Well here I am again, Jon has just had his third cycle of chemo with one more to go. The side effects have hit him hard, each time gets a little bit harder due to the cumulative effects of chemotherapy. He is sleeping his way through it and that is the best and only thing to do during this period. But, it gives me more time to think....this can be a good thing and a bad thing. I'm glad that he is getting his rest and building up his strength again. My thoughts can stray into the negatives of all of this, I feel a little lonely at these times though I have got a little more used to it now. These times bring me back to a sense of what we are both dealing with, Jon battling the cancer and me battling feelings of loneliness and frustration.
I also take time to remember better times, look at photos and yes, smile!! This man has brought so much into my life, so much happiness and contentment, and also the deep love we have for each other, that truly makes me smile.
I have over the past few weeks felt a great sense of anger (that has now passed thankfully) I was feeling angry at everyone and everything! But my counsellor has been a godsend helping me to direct my thoughts into WHY I felt like this.
After some deep thought and talking to her, I realised my anger was really with myself. I can't "fix" Jon, no matter how I try I just can't..... and I know this is what I have been trying to do, also trying to protect him from anything and everything. I cannot protect him from life and what it brings, all I can do is the best I can within my limits to care for him and just be there. It is more important to try as best I can, to carry on life with a new kind of "normal".
It's time for me to look at our life with a fresh set of eyes, which finally I have been able to do, and with that a kind of calmness has now descended on me. This will be so much more productive than the sheer anger that had recently prevailed.
I'm not saying it will always be this way, I'm sure I'll still have my angry periods along with the sadness and not forgetting the laughs and smiles! But now I know why I feel this way and can deal with it.
During the next week Jon will get his scan appointment and we shall have the results on the day of his last chemo. This will bring back the turmoil into our lives, waiting to see if all this chemo has been worthwhile. I cannot tell you how much this "waiting" gets under my skin, I have to be very firm with myself not to get into a negative state of mind. So! I will do my best to stay level headed and be positive, and try to cast out the small negative thoughts that can, if you let them grow into something much larger. Again, it is the fear of the unknown and the uncertainty every step of the way that can get to you.
So, for now, this life rolls on and does it in which ever way it wants to, it may be a roller coaster but it's one I am learning to ride and some of the time, be in control.
I hang on to some words I found on the internet when things get a little hard.....
Courage is not the absence of fear,
but rather, the judgement that something else is more important than fear.
These words bring back my fighting spirit and I get right back in there helping my wonderful Jon to fight on.
Friday, 23 August 2013
Saturday, 10 August 2013
11. Time Waits For No Man
I am finding as time goes on, that my feelings are changing more often...the roller coaster is running away from me and the dips are getting deeper.
Each step along this journey is getting harder to deal with, sometimes I find myself very upbeat and looking forward with positivity. Other times everything looks bleak, my Jon is being taken from me and there is nothing I can do about it.
Anger is becoming more and more prominent in my everyday life, though I do try hard to keep it under control. I'm angry that life goes on for others, planning what they are going to do next week, next year....and knowing we cannot. In a way it's jealousy, I too used to be like that....and now that has been taken away from us. No one knows how we feel day to day, except if you are going through or have been through something similar. Trying to keep the "happy face" charade up, gets harder, trying not to be a "bore" to people about what is happening to us. It's our life, such as it is, but it's a bloody hard life!!
Time waits for no man----a saying I have never paid much attention to in the past, but I do now. We are told to live each day as if it's our last, but that is easy to say and not easy to do.
Jon is still walking the dogs as much as he can, but I can see it's getting harder as time passes... it's heart breaking to see this strong, independent, stubborn, loving man losing ground as time goes on. The worst thing is, I can't do a dam thing about it!! THAT really makes me so angry!!!
We are trying to make memories as we go along, but who are the "memories" for? Me! when I'm here alone without my Jon. I DO NOT want bloody memories, I want Jon!!
I know it must seem to those that read this blog, that I am on a self pitying road right now, but I'm not, I'm sad, I'm angry and I have to allow those feelings to surface occasionally or I will explode.
