So..for all of you who are still out there...he went off with a bang which is exactly what he wanted. Thanks so much to all those who took the time to come and who shared their thoughts with me afterwards. I know that so many of you were touched and...yes I'm going to say it...'inspired' by it. I thought I would cry through the whole thing but in fact every time I looked at David's coffin I couldn't help but smile...I know he would have loved the whole thing and several people told me that they felt he was there with us and I felt very much the same and it was a wonderful feeling.
I am so proud of everyone who took part - you were all amazing and wonderful and everything you said/sang/showed was just right and a fitting tribute to a unique and remarkable person.
Apologies to those I didn't get to speak to...there were so many and my feet were in tatters by the time I got home (note to self...high heels and graveyards are not a good combination!) but it was incredible to walk into the church and see so many people there and also at the Sharbrook afterwards (that one's for you Sian!) A huge thanks and hug go to my 'main man' Phil who did such a fabulous job with the Order of Service...they just looked incredible and will be a wonderful keepsake for us all. It was very emotional putting it together!!
After we got home we had a couple of glasses of wine (I think it was two...sorry lost count somewhere)...and spent a mad couple of hours with the kids hula hooping in the garden and then watching 'The Rock' (one of David's favourite films - very old school!)
Today is a quiet day...we are going to wander up to the church yard again later to spend some time looking at the flowers and listen to the birds..it is a beautiful spot and very peaceful. Wasn't it a beautiful day too yesterday...and so warm..just lovely!
Tomorrow will be a new day..time to take a deep breath and look forward and think about the future and maybe make some changes...and as the song 'Yesterday' said...'Heaven knows what the future holds' and that's true. This at last will be my final blog (honestly!)and I sign off as someone who has undergone so much change in the past 2 years and has been on a difficult journey but who has emerged the other side full of gratitude, hope, faith, courage and determination to start anew...with my wonderful family and friends and my Lord helping me along the way...and my David always in my heart guiding me too.
Finally...many people have spoken to me about potentially publishing David's blog and it is something I will look into in the coming weeks, if it's right then I am sure it will happen. David didn't start it for that purpose of course but if it would help and...ouch....'inspire' others who may be going through similar journeys and possibly raise some money for St John's then I think it is worthwhile - so watch this space. I will endeavour to let you all know as and when and if it happens...may have to put it on the blog...oh no here we go again....
So, for now, signing off with a smile and as Jane put so beautifully in the Book of Memories..to my beloved David and to all of you lovely people...
'Keep safe on your next Journey'
Love always and always,
Florence x
Wednesday, May 19, 2010
Tuesday, May 11, 2010
An invitation....and some good news!
Good morning all,
Just to let you know that David's body has now been fully prepared for burial and if you wish to you can arrange to see him at Arnold's chapel of rest. You do need to ring in advance to make an appointment. I have dressed him in his brown suit, the one he wore to his friend Nathan's wedding just a couple of months ago...the last time I saw him in it he looked so handsome and was so excited about being invited... The emotional hits will just keep coming I know..
I am not sure as yet whether I want to go and see him now. I have been thinking about it for the past couple of days but am still undecided and I know that people have very definite views about this sort of thing. To be honest I don't know if I will regret it if I don't or maybe I will regret it if I do....
Also on a practical note, unfortunately we are not able to use the large community centre/village hall carpark which is across the road from Bromham baptist church as they have an event on on Tuesday morning (although if it's not busy you may be able to sneak in!) There is parking at the Church itself and quite a few side roads that you will be able to park on but my advice if you have trouble walking that you do get to the church fairly early if possible. I can promise it will be worth the trouble.
Today I am going up to the church yard with my minister Graham and we are meeting the minister of Odell church there later on this morning to see where the grave will be...glad the sun is shining! The churchyard is in an idealic spot...set on the hillside and full of spring flowers at this time of year...I am glad I will be able to visit it often and I know it will be a comfort for all of us to have him so close.
OK...to close on a high note I wanted to let you know some very good news! Carys is going to be an extra in a major dance film!! She auditioned in Birmingham in March (Chloe has been involved in the casting for several films in recent months....she knows all the big names in film of course...she's such a luvvie!) and we heard that she got the part yesterday (without Chloe's help I have to say!), and they also want her to attend the premiere in London next year! Go Carys! She was so thrilled and it was lovely to tell her the good news....
So...signing off again..thanks for dropping in..have a good Tuesday...by the way wasn't there an election last week?...oh well don't think I've missed anything!
Florence x
Just to let you know that David's body has now been fully prepared for burial and if you wish to you can arrange to see him at Arnold's chapel of rest. You do need to ring in advance to make an appointment. I have dressed him in his brown suit, the one he wore to his friend Nathan's wedding just a couple of months ago...the last time I saw him in it he looked so handsome and was so excited about being invited... The emotional hits will just keep coming I know..
I am not sure as yet whether I want to go and see him now. I have been thinking about it for the past couple of days but am still undecided and I know that people have very definite views about this sort of thing. To be honest I don't know if I will regret it if I don't or maybe I will regret it if I do....
Also on a practical note, unfortunately we are not able to use the large community centre/village hall carpark which is across the road from Bromham baptist church as they have an event on on Tuesday morning (although if it's not busy you may be able to sneak in!) There is parking at the Church itself and quite a few side roads that you will be able to park on but my advice if you have trouble walking that you do get to the church fairly early if possible. I can promise it will be worth the trouble.
Today I am going up to the church yard with my minister Graham and we are meeting the minister of Odell church there later on this morning to see where the grave will be...glad the sun is shining! The churchyard is in an idealic spot...set on the hillside and full of spring flowers at this time of year...I am glad I will be able to visit it often and I know it will be a comfort for all of us to have him so close.
OK...to close on a high note I wanted to let you know some very good news! Carys is going to be an extra in a major dance film!! She auditioned in Birmingham in March (Chloe has been involved in the casting for several films in recent months....she knows all the big names in film of course...she's such a luvvie!) and we heard that she got the part yesterday (without Chloe's help I have to say!), and they also want her to attend the premiere in London next year! Go Carys! She was so thrilled and it was lovely to tell her the good news....
So...signing off again..thanks for dropping in..have a good Tuesday...by the way wasn't there an election last week?...oh well don't think I've missed anything!
Florence x
Sunday, May 9, 2010
One week on...
Good morning all
One week on and firstly I need to let you know that the after funeral 'do' (hate the word 'wake') due to 'popularity of the deceased' ( Adrian's comment - blame him for the black humour - he's sitting here in my kitchen) will now take place at the Sharnbrook Hotel, Sharnbrook, which is about 5 mins drive from Odell. Again all this will be in the order of service and will also be announced at the end of the funeral. Was panicking that the village hall, although David's first choice was going to be nowhere near big enough.
One week on...hardly seems possible...we're all doing incredibly well. There have been some very tough moments as you might imagine.....but 80% of the time we're ok which I think is pretty good. James now wears his dad's watch and Carys is keeping a lovely photo of her daddy under her pillow and reckons that he is the cheeky robin who is constantly in the garden at the moment and following everyone around..I'm happy with that picture...
I think it will be after the funeral when it will finally begin to hit home...but I'll cross that bridge when I come to it. I have felt David's presence and guiding hand throughout the past few days helping me with the tough decisions and giving me comfort in the lonely moments....and I have felt an incredible sense of peace throughout the week...even when the tears have fallen which they have often.
The poor postman is now suing due to a bad back from carrying the enormous amount of cards which arrive through my door every morning and reading those and your wonderful letters has also made me cry...Dawnie and Steve....amazing words and memories you shared.. thanks so much...and thanks to everyone who has taken the time to write, e mail and text.
Have a blessed Sunday....
Love to you all xxx
One week on and firstly I need to let you know that the after funeral 'do' (hate the word 'wake') due to 'popularity of the deceased' ( Adrian's comment - blame him for the black humour - he's sitting here in my kitchen) will now take place at the Sharnbrook Hotel, Sharnbrook, which is about 5 mins drive from Odell. Again all this will be in the order of service and will also be announced at the end of the funeral. Was panicking that the village hall, although David's first choice was going to be nowhere near big enough.
One week on...hardly seems possible...we're all doing incredibly well. There have been some very tough moments as you might imagine.....but 80% of the time we're ok which I think is pretty good. James now wears his dad's watch and Carys is keeping a lovely photo of her daddy under her pillow and reckons that he is the cheeky robin who is constantly in the garden at the moment and following everyone around..I'm happy with that picture...
I think it will be after the funeral when it will finally begin to hit home...but I'll cross that bridge when I come to it. I have felt David's presence and guiding hand throughout the past few days helping me with the tough decisions and giving me comfort in the lonely moments....and I have felt an incredible sense of peace throughout the week...even when the tears have fallen which they have often.
The poor postman is now suing due to a bad back from carrying the enormous amount of cards which arrive through my door every morning and reading those and your wonderful letters has also made me cry...Dawnie and Steve....amazing words and memories you shared.. thanks so much...and thanks to everyone who has taken the time to write, e mail and text.
Have a blessed Sunday....
Love to you all xxx
Thursday, May 6, 2010
A bit more clarification, an apology and an update..wow!
Hi folks...
Me again...seems like my attempt to sign off in grand style just didn't work! I have had a few people (including my own mother, bless her!) asking for more information regarding the funeral so I apologise if it isn't clear - I suppose because I know what is happening it's clear to me if you see what I mean...
Anyway - the service IS a funeral and David's body will be there (he would never forgive me if he missed it!). The service is at Bromham but afterwards invited family and close friends will travel back to Odell for the burial in the parish church, but then everyone who is able to attend is then invited for food and drink at Odell village Hall. This will all be announced again at the end of the service, but I fully appreciate for those people who are travelling some distance and don't know the area it is a bit confusing! Also regarding the black - it is ok to wear some black eg shoes, trousers , underpants etc as long as you are not entirely in black (my mum has just bought a new pair of black trousers!)
I hope this all makes sense now,,
ps - ok so.. while I am still blogging - thanks with all my heart for all the cards, e mails and texts...too many to mention indvidually...I have been SO touched by them and intend to get a book to put them all into. Myself and the kids are all doing well....being busy sorting out the funeral helps in a strange way, but the simplest and oddest things do make me blub as you might imagine. There have been a lot of tears amongst the laughter in the last few days..for example Chloe and I stood on the drive in silence yesterday morning with tears streaming down our faces as the skip which I had filled in David's absence was loaded onto a lorry and taken away...the driver must have thought we were both mad...and the poor parent of a student whom I tutor who rushed up to me with smiles all over her face as I pulled up outside Pilgrims school to register the death (for those who don't know the school shares a carpark with the registrar's office) and asked me with joyful ignorance 'what are you doing here?' was so mortified when she heard the answer that I am sure she will need therapy!
On a more serious note...the range of emotions we have all been through in the last few days has been incredible...I had a couple of days when all I could do was see his face and hear his breathing....and it was torture..to some moments when I feel a huge sense of relief that he is no longer suffering and it is over...to feelings of guilt that I even feel that way...my heart feels like it has a huge David shaped hole in it now...but the cancer shaped hole which has been there for the last 2 years is there no longer..it is as if the sands of time have run from one to the other..filling up one space but leaving an even bigger and more painful one...but some bits of my life which were not ok...are now ok again..and that helps...and some bits will never be ok again..but the memories are still there and talking to a friend who has been through a very similar experience has also helped..thanks Lorraine...she said that through time the memories will only bring joy...not joy mixed with longing and pain...and I am sure that is true...only time will tell I suppose...
Anyway enough rambling on from me...signing off for now...never say never again...
Flo x
Me again...seems like my attempt to sign off in grand style just didn't work! I have had a few people (including my own mother, bless her!) asking for more information regarding the funeral so I apologise if it isn't clear - I suppose because I know what is happening it's clear to me if you see what I mean...
