Friday Update:
As I write this it is now almost 10.30pm on Friday night and it has been an emotional 24 hours.
Last night the reality hit me as I lay in bed that the man I love and married nearly 30 years ago and who has lain beside me almost every night for those almost 30 years will prob never do so again. The loneliness of that notion was totally overwhelming and my sorrow is beyond words. And yes I cried - alot, but yet in my sorrow and heartbreak God surrounded me with His loving arms and I slept undisturbed and peacefully until the morning.
Roy however did not have so peaceful night and to say he scared the living daylights out of the nursing staff would prob be an understatement. His antics have also put back any plans for him go home anytime soon.
So your wondering what he's been up to - well last night he decided to watch Bones on TV3. Half way through he was feeling very tired so he decided to go to sleep. He started to dream that he was part of the Bones team and that he had a puzzle to solve. He managed to do this and the answer was that he needed to get to the closest airport and catch a flight to Chicago where everyone was waiting for him. He got out of bed, put on his pants and walked down the long corridor - unaided in any way - to the nurses station and told them he needed to get to the airport now. They tried to convince him that it was a dream but he was adamant that it was real and they had to go and get me cause I was in the next room and I'd know all about it. The nurses told him I was at home and that he'd see me tomorrow (Friday) and he finally calmed down and woke up properly. They got him back in bed, they barricaded one side of the bed and on the other they placed some special mats that would set off an alarm when his feet touched them. He became a prisoner in his bed.
Talking to the Doc today they are still not sure why these dreams continue to happen and my concern is if they do continue how safe will Roy be at home. I can't watch him 24/7.
The blood results also came back today and they are apparently all over the place with a marked decrease in kidney function. Roy also has some major swelling happening in his right foot and ankle so we made a trip to the hospital to have an ultra-sound done to make sure there were no blood clots developing. None were found and the Doc thinks the swelling may be due to secretion from the lymph nodes. Roy's vomiting has also returned so they have changed and increased one of his anti nausea meds. This seems to have helped as he was a lot better this afternoon.
As far as the radiation is concerned the Doc is not pushing that anymore because there are more important/serious things going on that need sorting out.
Prognosis as the Doc see it is that Roy has weeks not months. Wow it is way easier to write that than actually say it.
Personally the way things are going I'm not sure he's coming home again.
I want to thank my friend Diana for taking me up and down to Palmy today and for inviting me for dinner and for the nice evening out to watch her daughters in a local musical production. I had a good time and yet it was an evening tinged with sadness because Roy was supposed to have joined us as well and it was another reality check that I am now doing things alone.
Last night at this time I was in tears and now I am again. I sit here looking at the empty bed that now sits in my lounge fills me with sadness and I dread the empty bed that awaits me upstairs. I grieve the overwhelming loss and loneliness that I have to face. And I wonder how can I face this. I know that the Lord is my strength and yet I feel so adrift.
With much sorrow and a heavy heart.
Jolanda
PS: Excuse any mistakes it's been a long day.
Friday 31 May 2013
Thursday 30 May 2013
I received the following devotions from a dear friend of mine and just wanted to share them with you. I hope you get as much out of them as I did. Enjoy :0)
They are entitled - "When a Believer Dies".
They are entitled - "When a Believer Dies".
Sunday, 26 May 2013
'...You will not grieve like people who have no hope.' 1 Thessalonians 4:13 NLT
Our culture makes death a subject to avoid or to speak of with gloom. When the subject comes up, even Christians try to dodge the bullet by escaping into vague, irrelevant-sounding metaphors. But God's Word makes death clear and unthreatening for those who trust in Christ. 'Dear brothers and sisters, we want you to know what will happen to the believers who have died, so you will not grieve like people who have no hope.'
God's Word is direct, concrete, and encouraging on this subject. 'Precious in the sight of the Lord is the death of His [godly ones]' (Psalm 116:15 NKJV). From our heavenly Father's perspective, death just opens the door for Him to enjoy perfect, eternal, delightful fellowship with each of His redeemed children. 'I heard a voice from Heaven say, "Write: Blessed are the dead who die in the Lord from now on." "Yes," says the Spirit, "they will rest from their labour, for their deeds will follow them"' (Revelation 14:13 NIV). The Bible assures every believer that their death is not a tragedy but a triumphal entry into Heaven. The Amplified Bible puts it: 'Blessed (happy, to be envied).' God instructed John, 'Write this.' Why? Because God understands that when we lose a loved one we tend to forget His perspective and adopt an emotion-driven perspective.
Rejoice, believer, '...Whether we live or die, we belong to the Lord' (Romans 14:8 NIV). And the Lord takes good care of what belongs to Him!
Monday, 27 May 2013
'...God will bring back with [Jesus] the believers who have died.' 1 Thessalonians 4:14 NLT
Dealing with death separates us into two categories: the hopeless and the hopeful. The hopeless believe that they have nothing to look forward to. Their losses feel permanent - the end of life and all that's good. But the hopeful have everything to look forward to. Their losses are temporary - the beginning of an endless life filled with God's finest gifts.
God wants you 'to know what will happen to the believers who have died so [you] will not grieve like people who have no hope' (1 Thessalonians 4:13 NLT). Our hope results from knowing these truths: (1) 'We believe that Jesus died and was raised to life again' (1 Thessalonians 4:14 NLT). All hope begins here: believing in Jesus' death for our sin and His resurrection to represent us before God. (2) Since we believe this, we also believe that...Jesus returns. Faith in Christ's physical return to earth gives us confidence that 'God will bring back with Him the believers who have died.' God will raise us from our resting places and bring us back again with Jesus (Romans 8:11). At that moment, 'He will take our weak mortal bodies and change them into glorious bodies like His own...' (Philippians 3:21 NLT).
