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
Wednesday, April 14, 2010
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
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