Anyway - the service IS a funeral and David's body will be there (he would never forgive me if he missed it!). The service is at Bromham but afterwards invited family and close friends will travel back to Odell for the burial in the parish church, but then everyone who is able to attend is then invited for food and drink at Odell village Hall. This will all be announced again at the end of the service, but I fully appreciate for those people who are travelling some distance and don't know the area it is a bit confusing! Also regarding the black - it is ok to wear some black eg shoes, trousers , underpants etc as long as you are not entirely in black (my mum has just bought a new pair of black trousers!)
I hope this all makes sense now,,
ps - ok so.. while I am still blogging - thanks with all my heart for all the cards, e mails and texts...too many to mention indvidually...I have been SO touched by them and intend to get a book to put them all into. Myself and the kids are all doing well....being busy sorting out the funeral helps in a strange way, but the simplest and oddest things do make me blub as you might imagine. There have been a lot of tears amongst the laughter in the last few days..for example Chloe and I stood on the drive in silence yesterday morning with tears streaming down our faces as the skip which I had filled in David's absence was loaded onto a lorry and taken away...the driver must have thought we were both mad...and the poor parent of a student whom I tutor who rushed up to me with smiles all over her face as I pulled up outside Pilgrims school to register the death (for those who don't know the school shares a carpark with the registrar's office) and asked me with joyful ignorance 'what are you doing here?' was so mortified when she heard the answer that I am sure she will need therapy!
On a more serious note...the range of emotions we have all been through in the last few days has been incredible...I had a couple of days when all I could do was see his face and hear his breathing....and it was torture..to some moments when I feel a huge sense of relief that he is no longer suffering and it is over...to feelings of guilt that I even feel that way...my heart feels like it has a huge David shaped hole in it now...but the cancer shaped hole which has been there for the last 2 years is there no longer..it is as if the sands of time have run from one to the other..filling up one space but leaving an even bigger and more painful one...but some bits of my life which were not ok...are now ok again..and that helps...and some bits will never be ok again..but the memories are still there and talking to a friend who has been through a very similar experience has also helped..thanks Lorraine...she said that through time the memories will only bring joy...not joy mixed with longing and pain...and I am sure that is true...only time will tell I suppose...
Anyway enough rambling on from me...signing off for now...never say never again...
Flo x
Wednesday, May 5, 2010
Funeral arrangements...at last
Hi everyone
So sorry for the delay - difficulties in tying up lots of different churches, ministers etc! Typical David - it was never going to be simple!! Below are the details which will be printed in both the Bedford Times and Citizen and the Derby Evening Telegraph.
REDFERN, DAVID MARK ended his brave battle with cancer on Sunday 2nd May at St John’s Hospice, Moggerhanger, aged 44 years. Beloved husband of Teresa (Florence), much loved father of Amy, James and Carys, cherished son of Ken and Ann and brother to Adrian. He touched the hearts of everyone he met and will be missed more than words can say. The service to celebrate his amazing life and his passing into heaven will take place at 11.00 am at Bromham Baptist Church, Bromham, Bedford on Tuesday 18th May. At David’s request no black to be worn and lots of flowers. Donations can also be made to the work of St John’s. All enquiries regarding flowers and donations to Arnold’s Funeral Service, Bedford, Tel: 01234 359529.
I know that it will be a fitting tribute for a wonderful man and I hope that you can join myself and the family there.
Love as always
Teresa aka Florence xx
So sorry for the delay - difficulties in tying up lots of different churches, ministers etc! Typical David - it was never going to be simple!! Below are the details which will be printed in both the Bedford Times and Citizen and the Derby Evening Telegraph.
REDFERN, DAVID MARK ended his brave battle with cancer on Sunday 2nd May at St John’s Hospice, Moggerhanger, aged 44 years. Beloved husband of Teresa (Florence), much loved father of Amy, James and Carys, cherished son of Ken and Ann and brother to Adrian. He touched the hearts of everyone he met and will be missed more than words can say. The service to celebrate his amazing life and his passing into heaven will take place at 11.00 am at Bromham Baptist Church, Bromham, Bedford on Tuesday 18th May. At David’s request no black to be worn and lots of flowers. Donations can also be made to the work of St John’s. All enquiries regarding flowers and donations to Arnold’s Funeral Service, Bedford, Tel: 01234 359529.
I know that it will be a fitting tribute for a wonderful man and I hope that you can join myself and the family there.
Love as always
Teresa aka Florence xx
Monday, May 3, 2010
The Funeral and final bits...
Good morning everyone
Having said it was my final blog yesterday, so many people have asked about the funeral that I thought I had better post something to let everyone know the arrangements. I am due to meet with the undertaker tomorrow so will post the time and date of the funeral once I have sorted it all out so please look out for it in the next day or two. In all likelihood it will be early next week.
Thanks so much for all your lovely comments, texts and e mails. We have all been comforted by them so much. Also thanks to all my wonderful family and friends who have made things so much easier for me than they might have been in the last few days.
I have walked around the house this morning whilst everyone else sleeps...it seems so quiet without him...and I picked up and read again the card he sent me for our 24th Wedding Anniversary. A card which Amy had to buy for him because he was in hospital...but via her he still managed to organise flowers bless him!!
I have been in two minds as to whether to share the words that he wrote in the card but I think that actually they are not just for me...they are for all of you too and so it seems fitting to end with them and I hope they will bring some comfort to you guys as they have done for me (I won't include the mushy love bit at the bottom)
'My wife, what an amazing year. I just wanted to thank you with every ounce of my being for walking the path with me. I know that it is 'a road less travelled' but with you by my side I know I can be brave'
...and he was.
Florence xx
Having said it was my final blog yesterday, so many people have asked about the funeral that I thought I had better post something to let everyone know the arrangements. I am due to meet with the undertaker tomorrow so will post the time and date of the funeral once I have sorted it all out so please look out for it in the next day or two. In all likelihood it will be early next week.
Thanks so much for all your lovely comments, texts and e mails. We have all been comforted by them so much. Also thanks to all my wonderful family and friends who have made things so much easier for me than they might have been in the last few days.
I have walked around the house this morning whilst everyone else sleeps...it seems so quiet without him...and I picked up and read again the card he sent me for our 24th Wedding Anniversary. A card which Amy had to buy for him because he was in hospital...but via her he still managed to organise flowers bless him!!
I have been in two minds as to whether to share the words that he wrote in the card but I think that actually they are not just for me...they are for all of you too and so it seems fitting to end with them and I hope they will bring some comfort to you guys as they have done for me (I won't include the mushy love bit at the bottom)
'My wife, what an amazing year. I just wanted to thank you with every ounce of my being for walking the path with me. I know that it is 'a road less travelled' but with you by my side I know I can be brave'
...and he was.
Florence xx
Sunday, May 2, 2010
One journey ends...another begins
The cliffs above Rospico beach - Easter Monday 2010
Well....David breathed his last at 3.30 am this morning. I sat with him through the night hours, listening to him struggle to breathe and watching his body slowly shut down. In the end he was in peace, with no pain, with his beloved Florence by his side as always...and I know that's what he wanted..
Everyone says it that the end is a relief when it comes and that is true. These last few days have been more traumatic and difficult than I can tell, but those who love him most have had the chance to say goodbye which is how it should be.
My lovely friends...his new journey has now begun and ours must too. This will be my last entry...David's blog was all about the fight...and that is now over for all of us...we now have to face new challenges which will be just as great. The challenge of being without him will be just as big a fight but one which we will all face with courage because that's what he would want and what he deserves.
It has been an honour and a privilege to continue the blog for David whilst he has been unable to do so himself, and the more I talk to people...even the nurses at the hospice who have only had a few days with him...and read the comments on the blog from so many people from all over the globe...the more I begin to understand what an amazing, amazing person he was....the word 'inspiration' is used to describe him time and time again...and I think I will probably never fully know the extent to which he has influenced and enriched the lives of so many who came into contact with him. The greatest honour and privilege has been to share that life with him over the past 27 years....no words can describe how proud I am of him and how much I will miss him.
I have asked him to be there to meet me when my time comes...and I am sure that he will. He will continue to be with us in all our hearts as the days, weeks and years go by...and I know I will hear his voice often.
The funeral will be a wonderful celebration of his life so I hope to see you all there. Let's give him a riotous send off...he would love that!
So...today when you think of David...amongst the tears which I know we will all shed..let there be smiles and laughter too....again, that's what he would want. Even at the end...we had to smile ourselves..David's feet suddenly turned dark brown and none of us could figure out what this strange medical phenomenon was until one of the nurses suddenly realised that she had moisturised his feet with fake tan!!!
So..For David...this is Florence...signing off for the last time and sending you all my love on this wet Sunday morning....isn't it strange how the weather has taken a turn for the worse...(!!)
God bless you and Keep you, and Make His face to shine upon you...and give you Peace xxxxxxxx
Thursday, April 29, 2010
One day at a time...
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
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
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
Saturday, April 17, 2010
Ups and Downs..
Saturday morning! Wow what a rollercoaster!
Sorry I didn't get chance to blog with news last night. David's lovely cousin Julia and her boyfriend were staying the night so I was entertaining (eg taking them over the Bell!). They are training with us as Julia has bought a tutoring franchise so myself and Amy are working with them all weekend to get them ready for their big opening. They are a really great couple - obsessed with not causing me any more work/hassle but they are so excited about running their own business and it was really good to spend a couple of hours talking about them and their future (Julia is pregnant) rather than cancer!!
Anyway back to yesterday....bit frustrating again really. We have been told that Dr B will come and see us on Monday evening as a) he is snowed under with catching up having been away and b) he wants to give David a few more days to recuperate. Eleanor came to see us and spent about 20 mins with us and assured us that although she couldn't speak for Dr B at the moment the chemo (which was booked in before Easter) is still booked in and nothing is 'off the table' so read into that what you will. I think in reality he will discuss the pros/cons/benefits with us and then we can decide how to proceed....so tentatively positive...Monday it is!
David remains well although he does get tired very easily he is much more positive mentally and wanting to play travel scrabble and discuss plans over the Summer. He is eating small portions now although he has got to keep the tube in his nose for now so isn't absorbing much nutritionally but if they remove it they are concerned that his bowel will block again and we will be back to square one. He went for another ultrasound to locate the fluid on his stomach but had a failed attempt last night to drain it off from the marked sites which was a bit frustrating for him as the fluid is obviously there (he is very swollen again) and causing him some discomfort. Apparently unless he gets significantly worse they now won't do anything until Monday.
He is still on intravenous antibiotics until tomorrow night and the plan at the moment is potentially to move him to St John's on Monday for a couple of days - Dr B will visit us there if that is the case.
Not much more to tell at the mo...am off to visit this morning and then training the rest of the weekend so won't get to see him again until Sunday late afternoon. If you do want to visit would you please check with me first - I know I am being very protective but he still isn't up to seeing too many folks at the moment.
Will update if I have any news my faithful blogettes! Have a lovely weekend and enjoy the sunshine!
Florence x
Sorry I didn't get chance to blog with news last night. David's lovely cousin Julia and her boyfriend were staying the night so I was entertaining (eg taking them over the Bell!). They are training with us as Julia has bought a tutoring franchise so myself and Amy are working with them all weekend to get them ready for their big opening. They are a really great couple - obsessed with not causing me any more work/hassle but they are so excited about running their own business and it was really good to spend a couple of hours talking about them and their future (Julia is pregnant) rather than cancer!!
Anyway back to yesterday....bit frustrating again really. We have been told that Dr B will come and see us on Monday evening as a) he is snowed under with catching up having been away and b) he wants to give David a few more days to recuperate. Eleanor came to see us and spent about 20 mins with us and assured us that although she couldn't speak for Dr B at the moment the chemo (which was booked in before Easter) is still booked in and nothing is 'off the table' so read into that what you will. I think in reality he will discuss the pros/cons/benefits with us and then we can decide how to proceed....so tentatively positive...Monday it is!