Never again will you be vulnerable to cancer, diabetes, heart disease, arthritis, strokes, Lou Gehrig's disease, paralysis, disabilities, weariness, weakness, grief, fear, depression, temptation, addictions, failure, remorse, suicidal thoughts, bipolar disorder, OCD or PTSD or any kind of ailment. You'll be transformed into the very likeness of Christ. Isn't that wonderful?
Tuesday, 28 May 2013
'We tell you this directly from the Lord...' 1 Thessalonians 4:15 NLT
What Paul wrote about death, he heard straight from the Lord: 'We tell you this directly from the Lord: We who are still living when the Lord returns will not meet Him ahead of those who have died.' The Lord reserves this high privilege exclusively for those who die in Him; they will be the first to experience the resurrection.
Try to imagine that moment. Arising from their rest like we do after a good night's sleep, now dressed in Christ-like bodies, they awake to the sight of their Lord returning in glory with His angels. They meet Him - the first believers to witness His return, the initial wing of His airborne vanguard to escort Him back to earth.
This is no pipe dream or mere fantasy; Paul got it 'directly from the Lord'. Our source is flawless! He writes: (1) 'Together with them, we who are still alive...will be caught up in the clouds to meet the Lord in the air...' (1 Thessalonians 4:17 NLT). Living believers will rise to join with resurrected brothers, sisters, parents, grandparents, children, grandchildren, spouses, friends, family of God never-met-before, in a spectacular mid-air reunion with Christ. We'll be together, inseparable, eternal, one international, multicultural, love-based, Christ-centred family! (2) '...Then we will be with the Lord forever' (1 Thessalonians 4:17 NLT). No speculating or imagining what He's really like. '...For we will see Him as He really is' (1 John 3:2 NLT). We will see, touch and talk with Jesus as we do each other. And He will respond to us in real time! (3) 'Encourage each other with these words' (1 Thessalonians 4:18 NLT).
Wednesday, 29 May 2013
'...To go and be with Christ, which would be far better...' Philippians 1:23 NLT
No matter how much you enjoy where you are living at present, there's always a longing in your heart for the place you call 'home'. And how much more so for those who have been born again into God's redeemed family! The world has its beautiful shorelines and landscapes, but deep down we yearn, like Paul, for our heavenly Father, heavenly family and home. 'For to me, living means living for Christ, and dying is even better...I'm torn between two desires: I long to go and be with Christ, which would be far better for me' (Philippians 1:21-23 NLT).
Leaving this life to be with Christ, in Paul's judgment, 'is far better'. Far better than what? Anything else! Nothing here can compare with what awaits you there! '...No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love Him...' (1 Corinthians 2:9 NLT). You ask, 'How will this transition happen to us?' At death, 'The dust [our body] returns to the ground it came from, and [our] spirit returns to God who gave it' (Ecclesiastes 12:7 NIV). Our bodies will 'fall asleep in Christ' (1 Corinthians 15:18). Our God-indwelled spirits return to His presence, delighting in 'the fullness of joy' and revelling in the 'pleasures forevermore' that are found in abundance at His right hand (Psalm 16:11).
While we wait, anticipating our best days, Heaven's hosts rehearse for the drama of the ages, the awesome return of Christ as we accompany Him in our glorified bodies! We say, '...Come, Lord Jesus' (Revelation 22:20 NIV).
Thursday Update:
Today was a trip to Palmy day. On the way up I was thinking I could actually drive the road with my eyes closed - not that I am actually ever planning to give it a try, I've done it so often now that I do find I'm on auto pilot. I know I need to make sure I'm careful and stay alert - my Gordon Lightfoot CD helps with that :0)
I found Roy in good spirits but tired as he hadn't had his morning sleep yet and had had quite a busy morning. Roy's blood pressure when he stands is slowly coming up but it still isn't completely right. He still has lots of jerky spasms as well - interestingly most of which he doesn't actually feel.
After lunch Roy decided he really needed a sleep so I went and spoke with the doc. As I suspected she really couldn't tell me a lot. She thought Roy looked much better today than he had yesterday. Bloods have been taken again today and we will have the results of those tomorrow. The doc suspects that the cancer has moved into the adrenal gland and that is why it is no longer doing what it's meant to be doing, she is hoping that the new steroid that has been introduced will help.
How things will go was also a hard question to answer - she suspects Roy will get tireder and sleep more and more.
We had a good talk and I didn't come away with all the answers but that's ok.
When I got back to Roy's room he was asleep and busily dreaming again. It is actually really interesting to observe Roy while he is sleeping. At times he has his eyes open and seems to look at you but not see you. Once he did see me and was a bit concerned that we were stuck in the middle of the road. I assured him this was not the case and he seemed relieved and went back to sleep. When the nurse came in to change the syringe in his pump he slept right through it, and she too was interested in watching him act out whatever it was that he was doing at the time - it looked like he was taking tablets. My concern is that if these dreams become to 'real' that he could hurt himself by pulling out the syringe driver or suddenly starting to sleep walk. I think this is something I might have to talk to the doc about tomorrow and she what she has to say. We are still waiting to see the Radiation Oncologist so no progress there.
Sadly Roy is not coming home until after the weekend as they need to make sure he is stable before he can come home. He is going to see the Physio sometime to talk about walking and tips for stairs.
