerve related and the morphine and various other drugs seem to be working a little better than yesterday which is an improvement. We've even had some classic random quotes from him about Giant rabbits and various other obscure things which always manage to make us laugh, dad even said yesterday "Gosh what a kafuffle!". I have suggested that mum should start writing down some of these quotes, the comical value is brilliant! (That's Dad for you)
I haven't really had a chance to put anything on here before but I just wanted to say how incredibly thankful I am to everyone who has supported Mum and Dad over this past couple of years, what a journey! The amount of loving friends and family that they have is just a witness to how amazing my parents are. I couldn't be prouder of my Mum, what a rock she is, so strong and brave and Dad is such a fighter. I am so blessed to be their daughter.
To be honest everyday is very very hard at the moment for us all, I have set up a mentality of 'One day at a time' because looking forward any more than that proves to be a bit more that I can handle but God is so so faithful, even when the heartache and pain is too much to bear he's always there to run to. I have no idea how people go through this without him by their side.
So please keep praying wonderful people, your prayers mean more than you could ever imagine and thank you again for everything.
We will blog again soon.
Lots of love,
Amy
Thursday, April 29, 2010
Wednesday, April 28, 2010
Changes....
Hi all
Just a quickie this morning ( 'oh er missus' as my 14 year old son would say and he's never even seen a 'Carry On' film!!)
I have a theory that I have been concocting over the past few weeks which I would like to share with you.....I think this weather is sent by the Lord as some sort of amazing 'I know things are really bad right now so I'm going to make the sun shine for you all in April for weeks on end which it never does and oh I'll make it about 70 degrees as well just so David can sit on his deck for a few hours and soak it up' type thing. Your thoughts on this please....
David managed to make it home for a few hours yesterday afternoon and sit on his deck in ths sun. He is looking very thin and weak but otherwise is in good spirits. There is a now a small, growing hope that he may be able to be discharged next week into the care of the community nurses if he remains stable. This is more than we had dared dream but the nurses tell me that at his stage things are obviously very unpredictable so we must continue to take things a day at a time....but while there is life....
Meanwhile I making some small changes to make life a bit easier in the face of not having my hubbie at home and I am also learning new skills such as landscaping, skip-filling and cleaning out the fish tanks! Life is change and change is often scary but I am learning that if you face up to the change you need to make rather than allowing yourself to be caught up in the 'well it's never going to be the same' mindset then actually it's ok. Life will never be the same again....I knew that a lifetime ago on a bleak December morning sitting in Dr Saunder's office in Bedford hospital.
So...I have bought myself a new lawnmower, cleaned out the garage so I can actually physically get into it (yes it was that bad!) and bought a new juicer that doesn't leak everywhere! Daft things I know but somehow they are helping me to cope because they are helping me to cope if that makes any sense at all..
Today a tonne of rockery stone and 3/4 of a tonne of topsoil are arriving so that I can finish off landscaping the front garden which is what David has been wanting to do for so long...so a busy day ahead. Dave's mum and dad arrive today for a couple of days to visit so David is planning to have a little trip out with them to his beloved boat this afternoon so will let you know how it all goes.
Keep smiling...you know you want to...Flo xx
Just a quickie this morning ( 'oh er missus' as my 14 year old son would say and he's never even seen a 'Carry On' film!!)
I have a theory that I have been concocting over the past few weeks which I would like to share with you.....I think this weather is sent by the Lord as some sort of amazing 'I know things are really bad right now so I'm going to make the sun shine for you all in April for weeks on end which it never does and oh I'll make it about 70 degrees as well just so David can sit on his deck for a few hours and soak it up' type thing. Your thoughts on this please....
David managed to make it home for a few hours yesterday afternoon and sit on his deck in ths sun. He is looking very thin and weak but otherwise is in good spirits. There is a now a small, growing hope that he may be able to be discharged next week into the care of the community nurses if he remains stable. This is more than we had dared dream but the nurses tell me that at his stage things are obviously very unpredictable so we must continue to take things a day at a time....but while there is life....