David remains well although he does get tired very easily he is much more positive mentally and wanting to play travel scrabble and discuss plans over the Summer. He is eating small portions now although he has got to keep the tube in his nose for now so isn't absorbing much nutritionally but if they remove it they are concerned that his bowel will block again and we will be back to square one. He went for another ultrasound to locate the fluid on his stomach but had a failed attempt last night to drain it off from the marked sites which was a bit frustrating for him as the fluid is obviously there (he is very swollen again) and causing him some discomfort. Apparently unless he gets significantly worse they now won't do anything until Monday.
He is still on intravenous antibiotics until tomorrow night and the plan at the moment is potentially to move him to St John's on Monday for a couple of days - Dr B will visit us there if that is the case.
Not much more to tell at the mo...am off to visit this morning and then training the rest of the weekend so won't get to see him again until Sunday late afternoon. If you do want to visit would you please check with me first - I know I am being very protective but he still isn't up to seeing too many folks at the moment.
Will update if I have any news my faithful blogettes! Have a lovely weekend and enjoy the sunshine!
Florence x
Friday, April 16, 2010
Words are not enough...
Good morning and what a lovely sunny morning it is -
Firstly thanks with all my heart to everyone who commented on the last blog and the many texts and messages of support that came our way...you are a lovely lot aren't you. I was especially glad to hear from John and his wife - I had heard that he was able to have surgery and is I am so pleased to hear that he is still going strong - bless you both.
Just a quick update today...David is feeling MUCH better - sickness and all other symptoms under control and he is beginning to eat a little again. He just phoned me and for the first time in over a week he sounded like his old self which was WONDERFUL!! He requested that I buy him a narrowboat magazine yesterday (oh so easy to find !!!!) and he was raving about how interesting it was - so yes he's feeling a lot more normal.
We had 2 rather surreal moments yesterday, the first being around 10 am when the Macmillan nurse (Carol), Eleanor (Upper GI nurse) and Yvonne(from St John's) were all gathered around his bed including myself to discuss what was happening and the way forward. David has opened his bowels in the night (won't go into details but suffice to say he needed a shower when I got there!!) and we were all sat around his bed like a little hareem discussing his poo and getting very excited - it was like a scene from a black comedy!
The second surreal moment was in the afternoon - out of nowhere onto the ward appeared a small black gospel choir from a local pentecostal church who started singing hymns and praying for everyone. They came to see David and being a bit put on the spot he thought of the first gospel hymn which he thought they might know which was 'Soon and very soon'. It wasn't until we all started singing that we suddenly realised what the lyrics were and then of course we were all in floods of tears;
'Soon and very soon
We are going to see the King
No more dying there
We are going to see the King,
No more crying there
We are going to see the King,
Hallelujah, hallelujah
We're going to see the King'
It was a moment to cherish and they were so sweet and prayed for him so fervently which was lovely and it was a good excuse for a cuddle and a cry with my hubbie.
What was so good yesterday was that the ladies of the cancer team (mentioned above) finally pulled everything together for us and we now have a plan and it was great just to have things explained clearly and simply. So here we go....David is unable to have surgery as the blockages in his bowel are caused by the cancer in the lining of the bowel (part of the peritoneum) pressing on the bowel. So surgery won't help as the only thing to do would be to take out the bowel entirely which they won't put him through.
The plan now is to get him over to St Johns asap (will be today or Monday I think) where he can have a few days of rest and they can talk to him about his eating, what to do if he becomes unwell again etc and then HOME - HURRAH!
Ok so here is the crunch...we are still waiting on Dr Bulusi to see us ...hopefully today... and I am off down to the hospital shortly to play the waiting game again. He will give us a decision regarding further treatment and reading between the lines I would say it is around 70/30 odds against due to the extent of the spread. If he feels that David won't benefit then he won't do it which is fair enough and we trust that if he feels that he can extend David's life I know he will try to..but it's down to him. If not then we are in the world where we look to control his symptoms and keep him as well as possible over the coming weeks/months and just enjoy our time together.....
I didn't sleep well last night for the first time in a while...but this morning and yesterday both David and I feels God's peace whatever happens...this is not a trite statement...it's just that somehow we both just accept that it is beyond our control.. hence the title of this blog...everything I seemed to say to people yesterday..trying to explain how I felt, just didn't do it justice by a mile...I am hopeful and heartbroken and grieving and grateful all at the same time..sorry for the alliteration...but words are not enough to sum it up and they never will be.
In the midst of all this there you all are...friends...family...mums and dads..brothers and sisters....sons and daughters...dear people we have known just a short while and for many years...oh and Chloe! (only kidding!)and I know that words are not enough for you guys either....
This has been the toughest week of our lives and we couldn't have got through it without all of you so thankyou again...whatever tomorrow brings I know that I've been blessed and nothing can change that...ever.
Finally thanks to my beautiful Amy for stepping into the breach today and doing the training I was supposed to be doing...you are my rock in so many ways.
Will keep you all posted...be good to yourselves today...I recommend Ben and Jerry's Phish food ice cream (thanks to Chloe!)and an episode of Pineapple Dance Studios...fab!
Florence xx
Firstly thanks with all my heart to everyone who commented on the last blog and the many texts and messages of support that came our way...you are a lovely lot aren't you. I was especially glad to hear from John and his wife - I had heard that he was able to have surgery and is I am so pleased to hear that he is still going strong - bless you both.
Just a quick update today...David is feeling MUCH better - sickness and all other symptoms under control and he is beginning to eat a little again. He just phoned me and for the first time in over a week he sounded like his old self which was WONDERFUL!! He requested that I buy him a narrowboat magazine yesterday (oh so easy to find !!!!) and he was raving about how interesting it was - so yes he's feeling a lot more normal.
We had 2 rather surreal moments yesterday, the first being around 10 am when the Macmillan nurse (Carol), Eleanor (Upper GI nurse) and Yvonne(from St John's) were all gathered around his bed including myself to discuss what was happening and the way forward. David has opened his bowels in the night (won't go into details but suffice to say he needed a shower when I got there!!) and we were all sat around his bed like a little hareem discussing his poo and getting very excited - it was like a scene from a black comedy!
The second surreal moment was in the afternoon - out of nowhere onto the ward appeared a small black gospel choir from a local pentecostal church who started singing hymns and praying for everyone. They came to see David and being a bit put on the spot he thought of the first gospel hymn which he thought they might know which was 'Soon and very soon'. It wasn't until we all started singing that we suddenly realised what the lyrics were and then of course we were all in floods of tears;
'Soon and very soon
We are going to see the King
No more dying there
We are going to see the King,
No more crying there
We are going to see the King,
Hallelujah, hallelujah
We're going to see the King'
It was a moment to cherish and they were so sweet and prayed for him so fervently which was lovely and it was a good excuse for a cuddle and a cry with my hubbie.
What was so good yesterday was that the ladies of the cancer team (mentioned above) finally pulled everything together for us and we now have a plan and it was great just to have things explained clearly and simply. So here we go....David is unable to have surgery as the blockages in his bowel are caused by the cancer in the lining of the bowel (part of the peritoneum) pressing on the bowel. So surgery won't help as the only thing to do would be to take out the bowel entirely which they won't put him through.
The plan now is to get him over to St Johns asap (will be today or Monday I think) where he can have a few days of rest and they can talk to him about his eating, what to do if he becomes unwell again etc and then HOME - HURRAH!
Ok so here is the crunch...we are still waiting on Dr Bulusi to see us ...hopefully today... and I am off down to the hospital shortly to play the waiting game again. He will give us a decision regarding further treatment and reading between the lines I would say it is around 70/30 odds against due to the extent of the spread. If he feels that David won't benefit then he won't do it which is fair enough and we trust that if he feels that he can extend David's life I know he will try to..but it's down to him. If not then we are in the world where we look to control his symptoms and keep him as well as possible over the coming weeks/months and just enjoy our time together.....
I didn't sleep well last night for the first time in a while...but this morning and yesterday both David and I feels God's peace whatever happens...this is not a trite statement...it's just that somehow we both just accept that it is beyond our control.. hence the title of this blog...everything I seemed to say to people yesterday..trying to explain how I felt, just didn't do it justice by a mile...I am hopeful and heartbroken and grieving and grateful all at the same time..sorry for the alliteration...but words are not enough to sum it up and they never will be.
In the midst of all this there you all are...friends...family...mums and dads..brothers and sisters....sons and daughters...dear people we have known just a short while and for many years...oh and Chloe! (only kidding!)and I know that words are not enough for you guys either....
This has been the toughest week of our lives and we couldn't have got through it without all of you so thankyou again...whatever tomorrow brings I know that I've been blessed and nothing can change that...ever.
Finally thanks to my beautiful Amy for stepping into the breach today and doing the training I was supposed to be doing...you are my rock in so many ways.
Will keep you all posted...be good to yourselves today...I recommend Ben and Jerry's Phish food ice cream (thanks to Chloe!)and an episode of Pineapple Dance Studios...fab!
Florence xx
Wednesday, April 14, 2010
Rocky XV
Hi lovely friends
Today is possibly the first day when I can't bring myself to tell you all that has happened in the last 24 hours because it's all too raw and upsetting and difficult. I feel like I did when David was first diagnosed, that I am living in a nightmare world where all the days start to merge into one and I hope that at some point I will wake up and realize it was all just a bad dream and all the pain and grief and stress that I am living under will fade into memory. But I am sadly wide awake and the nightmare is very real and it is a infinitely worse for David, which hurts even more. At the moment I feel like I am rolling with the punches, each one of which floors me and I just have to keep coming back for more, rushing from hope to utter despair and back again. Please believe me when I say that I am not trying to be over dramatic and honestly no one can help - it's just the truth of where I am at and tonight I am not feeling brave or positive...just tired and lonely. I know you are all there for us...thankyou...
However my friends what I can do is give you an overview and happily there is some good news in there. The very good news is that the anti sickness drugs finally seem to be working and David is beginning to feel better after a very shaky start this morning where his blood pressure dropped dramatically and he was in terrible pain and they rushed him in for an x ray to try and find out what was happening. As the day progressed his blood pressure also returned to fairly normal and the pain lessened so physically things are a bit more positive.
I have to be at the hospital for 8.30 tomorrow as the surgical team took a look at today's scan and may decide to give him an operation to relieve a blockage in his bowel which they said on Friday was not there. They are apparently coming in the morning to speak to him but what this blockage is or what the surgery might entail I have no clue as the surgeon who came to see him today initially said that it was not worth doing due to the spread of his cancer....please say you are also confused!! He may also need to have his stomach drained again tomorrow but again no definites at this point - you begin to get a sense of my frustration.
Hopefully we may also see Dr Bulusi tomorrow but again no guarantees..depends on his workload so it may be Friday. We trust him above anyone else (medically)so please pray...can't say anymore tonight except thanks my guardian angels Nick and Sarah for all you did today.
Love as always, sleep well,
x
Today is possibly the first day when I can't bring myself to tell you all that has happened in the last 24 hours because it's all too raw and upsetting and difficult. I feel like I did when David was first diagnosed, that I am living in a nightmare world where all the days start to merge into one and I hope that at some point I will wake up and realize it was all just a bad dream and all the pain and grief and stress that I am living under will fade into memory. But I am sadly wide awake and the nightmare is very real and it is a infinitely worse for David, which hurts even more. At the moment I feel like I am rolling with the punches, each one of which floors me and I just have to keep coming back for more, rushing from hope to utter despair and back again. Please believe me when I say that I am not trying to be over dramatic and honestly no one can help - it's just the truth of where I am at and tonight I am not feeling brave or positive...just tired and lonely. I know you are all there for us...thankyou...