It was really, really hard saying goodbye today, and because he slept most of the time I was there I felt a bit cheated - just as well I had my book with me.
When I got home the man was here waiting with the bed and other stuff. He installed it all and I must say it fits quite well in the lounge and doesn't look too out of place. Roy will get the morning sun and he has a nice view out the lounge window into the garden. The bed is all made up and ready for when Roy can finally come home. Not that he will need to be in bed all day, but I can see that that time will come.
Well I think that's all for today. I'll try and write more tomorrow.
Hugs and blessings
Jolanda
Today was a trip to Palmy day. On the way up I was thinking I could actually drive the road with my eyes closed - not that I am actually ever planning to give it a try, I've done it so often now that I do find I'm on auto pilot. I know I need to make sure I'm careful and stay alert - my Gordon Lightfoot CD helps with that :0)
I found Roy in good spirits but tired as he hadn't had his morning sleep yet and had had quite a busy morning. Roy's blood pressure when he stands is slowly coming up but it still isn't completely right. He still has lots of jerky spasms as well - interestingly most of which he doesn't actually feel.
After lunch Roy decided he really needed a sleep so I went and spoke with the doc. As I suspected she really couldn't tell me a lot. She thought Roy looked much better today than he had yesterday. Bloods have been taken again today and we will have the results of those tomorrow. The doc suspects that the cancer has moved into the adrenal gland and that is why it is no longer doing what it's meant to be doing, she is hoping that the new steroid that has been introduced will help.
How things will go was also a hard question to answer - she suspects Roy will get tireder and sleep more and more.
We had a good talk and I didn't come away with all the answers but that's ok.
When I got back to Roy's room he was asleep and busily dreaming again. It is actually really interesting to observe Roy while he is sleeping. At times he has his eyes open and seems to look at you but not see you. Once he did see me and was a bit concerned that we were stuck in the middle of the road. I assured him this was not the case and he seemed relieved and went back to sleep. When the nurse came in to change the syringe in his pump he slept right through it, and she too was interested in watching him act out whatever it was that he was doing at the time - it looked like he was taking tablets. My concern is that if these dreams become to 'real' that he could hurt himself by pulling out the syringe driver or suddenly starting to sleep walk. I think this is something I might have to talk to the doc about tomorrow and she what she has to say. We are still waiting to see the Radiation Oncologist so no progress there.
Sadly Roy is not coming home until after the weekend as they need to make sure he is stable before he can come home. He is going to see the Physio sometime to talk about walking and tips for stairs.
It was really, really hard saying goodbye today, and because he slept most of the time I was there I felt a bit cheated - just as well I had my book with me.
When I got home the man was here waiting with the bed and other stuff. He installed it all and I must say it fits quite well in the lounge and doesn't look too out of place. Roy will get the morning sun and he has a nice view out the lounge window into the garden. The bed is all made up and ready for when Roy can finally come home. Not that he will need to be in bed all day, but I can see that that time will come.
Well I think that's all for today. I'll try and write more tomorrow.
Hugs and blessings
Jolanda
Wednesday 29 May 2013
Wednesday Update:
Not really a lot to report as I didn't see Roy at all today as I had an at home day.
I didn't have that great a sleep last night as the reality of what life will eventually be like hit home rather hard at bedtime. And yet as I spend these days alone I know that for now it's isn't real as Roy is just at the end of the phone, so I am really in a surreal situation for the time being - experiencing life alone, but not alone - I guess is a mixed up way that actually makes sense.
I also had a few times today where I felt totally overwhelmed by absolutely everything that's going on and going to need doing and then God in His perfect timing sends me words of comfort and support through an email and a letter from 2 dear friends. Thank you so much for your kind and encouraging words - you touched my heart and brought me to tears - but that's ok, cause that's just the kind of day I've had.
Today with a bit of encouragement from a very special lady I found my assertive bone and set about sorting and arranging some 'stuff'. I am pleased to report that as a result Roy know has a brand new 'state of the art' 4 wheel drive machine (aka stroller) - it comes with a carry bag and tray table and a much more padded seat and is a shiny black colour - very classy indeed.
Also ordered today was a hospital bed, commode, and a base for under Roy's lazy boy chair to make it a bit higher and easier for him to get out of. All going well these things will be delivered before the weekend.
The business 'stuff' has been caught up on, the washing has also been caught up on and has been folded and put away, the house has been vacuumed, and I made a trip to the post office to mail some parcels - all in all a good days effort and it definitely felt good to be busy. I would have loved to also get some sewing done, but that was not to be.
I spoke to Roy twice today and he has had a good day. He reported that he snoozed (his words) for a while this morning and feels a lot more with it. He has a bit more of an appetite, however his blood pressure is still too low, although it has come up from yesterday so that's good news. He is still not allowed to walk around unaided and is being kept under observation.
Daughter Aimee and her family went to see Roy this afternoon and she phoned me tonight to say that he was 100 times better than yesterday when she'd seen him and in her words "normal, like Dad again" - so that was awesome to hear.
So all up it's been a good if somewhat emotional day and it sure was great to see the sunshine again.
Time for a cup of tea I think and a wee chocolate indulgence cause I think I deserve it ;0)
Hugs and blessings
Jolanda
Not really a lot to report as I didn't see Roy at all today as I had an at home day.
I didn't have that great a sleep last night as the reality of what life will eventually be like hit home rather hard at bedtime. And yet as I spend these days alone I know that for now it's isn't real as Roy is just at the end of the phone, so I am really in a surreal situation for the time being - experiencing life alone, but not alone - I guess is a mixed up way that actually makes sense.