Meanwhile I making some small changes to make life a bit easier in the face of not having my hubbie at home and I am also learning new skills such as landscaping, skip-filling and cleaning out the fish tanks! Life is change and change is often scary but I am learning that if you face up to the change you need to make rather than allowing yourself to be caught up in the 'well it's never going to be the same' mindset then actually it's ok. Life will never be the same again....I knew that a lifetime ago on a bleak December morning sitting in Dr Saunder's office in Bedford hospital.
So...I have bought myself a new lawnmower, cleaned out the garage so I can actually physically get into it (yes it was that bad!) and bought a new juicer that doesn't leak everywhere! Daft things I know but somehow they are helping me to cope because they are helping me to cope if that makes any sense at all..
Today a tonne of rockery stone and 3/4 of a tonne of topsoil are arriving so that I can finish off landscaping the front garden which is what David has been wanting to do for so long...so a busy day ahead. Dave's mum and dad arrive today for a couple of days to visit so David is planning to have a little trip out with them to his beloved boat this afternoon so will let you know how it all goes.
Keep smiling...you know you want to...Flo xx
Monday, April 26, 2010
David's blog (written Sunday morning)
Sorry it has taken me so long to blog myself. I could string you a story about Florence hogging the laptop for frenzied late night shopping but you know that anyway!
As it happens she is sitting in my hospice room, pen poised, glasses perched on the end of her nose taking down my every word and looking delectable (I have insisted that she leaves that last sentence in!)
Florence has done an amazing job at keeping you all up to speed with developments that just leaves the last 24 hours or so for me.
Yesterday saw what I felt was a rapid deterioration of my health. I slept most of the day and by bedtime was only capable of feeling pain and sicking up blood. I looked into the great abyss there for a moment and it was a very scary place. My doctor whilst here (Dr Khan) suggested a plan of attack which included re-inserting the NG tube to drain my stomach and increasing the anti-emitic ie sickness medication.
Lo and behold both worked and miraculously as of 10.30 on Sunday morning I am feeling a lot perkier!
My lovely wife was here by 7.30 am bathing me, bringing me ice cold drinks (loving Volvic 'Touch of' water for anyone planning on visiting - hint hint...strawberry is the best!!) and frozen homemade lollipops courtesy of the fabulous Sarah Hearn. Seeing my missus brightened my day and has left me feeling so much better. How would I manage without her? (feel free to barf now - Florence).
A thousand thanks to all those who have visited in the last few days, including my baby brother Adrian who has not only visited but re-modelled the front garden! John and Amanda brought champagne and strawberries which was fabulous and my bessie mate Lord Burrell is another frequent visitor bless him.
Apologies to those who haven't been able to visit when I have been too poorly to see anyone....I'm afraid at the moment I just have to take it a day at a time.
Must warn you that if you do visit I can't guarantee coherent conversation (twas ever thus). I have previously engaged perplexed guests in drug induced conversations regarding Mastermind, pawnbrokers and Jugged Hare! What was that all about??
Anyway, signing off for now...time for post lunch snooze...
Much love
David
As it happens she is sitting in my hospice room, pen poised, glasses perched on the end of her nose taking down my every word and looking delectable (I have insisted that she leaves that last sentence in!)
Florence has done an amazing job at keeping you all up to speed with developments that just leaves the last 24 hours or so for me.
Yesterday saw what I felt was a rapid deterioration of my health. I slept most of the day and by bedtime was only capable of feeling pain and sicking up blood. I looked into the great abyss there for a moment and it was a very scary place. My doctor whilst here (Dr Khan) suggested a plan of attack which included re-inserting the NG tube to drain my stomach and increasing the anti-emitic ie sickness medication.
Lo and behold both worked and miraculously as of 10.30 on Sunday morning I am feeling a lot perkier!