I try not to let negative feelings overwhelm me too often, but I would be lying if I told you they never occur. Anyone facing life with cancer, from which ever side you view it, has these feelings. Most of the time you can bury them and ignore them, but now and then they have to be faced.
My mind is starting to wander to the next scan, which will be in three or four weeks or so. The wondering will start again, has it worked this time? How well has it worked? What if it hasn't worked? What next? Is there a "what next"?
Only time will tell, and-----Time waits for no man...........
Thursday, 1 August 2013
10. Life Crumbles During Chemotherapy
Cycle two of the four cycles of chemo has just started, the first cycle wasn't great, side effects kicked in on the third day after Jon had it.
Second cycle side effects are now starting to kick in....not good! Jon is very flushed, very tired and his breathing is being affected.
His beloved hospice day center day (today) was cut short because he was so unwell, he has been to bed for most of the time since he got home. Best place for him while he feels like this, but, it's sooo frustrating for him and makes me feel so powerless.
During chemo cycles, life goes on auto pilot, you cannot plan anything as you never know when and what side effects will kick in.
I find the most painful thing for myself is, I have to watch from the sidelines as Jon goes through this, helping in practical ways and supporting the tide of erratic emotions that come and go. My own emotions go up and down also and I try to keep myself in check while Jon is dealing with the hard part of chemo, most of the time it works, sometimes it doesn't.
Chemotherapy can be a lifeline and give more precious time, but, it also brings you back to the reality of what is happening in our lives. Brings questions to the table, such as "is it working?" so many "what ifs" and the biggie "how much time will it gain for us".
I am totally amazed at how much support that our family and friends are giving and continuing to give on a daily basis. We both have so many "virtual" friends online as well, these are people we have not physically met, but have been such a support to us. Without that support this would be a hell of a lot harder to deal with...the feeling of isolation doesn't come over you quite as quickly as it would without them. That feeling still comes, feelings of isolation, despair and bleakness.
But, there is also the laughter that is brought by family and friends :) life goes on and you have to go with it. You can't be down all of the time or you would go insane, so to all those who are constantly there for us, I thank you.
Life does crumble during chemotherapy, but you pick yourself up and build it back up again as best you can, and carry on. I am grateful we still have a life together, it could have been a very different story, so for the time being we have a life, and we are dam well going to make the most of it!
So, we are half way through Jon's chemo now, one more cycle and he will have a scan to see if it has done the job. Hoping and praying for a good result, especially after all he is going through right now. A good result will mean (god willing) that Jon and myself will get a few more months together and be able to make some more good memories. That is the very best we can hope for and that is what we are aiming for.
Through all of this my darling Jon carries on and tries hard not to let it get him down too much. His strength of character is a sight to see, the stubborness of this man is holding him in good stead, he wont give in easily. I am so proud of him and the way he is dealing with this monster, though on occasions I could slap him when he wont rest lol
My Jon, my hero :)
Second cycle side effects are now starting to kick in....not good! Jon is very flushed, very tired and his breathing is being affected.
His beloved hospice day center day (today) was cut short because he was so unwell, he has been to bed for most of the time since he got home. Best place for him while he feels like this, but, it's sooo frustrating for him and makes me feel so powerless.
During chemo cycles, life goes on auto pilot, you cannot plan anything as you never know when and what side effects will kick in.
I find the most painful thing for myself is, I have to watch from the sidelines as Jon goes through this, helping in practical ways and supporting the tide of erratic emotions that come and go. My own emotions go up and down also and I try to keep myself in check while Jon is dealing with the hard part of chemo, most of the time it works, sometimes it doesn't.
Chemotherapy can be a lifeline and give more precious time, but, it also brings you back to the reality of what is happening in our lives. Brings questions to the table, such as "is it working?" so many "what ifs" and the biggie "how much time will it gain for us".