I also had a few times today where I felt totally overwhelmed by absolutely everything that's going on and going to need doing and then God in His perfect timing sends me words of comfort and support through an email and a letter from 2 dear friends. Thank you so much for your kind and encouraging words - you touched my heart and brought me to tears - but that's ok, cause that's just the kind of day I've had.
Today with a bit of encouragement from a very special lady I found my assertive bone and set about sorting and arranging some 'stuff'. I am pleased to report that as a result Roy know has a brand new 'state of the art' 4 wheel drive machine (aka stroller) - it comes with a carry bag and tray table and a much more padded seat and is a shiny black colour - very classy indeed.
Also ordered today was a hospital bed, commode, and a base for under Roy's lazy boy chair to make it a bit higher and easier for him to get out of. All going well these things will be delivered before the weekend.
The business 'stuff' has been caught up on, the washing has also been caught up on and has been folded and put away, the house has been vacuumed, and I made a trip to the post office to mail some parcels - all in all a good days effort and it definitely felt good to be busy. I would have loved to also get some sewing done, but that was not to be.
I spoke to Roy twice today and he has had a good day. He reported that he snoozed (his words) for a while this morning and feels a lot more with it. He has a bit more of an appetite, however his blood pressure is still too low, although it has come up from yesterday so that's good news. He is still not allowed to walk around unaided and is being kept under observation.
Daughter Aimee and her family went to see Roy this afternoon and she phoned me tonight to say that he was 100 times better than yesterday when she'd seen him and in her words "normal, like Dad again" - so that was awesome to hear.
So all up it's been a good if somewhat emotional day and it sure was great to see the sunshine again.
Time for a cup of tea I think and a wee chocolate indulgence cause I think I deserve it ;0)
Hugs and blessings
Jolanda
Tuesday 28 May 2013
Tuesday Update:
Looks like I'll be doing a daily update as there are so many people who want to stay up to date with what is happening with Roy.
Firstly I'd like to report that I had an excellent nights sleep :0)
Today was an much more emotional day than I'd expected it to be.
When I arrived at the hospice this morning Roy was looking very perky and with it. We caught up on what had happened yesterday - a blood test had been done and that they were waiting for the results.
The consulting doctor came to see both of us. She first wanted to take Roy's blood pressure both sitting and standing. Sitting it was normal, but when she took it while Roy stood it plummeted - in fact she took it twice and both times it read 70/nil. Straight away she said that Roy was no longer allowed to walk anywhere alone, if he needs to go to the toilet he has to let the nurse know and they'll move him in a wheelchair. The doctor also had the blood test results that showed that although kidney function was still good, they were a bit dry - whatever that means?? The salt levels in the blood were very low, and there were signs that the adrenal gland is not producing whatever it is meant to make - these 2 things are prob contributing to the low blood pressure.
It was decided to take him off the Oxycontin and put him on Methadone instead as his pain relief med. This was to be started tonight and it will take them a bit to get the dosage right. He will also be given another steroid to help with the adrenal gland problem. And the steroid he is already on is being increased in the hope it stimulates his appetite.
The doc also hopes that the change in meds will mean that Roy is more alert and that the spaced outness and muscle spasms will become less. Time will tell.
We also talked about the lump in Roy's neck which has increased in size quite quickly and is a bit of a concern because of the possibility that it will put pressure on the throat and will make both swallowing and breathing more difficult. A consultation will be arranged with the Radiation Oncologist to see what his thoughts are and then we will make a decision.
All in all things are not looking good and for the time being Roy will be staying at the Hospice. Not that he can come home until some changes are made here.
Tomorrow I am having a day at home to get 'stuff' sorted and I thing I will be doing is having a discussion with the Occupational Therapist about getting a hospital bed for Roy and a portable commode, so that when the time comes Roy can actually come home.
On Thursday I plan to talk to the doctor about the future :0( I need to know what I can expect, what they expect will/might happen, and how long they expect Roy has. Not that any of this info will be definitive as there are so many variable involved. But I need to get an idea so that the children are more aware of what is happening with their Dad and can plan their goodbyes.
Things seem to be moving a lot faster now and I'm not sure that Roy has many more weeks left. Having said that if they get his meds all sorted he could rally and 'chug' along for many more weeks. At the end of the day the Lord will not call Roy home any earlier than He needs him and we will continue to enjoy each day we have left of our life together here on this earth. One day at a time ;0)
Thanks for your continued prayers and support. May the Lord bless each and every one of you.
Hugs
Jolanda
Looks like I'll be doing a daily update as there are so many people who want to stay up to date with what is happening with Roy.
Firstly I'd like to report that I had an excellent nights sleep :0)
Today was an much more emotional day than I'd expected it to be.
When I arrived at the hospice this morning Roy was looking very perky and with it. We caught up on what had happened yesterday - a blood test had been done and that they were waiting for the results.
The consulting doctor came to see both of us. She first wanted to take Roy's blood pressure both sitting and standing. Sitting it was normal, but when she took it while Roy stood it plummeted - in fact she took it twice and both times it read 70/nil. Straight away she said that Roy was no longer allowed to walk anywhere alone, if he needs to go to the toilet he has to let the nurse know and they'll move him in a wheelchair. The doctor also had the blood test results that showed that although kidney function was still good, they were a bit dry - whatever that means?? The salt levels in the blood were very low, and there were signs that the adrenal gland is not producing whatever it is meant to make - these 2 things are prob contributing to the low blood pressure.