However my friends what I can do is give you an overview and happily there is some good news in there. The very good news is that the anti sickness drugs finally seem to be working and David is beginning to feel better after a very shaky start this morning where his blood pressure dropped dramatically and he was in terrible pain and they rushed him in for an x ray to try and find out what was happening. As the day progressed his blood pressure also returned to fairly normal and the pain lessened so physically things are a bit more positive.
I have to be at the hospital for 8.30 tomorrow as the surgical team took a look at today's scan and may decide to give him an operation to relieve a blockage in his bowel which they said on Friday was not there. They are apparently coming in the morning to speak to him but what this blockage is or what the surgery might entail I have no clue as the surgeon who came to see him today initially said that it was not worth doing due to the spread of his cancer....please say you are also confused!! He may also need to have his stomach drained again tomorrow but again no definites at this point - you begin to get a sense of my frustration.
Hopefully we may also see Dr Bulusi tomorrow but again no guarantees..depends on his workload so it may be Friday. We trust him above anyone else (medically)so please pray...can't say anymore tonight except thanks my guardian angels Nick and Sarah for all you did today.
Love as always, sleep well,
x
Tuesday, April 13, 2010
Much the same
Hi faithful blog readers
Not much to report from the hospital bed today. David remains very poorly - he just sleeps and is sick literally and even my visits seem too much for him so I am only staying for a couple of hours and then leaving him to rest. The results of the blood tests revealled that he has got some sort of infection so they are starting him on anti-biotics today and they have 24 hour sickness relief in a 'driver' straight into his leg. This doesn't seem to be helping however at the moment. He is also getting more fluid build up in his body cavity which will need to be drained again in the next couple of days.
The staff are all lovely and are doing all they can to keep him comfortable but it's just going to take some time for him to start recovering so I think we are in for a fairly long stint in the hospital....of course I will keep you all updated. I'm sorry he is not up to visits at the moment - he has asked for everyone to keep praying for him and I have assured him that when he is up to it there are people queueing up to come and show their love and support!
Thanks again for all words of encouragement and kind thoughts. Thanks particularly to Jane for having and entertaining Carys for the past couple of days - it has made life so much easier for me and has been lovely for her! You are a treasure.
Love as always
Flo xx
Not much to report from the hospital bed today. David remains very poorly - he just sleeps and is sick literally and even my visits seem too much for him so I am only staying for a couple of hours and then leaving him to rest. The results of the blood tests revealled that he has got some sort of infection so they are starting him on anti-biotics today and they have 24 hour sickness relief in a 'driver' straight into his leg. This doesn't seem to be helping however at the moment. He is also getting more fluid build up in his body cavity which will need to be drained again in the next couple of days.
The staff are all lovely and are doing all they can to keep him comfortable but it's just going to take some time for him to start recovering so I think we are in for a fairly long stint in the hospital....of course I will keep you all updated. I'm sorry he is not up to visits at the moment - he has asked for everyone to keep praying for him and I have assured him that when he is up to it there are people queueing up to come and show their love and support!
Thanks again for all words of encouragement and kind thoughts. Thanks particularly to Jane for having and entertaining Carys for the past couple of days - it has made life so much easier for me and has been lovely for her! You are a treasure.
Love as always
Flo xx
Monday, April 12, 2010
Hi everyone,
I've just left David and come into the office for a couple of hours to try and do some 'normal' stuff for a while. He needs to try and get some sleep and is very poorly - being constantly sick and in quite a lot of pain. The nurses are trying everything to stabilize him but he's now developed a temperature so we are into another round of tests to see if there is any infection which may be causing the sickness.
The Macmillan nurse at the hospital is wonderful and is trying her best to ensure that we get all the information and help we need but generally things do move slowly, and it can be frustrating when you are waiting for the medicines etc. However while I was there she did get one of the doctors to come and talk us through the scan results. It seems that since the last scan 5 weeks ago there has been a very rapid spread of the cancer, which is what we suspected.
Apparently it is not on the bowel as was first mentioned but is actually on the peritoneum which is the membrance which surrounds the stomach, liver, kidneys etc. and that they could see clumps of the disease all over the peritoneum. Dr Bulusi is not back in the country until Thursday so hopefully we will be able to meet with him then and discuss the way forward. At this point the main thing is to get him feeling well again so that he will be fit enough for any chemo etc. that they are able to offer.
I'm so sorry not to be the bearer of better news to you my friends..especially today...love you to all...keep praying..
Florence xx
I've just left David and come into the office for a couple of hours to try and do some 'normal' stuff for a while. He needs to try and get some sleep and is very poorly - being constantly sick and in quite a lot of pain. The nurses are trying everything to stabilize him but he's now developed a temperature so we are into another round of tests to see if there is any infection which may be causing the sickness.
The Macmillan nurse at the hospital is wonderful and is trying her best to ensure that we get all the information and help we need but generally things do move slowly, and it can be frustrating when you are waiting for the medicines etc. However while I was there she did get one of the doctors to come and talk us through the scan results. It seems that since the last scan 5 weeks ago there has been a very rapid spread of the cancer, which is what we suspected.
Apparently it is not on the bowel as was first mentioned but is actually on the peritoneum which is the membrance which surrounds the stomach, liver, kidneys etc. and that they could see clumps of the disease all over the peritoneum. Dr Bulusi is not back in the country until Thursday so hopefully we will be able to meet with him then and discuss the way forward. At this point the main thing is to get him feeling well again so that he will be fit enough for any chemo etc. that they are able to offer.
I'm so sorry not to be the bearer of better news to you my friends..especially today...love you to all...keep praying..
Florence xx
Monday morning.....
Good morning to everyone
Today is my 24th wedding anniversary (and also would have been my own mum and dad's if he was still with us...not sure how many years it would have been though mum...?) and whilst taking the dog out on a walk around the river meadow at the country park I think back to this day 24 years ago and what a lovely day it was - it really was one of the happiest days of my life.
I hope that you will forgive me for a little sentimentalism...but looking back at the photographs (apart from considering how terribly dated they look - Dave wore a shiny silver suit with a pink leather tie and had a moustache!)I think about how many people we have loved and lost since then...and how we still miss many of them so much.
Often the pain of that loss can hit you unexpectedly...a line from a song or a present you were given...but what we hopefully learn through time is to acknowledge and accept that the pain is part of the fact that we still love them and also to be thankful for that person and for each day that they walked alongside us on our journey. Today I want to give a big Florence hug to all those who love us and are walking with us at the moment and to say thankyou for being part of our journey and that we are honoured to be even a small part of yours...
Will hopefully update you all later...have a lovely Monday xx
Today is my 24th wedding anniversary (and also would have been my own mum and dad's if he was still with us...not sure how many years it would have been though mum...?) and whilst taking the dog out on a walk around the river meadow at the country park I think back to this day 24 years ago and what a lovely day it was - it really was one of the happiest days of my life.
I hope that you will forgive me for a little sentimentalism...but looking back at the photographs (apart from considering how terribly dated they look - Dave wore a shiny silver suit with a pink leather tie and had a moustache!)I think about how many people we have loved and lost since then...and how we still miss many of them so much.
Often the pain of that loss can hit you unexpectedly...a line from a song or a present you were given...but what we hopefully learn through time is to acknowledge and accept that the pain is part of the fact that we still love them and also to be thankful for that person and for each day that they walked alongside us on our journey. Today I want to give a big Florence hug to all those who love us and are walking with us at the moment and to say thankyou for being part of our journey and that we are honoured to be even a small part of yours...
Will hopefully update you all later...have a lovely Monday xx
Sunday, April 11, 2010
6 Litres!!!
Morning all
Just a quick update - they came to drain the fluid from around David's stomach at around 8 pm last night - it took 6 hours but in the end they drained 6 litres of fluid! That's 3 large coke bottles!!! Not surprising that he was in pain bless him.
I have just spoken to him this morning and again unsurprisingly he is rather sore and now has a lovely 5 cm incision in his tummy but at least he now doesn't look like he's having triplets!! He won't be out today as they want him to rest and recuperate but should be out tomorrow all being well.
Thanks for checking in - have a blessed Sunday!
PS Many thanks to all who have offered help both practically and through prayer. Please be assured that we ask for help when we need to and it's great to know that you're all there to lean on.
Florence xx
Just a quick update - they came to drain the fluid from around David's stomach at around 8 pm last night - it took 6 hours but in the end they drained 6 litres of fluid! That's 3 large coke bottles!!! Not surprising that he was in pain bless him.
I have just spoken to him this morning and again unsurprisingly he is rather sore and now has a lovely 5 cm incision in his tummy but at least he now doesn't look like he's having triplets!! He won't be out today as they want him to rest and recuperate but should be out tomorrow all being well.
Thanks for checking in - have a blessed Sunday!
PS Many thanks to all who have offered help both practically and through prayer. Please be assured that we ask for help when we need to and it's great to know that you're all there to lean on.
Florence xx
Saturday, April 10, 2010
Tough times ahead...
Hi all
Thanks for checking in again and thanks for all the texts and phone calls I have had already today from friends and family - your love and support make such a difference...as I write this the tears which I have been holding onto for the last couple of hours are finally coming and I feel better for it. Well...let me tell you the latest news..David is now on Elizabeth ward again and is a bit more settled although still very uncomfortable and desperate to get the catheter and the nose tube out. The pain however is now under control as is the sickness.
He had the scan this morning and the good news is that this has shown a large amount of fluid surrounding David's stomach which they are going to drain off using a large needle and local anaesthetic which although nasty will make him far more comfortable and ease the pain. Once he is feeling better he can come home which may even be tomorrow!!
The bad news is the cause of all this fluid build up. It seems that the nasty little bits of cancer cells have now spread to the bowel/around the bowel - apparently its difficult to tell to what extent as the fluid is in the way but trying to get a clear answer is tricky (I am learning that when they are vague its generally not good!). Hopefully on Monday we will get some straight answers from Dr Bulusi, however David is booked in to start chemo again either this week or next so with God's grace this will have the desired effect and shrink everything back down again.
It's tough to take as bad news always is...but it just means we have another fight on our hands and though the mountain does seem a bit higher and a bit steeper than it did a few months ago we ain't going to stop climbing and that's a Florence pledge to everyone including my beloved husband. So...no more tears...bring it on!!
Thanks again for being there guys
xx
Thanks for checking in again and thanks for all the texts and phone calls I have had already today from friends and family - your love and support make such a difference...as I write this the tears which I have been holding onto for the last couple of hours are finally coming and I feel better for it. Well...let me tell you the latest news..David is now on Elizabeth ward again and is a bit more settled although still very uncomfortable and desperate to get the catheter and the nose tube out. The pain however is now under control as is the sickness.
He had the scan this morning and the good news is that this has shown a large amount of fluid surrounding David's stomach which they are going to drain off using a large needle and local anaesthetic which although nasty will make him far more comfortable and ease the pain. Once he is feeling better he can come home which may even be tomorrow!!
The bad news is the cause of all this fluid build up. It seems that the nasty little bits of cancer cells have now spread to the bowel/around the bowel - apparently its difficult to tell to what extent as the fluid is in the way but trying to get a clear answer is tricky (I am learning that when they are vague its generally not good!). Hopefully on Monday we will get some straight answers from Dr Bulusi, however David is booked in to start chemo again either this week or next so with God's grace this will have the desired effect and shrink everything back down again.
It's tough to take as bad news always is...but it just means we have another fight on our hands and though the mountain does seem a bit higher and a bit steeper than it did a few months ago we ain't going to stop climbing and that's a Florence pledge to everyone including my beloved husband. So...no more tears...bring it on!!
Thanks again for being there guys
xx
Never a dull moment........
Good morning all and welcome to a Florence blog
Firstly I woke up this morning at around 7am (on my own...will explain in a minute...) to the most beautiful day as I imagine most of you reading this also did. We have had such a rough few days that it made me cry to see such a peaceful, glorious morning with the birds singing and the sun shining - it's been a tough winter hasn't it...let's hope for sunnier times ahead...