My lovely wife was here by 7.30 am bathing me, bringing me ice cold drinks (loving Volvic 'Touch of' water for anyone planning on visiting - hint hint...strawberry is the best!!) and frozen homemade lollipops courtesy of the fabulous Sarah Hearn. Seeing my missus brightened my day and has left me feeling so much better. How would I manage without her? (feel free to barf now - Florence).
A thousand thanks to all those who have visited in the last few days, including my baby brother Adrian who has not only visited but re-modelled the front garden! John and Amanda brought champagne and strawberries which was fabulous and my bessie mate Lord Burrell is another frequent visitor bless him.
Apologies to those who haven't been able to visit when I have been too poorly to see anyone....I'm afraid at the moment I just have to take it a day at a time.
Must warn you that if you do visit I can't guarantee coherent conversation (twas ever thus). I have previously engaged perplexed guests in drug induced conversations regarding Mastermind, pawnbrokers and Jugged Hare! What was that all about??
Anyway, signing off for now...time for post lunch snooze...
Much love
David
The important stuff
Happy Monday morning to you all
Just a brief Florence blog this morning. I will post one from David this evening as he dictated one to me yesterday morning and I forgot to bring it home with me!
So just a quick update. David has gone from incredibly ill to quite well over the past couple of days. Saturday was a terrible day and they thought they were going to lose him on Saturday night but I will let David tell it for you later. I went in to the hospice at some very early hour yesterday morning but by the time I got there he was feeling a bit brighter and after a bath and some TLC he had a much better day but again more detail later.
Just a couple of things I wanted to say. Firstly all the staff at St Johns are amazing. I can't praise them highly enough and the care they give is just wonderful and they do a difficult and not very well paid job BECAUSE they care. One of the nurses who looks after David came and chatted with us yesterday and she told us that she went home in tears on Saturday night because David was in such a state and she felt so moved by his suffering. She has worked there for 12 years and yet still goes home in tears!
Also she asked me through the medium of the blog to try and help dispel the myth that hospices are scary places (obvious I suppose because of the association with death!) However for anyone who has never been to one I can honestly say that they are the complete opposite. Every time I walk in I feel peaceful, safe and calm. There is no fear and often the place is full of laughter (the nurses are always joking around with each other!)Eventually one of the things I would like to do is to be a volunteer there and to try and give a bit of something back which might help others who are going through this difficult process.
Finally I wanted to say that David and I (in those moments when he is well enough) are working things through, saying the things we need to say and talking about the important stuff like his wishes for the funeral and what happens afterwards with myself and the children. I would like to encourage all of you who has someone near and dear to do the same with them. Inevitably at a time like this you talk ahout whether it is better to be going through the suffering process like this or to walk out the door one day and never come back. There is no better - they are both shit. However what this has shown me is how important it is that if you do get hit by the symbolic bus that you have said what you need to say and written letters for your loved ones and if you have any strong feelings about burial or hymns or flowers then you have made them known. Don't leave it and think it will never happen to you. There is an immense amount of comfort in knowing that those things are in place and that I will be able to carry out David's wishes to the full as and when the time comes. It means the world to me.
Anyway..on that happy note...have a lovely day and PLEASE don't get hit by a bus...I would feel terrible!!
Over to David later
Florence x
Just a brief Florence blog this morning. I will post one from David this evening as he dictated one to me yesterday morning and I forgot to bring it home with me!
So just a quick update. David has gone from incredibly ill to quite well over the past couple of days. Saturday was a terrible day and they thought they were going to lose him on Saturday night but I will let David tell it for you later. I went in to the hospice at some very early hour yesterday morning but by the time I got there he was feeling a bit brighter and after a bath and some TLC he had a much better day but again more detail later.
Just a couple of things I wanted to say. Firstly all the staff at St Johns are amazing. I can't praise them highly enough and the care they give is just wonderful and they do a difficult and not very well paid job BECAUSE they care. One of the nurses who looks after David came and chatted with us yesterday and she told us that she went home in tears on Saturday night because David was in such a state and she felt so moved by his suffering. She has worked there for 12 years and yet still goes home in tears!