It was decided to take him off the Oxycontin and put him on Methadone instead as his pain relief med. This was to be started tonight and it will take them a bit to get the dosage right. He will also be given another steroid to help with the adrenal gland problem. And the steroid he is already on is being increased in the hope it stimulates his appetite.
The doc also hopes that the change in meds will mean that Roy is more alert and that the spaced outness and muscle spasms will become less. Time will tell.
We also talked about the lump in Roy's neck which has increased in size quite quickly and is a bit of a concern because of the possibility that it will put pressure on the throat and will make both swallowing and breathing more difficult. A consultation will be arranged with the Radiation Oncologist to see what his thoughts are and then we will make a decision.
All in all things are not looking good and for the time being Roy will be staying at the Hospice. Not that he can come home until some changes are made here.
Tomorrow I am having a day at home to get 'stuff' sorted and I thing I will be doing is having a discussion with the Occupational Therapist about getting a hospital bed for Roy and a portable commode, so that when the time comes Roy can actually come home.
On Thursday I plan to talk to the doctor about the future :0( I need to know what I can expect, what they expect will/might happen, and how long they expect Roy has. Not that any of this info will be definitive as there are so many variable involved. But I need to get an idea so that the children are more aware of what is happening with their Dad and can plan their goodbyes.
Things seem to be moving a lot faster now and I'm not sure that Roy has many more weeks left. Having said that if they get his meds all sorted he could rally and 'chug' along for many more weeks. At the end of the day the Lord will not call Roy home any earlier than He needs him and we will continue to enjoy each day we have left of our life together here on this earth. One day at a time ;0)
Thanks for your continued prayers and support. May the Lord bless each and every one of you.
Hugs
Jolanda
Monday 27 May 2013
Monday Update:
Things can change so quickly in such a short time :0(
Roy is once again in the hospice. He slept reasonably well last night with a lot less twitching, but still a lot of dreaming. This morning he did everything he needed to do upstairs and together we tackled the stairs. This didn't go as we had hoped and for safety sake he ended up going down the stairs on his bottom. He might be frail and thin but he is still to heavy for me.
He decided to ring the hospice nurse to tell her what had happened over the weekend and it was decided to get him in to see the hospice doc and have another assessment done - so off up to Palmy we went.
Roy has a definite weakness in his right leg due we think to the tumour pressing on his sciatic nerve, this also tends to makes him lean a bit to the right when he walks. The plan is to tweek his meds and see what they can do about the pain he is having in his right leg, so for the time being he will stay at the hospice.
I am thinking that in order for Roy to be able to come home some changes are going to have to be made to accommodate his new needs and we will be talking over some ideas tomorrow. I'll let you know later in the week what we decide.
I am doing ok and now feel very much at peace after an initial wee melt down when I got home that brought my darling Mum and Dad running to my aid (bless them). I hope to have a good nights sleep tonight and pray that Roy does too.
Blessings and hugs
Jolanda
Things can change so quickly in such a short time :0(
Roy is once again in the hospice. He slept reasonably well last night with a lot less twitching, but still a lot of dreaming. This morning he did everything he needed to do upstairs and together we tackled the stairs. This didn't go as we had hoped and for safety sake he ended up going down the stairs on his bottom. He might be frail and thin but he is still to heavy for me.
He decided to ring the hospice nurse to tell her what had happened over the weekend and it was decided to get him in to see the hospice doc and have another assessment done - so off up to Palmy we went.
Roy has a definite weakness in his right leg due we think to the tumour pressing on his sciatic nerve, this also tends to makes him lean a bit to the right when he walks. The plan is to tweek his meds and see what they can do about the pain he is having in his right leg, so for the time being he will stay at the hospice.
I am thinking that in order for Roy to be able to come home some changes are going to have to be made to accommodate his new needs and we will be talking over some ideas tomorrow. I'll let you know later in the week what we decide.
I am doing ok and now feel very much at peace after an initial wee melt down when I got home that brought my darling Mum and Dad running to my aid (bless them). I hope to have a good nights sleep tonight and pray that Roy does too.
Blessings and hugs
Jolanda
Sunday 26 May 2013
It's Sunday evening again so time to write a new blog.
We had an awesome if somewhat tiring time with our beautiful grand-daughter. She does early mornings and is pretty much on the go all day. Jack the dog was her best friend next to her baby cousin Noah. As nice as it was to have Inge here it is was also nice to be just the 2 of us again. It's amazing how big the lounge suddenly looks when there are no toys strewn around it ;0)
Roy has had an interesting week. He sleeps a lot more these day, but he is not really getting the refreshing restful sleep that he needs. When he sleeps he has dreams/hallucinations and lots of spasms. These hallucinations are very real and he is very active in them, with lots of hand gestures and talking. Sometimes he says things that are just a continuation of the 'dream' and when I look at him blankly he realises that it isn't real and he isn't making sense. This does lead to less than restful nights for me too. The line between dreamworld and reality has become very bleary at times and has left me sometime wondering if the things he tells me are real or not.
When the hospice nurse came this week she said this was all due to the morphine that he is on so it was decided to take him off the morphine and put him onto another pain med which is not supposed to have these kinds of side effects. The new meds were started yesterday and I must say the spasms seem less and he is definitely more awake than he was last night. The hallucinations still seem to be happening, but even they seem to be less - time will tell and I suppose it takes a while for the morphine to leave his system.