I am totally amazed at how much support that our family and friends are giving and continuing to give on a daily basis. We both have so many "virtual" friends online as well, these are people we have not physically met, but have been such a support to us. Without that support this would be a hell of a lot harder to deal with...the feeling of isolation doesn't come over you quite as quickly as it would without them. That feeling still comes, feelings of isolation, despair and bleakness.
But, there is also the laughter that is brought by family and friends :) life goes on and you have to go with it. You can't be down all of the time or you would go insane, so to all those who are constantly there for us, I thank you.
Life does crumble during chemotherapy, but you pick yourself up and build it back up again as best you can, and carry on. I am grateful we still have a life together, it could have been a very different story, so for the time being we have a life, and we are dam well going to make the most of it!
So, we are half way through Jon's chemo now, one more cycle and he will have a scan to see if it has done the job. Hoping and praying for a good result, especially after all he is going through right now. A good result will mean (god willing) that Jon and myself will get a few more months together and be able to make some more good memories. That is the very best we can hope for and that is what we are aiming for.
Through all of this my darling Jon carries on and tries hard not to let it get him down too much. His strength of character is a sight to see, the stubborness of this man is holding him in good stead, he wont give in easily. I am so proud of him and the way he is dealing with this monster, though on occasions I could slap him when he wont rest lol
My Jon, my hero :)
Saturday, 20 July 2013
9. Thoughts from my mind
Sitting here with a cup of tea, mulling over what has gone on with Jon and me...
Ten blissful months ago we were totally unaware as to what was to lie before us in fact we had just returned from a camping holiday in France. I knew something was wrong because Jon had become ill on our last day there, but never did I dream it would be the start of a long fight with cancer.
Ten years ago, I married my soulmate in a simple ceremony with some of our family and friends there. A day that will stay etched in my memory forever, a day when all of my dreams came true. As I say, it was a simple wedding just the local Town Hall and a social club occasion later, but for me it was a fairy tale, I was marrying the man I loved and adored. Life couldn't be better!
We settled into married life easily and loved each minute spent together, first in a flat and then into our first house together. A little house that now has big memories of our life, and will have more memories of love and laughter, but also of our struggle together with cancer. But, it's a house/home that knows the depth of our love, the lengths we will go to for each other. If walls could speak they would tell you of all the good times, the laughs and outright silliness of our life together. We have had our ups and downs as everyone does, but compared to the good times the not so good are insignificant.
In our time together, we have become proud grandparents of our adorable grandchildren, Olivia and Isaac, I cannot tell you how much they enrich our life. If you feel a little down when the little ones come for a visit, by the time they have gone your spirits have lifted. Olivia is a little dancing queen and loves to show you her dance moves from dance class. And Isaac? Oh Isaac, he is laughter on legs with the speed of a hurricane...you can always be sure of a chuckle when he is in the room.
My children, I have four of my own and Jon has two, we adore them all equally and are so proud of each individual and what they have achieved in life so far. I am also a proud mother in law to Louise and Sarah (almost) and maybe in the future Lauren.
I have three sons, Karl, Steven and David and one daughter, Donna-Marie, they have all been very supportive to us in many ways....always a shoulder there for me.
I can't imagine going through all of this without my family there in the back ground, ready to catch us when we fall. They are my safety net, I'm sure they don't know how much I/we need them at this time, all six of them.
In the stillness of a quiet room, my mind wanders back through the time since we married. Pictures of happy times, fun times and also realising that we have it all as regards what it means to have absolute love. It makes me happy to look around at photos ( and believe me there are many!) and remember when they were taken and what we were doing at that time.
You take life for granted when you're young or at a stage in your life when all is well and going wonderfully...then as we did, you get a wake up call!! I am guilty of not living each day to it's utmost, until now, now little things that used to upset me don't matter any more. Time runs through your fingers like sand, and before you know it, it's running out...if you take nothing more from this blog, please don't waste time, it's so precious. Do things that make you happy, if something is wrong change it! Love the people you hold dear because when time runs out, there is no second chance.
