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.
Saturday, 20 July 2013
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.
Saturday, 29 June 2013
5.The Roller Coaster Is Off Again
We have just come back from a few days break away, along with my daughter Donna, recharging the batteries before we step on the roller coaster again. I enjoyed the time away, mainly because we did "normal" things, no one (other than ourselves) knew about the cancer. It was a time when we could try to be as normal as possible.
Monday 1st July is going to be the start of another unknown period in our lives, Chemotherapy is about to begin again. This is for the final time, after this there is nothing more to be done.
Now, I have heard/read a lot of things about this next chemotherapy, Taxotere, and to be honest it scares me. I know I should take things as they come, but I don't do that, never have, regardless of what it is. I have yet to have a "melt down" so far this last week or so, but it will happen, and sometimes when I least expect it!
As this "journey" continues I am finding myself feeling more and more tired, mostly mentally but it can also be physical. My mind never stops, and it will be worse once chemo is under way.....I go on high alert from the moment it starts. Watching for side effects, temperature changes, signs of more fatigue, and then coming up against new things that I haven't encountered . According to what I have read, we will enter the world of hair loss this time, which will be an alien thing to happen.
My experiences from the start of this period in our life, just on myself for a moment.....as I have said in previous blogs, my anxiety levels have shot up. Peaking at times of extreme pressure, with the shaking, palpitations etc there came a new one into this mix....I don't know if other carers have experienced it ( I wont say suffer as that is extreme) I have had a modest amount of hair loss myself during this time. My hairdresser told me it was stress and I had to try and get some sort of a handle on it. It still happens though I think it is a little less, thank goodness!
On some occasions I have had real temper tantrums (when alone), feeling sorry for myself and feeling very lonely. The anger builds up and then something very very trivial sets the tantrums off....sometimes it's the pure feeling of powerlessness that sets me off. To sit and watch what is happening to the man I adore, slowly getting further along the road with this illness is soul destroying. How can it not be?
Sometimes I feel ashamed of myself, how can I be so selfish? I haven't (god willing) got this terrible disease. But the thoughts of "what happened to MY life" "why has this happened to ME" "what is going to happen to ME with no future ahead" THAT is when I feel totally selfish. Then I get angry with myself and feel so ashamed.....
All of this I try hard to keep from Jon, but it doesn't always work out that way. Our poor dogs see most of it, they of course just ignore me and don't indulge these periods of self pity....which is what I need! I cannot allow myself to become self centered, it would be totally destructive to both me and Jon. I am thankful that these times are few and far between....but I thought I had to mention it, I'm not superhuman, I'm a human and my feelings sometimes get in the way of the role I play in helping Jon fight on as hard as he can against this cancer. Maybe what I have said has shocked you, maybe not.....but it's what happens in our lives right now.
Remember one thing though, NEVER judge what you have never encountered.....it's whole different story when you have to walk this road.
That is my "dark" side, out in the open lol but life does have it's lighter side! We still have laughs and enjoy "skitting" at each other...sometimes in ways that outsiders just wouldn't understand. I love this man and he loves me, that is wonderful! The only other thing I want is for this cancer to be taken away from him.....
So! It's time to gird our loins, so to speak, and get ready for the next part in the battle with NSCLC......it 's not going to win this battle for a long long time!!!
Monday 1st July is going to be the start of another unknown period in our lives, Chemotherapy is about to begin again. This is for the final time, after this there is nothing more to be done.
Now, I have heard/read a lot of things about this next chemotherapy, Taxotere, and to be honest it scares me. I know I should take things as they come, but I don't do that, never have, regardless of what it is. I have yet to have a "melt down" so far this last week or so, but it will happen, and sometimes when I least expect it!
As this "journey" continues I am finding myself feeling more and more tired, mostly mentally but it can also be physical. My mind never stops, and it will be worse once chemo is under way.....I go on high alert from the moment it starts. Watching for side effects, temperature changes, signs of more fatigue, and then coming up against new things that I haven't encountered . According to what I have read, we will enter the world of hair loss this time, which will be an alien thing to happen.
My experiences from the start of this period in our life, just on myself for a moment.....as I have said in previous blogs, my anxiety levels have shot up. Peaking at times of extreme pressure, with the shaking, palpitations etc there came a new one into this mix....I don't know if other carers have experienced it ( I wont say suffer as that is extreme) I have had a modest amount of hair loss myself during this time. My hairdresser told me it was stress and I had to try and get some sort of a handle on it. It still happens though I think it is a little less, thank goodness!
On some occasions I have had real temper tantrums (when alone), feeling sorry for myself and feeling very lonely. The anger builds up and then something very very trivial sets the tantrums off....sometimes it's the pure feeling of powerlessness that sets me off. To sit and watch what is happening to the man I adore, slowly getting further along the road with this illness is soul destroying. How can it not be?
Sometimes I feel ashamed of myself, how can I be so selfish? I haven't (god willing) got this terrible disease. But the thoughts of "what happened to MY life" "why has this happened to ME" "what is going to happen to ME with no future ahead" THAT is when I feel totally selfish. Then I get angry with myself and feel so ashamed.....