Also she asked me through the medium of the blog to try and help dispel the myth that hospices are scary places (obvious I suppose because of the association with death!) However for anyone who has never been to one I can honestly say that they are the complete opposite. Every time I walk in I feel peaceful, safe and calm. There is no fear and often the place is full of laughter (the nurses are always joking around with each other!)Eventually one of the things I would like to do is to be a volunteer there and to try and give a bit of something back which might help others who are going through this difficult process.
Finally I wanted to say that David and I (in those moments when he is well enough) are working things through, saying the things we need to say and talking about the important stuff like his wishes for the funeral and what happens afterwards with myself and the children. I would like to encourage all of you who has someone near and dear to do the same with them. Inevitably at a time like this you talk ahout whether it is better to be going through the suffering process like this or to walk out the door one day and never come back. There is no better - they are both shit. However what this has shown me is how important it is that if you do get hit by the symbolic bus that you have said what you need to say and written letters for your loved ones and if you have any strong feelings about burial or hymns or flowers then you have made them known. Don't leave it and think it will never happen to you. There is an immense amount of comfort in knowing that those things are in place and that I will be able to carry out David's wishes to the full as and when the time comes. It means the world to me.
Anyway..on that happy note...have a lovely day and PLEASE don't get hit by a bus...I would feel terrible!!
Over to David later
Florence x
Saturday, April 24, 2010
Here....and back again
Hi everyone - another Saturday...another week gone by....
David has been a little better over the past couple of days and so managed to make a trip back to the house for a few hours yesterday afternoon which he enjoyed very much. He even had the energy for a little trip to Carys' school where they were holding a sale to raise funds for their annual summer trip and he laughed and chatted to everyone. Amy and James took him back around 7 pm and he phoned me last night to say he was all settled in for the night.
Thanks to all those who have visited...I know it was hard for you guys but lovely to see you all.
You will have to forgive me. I am struggling to share today so I apologize for just a brief update.I keep starting sentences and then erasing them again. It was a lovely day yesterday.....
Enjoy the sunshine and each other today
Teresa x
David has been a little better over the past couple of days and so managed to make a trip back to the house for a few hours yesterday afternoon which he enjoyed very much. He even had the energy for a little trip to Carys' school where they were holding a sale to raise funds for their annual summer trip and he laughed and chatted to everyone. Amy and James took him back around 7 pm and he phoned me last night to say he was all settled in for the night.
Thanks to all those who have visited...I know it was hard for you guys but lovely to see you all.
You will have to forgive me. I am struggling to share today so I apologize for just a brief update.I keep starting sentences and then erasing them again. It was a lovely day yesterday.....
Enjoy the sunshine and each other today
Teresa x
Wednesday, April 21, 2010
And so to St John's.....
Evening all,
Sorry not to blog last night...the whole family came back to the house after spending the day with David and we had a truly remarkable evening laughing and chatting and then...after reading all your amazing comments on the blog.....finally crying our eyes out together. It was an incredibly emotional night and one I will always remember. I think reality (assisted by a few glasses of wine!) finally hit all of us and we let go and allowed ourselves not to be brave and to show our grief to each other which was so hard to bear but also incredibly cathartic. We hugged and talked and hugged some more and spoke so many precious words which families so rarely get to say to each other (sadly!) both about our love for each other and of course about David and our feelings for him.
The pain of the last 48 hours has been too much to bear at times....and I can't begin to find the words to describe it so I won't even try...but also...strangely...there have also been moments of intense exhilaration when we have celebrated David's life together and have spent precious time both with him and with each other.