Overall in my life I have been blessed, lucky enough to have had my four darling children who mean the world to me, I love them dearly. I also have been lucky to come to know Jon's two children, Sarah and Jason. I know Sarah a little more than Jason as he lives in the Isle of Man. Sarah is a delight, so full of smiles and laughter..she reminds me so much of her dad. She too is there if I need her, but she is there for her dad seeing him every week for their Sunday afternoons together. This makes him so happy and I'm pleased that they are able to spend this important time together.
Family means everything, do not take it for granted my friends....you will never know when you may need to call on them for help and support.
If nothing more, cancer has made me take a second look at my life and learn that some things are so petty, it really doesn't matter.
Ten blissful months ago we were totally unaware as to what was to lie before us in fact we had just returned from a camping holiday in France. I knew something was wrong because Jon had become ill on our last day there, but never did I dream it would be the start of a long fight with cancer.
Ten years ago, I married my soulmate in a simple ceremony with some of our family and friends there. A day that will stay etched in my memory forever, a day when all of my dreams came true. As I say, it was a simple wedding just the local Town Hall and a social club occasion later, but for me it was a fairy tale, I was marrying the man I loved and adored. Life couldn't be better!
We settled into married life easily and loved each minute spent together, first in a flat and then into our first house together. A little house that now has big memories of our life, and will have more memories of love and laughter, but also of our struggle together with cancer. But, it's a house/home that knows the depth of our love, the lengths we will go to for each other. If walls could speak they would tell you of all the good times, the laughs and outright silliness of our life together. We have had our ups and downs as everyone does, but compared to the good times the not so good are insignificant.
In our time together, we have become proud grandparents of our adorable grandchildren, Olivia and Isaac, I cannot tell you how much they enrich our life. If you feel a little down when the little ones come for a visit, by the time they have gone your spirits have lifted. Olivia is a little dancing queen and loves to show you her dance moves from dance class. And Isaac? Oh Isaac, he is laughter on legs with the speed of a hurricane...you can always be sure of a chuckle when he is in the room.
My children, I have four of my own and Jon has two, we adore them all equally and are so proud of each individual and what they have achieved in life so far. I am also a proud mother in law to Louise and Sarah (almost) and maybe in the future Lauren.
I have three sons, Karl, Steven and David and one daughter, Donna-Marie, they have all been very supportive to us in many ways....always a shoulder there for me.
I can't imagine going through all of this without my family there in the back ground, ready to catch us when we fall. They are my safety net, I'm sure they don't know how much I/we need them at this time, all six of them.
In the stillness of a quiet room, my mind wanders back through the time since we married. Pictures of happy times, fun times and also realising that we have it all as regards what it means to have absolute love. It makes me happy to look around at photos ( and believe me there are many!) and remember when they were taken and what we were doing at that time.
You take life for granted when you're young or at a stage in your life when all is well and going wonderfully...then as we did, you get a wake up call!! I am guilty of not living each day to it's utmost, until now, now little things that used to upset me don't matter any more. Time runs through your fingers like sand, and before you know it, it's running out...if you take nothing more from this blog, please don't waste time, it's so precious. Do things that make you happy, if something is wrong change it! Love the people you hold dear because when time runs out, there is no second chance.
Overall in my life I have been blessed, lucky enough to have had my four darling children who mean the world to me, I love them dearly. I also have been lucky to come to know Jon's two children, Sarah and Jason. I know Sarah a little more than Jason as he lives in the Isle of Man. Sarah is a delight, so full of smiles and laughter..she reminds me so much of her dad. She too is there if I need her, but she is there for her dad seeing him every week for their Sunday afternoons together. This makes him so happy and I'm pleased that they are able to spend this important time together.
Family means everything, do not take it for granted my friends....you will never know when you may need to call on them for help and support.
If nothing more, cancer has made me take a second look at my life and learn that some things are so petty, it really doesn't matter.
Tuesday, 16 July 2013
8. St John's Hospice Wirral...... The House of Angels :)
Now, this hospice is full of angels, they for the most part wear uniforms of one sort or another and the biggest smiles you will ever see.