Anyway after a few gorgeous peaceful and happy days in our beloved France where we did all the stuff we really enjoy like taking the dog on long walks and playing Rummikub with the kids David started to feel unwell. He had been very happy and well and eating normally, however his stomach became extremely swollen and hard and he started having some severe pains in the top of his stomach. David being David wanted to hang on and see the doctor on our return on Monday (12th) but on Wednesday night he started being sick and when I saw the blood in it I knew we had to get home asap. Here is where French protocol comes into play. We have to have the dog checked by a vet and injected for rabies or ticks (or something) between 24 and 48 hours before we can return home. No amount of me phoning the vet at 3 am on Thursday morning - (which I did - you know me once I get the bit between my teeth!!!) and pleading was going to change the situation and the vet refused to bend the rules for us. So the best I could do was get her down to the vets at 8 am for the injection which then saw us changing our sailing to the first one on Friday morning which was from Caen.
I therefore then set about booking a hotel in Caen which takes dogs and kids and sick husbands - (very rare but found one in the end) and packing up and cleaning the cottage (whilst David slept...and slept...and was sick...and slept....) with the kids help and driving 4 hours up to Caen. David slept the whole way and the whole of the night but woke up on Friday in a lot of pain. Speaking to David's nurse we were very concerned that something had ruptured or burst in his bowel and he was also getting severly dehydrated. However by grit and determination we got him on the boat and sailed home! After a smooth crossing where we spent an extra 50p on a good cabin (Nick and Sarah - that one's for you!!) he managed to sleep most of the way.
On arriving in Portsmouth we made the dash for home only to be foiled by accidents and roadworks on the M25, M1 and A421 so by the time we made it straight to the acute admissions unit where they were already expecting him David was a wreck and so was I to be honest.
1 hour later he was on painkillers, anti sickness medication and had had an x ray and been seen by the surgical team who established that he had not ruptured anything ( thank goodness!) but had some blockage in his bowel which they couldn't see the cause of so they need to give him a scan to find out what is happening. Having catherterised him and given him a nose tube to drain off some of the fluid in his stomach I left him last night still on acute admissions being observed but a lot more comfortable. The title of this blog is the comment I made to him as I left...I did jokingly say I was thinking of having a tattoo done in honour of our 24th wedding anniversary which in on Monday!!!
I think the scan will be this morning and I am obviously heading down there later to see how things are going and will give you an update as soon as I know anything.
In closing I just want to say a huge thanks to Chloe who dropped her plans last night to pick up Dave's painkillers from the doctors and meet us at the hospital to take the kids and dog home and most especially to my amazing, wonderful children, James and Carys who were complete stars the whole time this was happening. I could not have managed without their help and support from beginning to end. I am so proud of both of them and especially James who gave me so many hugs and told me it would be alright but also helped out practically in so many ways without complaint...thankyou son.
Have a wonderful day all...enjoy the sunshine
Florence x
Firstly I woke up this morning at around 7am (on my own...will explain in a minute...) to the most beautiful day as I imagine most of you reading this also did. We have had such a rough few days that it made me cry to see such a peaceful, glorious morning with the birds singing and the sun shining - it's been a tough winter hasn't it...let's hope for sunnier times ahead...
Anyway after a few gorgeous peaceful and happy days in our beloved France where we did all the stuff we really enjoy like taking the dog on long walks and playing Rummikub with the kids David started to feel unwell. He had been very happy and well and eating normally, however his stomach became extremely swollen and hard and he started having some severe pains in the top of his stomach. David being David wanted to hang on and see the doctor on our return on Monday (12th) but on Wednesday night he started being sick and when I saw the blood in it I knew we had to get home asap. Here is where French protocol comes into play. We have to have the dog checked by a vet and injected for rabies or ticks (or something) between 24 and 48 hours before we can return home. No amount of me phoning the vet at 3 am on Thursday morning - (which I did - you know me once I get the bit between my teeth!!!) and pleading was going to change the situation and the vet refused to bend the rules for us. So the best I could do was get her down to the vets at 8 am for the injection which then saw us changing our sailing to the first one on Friday morning which was from Caen.
I therefore then set about booking a hotel in Caen which takes dogs and kids and sick husbands - (very rare but found one in the end) and packing up and cleaning the cottage (whilst David slept...and slept...and was sick...and slept....) with the kids help and driving 4 hours up to Caen. David slept the whole way and the whole of the night but woke up on Friday in a lot of pain. Speaking to David's nurse we were very concerned that something had ruptured or burst in his bowel and he was also getting severly dehydrated. However by grit and determination we got him on the boat and sailed home! After a smooth crossing where we spent an extra 50p on a good cabin (Nick and Sarah - that one's for you!!) he managed to sleep most of the way.
On arriving in Portsmouth we made the dash for home only to be foiled by accidents and roadworks on the M25, M1 and A421 so by the time we made it straight to the acute admissions unit where they were already expecting him David was a wreck and so was I to be honest.
1 hour later he was on painkillers, anti sickness medication and had had an x ray and been seen by the surgical team who established that he had not ruptured anything ( thank goodness!) but had some blockage in his bowel which they couldn't see the cause of so they need to give him a scan to find out what is happening. Having catherterised him and given him a nose tube to drain off some of the fluid in his stomach I left him last night still on acute admissions being observed but a lot more comfortable. The title of this blog is the comment I made to him as I left...I did jokingly say I was thinking of having a tattoo done in honour of our 24th wedding anniversary which in on Monday!!!
I think the scan will be this morning and I am obviously heading down there later to see how things are going and will give you an update as soon as I know anything.
In closing I just want to say a huge thanks to Chloe who dropped her plans last night to pick up Dave's painkillers from the doctors and meet us at the hospital to take the kids and dog home and most especially to my amazing, wonderful children, James and Carys who were complete stars the whole time this was happening. I could not have managed without their help and support from beginning to end. I am so proud of both of them and especially James who gave me so many hugs and told me it would be alright but also helped out practically in so many ways without complaint...thankyou son.
Have a wonderful day all...enjoy the sunshine
Florence x
Wednesday, March 31, 2010
Keep Fighting....
Well guys...
The sickness is beaten (for now at least!); the new pills mentioned in my last blog have really done the trick. Unfortunately I've added a rather troublesome and remarkably painful chest infection into the equation which saw me at the BEDOC service at South Wing hospital on Sunday evening. I'm on lots of anti-biotics for now but still coughing up nasty brown stuff - YUK! Other that this I'm putting on weight and the chemo scheduled now for the week commencing the 19th April still looks as though it will happen.
We had a great Sunday going to WNL in the morning and sharing the rest of the day with friends - fantastic!
We are off to the cottage in France on Friday for a week with the kids and adding a few business calls in for Teresa in the South West on the way to the Plymouth-Roscoff ferry. Tonight Teresa and I are spending our first night on the new boat which is really exciting. We are preparing the cottage to rent out and if you are interested we've still a few summer holiday weeks left.
Thanks for checking in my friends.
Dave
The sickness is beaten (for now at least!); the new pills mentioned in my last blog have really done the trick. Unfortunately I've added a rather troublesome and remarkably painful chest infection into the equation which saw me at the BEDOC service at South Wing hospital on Sunday evening. I'm on lots of anti-biotics for now but still coughing up nasty brown stuff - YUK! Other that this I'm putting on weight and the chemo scheduled now for the week commencing the 19th April still looks as though it will happen.
We had a great Sunday going to WNL in the morning and sharing the rest of the day with friends - fantastic!
We are off to the cottage in France on Friday for a week with the kids and adding a few business calls in for Teresa in the South West on the way to the Plymouth-Roscoff ferry. Tonight Teresa and I are spending our first night on the new boat which is really exciting. We are preparing the cottage to rent out and if you are interested we've still a few summer holiday weeks left.
Thanks for checking in my friends.
Dave
Thursday, March 25, 2010
And I Think To Myself.....
......what a wonderful world!
OK, OK I have a short memory and last week (before stable 'meds') and with me me barfing up everything (even water) the world didn't seem too wonderful but what a difference a week makes. Health is fantastic. Appetite is back! Hungry again! Ability to blog in full sentences has vanished!
Seriously I am a blessed man. Seriously blessed. I have a wonderful wife, gorgeous children, loving and committed extended family. I have fantastic friends; too many to mention but especial thanks to Nick & Sarah Hearn and David Burrell who always have the right words to say.
Come on.... give us a smile!
OK, OK I have a short memory and last week (before stable 'meds') and with me me barfing up everything (even water) the world didn't seem too wonderful but what a difference a week makes. Health is fantastic. Appetite is back! Hungry again! Ability to blog in full sentences has vanished!
Seriously I am a blessed man. Seriously blessed. I have a wonderful wife, gorgeous children, loving and committed extended family. I have fantastic friends; too many to mention but especial thanks to Nick & Sarah Hearn and David Burrell who always have the right words to say.
Come on.... give us a smile!
Friday, March 19, 2010
All Sorts Happening
Hi All,
After 48 hours of throwing up everything I ate, drank or even thought about the oncologist decided that I wasn't up to the chemo and has postponed it until the 12th April.
To beat the sickness they've started me on two further drugs Levomepromazine whose primary use is the treatment of schizophrenic brain troubles but in low doses wards off sickness very well (so I'm told - by the oncologist not by any dubious alter-ego). Also Dexamethasone which is a steroid to help with appetite. This takes the grand drug total to 9 a day. Rattle, rattle. To be honest I'm glad for the delay. The thought of chemo next week was not sitting too comfortably.
The good news is that the nausea has 100% gone after just one dose. Hurrah! Off to Nick & Sarah Hearn's tonight (our good friends) for the evening. On Sunday a friend of mine is getting married and I'm off to the wedding. Perhaps I'll post a picture of me in my slim fit suit!
Have a good weekend everyone.
God Bless
Dave x
After 48 hours of throwing up everything I ate, drank or even thought about the oncologist decided that I wasn't up to the chemo and has postponed it until the 12th April.
To beat the sickness they've started me on two further drugs Levomepromazine whose primary use is the treatment of schizophrenic brain troubles but in low doses wards off sickness very well (so I'm told - by the oncologist not by any dubious alter-ego). Also Dexamethasone which is a steroid to help with appetite. This takes the grand drug total to 9 a day. Rattle, rattle. To be honest I'm glad for the delay. The thought of chemo next week was not sitting too comfortably.
The good news is that the nausea has 100% gone after just one dose. Hurrah! Off to Nick & Sarah Hearn's tonight (our good friends) for the evening. On Sunday a friend of mine is getting married and I'm off to the wedding. Perhaps I'll post a picture of me in my slim fit suit!
Have a good weekend everyone.
God Bless
Dave x
Thursday, March 18, 2010
Good Days 'n' Bad Days
Well some days the food goes down and stays down. Other days it goes down and comes back to say hello which is VERY frustrating. I have barfed whilst driving, in just about every public loo in Bedford and even in the street (how scuzzy!) in Pont Aven, Brittany. The trouble is I get so little warning. Suddenly I'm hot and then woops seconds later the multi coloured rainbow appears. I'm on a drug called Domperidone which helps a little bit and (thankfully) my weight is at a steady 10.12 which is quite a new experience for a man who has been 12.5 (& + post Christmas, holidays etc.) all his adult life. I must confess to finding the sickness very depressing. The new slim fit 30'' waist suit does look kinda cool though - every cloud.........
I meet with my oncologist tomorrow (Friday) and he will hopefully give me the all clear to start chemo on Monday. That is dependant though on weight, blood counts and me wanting to go ahead. I'll let you know on all three counts.
Thanks for reading - you got nothing better to do my wonderful friends? I'm so glad you haven't or at least if you have that you still make time for me. Bless you.
Florence and I busy buying all the kit we need for the new narrow boat. I've posted some pics above. The dining room here has been turned into a riparian storage depot. Life jackets, crockery and lots of gin. Perfect.