Another 'setback' is that Roy has been finding the stairs a lot more difficult the last few days. This is a BIG worry and a potential problem, esp as tonight he actually tripped on them. Thank goodness he didn't hurt himself. We are expecting a visit from the Occupational Therapist this week so they can access what Roy's needs are, but the need to sell the house has now become very real. And yet should the house sell it'll still take time to finalise and so we really need to address the situation we now find ourselves in and sort out solutions that'll work.
At times I really struggle to understand what the Lord's will is - in my 'humble' thinking if the house is not meant to sell than Roy should be ok and able to cope with living here, but that doesn't seem to be the case anymore and yet the house doesn't seem to be selling and Roy is going down hill - in my not understanding/disbelief I cry out to God - HELP, WHY and WHAT ARE WE MEANT TO DO NOW?????????????? I know that all things will work out to His glory and that He is in control and has a plan - I just sometimes wish He'd let me in on the plan so I know what to expect and where to go from here!!!! As human beings we want to be in control, rather than leaving it to God and trusting in Him. The Bible says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34 And it's so true because when we get to tomorrow things have or are worked out.
Roy is now eating less and less, with food generally being unappealing and most things not tasting very good anymore. Breakfast is still the best meal for him, lunch is so so and dinner is the most unappealing. I suggested he have breakfast for every meal - he's always liked all day breakfasts ;0)
As a result of Roy eating less I am also eating less - every cloud has a silver lining (but yes I am looking after myself) and I am loosing weight, prob the extra running around I'm doing now is helping too - I have plenty to spare so that's ok. I went to the doc this week to get some scripts and while there I had my blood pressure checked - I kinda expected it to be high, all things considering - but it was normal. Praise the Lord.
This week looks like it will be a bit more quiet, although we've had a few people ask if it's ok to pop in to visit, which it is. Tomorrow Roy needs to go for a blood test so they can see what his bloods are up to. I might even manage to get some sewing done which would be nice as I do have some orders to fill.
Well I think that's it for this weeks update. I've just helped Roy upstairs as he's off to bed and so will I be soon. I think I might just read for a while as I've got a good book at the moment - Simple Genius by David Baldacci.
Please pray that Roy has peaceful nights sleep this week and that he feels more rested and refreshed.
Have a great week.
Love and blessings
Jolanda
We had an awesome if somewhat tiring time with our beautiful grand-daughter. She does early mornings and is pretty much on the go all day. Jack the dog was her best friend next to her baby cousin Noah. As nice as it was to have Inge here it is was also nice to be just the 2 of us again. It's amazing how big the lounge suddenly looks when there are no toys strewn around it ;0)
Roy has had an interesting week. He sleeps a lot more these day, but he is not really getting the refreshing restful sleep that he needs. When he sleeps he has dreams/hallucinations and lots of spasms. These hallucinations are very real and he is very active in them, with lots of hand gestures and talking. Sometimes he says things that are just a continuation of the 'dream' and when I look at him blankly he realises that it isn't real and he isn't making sense. This does lead to less than restful nights for me too. The line between dreamworld and reality has become very bleary at times and has left me sometime wondering if the things he tells me are real or not.
When the hospice nurse came this week she said this was all due to the morphine that he is on so it was decided to take him off the morphine and put him onto another pain med which is not supposed to have these kinds of side effects. The new meds were started yesterday and I must say the spasms seem less and he is definitely more awake than he was last night. The hallucinations still seem to be happening, but even they seem to be less - time will tell and I suppose it takes a while for the morphine to leave his system.
Another 'setback' is that Roy has been finding the stairs a lot more difficult the last few days. This is a BIG worry and a potential problem, esp as tonight he actually tripped on them. Thank goodness he didn't hurt himself. We are expecting a visit from the Occupational Therapist this week so they can access what Roy's needs are, but the need to sell the house has now become very real. And yet should the house sell it'll still take time to finalise and so we really need to address the situation we now find ourselves in and sort out solutions that'll work.
At times I really struggle to understand what the Lord's will is - in my 'humble' thinking if the house is not meant to sell than Roy should be ok and able to cope with living here, but that doesn't seem to be the case anymore and yet the house doesn't seem to be selling and Roy is going down hill - in my not understanding/disbelief I cry out to God - HELP, WHY and WHAT ARE WE MEANT TO DO NOW?????????????? I know that all things will work out to His glory and that He is in control and has a plan - I just sometimes wish He'd let me in on the plan so I know what to expect and where to go from here!!!! As human beings we want to be in control, rather than leaving it to God and trusting in Him. The Bible says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34 And it's so true because when we get to tomorrow things have or are worked out.
Roy is now eating less and less, with food generally being unappealing and most things not tasting very good anymore. Breakfast is still the best meal for him, lunch is so so and dinner is the most unappealing. I suggested he have breakfast for every meal - he's always liked all day breakfasts ;0)
As a result of Roy eating less I am also eating less - every cloud has a silver lining (but yes I am looking after myself) and I am loosing weight, prob the extra running around I'm doing now is helping too - I have plenty to spare so that's ok. I went to the doc this week to get some scripts and while there I had my blood pressure checked - I kinda expected it to be high, all things considering - but it was normal. Praise the Lord.
This week looks like it will be a bit more quiet, although we've had a few people ask if it's ok to pop in to visit, which it is. Tomorrow Roy needs to go for a blood test so they can see what his bloods are up to. I might even manage to get some sewing done which would be nice as I do have some orders to fill.
Well I think that's it for this weeks update. I've just helped Roy upstairs as he's off to bed and so will I be soon. I think I might just read for a while as I've got a good book at the moment - Simple Genius by David Baldacci.