These ladies and gentlemen are a lifeline Jon and myself have come to depend on and admire, they are selfless. From the volunteers who give their time, skills and smiles freely, right through to the top of the staffing line, who give us so much care and compassion. I will never be able to thank them enough for what they do for Jon and myself.
When we first went along to the hospice to see it and had an appointment with the consultant, there was something, to a certain degree, behind it. It is Jon's wish that when the time comes, if possible he would like to spend his last days here. The reason behind this at the time, was, he thought it would be easier for me if he was here....I could take a break and recharge my batteries knowing he was in safe hands. I'm not sure about taking breaks, but I see what he means. The hospice is quite small and he wanted to get himself known to them so he would stand a chance of being admitted when the time comes.
Anyway, after seeing the consultant Jon was asked if he would like to try the day center once a week.....he agreed, but I think we were both doubtful that this would really be his thing. But give it a try he did.
Arriving home after the first visit, he seemed very impressed with the whole thing....it wasn't full of sad miserable people waiting for god. It was a happy chatty place, with lots of smiles and of course much to Jon's delight, lots of tea and cake!! Also he praises the hospice cooks to the hilt, he loves his lunches there!
Doesn't really say a lot for my cooking does it? haha..
The staff are wonderful, he has done a lot of art work there, they have a fantastic array of things to do, which again he didn't think he would fancy, but he was wrong there also. It's a bit of fun and relaxation and brings a smile to my face when he brings home things he has made..
This is Jon standing with some of his (and others) art work, at an open evening at St John's Hospice.
The nursing staff are in another league, they take such good care of everyone they come into contact with, patients and families. Two in particular spring to mind, Elaine and Helen, but all the staff are so friendly and do their jobs to the highest standard. These are the kind of people I know I can trust to look after the most precious thing I have in the world, my Jon.
Elaine is the manager of the day center (I think lol) and has the measure of Jon, she knows when something isn't quite right without him having to say a word. This why I can trust all of these angels with my Jon...they care!!
Helen is my support, I have sessions with her every few weeks and have come to trust her with my inner most thoughts. Safe in the knowledge she wont judge or betray my confidences. I wasn't sure at first that this sort of thing would do me much good, but Jon told me to "give it a go" and if it didn't work out, nothing was lost. So I did.....and I'm so glad I did! Helen is such a great help to me and will continue to be as we go through time with this monster that is intent on taking my Jon from me.
Another thing that we have both been lucky enough to have had a part in, is the Christmas Party, so much fun!! The staff and volunteers, the entertainers, the cooks, all went out of their way to make it a fabulous day.
These ladies and gentlemen are a lifeline Jon and myself have come to depend on and admire, they are selfless. From the volunteers who give their time, skills and smiles freely, right through to the top of the staffing line, who give us so much care and compassion. I will never be able to thank them enough for what they do for Jon and myself.
When we first went along to the hospice to see it and had an appointment with the consultant, there was something, to a certain degree, behind it. It is Jon's wish that when the time comes, if possible he would like to spend his last days here. The reason behind this at the time, was, he thought it would be easier for me if he was here....I could take a break and recharge my batteries knowing he was in safe hands. I'm not sure about taking breaks, but I see what he means. The hospice is quite small and he wanted to get himself known to them so he would stand a chance of being admitted when the time comes.
Anyway, after seeing the consultant Jon was asked if he would like to try the day center once a week.....he agreed, but I think we were both doubtful that this would really be his thing. But give it a try he did.
Arriving home after the first visit, he seemed very impressed with the whole thing....it wasn't full of sad miserable people waiting for god. It was a happy chatty place, with lots of smiles and of course much to Jon's delight, lots of tea and cake!! Also he praises the hospice cooks to the hilt, he loves his lunches there!
Doesn't really say a lot for my cooking does it? haha..
The staff are wonderful, he has done a lot of art work there, they have a fantastic array of things to do, which again he didn't think he would fancy, but he was wrong there also. It's a bit of fun and relaxation and brings a smile to my face when he brings home things he has made..