I meet with my oncologist tomorrow (Friday) and he will hopefully give me the all clear to start chemo on Monday. That is dependant though on weight, blood counts and me wanting to go ahead. I'll let you know on all three counts.
Thanks for reading - you got nothing better to do my wonderful friends? I'm so glad you haven't or at least if you have that you still make time for me. Bless you.
Florence and I busy buying all the kit we need for the new narrow boat. I've posted some pics above. The dining room here has been turned into a riparian storage depot. Life jackets, crockery and lots of gin. Perfect.
Check in tomorrow for the latest.
Love
Dave xxxx
Monday, March 15, 2010
Update From France...
Hi everyone,
Greetings from France. Teresa and I are having a few 'kid-free' days at our cottage in Brittany and having a great time. We flew (rather than taking the ferry) which makes life easier and quicker - it's just a 50 minute flight into Brest from Luton. Flying out we experienced one of the scariest landings we've ever suffered - thanks Ryanair! Bounces, swerving, screeching all quite scary, but we survived to tell the tale! The weather is OK, warmer than the UK according to the forecast and remarkably for Brittany no rain yet (he says in faith!!).
We've just bought ourselves a rather fine 39' narrow boat for weekends and, with a view to selling France eventually. We have to be realistic and me being so ill at Centerparcs during half-term made us realise that if we'd been in France without the right medication we'd have been stuffed! We might try and rent the cottage out first and see how it goes but if anyone fancies buying 'Ty Carys' let us know. The narrow boat is currently called Shanghai but is soon to be renamed 'Florence' of course!
Health is sort of OK. The nasal feeding tube keeps being barfed up and replaced. The Fentanyl patches and buccal tablets are handling the pain but because thay are so strong and a 'controlled' drug you are only allowed a few at a time and I keep running out. A day without pain relief with cancer at this stage is not a lot of fun and normally requires copious post strop apologies from me to Teresa, the kids and anyone unfortunate enough to encounter an 'un-doped up' me. The chief battle at present is to put on weight and get strong enough for next week's chemo. To be honest I don't feel up to it at the moment but hopefully that will change. Still have to inject my belly every morning to ward off the pulmonary embolism in my lung and take a panoply of other pills for various purposes. As the saying goes 'keep taking the tablets'!
I don't know about you but I'm VERY ready for spring; the daffs are out here in France and it does feel at little bit warmer but aren't you ready for sunshine?
So my friends I'll let you know if I manage to gain enough weight and stay well enough for the four rounds of chemo to start next week. Hope so. Sort of!
Keep checking in and praying for us.
Love Dave x
Greetings from France. Teresa and I are having a few 'kid-free' days at our cottage in Brittany and having a great time. We flew (rather than taking the ferry) which makes life easier and quicker - it's just a 50 minute flight into Brest from Luton. Flying out we experienced one of the scariest landings we've ever suffered - thanks Ryanair! Bounces, swerving, screeching all quite scary, but we survived to tell the tale! The weather is OK, warmer than the UK according to the forecast and remarkably for Brittany no rain yet (he says in faith!!).
We've just bought ourselves a rather fine 39' narrow boat for weekends and, with a view to selling France eventually. We have to be realistic and me being so ill at Centerparcs during half-term made us realise that if we'd been in France without the right medication we'd have been stuffed! We might try and rent the cottage out first and see how it goes but if anyone fancies buying 'Ty Carys' let us know. The narrow boat is currently called Shanghai but is soon to be renamed 'Florence' of course!
Health is sort of OK. The nasal feeding tube keeps being barfed up and replaced. The Fentanyl patches and buccal tablets are handling the pain but because thay are so strong and a 'controlled' drug you are only allowed a few at a time and I keep running out. A day without pain relief with cancer at this stage is not a lot of fun and normally requires copious post strop apologies from me to Teresa, the kids and anyone unfortunate enough to encounter an 'un-doped up' me. The chief battle at present is to put on weight and get strong enough for next week's chemo. To be honest I don't feel up to it at the moment but hopefully that will change. Still have to inject my belly every morning to ward off the pulmonary embolism in my lung and take a panoply of other pills for various purposes. As the saying goes 'keep taking the tablets'!
I don't know about you but I'm VERY ready for spring; the daffs are out here in France and it does feel at little bit warmer but aren't you ready for sunshine?
So my friends I'll let you know if I manage to gain enough weight and stay well enough for the four rounds of chemo to start next week. Hope so. Sort of!
Keep checking in and praying for us.
Love Dave x
Wednesday, March 3, 2010
A moment to reflect..
Today I looked back over some of the 2+ years worth of blog entries that David and occasionally myself and Chloe have made. If you get a moment today I suggest you do the same. It makes powerful and often moving reading. The scary thing is how fast the time has gone...and yet at the same time I almost struggle to remember what life was like before the big C came into our lives.
If I am honest since that time it has dominated our every waking moment and continues to affect everything we do. Yet it has also encouraged us to live life to the full and almost to live each day as if it was our last as a family together and that has been fabulous. Looking back on the last 2 years we have had some amazing times and wonderful experiences and I have treasured all of those good times and have found a strength through the difficult ones which I never knew I had and I am proud of myself and of all the wonderful people in my life who inspire and help me.
On a recent trip to the hospital one of the nurses who was treating David said that I had 'a hard calling'. Although I had never thought of it that way it struck me that it is a calling in so many ways and although it is not one I would have chosen it is one that I am privileged and honoured to try and fulfil. I am not sure what the next 12 months will bring...health or sickness...good times or more difficult ones but I do have the peace that comes with knowing that I am not alone on this journey and that I am blessed....I pray that in the madness of today you get chance to look back over the past few years or months and know that you feel the same.
Florence
If I am honest since that time it has dominated our every waking moment and continues to affect everything we do. Yet it has also encouraged us to live life to the full and almost to live each day as if it was our last as a family together and that has been fabulous. Looking back on the last 2 years we have had some amazing times and wonderful experiences and I have treasured all of those good times and have found a strength through the difficult ones which I never knew I had and I am proud of myself and of all the wonderful people in my life who inspire and help me.
On a recent trip to the hospital one of the nurses who was treating David said that I had 'a hard calling'. Although I had never thought of it that way it struck me that it is a calling in so many ways and although it is not one I would have chosen it is one that I am privileged and honoured to try and fulfil. I am not sure what the next 12 months will bring...health or sickness...good times or more difficult ones but I do have the peace that comes with knowing that I am not alone on this journey and that I am blessed....I pray that in the madness of today you get chance to look back over the past few years or months and know that you feel the same.
Florence
Saturday, February 27, 2010
Mixed News - Nodules On The March
Hi Everyone,
Well the scan feedback was mixed. No secondaries anywhere which is great news BUT the little flakes and nodules that they found in my body cavity at the time of original diagnoses appear to be be 'waking up'. If you have been following my story since the outset you'll remember that it was these little 'nodules' that put a halt to the curative surgery in the early days.
The 'waking up' was shown by water around my liver and a funny shaped kidney. The oncologist reckons that if he zaps them early enough we could buy me some time. I can't have anymore radiotherapy so it is the chemo route. I think he would like to have started straight away but I'm too weak at present. I have the task of putting on some weight, and getting stronger before March 22nd when four rounds (four weeks each) of chemo begins. This time I'm not having Oxealpatin. This is the blighter that gave me such bad side effects last time. This time round I'm having Irinotecan (Campto) which I'm assured is as effective but kinder as far as side effects are concerned.
So...chemo.... mmmm and I had just got enough hair to spike again. Never mind! The wonderful truth that I was given 9 months of life initially and I am now in month 26! Amen.
On the food front the feeding tube is back in place and I'm getting as much 'gloop' down me as I can stand. I'm also managing to eat some things normally, swallowing is OK and the anti-nausea medication seems to be helping in the battle to keep grub down.
I'm keeping busy which really helps. People keep lecturing me on 'taking it easy' but honestly I'd go mad! I've done a mini makeover of Carys' bedroom and I'm off on a stag 'do' with some mates tonight. I shall trundle around with my feeding rucksack looking vulnerable and delicate! Perhaps I'll manage a Guinness or two - it is 'good for you' after all!
Thanks for dropping by.
Luv
Dave xx
Well the scan feedback was mixed. No secondaries anywhere which is great news BUT the little flakes and nodules that they found in my body cavity at the time of original diagnoses appear to be be 'waking up'. If you have been following my story since the outset you'll remember that it was these little 'nodules' that put a halt to the curative surgery in the early days.
The 'waking up' was shown by water around my liver and a funny shaped kidney. The oncologist reckons that if he zaps them early enough we could buy me some time. I can't have anymore radiotherapy so it is the chemo route. I think he would like to have started straight away but I'm too weak at present. I have the task of putting on some weight, and getting stronger before March 22nd when four rounds (four weeks each) of chemo begins. This time I'm not having Oxealpatin. This is the blighter that gave me such bad side effects last time. This time round I'm having Irinotecan (Campto) which I'm assured is as effective but kinder as far as side effects are concerned.
So...chemo.... mmmm and I had just got enough hair to spike again. Never mind! The wonderful truth that I was given 9 months of life initially and I am now in month 26! Amen.
On the food front the feeding tube is back in place and I'm getting as much 'gloop' down me as I can stand. I'm also managing to eat some things normally, swallowing is OK and the anti-nausea medication seems to be helping in the battle to keep grub down.
I'm keeping busy which really helps. People keep lecturing me on 'taking it easy' but honestly I'd go mad! I've done a mini makeover of Carys' bedroom and I'm off on a stag 'do' with some mates tonight. I shall trundle around with my feeding rucksack looking vulnerable and delicate! Perhaps I'll manage a Guinness or two - it is 'good for you' after all!
Thanks for dropping by.
Luv
Dave xx
Tuesday, February 23, 2010
More 'Not So Good' News - Still Smiling!
Hi Guys,
Well; CenterParcs was a challenge! I really wasn't too well and it all started with me honking up the nasal feeding tube (again) on the Monday evening and deciding thereafter not to bother for the duration of the holiday. Carys picked up a sickness and squits bug which I caught and then I ran out of painkiller and had to scout every chemist in Brandon & Thetford to find a pharmacist who carries the particular pill. Not an easy task. Needless to say I lost some weight and became very well acquainted with the enamel bowl in our villa. I'm afraid I still puke up most of what I try to eat. Now having said all that between us we enjoyed: badminton, table tennis, archery, fencing, quad bikes, go carts, spa pampering, jewelry making, laser shooting and loads of swimming. We also watch lots of Olympics and some great films including 'Up' and 'The Hurt Locker'. Despite the health issues we really did have a great time; thanks to Florence for organising it for us.
Today was CT scan day and I thought everything would go pretty much to plan but No! Because they use a special dye that is injected into your arm during the scan you have to have a sit down for 10 minutes afterwards before they'll let you go. I've never had any feedback before prior to the consultant's feedback meeting (normally a few days later). Today a nervous looking doctor appeared to tell me that I had a number of blood clots on my lungs which would need instant treatment. This was a real shock as I have had no symptoms at all, no cough, no chest pain, no phlegm. So I now have to inject myself in my much depleted belly (or Florence will) with Tinzaparin Sodium every morning for evermore (no respite for good behaviour). AMEN.
Also... my excellent upper GI specialist nurse told me that there was a lot of fluid around my stomach which would indicate further 'change'; this is normally not good news. We get the full feedback on Thursday so I'll let you know what's said.
Meanwhile _ I have to report to the Endoscopy Dept to have my nasal feeding tube re-fitted (again) so I can get some calories and nutrition down me again. I'm weighing in at a scrawny 10.10lb! In the afternoon I'm getting a visit from my Macmillan Community Nurse.
As you can see it is all go at this end. Please keep praying for me!