Please pray that Roy has peaceful nights sleep this week and that he feels more rested and refreshed.
Have a great week.
Love and blessings
Jolanda
Friday 24 May 2013
This past week we had our grand-daughter Inge come to stay for 4 days. Here are some photos.
We had an awesome time with her. She is a treasure and we love her to the moon and back.
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| Inge and Opa enjoying their morning cuppa. |
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| Checking I look ok!! |
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| Yip I'll do :0) |
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| Hanging out with cousin Noah |
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| Cousins sharing secrets |
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| I'll help turn the page |
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| Story time with Opa |
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| A happy wee girl with her baby - named Noah of course :0) |
We had an awesome time with her. She is a treasure and we love her to the moon and back.
Sunday 19 May 2013
Earlier this week I wrote about being ready and I got an awesome response from a friend of ours who is going through a similar journey as us.
He wrote:
"I hope that you are NOT ready. As we have said this is an ugly road that you and I have to travel, even as many others have travelled it before us. In Shadowlands CS Lewis is quoted as saying the joy now is worth the pain then, as he was talking to his wife. He knew the path ahead and was willing to pay the pain of sorrow and bereavement for the joy of his time with his wife.
We are both married to very special people. I think they deserve our unflinching devotion just when they need it the most (I doubt I am telling you anything new!!!!). But this has been my hardest struggle. To not act for myself. To not be ready. To not start preparing myself to be alone. That way (for me) leads to distancing yourself from the one who needs and deserves your complete emotional dedication. It's harder for us because we can't avoid the pain, they don't deserve us acting in self interest."
And he is so right. Our loved ones who are suffering deserve our unflinching love, support, care and attention. Yet it is such a fine line because slowly but surely you are being prepared for when you'll be alone. Slowly over time you take on more and more responsibilities that once where not yours to worry about. And as Roy draws ever closer to being with the Lord, I can't help but try to mentally prepare for life without him as much as I hate that notion, and yet, the reality is that I still wont be ready when the time actually comes.
Which got me to thinking about the 'other side' of the the coin - our loved ones are also probably unknowingly preparing us for life alone too. As the disease progresses and the drug load gets heavier they are no longer able to provide so many of the things they once did. I'm not talking about the everyday helping a round the house things but the intimacy that couples share with each other on a physical, mental, emotional and spiritual level. These things slowly slip away. Connections are broken and the relationship changes even if the underlying love doesn't.
To see Roy suffering, loosing weight, dry retching, being exhausted beyond belief and unable to walk unaided breaks my heart and yet I savor the time we have left however long or short that might be and I will continue to give him all the care, love and support that I can for as long as I am able.
Quick update on this past week:
This past week Roy has slept a lot more - some of that was getting over the busy weekend we had last weekend and some of it is the tiredness caused by the cancer. When he sleeps it isn't really a restfully sleep as he twitches a lot and has very vivid dreams that to him seem very real and are caused by the meds he is now on. Roy has no pain which is a huge blessing, although having said that he did complain today about his sciatic nerve playing up so that might be something to watch and discuss with the hospice nurse when she comes on Tuesday.
Yesterday Ryan and our grand-daughter Inge came down and the four of us went out in the afternoon to watch Joel play soccer which was a lovely outing and the first for Roy this week. Today we went to Church which Roy actually found incredibly exhausting. Richard, Aimee and Noah come for a visit after the service which was really nice. It's been another busy but enjoyable weekend.
Inge is staying with us for the next 4 days so I really should head to bed as I expect her to be up between 6 and 7 tomorrow morning. :0(
Thanks for taking the time to read my blog and for all the encouragement and support we continue to receive.
Till next time
Love and blessings
Jolanda
P:S I have some photo's of the reunion weekend which I'll try and post this week ;0)
Tuesday 14 May 2013
Families are just great. Last weekend we had an awesome family get together in celebration of my Dad and Mum's 50th Wedding Anniversary. It was great to see cousins get reacquainted, and to see the interaction between the different generations.
Lots of games were played over the weekend. Shulbok was a huge hit, and so was the ten-pin bowling. We saw slides from the 'good old days', did lots of talking, laughing, good eating and heaps of photos were taken - only not by me even though we did have the camera with us. I'll share some when I get some to share :0)
Roy did very well over the weekend - he didn't throw up once while we were away. He slept well and he was pretty mobile as he now has a walker. The hospice nurse came and dropped a walker off just before we went away and Roy now wonders how he did without it. Walking is becoming much harder because of the pain in his hips and lower back. It is also handy to have a seat with him to sit on when he feels he can't walk any further.
Roy was very tired when we finally got home on Sunday afternoon, and has pretty much slept since then. Even as I type he is asleep again in his chair. He reckons he needs to sleep just so he has the energy to do those mundane things he needs to do like shower and go to the toilet. :0(
On Friday the hospice nurse thought Roy might need another blood transfusion and seeing the way he is I'm thinking she's right. We need to get a blood test done to see what the bloods are up to. There is talking of having these done regularly.
Although he didn't throw up over the weekend it hasn't gone away and he has still been having bouts since we got home.
My sister in law (who lost her husband - Roy's oldest brother - last year) asked me recently if I was ready.
Wow that is a HUGE question.
Am I ready to see the end of Roy's suffering, as this terrible, terrible disease saps the life out of him and eats him away inside - yes.
Am I ready to loose the man I love and planned to grow old with - no.
Am I ready for the loneliness - no.
Am I ready to face the future alone - no.
And yet I know I will survive, God has plans for my life, and I can trust and take comfort in the fact that He will give me all I need to face the future.