This is Jon standing with some of his (and others) art work, at an open evening at St John's Hospice.
The nursing staff are in another league, they take such good care of everyone they come into contact with, patients and families. Two in particular spring to mind, Elaine and Helen, but all the staff are so friendly and do their jobs to the highest standard. These are the kind of people I know I can trust to look after the most precious thing I have in the world, my Jon.
Elaine is the manager of the day center (I think lol) and has the measure of Jon, she knows when something isn't quite right without him having to say a word. This why I can trust all of these angels with my Jon...they care!!
Helen is my support, I have sessions with her every few weeks and have come to trust her with my inner most thoughts. Safe in the knowledge she wont judge or betray my confidences. I wasn't sure at first that this sort of thing would do me much good, but Jon told me to "give it a go" and if it didn't work out, nothing was lost. So I did.....and I'm so glad I did! Helen is such a great help to me and will continue to be as we go through time with this monster that is intent on taking my Jon from me.
Another thing that we have both been lucky enough to have had a part in, is the Christmas Party, so much fun!! The staff and volunteers, the entertainers, the cooks, all went out of their way to make it a fabulous day.
Jon having a brilliant time at the Christmas Party, lovely to see the smiles!!
I could go on so much longer in telling you how wonderful this hospice has been for Jon and myself, but I think you have got the idea by now. All of what they do, day in day out is funded by donations....these donations come from all walks of life. People who give up their time to do sponsored events of every type imaginable, to people who give just what they can. All of these people are so important to the upkeep of the hospice, which in turn brings help and some happiness and comfort to patients and their families, while going through such awful times in their lives.
I just want to say a huge thank you, from the bottom of my heart, to all at St John's Hospice Wirral, for "being there" for Jon and myself.
Saturday, 13 July 2013
7. Chemotherapy brings hell and hope at the same time...
Jon is almost a week into his Taxotere chemo and the cracks are starting to show.....side effects have kicked in quicker this time (than the last chemo sessions).
The various side effects are taking their toll on his body, but he is still battling away, he is amazing!
Chemo brings him (and me at times) to the edge of hell, but also holds out the hope of more precious time with my darling. So with that hope in the distance we go on, Jon battling with the fight going on within his body, and me watching at the sidelines wracking my brains to help him.
Time is marching on, the clock is ticking and the sound gets louder in my ears as each day passes, I can't block it out...it hurts so much.
We still have smiles as all this is going on... one side effect from Taxotere is hair loss. This is the thing that is a sort of miner concern to me, heaven knows why, because Jon has very little hair anyway. He finds this most amusing lol
I had this idea as we went into this new cycle of chemo, that I would have more control this time, Ha! how wrong could I be? The old symptoms have come flooding back to me yet again, worry, got to "save him" from all this.....palpitations etc. Though I must say, they are not quite as "wild" as the first time, but they are there.....so I guess I had better let them get on with it and just carry on.
I have times when I wish Jon wouldn't push himself quite so much, but then again if you don't push yourself, you could begin to lose ground...and he's is not near ready for that yet.
My Jon is the most courageous man I know, and I mean that from the point of view that he will not give in to this thing. Sometimes I look at him and wonder how on earth he can keep going, his body is letting him down but his mind is as strong as ever, and he is still the most stubborn man I know, carrying on till he can no longer do it without some rest. Which sometimes brings me to a point of almost shouting at him to go and rest!! But I don't, he needs this force within to keep the fight going, to let cancer know he wont go easily, to let the world know, you don't have to lay down and die at this diagnosis.
Life is short, and so many people (myself included) don't realise it until you come up against a crisis in your life. You think you will always be here....and you wont. I wish I had realised this before all of this happened, and maybe we would have taken things a bit slower, put things like work on the back burner now and again. Enjoyed life for what it is, and that is to share it with people, enjoy their company, even enjoy nature and all that goes with it around you. We miss sooooo much in our day to day life, it's so sad.