Also to the believers out there could you pray for a young mum called Anthea who is suffering from post-natal depression and really needs to Lord's help. If you're not a believer then send some positive 'vibes' in her direction (she lives in Northampton); she's really struggling and needs to get well soon.
Think that's all for now - I'll update again on Thursday after the consultant's meeting and let you know what's said.
Luv Dave xx
Well; CenterParcs was a challenge! I really wasn't too well and it all started with me honking up the nasal feeding tube (again) on the Monday evening and deciding thereafter not to bother for the duration of the holiday. Carys picked up a sickness and squits bug which I caught and then I ran out of painkiller and had to scout every chemist in Brandon & Thetford to find a pharmacist who carries the particular pill. Not an easy task. Needless to say I lost some weight and became very well acquainted with the enamel bowl in our villa. I'm afraid I still puke up most of what I try to eat. Now having said all that between us we enjoyed: badminton, table tennis, archery, fencing, quad bikes, go carts, spa pampering, jewelry making, laser shooting and loads of swimming. We also watch lots of Olympics and some great films including 'Up' and 'The Hurt Locker'. Despite the health issues we really did have a great time; thanks to Florence for organising it for us.
Today was CT scan day and I thought everything would go pretty much to plan but No! Because they use a special dye that is injected into your arm during the scan you have to have a sit down for 10 minutes afterwards before they'll let you go. I've never had any feedback before prior to the consultant's feedback meeting (normally a few days later). Today a nervous looking doctor appeared to tell me that I had a number of blood clots on my lungs which would need instant treatment. This was a real shock as I have had no symptoms at all, no cough, no chest pain, no phlegm. So I now have to inject myself in my much depleted belly (or Florence will) with Tinzaparin Sodium every morning for evermore (no respite for good behaviour). AMEN.
Also... my excellent upper GI specialist nurse told me that there was a lot of fluid around my stomach which would indicate further 'change'; this is normally not good news. We get the full feedback on Thursday so I'll let you know what's said.
Meanwhile _ I have to report to the Endoscopy Dept to have my nasal feeding tube re-fitted (again) so I can get some calories and nutrition down me again. I'm weighing in at a scrawny 10.10lb! In the afternoon I'm getting a visit from my Macmillan Community Nurse.
As you can see it is all go at this end. Please keep praying for me!
Also to the believers out there could you pray for a young mum called Anthea who is suffering from post-natal depression and really needs to Lord's help. If you're not a believer then send some positive 'vibes' in her direction (she lives in Northampton); she's really struggling and needs to get well soon.
Think that's all for now - I'll update again on Thursday after the consultant's meeting and let you know what's said.
Luv Dave xx
Sunday, February 14, 2010
Quite A Week
Hi All,
Had quite a week! Lots of trips to hospital to get my nose feeding tube re-fitted as everytime I honk it pops out to say hello! To be honest I've just started to put it back myself now (don't tell anyone). I really want to avoid having a 'peg' fitted which is a valve in your tummy and obviously not too pleasant. Eating normally still hurts very much though is just about possible. The pain relief is working well and keeping me comfortable - just.
My next scan is on the 22nd with feedback on the 25th. Let's hope and pray that there is no further spread or nasty secondaries making an appearance anywhere.
We are off to CenterParcs tomorrow for a Monday to Monday holiday which should be fun. I'm not allowed to swim but will happily spectate with a good book and my feeding pump keeping my gloop levels topped up.
There is little or no internet connection at CenterParcs so I'll probably not be able to blog until we get back.
Thanks for checking in, keep praying!
Love
Dave
Had quite a week! Lots of trips to hospital to get my nose feeding tube re-fitted as everytime I honk it pops out to say hello! To be honest I've just started to put it back myself now (don't tell anyone). I really want to avoid having a 'peg' fitted which is a valve in your tummy and obviously not too pleasant. Eating normally still hurts very much though is just about possible. The pain relief is working well and keeping me comfortable - just.
My next scan is on the 22nd with feedback on the 25th. Let's hope and pray that there is no further spread or nasty secondaries making an appearance anywhere.
We are off to CenterParcs tomorrow for a Monday to Monday holiday which should be fun. I'm not allowed to swim but will happily spectate with a good book and my feeding pump keeping my gloop levels topped up.
There is little or no internet connection at CenterParcs so I'll probably not be able to blog until we get back.
Thanks for checking in, keep praying!
Love
Dave
Sunday, February 7, 2010
Sunday Morning
Hi All,
A Sunday morning update.
Yesterday was a lot less eventful than Friday; no more emergency tube replacement trips to the hospital needed. I'm starting to get into a routine with the feeding. I start at 5.00 pm and then overnight to 8.00 am; 15 hours a day of glorious nourishing gloop. They can supply me with a ruck sack for 'food on the go'.. not sure that it wouldn't look a little 'sad' but what's new eh?
Seemed to have got the pain sorted thanks to Fentanyl which I'm assured is not addictive but really hits the spot. It does have some side effects including itching, sweating and twitching - lovely!
Just wanted to thank all those who visited me in hospital so thanks to:
A Sunday morning update.
Yesterday was a lot less eventful than Friday; no more emergency tube replacement trips to the hospital needed. I'm starting to get into a routine with the feeding. I start at 5.00 pm and then overnight to 8.00 am; 15 hours a day of glorious nourishing gloop. They can supply me with a ruck sack for 'food on the go'.. not sure that it wouldn't look a little 'sad' but what's new eh?
Seemed to have got the pain sorted thanks to Fentanyl which I'm assured is not addictive but really hits the spot. It does have some side effects including itching, sweating and twitching - lovely!
Just wanted to thank all those who visited me in hospital so thanks to:
- My long-suffering wife and kids Carys, James & Chloe.
- My mum and dad - all the way from Derby.
- Amy & James Fokkens (my lovely oldest daughter and her hubbie).
- Nick Hearn (thanks for the mags mate).
- Stuart Simms and the Goodson clan (David, Suzy and Ben) from Church.
- Our minister - Rev Graham Miles.
- My brill mates (Da Boyz) David B & Adrian F from sunny Leicestershire (you keep me sane(ish).
Actually getting excited about going out today. Only to IKEA in MK but a trip none the less. We are looking a kitchens as ours is looking a little 'tired' these days.
Think that's all for now.
Best wishes from Gloop Central.
Dave xx
Friday, February 5, 2010
Home After 10 'Interesting Days'
Hi Everyone,
I'm home again now after 10 nights in the Elizabeth Ward at Bedford South Wing hospital. I know that Teresa has kept you updated but here's the status of things at present:
I can swallow but it hurts very much as it hits my stomach. I've got to be tube fed (through the nose) for the next two weeks. This means 15 hours a day attached to a pump being dripped 'gloop'. Can't taste it because it goes straight into my tummy. It looks like evaporated milk and supposedly the most nutritionally balance food on the planet! Yum!
The pain on swallowing appears to be from the radiotherapy burning and virus in my stomach. I'm on antiviral drugs which should work. They've also got the pain sorted with patches for the background pain and a pill for the sudden 'breakthrough' pain I experience in the evenings and early morning.
The ward experience was interesting. Shared my bay with a lot of older guys some of whom were suffering form dementia. It's sad really as these blokes were really confused, didn't know where they were, crying for their mums, screaming all night. Needless to say it was great to get back to the peace of the marital bed last night.
Unfortunately I had to go back this morning because no sooner had I set everything up last night for my feed than I was sick and out popped the tube! So, back to South Wing this morning for a new tube and quick x ray to ensure it was in the right place. Any how back home now watching dodgy day time TV and being fed at last!
Not quite sure what happens next but I obviously need to be able to eat and overcome (or at least control) the pain. I have another CT scan booked in February. The endoscopy last week showed the tumour to be at worst 'dormant' and at best shrinking!
Thanks to all those who visited me - it helped no end to see friendly faces. Thanks too to all the hard working NHS staff on the Elizabeth Ward - heroes and angels all.
Thanks for checking in on me; I'll keep you updated.
Love Dave xxxxxxxxxxxxxx
Tuesday, February 2, 2010
Quick update
Morning Folks
Quick update today...had the results of the biopsy yesterday which confirmed a virus and David was started on anitviral medication last night which he needs to be on for 48 hrs. They have also (finally!) sorted out his pain relief and he is on morphine patches which are doing the trick. They have also changed the feed to a more nutritious one so it should get his energy levels up.
He is feeling much better today and is hoping to be able to try something to eat tomorrow which is great news. They are going to re-assess him on Thursday with hopefully a view to letting him out maybe Friday if all is looking good (please pray that he gets out before the weekend!!!)
All good news and thanks again for all your support! Sorry it's a brief one today...when he gets out David has loads to share with you about his experiences in Elizabeth ward!
signing off...a madly busy Florence xx
Quick update today...had the results of the biopsy yesterday which confirmed a virus and David was started on anitviral medication last night which he needs to be on for 48 hrs. They have also (finally!) sorted out his pain relief and he is on morphine patches which are doing the trick. They have also changed the feed to a more nutritious one so it should get his energy levels up.
He is feeling much better today and is hoping to be able to try something to eat tomorrow which is great news. They are going to re-assess him on Thursday with hopefully a view to letting him out maybe Friday if all is looking good (please pray that he gets out before the weekend!!!)
All good news and thanks again for all your support! Sorry it's a brief one today...when he gets out David has loads to share with you about his experiences in Elizabeth ward!
signing off...a madly busy Florence xx
Sunday, January 31, 2010
Still in hospital
Good morning all,
Well I was hoping it would be my hubby who would be blogging this morning but I'm afraid you're stuck with me again.
He is still in hospital and at the moment it looks like he will be in there until at least the end of next week. Just to let you know where we are at....
1/ The surgery on his bum was a great success and things are healing nicely which is good news.
2/ He is currently being fed gloop through a tube down his nose - it was a horrible experience for him getting it put in and it made him sick initially but things finally settled down and he is tolerating the feed and his weight has stabilised - so more good news.
3/ We are still awaiting the results of the biopsy on the infection in his stomach which is frustrating as the pain is getting worse and they won't treat it until they know exactly what is causing it. Dr Belusu and Eleanor came to see us on Friday and Dr Belusu said that due to the radiotherapy many of the cells in the top of his stomach were dead and the infection likes to breed on this 'dead' area. We are hoping to get the results on Monday and hopefully get some treatment going.
The bad news is that because the pain and the swallowing are worse he is unlikely to be able to come home until they can sort both of these out which will take a while...so I'm home alone at the moment and taking the opportunity to get up to all sorts of mischief (not -sadly!)
He is constantly tired as the ward is noisy at night and is finding the increased pain quite hard to deal with and although he is getting a lot of pain relief it often doesn't seem that effective to be honest. It is hard to see him looking so poorly but he's in the right place and we just need to keep him there until he's on the mend. He sends lots of hugs and thanks to everyone - it's wonderful to know you're all there praying for us and thinking of us - it's what's keeping me sane at the moment.
Take care -will blog again when we know more
Flo xx
Well I was hoping it would be my hubby who would be blogging this morning but I'm afraid you're stuck with me again.
He is still in hospital and at the moment it looks like he will be in there until at least the end of next week. Just to let you know where we are at....
1/ The surgery on his bum was a great success and things are healing nicely which is good news.
2/ He is currently being fed gloop through a tube down his nose - it was a horrible experience for him getting it put in and it made him sick initially but things finally settled down and he is tolerating the feed and his weight has stabilised - so more good news.
3/ We are still awaiting the results of the biopsy on the infection in his stomach which is frustrating as the pain is getting worse and they won't treat it until they know exactly what is causing it. Dr Belusu and Eleanor came to see us on Friday and Dr Belusu said that due to the radiotherapy many of the cells in the top of his stomach were dead and the infection likes to breed on this 'dead' area. We are hoping to get the results on Monday and hopefully get some treatment going.
The bad news is that because the pain and the swallowing are worse he is unlikely to be able to come home until they can sort both of these out which will take a while...so I'm home alone at the moment and taking the opportunity to get up to all sorts of mischief (not -sadly!)