I also take comfort in the knowledge that Roy will be going 'home' when the time comes, that his suffering will be over and he will be joining the throng praising our Father in Heaven. What better place to be.
Below is Roy's favourite hymn, written by Willian Kuipers in 1932 and based on Revelation 4:6. It is a beautiful glimpse of heaven.
Well that's it for tonight I think. Thanks again for all your prayers, love, support and gifts.
Love and blessings
Jolanda
PS: Had another open home on Sunday and one couple who came through came for a second look on Monday. They seem very interested so coveting your prayers :0) (editied: did read cross your fingers)
Lots of games were played over the weekend. Shulbok was a huge hit, and so was the ten-pin bowling. We saw slides from the 'good old days', did lots of talking, laughing, good eating and heaps of photos were taken - only not by me even though we did have the camera with us. I'll share some when I get some to share :0)
Roy did very well over the weekend - he didn't throw up once while we were away. He slept well and he was pretty mobile as he now has a walker. The hospice nurse came and dropped a walker off just before we went away and Roy now wonders how he did without it. Walking is becoming much harder because of the pain in his hips and lower back. It is also handy to have a seat with him to sit on when he feels he can't walk any further.
Roy was very tired when we finally got home on Sunday afternoon, and has pretty much slept since then. Even as I type he is asleep again in his chair. He reckons he needs to sleep just so he has the energy to do those mundane things he needs to do like shower and go to the toilet. :0(
On Friday the hospice nurse thought Roy might need another blood transfusion and seeing the way he is I'm thinking she's right. We need to get a blood test done to see what the bloods are up to. There is talking of having these done regularly.
Although he didn't throw up over the weekend it hasn't gone away and he has still been having bouts since we got home.
My sister in law (who lost her husband - Roy's oldest brother - last year) asked me recently if I was ready.
Wow that is a HUGE question.
Am I ready to see the end of Roy's suffering, as this terrible, terrible disease saps the life out of him and eats him away inside - yes.
Am I ready to loose the man I love and planned to grow old with - no.
Am I ready for the loneliness - no.
Am I ready to face the future alone - no.
And yet I know I will survive, God has plans for my life, and I can trust and take comfort in the fact that He will give me all I need to face the future.
I also take comfort in the knowledge that Roy will be going 'home' when the time comes, that his suffering will be over and he will be joining the throng praising our Father in Heaven. What better place to be.
Below is Roy's favourite hymn, written by Willian Kuipers in 1932 and based on Revelation 4:6. It is a beautiful glimpse of heaven.
By the sea of crystal, saints in glory stand,
Myriads in number, drawn from every land,
Robed in white apparel, washed in Jesus’ blood,
They now reign in heaven with the Lamb of God.
Myriads in number, drawn from every land,
Robed in white apparel, washed in Jesus’ blood,
They now reign in heaven with the Lamb of God.
Out of tribulation, death and Satan’s hand,
They have been translated at the Lord’s command.
In their hands they’re holding palms of victory;
Hark! the jubilant chorus shouts triumphantly:
They have been translated at the Lord’s command.
In their hands they’re holding palms of victory;
Hark! the jubilant chorus shouts triumphantly:
“Unto God Almighty, sitting on the throne,
And the Lamb, victorious, be the praise alone,
God has wrought salvation, He did wondrous things,
Who shall not extol Thee, holy King of Kings?”
And the Lamb, victorious, be the praise alone,
God has wrought salvation, He did wondrous things,
Who shall not extol Thee, holy King of Kings?”
Well that's it for tonight I think. Thanks again for all your prayers, love, support and gifts.
Love and blessings
Jolanda
PS: Had another open home on Sunday and one couple who came through came for a second look on Monday. They seem very interested so coveting your prayers :0) (editied: did read cross your fingers)
Sunday 5 May 2013
This past week has been amazingly busy and enjoyable. We have the most amazing and loving wee grand-daughter (I'm a bit biased) and we really enjoyed having her come to visit with her Papa.
She had a great time esp with Jack our dog - and he was so amazingly good with her.
She had story time with Opa and cuddles with her cousin Noah, and loved wearing Oma's glasses when we were out in the car.
She had a great time esp with Jack our dog - and he was so amazingly good with her.
What a blessing grand-children are.
Roy came home from the hospice on Tuesday. I had to adjust to him being away and then to him being home again. While he was there they found that he has internal bleeding so they have removed some meds and added some new ones. He is still very tired and nods off easily because of the medication, but his pain is under control. The district nurse comes everyday to replace the anti nausea syringe and we have good contact from the Hospice nurse. The vomiting is still not under control and I'm not sure they will ever figure it out. All in all life is ok, we take one day at a time.
Last Sunday we worshiped at the Baptist Church in Palmerston North and had an interesting message about how we are pilgrims in this life rather than tourists - although the pastor used Jesus life as an example in my book he didn't take it far enough, shame he didn't add the important bit - that Jesus pilgrimage lead to His death on the cross so that our pilgrimage can lead to eternal life if we accept Him as Lord of our life - that is the Gospel :0)
This week we also celebrated 2 birthdays - son Joel's and my Dad's - both on the same day and 55 years apart. We could also finally let my parents in on a little secret that we had been keeping from them - that my Dad's sister is here from Holland to celebrate Mum and Dad's 50th wedding anniversary, which we will be doing next weekend with a family reunion. Looking forward to seeing her on Tuesday and the rest of the family on Friday. It should be an awesome weekend.
Till next time.
Love and blessings
Jolanda
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