I grasp onto every moment I spend with Jon, I like taking photos, but now, if he moves I take a photo! lol Just to capture as many memories as I can while I can.
Sometimes when I sit alone, if Jon has taken the dogs out for a short walk, or when he is sleeping, my mind wanders to the fact that someday this is going to be my everyday life. I don't think about it too much as I would be constantly in tears, but it's true, and I can't shake it off. Fears of not being able to remember the sound of his voice, I don't know why, that's a lie, I do know why....I cannot remember my father's voice these days and that is sad. I wont let that happen with Jon, I will find a way to keep hold of every part of him, and I know he will be here beside me whatever happens until I can be with him again.
Enough of the morbid stuff!! It's here and now and I'm so lucky to have my Jon right here with me. Still making me laugh and still teasing me at every opportunity, lol
I just adore his sense of humour and the way he can take me in so easily, life is so good in that respect.
I had this idea as we went into this new cycle of chemo, that I would have more control this time, Ha! how wrong could I be? The old symptoms have come flooding back to me yet again, worry, got to "save him" from all this.....palpitations etc. Though I must say, they are not quite as "wild" as the first time, but they are there.....so I guess I had better let them get on with it and just carry on.
I have times when I wish Jon wouldn't push himself quite so much, but then again if you don't push yourself, you could begin to lose ground...and he's is not near ready for that yet.
My Jon is the most courageous man I know, and I mean that from the point of view that he will not give in to this thing. Sometimes I look at him and wonder how on earth he can keep going, his body is letting him down but his mind is as strong as ever, and he is still the most stubborn man I know, carrying on till he can no longer do it without some rest. Which sometimes brings me to a point of almost shouting at him to go and rest!! But I don't, he needs this force within to keep the fight going, to let cancer know he wont go easily, to let the world know, you don't have to lay down and die at this diagnosis.
Life is short, and so many people (myself included) don't realise it until you come up against a crisis in your life. You think you will always be here....and you wont. I wish I had realised this before all of this happened, and maybe we would have taken things a bit slower, put things like work on the back burner now and again. Enjoyed life for what it is, and that is to share it with people, enjoy their company, even enjoy nature and all that goes with it around you. We miss sooooo much in our day to day life, it's so sad.
I grasp onto every moment I spend with Jon, I like taking photos, but now, if he moves I take a photo! lol Just to capture as many memories as I can while I can.
Sometimes when I sit alone, if Jon has taken the dogs out for a short walk, or when he is sleeping, my mind wanders to the fact that someday this is going to be my everyday life. I don't think about it too much as I would be constantly in tears, but it's true, and I can't shake it off. Fears of not being able to remember the sound of his voice, I don't know why, that's a lie, I do know why....I cannot remember my father's voice these days and that is sad. I wont let that happen with Jon, I will find a way to keep hold of every part of him, and I know he will be here beside me whatever happens until I can be with him again.
Enough of the morbid stuff!! It's here and now and I'm so lucky to have my Jon right here with me. Still making me laugh and still teasing me at every opportunity, lol
I just adore his sense of humour and the way he can take me in so easily, life is so good in that respect.
Saturday, 6 July 2013
6. Life's little problems
We went today to have Jon's PICC line fitted before he has chemo on Monday. They let me into the treatment room to be with him, they had to do it twice because of awkward veins, but generally it went well. Now of course, I have something else to worry about......but I wouldn't be me if I wasn't worrying lol.
The worrying has started! Some of the dressing holding the line in place has come away....so paranoia is setting in. Why oh why can't I just go with the flow?
The coming twelve weeks loom in front of us/me and again I will feel under pressure to ensure that everything (and everyone) is spotlessly clean while Jon is on chemo. I stress about EVERYTHING....I know I'm over doing it, but the "I have to save him" syndrome kicks in and away I go. I shall try harder this time to not put myself under unnecessary pressure, because it's only hurting myself, and making me a "lesser" carer.