He is constantly tired as the ward is noisy at night and is finding the increased pain quite hard to deal with and although he is getting a lot of pain relief it often doesn't seem that effective to be honest. It is hard to see him looking so poorly but he's in the right place and we just need to keep him there until he's on the mend. He sends lots of hugs and thanks to everyone - it's wonderful to know you're all there praying for us and thinking of us - it's what's keeping me sane at the moment.
Take care -will blog again when we know more
Flo xx
Wednesday, January 27, 2010
News from the hospital bed!
Hi folks
Me again - just heard from David re the results of the endoscopy. All good news! The tumour has responded well to the radio and chemotherapy and seems to have shrunk. There was no sign of any spread and no thickening of the oesophagus!!! Fantastic!!!
The pain is being caused by the radiotherapy burn and also he has picked up a bad infection in his throat and oesophagus. They are going to give him antibiotics and probably feed him through a tube for a couple of days to let everything heal.
Phew!! Thanks so much again for your thoughts and prayers.
Will get David to blog once he is home.
Love to all
A relieved Florence x
Me again - just heard from David re the results of the endoscopy. All good news! The tumour has responded well to the radio and chemotherapy and seems to have shrunk. There was no sign of any spread and no thickening of the oesophagus!!! Fantastic!!!
The pain is being caused by the radiotherapy burn and also he has picked up a bad infection in his throat and oesophagus. They are going to give him antibiotics and probably feed him through a tube for a couple of days to let everything heal.
Phew!! Thanks so much again for your thoughts and prayers.
Will get David to blog once he is home.
Love to all
A relieved Florence x
Florence Update
Hi all - quick update for you!
Many thanks for all your kind comments on the last blog, my poor hubbie has been in a lot of pain and discomfort over the past couple of weeks and it has really got him down as you might imagine. This is the first time since the diagnosis that he has had any prolonged period of feeling unwell and not being able to eat, drink or poo without experiencing severe pain has not been a great deal of fun as you can imagine!
After a lovely day of thanksgiving and celebration on Sunday when we had the privilege of being asked to be godparents to Alfie and standing with Nick and Sarah at the christening of both Lucy and Alfie, David finally he gave in (I was about to kill him myself!!) and was submitted for observation on Monday at Bedford Hospital acute admissions. After various proddings and pokings etc. he was put on a drip and had surgery on his bum on Monday night.
I went to see him yesterday afternoon and although tired and rather doped up ( he is having morphine every 4 hours) he was able to get some food and drink down which was a very positive step. The surgery went well apparently (thanks to Mr Skipper who came in especially to perform it!) and although he has an enormous bruise which I'm sure makes you all wince ( it did me!) he seems to think that things are feeling a little better down below - time will tell I'm sure!!
Crunch day is today as he is having another endoscopy this morning to determine what is causing all the pain when he is swallowing. They will then decide if he needs any further surgery or treatment. I will give you an update once I know more but please pray that it is just damage from the radiotherapy and not anything more sinister.
Thanks again for all your prayers and phone calls and visits (David and Graham) and offers of help. I know it's a cliche but when you feel you have no strength left God steps in and carries you and that's where I feel we are (again!) at this moment. It's a very simple truth but very precious.
Florence xxx
Many thanks for all your kind comments on the last blog, my poor hubbie has been in a lot of pain and discomfort over the past couple of weeks and it has really got him down as you might imagine. This is the first time since the diagnosis that he has had any prolonged period of feeling unwell and not being able to eat, drink or poo without experiencing severe pain has not been a great deal of fun as you can imagine!
After a lovely day of thanksgiving and celebration on Sunday when we had the privilege of being asked to be godparents to Alfie and standing with Nick and Sarah at the christening of both Lucy and Alfie, David finally he gave in (I was about to kill him myself!!) and was submitted for observation on Monday at Bedford Hospital acute admissions. After various proddings and pokings etc. he was put on a drip and had surgery on his bum on Monday night.
I went to see him yesterday afternoon and although tired and rather doped up ( he is having morphine every 4 hours) he was able to get some food and drink down which was a very positive step. The surgery went well apparently (thanks to Mr Skipper who came in especially to perform it!) and although he has an enormous bruise which I'm sure makes you all wince ( it did me!) he seems to think that things are feeling a little better down below - time will tell I'm sure!!
Crunch day is today as he is having another endoscopy this morning to determine what is causing all the pain when he is swallowing. They will then decide if he needs any further surgery or treatment. I will give you an update once I know more but please pray that it is just damage from the radiotherapy and not anything more sinister.
Thanks again for all your prayers and phone calls and visits (David and Graham) and offers of help. I know it's a cliche but when you feel you have no strength left God steps in and carries you and that's where I feel we are (again!) at this moment. It's a very simple truth but very precious.
Florence xxx
Saturday, January 23, 2010
Update
Hi Guys,
Apologies is this is too much info but......
My health is really not too good at present. The Addenbrookes radiotherapy has left me with ZERO appetite and a very painful oesophagus. Eating and drinking hurts like mad and I'm loosing weight which is not ideal. Really don't went a stent but may have to soon. The polyps removed from my tail end earlier in the month were all benign - which is good news but the surgery was (and still is) painful. No gory details but you can imagine! May have to have another procedure this week to rectify a spasm that won't go away. Pure joy!
Feeling a little sorry for myself which is not my style so I'm going to pull myself together, rise to the occasion and either go shopping (always a tonic), build a fire and watch a movie, or perhaps both.
On the movie front I've seen two at the flicks recently 'The Road' and 'Avatar'. I can recommend both but the road is unremittingly depressing; quite the bleakest thing I've ever seen but brilliantly acted by Vigo Mortesen (Lord of The Rings). Avatar totally lives up to its press - see it in 3D.
Can't be too ill can I as I managed a night out with my mates night, poker (with matchsticks) at which I'm unbelievably crap. Quite clueless.
I'll probably regret blogging this but faith levels are low at present. God seems quite distant and getting to church is a battle and not much of a priority which perhaps it should be. Been 100% for God all my live but suddenly realised how many family days haven't happened because of churchy stuff. How many evenings in the past we haven't seen our kids because of one event or another. It's bizarre really but we are not really going much at present and not particularly missing it. Taking a spiritual sabbatical. No doubt I'll be inundated with comments (that will teach me to be so self disclosive) but please, keep it nice!
So guys; thanks for checking in.
Regards
David
Sunday, January 17, 2010
Addenbrookes Update
Hi everyone..
I spent last week in Addenbrookes hospital Cambridge have 5 consecutive sessions of radiotherapy on my oesophagus and upper stomach. Rather than traveling each day I stopped over there in a budget hotel on my own and then Teresa joined me and we booked into somewhere a bit posher! I can recommend the Felix Hotel in Cambridge.
I'm feeling OK, quite tired from the chemo tablets and I have absolutely no appetite at all. Seriously I make myself eat because I know I have to. I never feel hungry and more than a few mouthfuls leaves me feeling sick. If you are praying for me then a return of my normally healthy appetite would be a good place to start. Thanks.
Looking forward to welcoming my cousin Julia and her boyfriend David for lunch today and then a quiet week next week getting over the treatment. Might just have planned a night out with my mates next Friday (for medicinal purposes you understand). I have a scan booked again in early Feb to check that things haven't spread further.
Promise I'll keep blogging and letting you all know what's happening.
Love
Dave
I spent last week in Addenbrookes hospital Cambridge have 5 consecutive sessions of radiotherapy on my oesophagus and upper stomach. Rather than traveling each day I stopped over there in a budget hotel on my own and then Teresa joined me and we booked into somewhere a bit posher! I can recommend the Felix Hotel in Cambridge.
I'm feeling OK, quite tired from the chemo tablets and I have absolutely no appetite at all. Seriously I make myself eat because I know I have to. I never feel hungry and more than a few mouthfuls leaves me feeling sick. If you are praying for me then a return of my normally healthy appetite would be a good place to start. Thanks.
Looking forward to welcoming my cousin Julia and her boyfriend David for lunch today and then a quiet week next week getting over the treatment. Might just have planned a night out with my mates next Friday (for medicinal purposes you understand). I have a scan booked again in early Feb to check that things haven't spread further.
Promise I'll keep blogging and letting you all know what's happening.
Love
Dave
Saturday, January 9, 2010
Round #3
Hi Troops,
Well back from France to frozen Britain, it wasn't balmy there but certainly warmer than here!
Chemo starated for the third time today for ten days and I've five days of radiotherapy @ Addenbrookes in Cambridge next week. Not really looking forward to it but, needs must.
For your prayers (good to pray specifically) let's ask the Almighty to use the treatment to halt the spread. Who knows I might even hear the glorious word 'remission' one day.
This is cheeky but if you are not great at the prayer thing I've written one for you!
OK, thanks for checking in!
Dave
Well back from France to frozen Britain, it wasn't balmy there but certainly warmer than here!
Chemo starated for the third time today for ten days and I've five days of radiotherapy @ Addenbrookes in Cambridge next week. Not really looking forward to it but, needs must.
For your prayers (good to pray specifically) let's ask the Almighty to use the treatment to halt the spread. Who knows I might even hear the glorious word 'remission' one day.
This is cheeky but if you are not great at the prayer thing I've written one for you!
Dear Lord,
The bible is full of stories of you healing people. You haven't changed. Heal Dave. Stop the spread of this nasty disease, use the treatment, his doctors and your power to put him right. AMEN
OK, thanks for checking in!
Dave
Saturday, January 2, 2010
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Friday, January 1, 2010
HAPPY NEW YEAR 2010!!!!
Hi everyone and New Year Greetings from Brittany. Hope you have a great 2010 and all the happiness, peace and prosperity you can handle.
We’ve had a great Christmas and are enjoying our New Year break here, reserves are built up for round #3 of treatment in January. I’ll keep you briefed as to dates and how it’s going as the month progresses. The aim is to halt the spread into my stomach. They are holding further intravenous chemo in reserve to handle secondary spread as and when. It’s amazing to think that it was the presence of ‘specks’ of malignancy on my diaphragm and inside my body cavity that denied me the chance of surgery (only ‘human’ cure) in the first place. That spread was absolutely stopped in its tracks and, did not originally (and has not since) developed into anything nasty.
Health-wise I’m doing OK, swallowing happens (with some water) but I do feel sick sometimes. This is a very small price to pay for still being around. I’m very blessed. Diagnosed in 2007, given 9 months and still here in 2010. Brill – roll on 2011. Got loads planned for 2010 including decadent holidays with my lovely wife and family, mad breaks away with mates and lots of boating when the sun shines again. I utterly intend to live life to the full so brace yourselves for all the details!
I’ll blog next in a week or so after we are back from France and the treatment’s started.
God Bless
Dave xxxx
We’ve had a great Christmas and are enjoying our New Year break here, reserves are built up for round #3 of treatment in January. I’ll keep you briefed as to dates and how it’s going as the month progresses. The aim is to halt the spread into my stomach. They are holding further intravenous chemo in reserve to handle secondary spread as and when. It’s amazing to think that it was the presence of ‘specks’ of malignancy on my diaphragm and inside my body cavity that denied me the chance of surgery (only ‘human’ cure) in the first place. That spread was absolutely stopped in its tracks and, did not originally (and has not since) developed into anything nasty.
Health-wise I’m doing OK, swallowing happens (with some water) but I do feel sick sometimes. This is a very small price to pay for still being around. I’m very blessed. Diagnosed in 2007, given 9 months and still here in 2010. Brill – roll on 2011. Got loads planned for 2010 including decadent holidays with my lovely wife and family, mad breaks away with mates and lots of boating when the sun shines again. I utterly intend to live life to the full so brace yourselves for all the details!
I’ll blog next in a week or so after we are back from France and the treatment’s started.
God Bless
Dave xxxx
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