So...how is he? David travelled to Moggerhanger in an ambulance late yesterday morning and from the moment we stepped through the door it was like a different world. David is in a room on his own with an en suite shower room, a beautiful view, tv and dvd, a reclining chair and a bed that will put him into whatever position is most comfortable for him all at the touch of a button. I can visit him whenever I wish (even 3 am if I am awake!!) and when you call the nurses they are there within 30 seconds. Hallelujah!! The staff are just wonderful.....nothing is too much trouble and they are listening to what he wants and delivering it without question.
As David himself put it 30 minutes after he arrived they should have a huge slogan at the bottom of the drive 'Croak it in Comfort!' (typical black humour!)
It is a huge relief for him to be there. It is so lovely to come and go as you please without the hassle of busy carparks and lifts that don't work and no privacy. You can have a jacuzzi bath or wander around the gardens, look at the huge carp in the pond, sit in the conservatory and just enjoy spending time together....in fact time just drifts along without you noticing which is lovely.
Yesterday David was very upbeat and chirpy, and coped very well with the transfer, but this morning he was once again in a lot of pain and it took some time to get this under control. He has had a visit from the consultant at the hospice who went through all his symptoms and changed some of the medication he was on which helped greatly and when I left him this evening he was comfortable and relaxed. He is managing small amounts of food and also the steroids do seem to be helping the swelling to a degree. He is becoming very skinny and short of breath which is heartbreaking to see...but in his good moments he has a plan to come home for a day or two and that is keeping his spirits up and giving him something to work towards.
Since making the move he has begun to allow himself to grieve...and the tears are finally coming after all this time. Our hearts are breaking together over our children....the future we will never have together..the grandchildren he will never see...walking Carys up the aisle...and all the dreams and hopes which will never now come true. And yet the love we share somehow makes all the the pain and the hurt bearable...somehow...
Thanks to Ken and Mu for your visit today..it meant so much and was a very precious time for us both. To family and friends....thanks for all your visits/comments/texts etc....as Marion so rightly said in her comment...this is our Gethsemane and it helps so much to know that you are all keeping vigil with us through the days and nights...thankyou all so much.
Florence xx
Sorry not to blog last night...the whole family came back to the house after spending the day with David and we had a truly remarkable evening laughing and chatting and then...after reading all your amazing comments on the blog.....finally crying our eyes out together. It was an incredibly emotional night and one I will always remember. I think reality (assisted by a few glasses of wine!) finally hit all of us and we let go and allowed ourselves not to be brave and to show our grief to each other which was so hard to bear but also incredibly cathartic. We hugged and talked and hugged some more and spoke so many precious words which families so rarely get to say to each other (sadly!) both about our love for each other and of course about David and our feelings for him.
The pain of the last 48 hours has been too much to bear at times....and I can't begin to find the words to describe it so I won't even try...but also...strangely...there have also been moments of intense exhilaration when we have celebrated David's life together and have spent precious time both with him and with each other.
So...how is he? David travelled to Moggerhanger in an ambulance late yesterday morning and from the moment we stepped through the door it was like a different world. David is in a room on his own with an en suite shower room, a beautiful view, tv and dvd, a reclining chair and a bed that will put him into whatever position is most comfortable for him all at the touch of a button. I can visit him whenever I wish (even 3 am if I am awake!!) and when you call the nurses they are there within 30 seconds. Hallelujah!! The staff are just wonderful.....nothing is too much trouble and they are listening to what he wants and delivering it without question.
As David himself put it 30 minutes after he arrived they should have a huge slogan at the bottom of the drive 'Croak it in Comfort!' (typical black humour!)
It is a huge relief for him to be there. It is so lovely to come and go as you please without the hassle of busy carparks and lifts that don't work and no privacy. You can have a jacuzzi bath or wander around the gardens, look at the huge carp in the pond, sit in the conservatory and just enjoy spending time together....in fact time just drifts along without you noticing which is lovely.