Talking of the word carer, I hate it! I am Jon's wife, I have always "cared" for him, but never been called that before. Nothing in that respect has changed for me, and I resent having a "label" put on me. I am a wife who loves her husband, and that is the top and bottom of it.
My love for Jon grows daily, his unswerving bravery/perseverance makes me so proud...I would like to think I would be the same in his position...but it's very doubtful.
Due to the effect of steroids, he is sleeping very little, just a couple of hours at a time. Through all of that, he is more concerned about disturbing me when he wakes! That just goes to show what a darling of a husband I am privileged to have, never a thought for himself.
It's very hard to watch from the sidelines what is happening to my darling Jon, the disease keeps rolling on like a steam roller. Nothing can stop it for very long, chemo is like a rock to the steam roller, stops it (with luck) for a very short time then off it goes again, it's relentless. And each time it takes more out of Jon, in turn that takes more out of me. We both hate the uncertainty of this disease, sometimes hope is in front of you, then like some awful joke it's taken away. One step forward three steps back.
Through all of the sadness, doubts and tears, I can truly say that I am blessed in having Jon in my life. Finding a love like ours is a rare gift and one I will be forever thankful for, I have had the happiest and most wonderful life with my soul mate over these last 12 years or so, and I wouldn't have missed it for the world! Whatever the future holds, I have the knowledge that I am truly loved and that will carry me through whatever dark days are ahead.
In the mean time, we are going to get through this chemo and take life by the britches, and live it in the best way we can! There are still lots of good times I'm sure, and the bad times will just be "lived" through until we come out the other side.
One thing that has come out of this, is that I have come to accept life for what it is. It's short, it's yours and only yours, and you must live it as if each day is your last! I have no regard anymore as to what people think of me, my life, I live it the way I want to now.
The worrying has started! Some of the dressing holding the line in place has come away....so paranoia is setting in. Why oh why can't I just go with the flow?
The coming twelve weeks loom in front of us/me and again I will feel under pressure to ensure that everything (and everyone) is spotlessly clean while Jon is on chemo. I stress about EVERYTHING....I know I'm over doing it, but the "I have to save him" syndrome kicks in and away I go. I shall try harder this time to not put myself under unnecessary pressure, because it's only hurting myself, and making me a "lesser" carer.
Talking of the word carer, I hate it! I am Jon's wife, I have always "cared" for him, but never been called that before. Nothing in that respect has changed for me, and I resent having a "label" put on me. I am a wife who loves her husband, and that is the top and bottom of it.
My love for Jon grows daily, his unswerving bravery/perseverance makes me so proud...I would like to think I would be the same in his position...but it's very doubtful.
Due to the effect of steroids, he is sleeping very little, just a couple of hours at a time. Through all of that, he is more concerned about disturbing me when he wakes! That just goes to show what a darling of a husband I am privileged to have, never a thought for himself.
It's very hard to watch from the sidelines what is happening to my darling Jon, the disease keeps rolling on like a steam roller. Nothing can stop it for very long, chemo is like a rock to the steam roller, stops it (with luck) for a very short time then off it goes again, it's relentless. And each time it takes more out of Jon, in turn that takes more out of me. We both hate the uncertainty of this disease, sometimes hope is in front of you, then like some awful joke it's taken away. One step forward three steps back.
Through all of the sadness, doubts and tears, I can truly say that I am blessed in having Jon in my life. Finding a love like ours is a rare gift and one I will be forever thankful for, I have had the happiest and most wonderful life with my soul mate over these last 12 years or so, and I wouldn't have missed it for the world! Whatever the future holds, I have the knowledge that I am truly loved and that will carry me through whatever dark days are ahead.
In the mean time, we are going to get through this chemo and take life by the britches, and live it in the best way we can! There are still lots of good times I'm sure, and the bad times will just be "lived" through until we come out the other side.
One thing that has come out of this, is that I have come to accept life for what it is. It's short, it's yours and only yours, and you must live it as if each day is your last! I have no regard anymore as to what people think of me, my life, I live it the way I want to now.
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