Yesterday David was very upbeat and chirpy, and coped very well with the transfer, but this morning he was once again in a lot of pain and it took some time to get this under control. He has had a visit from the consultant at the hospice who went through all his symptoms and changed some of the medication he was on which helped greatly and when I left him this evening he was comfortable and relaxed. He is managing small amounts of food and also the steroids do seem to be helping the swelling to a degree. He is becoming very skinny and short of breath which is heartbreaking to see...but in his good moments he has a plan to come home for a day or two and that is keeping his spirits up and giving him something to work towards.
Since making the move he has begun to allow himself to grieve...and the tears are finally coming after all this time. Our hearts are breaking together over our children....the future we will never have together..the grandchildren he will never see...walking Carys up the aisle...and all the dreams and hopes which will never now come true. And yet the love we share somehow makes all the the pain and the hurt bearable...somehow...
Thanks to Ken and Mu for your visit today..it meant so much and was a very precious time for us both. To family and friends....thanks for all your visits/comments/texts etc....as Marion so rightly said in her comment...this is our Gethsemane and it helps so much to know that you are all keeping vigil with us through the days and nights...thankyou all so much.
Florence xx
Tuesday, April 20, 2010
My dear friends
Early on Monday morning David took a turn for the worse. He woke up with excruciating spasms in his back which the medical staff struggled to control. When I got in to see him the medical Dr - Dr Harvey had already been in and told him that both surgically and medically there was nothing more they could do for him. Later after a meeting with all parties including Dr Bulusi it was agreed that no further intervention including chemo would help at this stage.
David's bowel is crippled by the cancer and therefore anything he eats is both not being absorbed but is also adding to the congestion. There is fluid in his stomach but not enough to drain off and the excess swelling is wind and poo backing up in his system. They are giving him some steroids to see if that will help to reduce the swelling and make him more comfortable in the short term but no guarantees.
He has at best a few weeks to live. Tomorrow morning he moves to St John's so that they can assist with his pain. His nasal gastic tube has been removed to make things more comfortable for him. His mum and dad arrived this afternoon to see him and his brother Adrian and sister in law Ann and his auntie Joy and uncle Bob have also come down from Derby with a view to visiting him today.
David himself is determined to live as long as he can and is longing to come home for a few days if possible. He is frightened of the pain and is looking forward to getting to St John's so that he can have a more comfortable environment with his needs being looked after by one or two staff rather than 20.
My dear friends - the words I want to write now won't come. It is 2.45 in the morning and sleep seems a million miles away. In the last 2 years I have been at this point in my mind a hundred times but nothing can actually prepare you for it. My head and my heart are so blocked and backed up with thoughts and emotions. It is not possible to keep crying is it? You keep breathing so why are you unable to keep crying? That's all I want to do but I can't.
God walk with you all today.
Florence xx
David's bowel is crippled by the cancer and therefore anything he eats is both not being absorbed but is also adding to the congestion. There is fluid in his stomach but not enough to drain off and the excess swelling is wind and poo backing up in his system. They are giving him some steroids to see if that will help to reduce the swelling and make him more comfortable in the short term but no guarantees.
He has at best a few weeks to live. Tomorrow morning he moves to St John's so that they can assist with his pain. His nasal gastic tube has been removed to make things more comfortable for him. His mum and dad arrived this afternoon to see him and his brother Adrian and sister in law Ann and his auntie Joy and uncle Bob have also come down from Derby with a view to visiting him today.
David himself is determined to live as long as he can and is longing to come home for a few days if possible. He is frightened of the pain and is looking forward to getting to St John's so that he can have a more comfortable environment with his needs being looked after by one or two staff rather than 20.
My dear friends - the words I want to write now won't come. It is 2.45 in the morning and sleep seems a million miles away. In the last 2 years I have been at this point in my mind a hundred times but nothing can actually prepare you for it. My head and my heart are so blocked and backed up with thoughts and emotions. It is not possible to keep crying is it? You keep breathing so why are you unable to keep crying? That's all I want to do but I can't.
God walk with you all today.
Florence xx
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