All of this I try hard to keep from Jon, but it doesn't always work out that way. Our poor dogs see most of it, they of course just ignore me and don't indulge these periods of self pity....which is what I need! I cannot allow myself to become self centered, it would be totally destructive to both me and Jon. I am thankful that these times are few and far between....but I thought I had to mention it, I'm not superhuman, I'm a human and my feelings sometimes get in the way of the role I play in helping Jon fight on as hard as he can against this cancer. Maybe what I have said has shocked you, maybe not.....but it's what happens in our lives right now.
Remember one thing though, NEVER judge what you have never encountered.....it's whole different story when you have to walk this road.
That is my "dark" side, out in the open lol but life does have it's lighter side! We still have laughs and enjoy "skitting" at each other...sometimes in ways that outsiders just wouldn't understand. I love this man and he loves me, that is wonderful! The only other thing I want is for this cancer to be taken away from him.....
So! It's time to gird our loins, so to speak, and get ready for the next part in the battle with NSCLC......it 's not going to win this battle for a long long time!!!
Saturday, 22 June 2013
4. Feelings
Coming up to the next course of treatment, the last course of treatment, brings all sorts of feelings to the forefront. Feelings that verge on hope, feeling that verge on despair, what will this treatment bring? How will it affect Jon? How will it affect me? I hope I am better prepared for this than the first time, I have a rough idea of how things will be. I know it will be a rough ride for me and Jon, and I hope I can be more open about it and how I feel. It takes so much mental energy to "hide" things from family and friends, and also to keep my feelings under some sort of control in front of Jon.
Jon, he is the mainstay of my life and I'm so glad we met and fell in love, the only sadness there is, is that I haven't had the time in my life with him that I would have liked. Meeting Jon has been a blessing, to be able to share everything, thoughts, feelings, sad times and good times...there have been so many good times filled with fun and laughter. Whatever time we have left, however that time is to be spent, I am truly grateful and consider myself to be lucky to have known, true complete love and contentment.
As a man he is everything I have ever wanted, I feel safe with him and so loved....if there is anything that has caused me to stumble in life, then Jon has been right there, ready to pick me up and get me sorted to carry on. I respect him deeply, I rely on him completely, and I am honoured to have become his wife.
From the first, he has made me happy, made me laugh so much, he has laughed at me and with me and taught me not to take myself too seriously, which I did have a tendency to do. I could go on and on telling you how much he has brought to my life, but the main thing he has brought, is complete love and stability.
The sad thing is, we wont (barring miracles) have as much time as we would like together, in an ideal world I would like to have become a really old lady with my really old Jon, there by my side.
To be more positive, we have what we have and we will rest easy in each other's love and company, and reach out for the happiness that is in the here and now.
I met Jon "online" and at first I thought it would go nowhere, how wrong could I be? So to all you doubters out there, sometimes the internet can be all the introduction you need to find happiness.
I find that my mood changes from hour to hour these days, one minute I can be happy then something triggers a thought that it could all too soon be gone. A song, an old memory, a photo, even something totally unrelated to me and Jon, and there I go, turned into a blubbering wreck!
I can't tell you how tiring all these feelings can be, I have given up work for the time being, to look after Jon, but I really don't think I would have the energy to go to work right now. I did miss the humdrum days of work in the beginning, but I know I have made the right decision. I will not let a second be wasted on other things in life, if it takes time away from Jon and me. Other people may have chosen a different way to do things, but this is right for us, and that is all that matters.
I don't have the disposable income I used to have, can't pop out and just buy what I want anymore, but that means little to me now...some things are far more important in life.
We are soon to be off for a short break before the treatment starts, a time to relax and enjoy being away from it all. We wont do a lot, we will just enjoy being together and making memories.
My daughter Donna is coming along with us to enjoy the break as well, so I envisage a shopping spree may be on the agenda lol
So, for the time being that is all I have to say.....will be back when treatment is under way.
Jon, he is the mainstay of my life and I'm so glad we met and fell in love, the only sadness there is, is that I haven't had the time in my life with him that I would have liked. Meeting Jon has been a blessing, to be able to share everything, thoughts, feelings, sad times and good times...there have been so many good times filled with fun and laughter. Whatever time we have left, however that time is to be spent, I am truly grateful and consider myself to be lucky to have known, true complete love and contentment.
As a man he is everything I have ever wanted, I feel safe with him and so loved....if there is anything that has caused me to stumble in life, then Jon has been right there, ready to pick me up and get me sorted to carry on. I respect him deeply, I rely on him completely, and I am honoured to have become his wife.
From the first, he has made me happy, made me laugh so much, he has laughed at me and with me and taught me not to take myself too seriously, which I did have a tendency to do. I could go on and on telling you how much he has brought to my life, but the main thing he has brought, is complete love and stability.
The sad thing is, we wont (barring miracles) have as much time as we would like together, in an ideal world I would like to have become a really old lady with my really old Jon, there by my side.
To be more positive, we have what we have and we will rest easy in each other's love and company, and reach out for the happiness that is in the here and now.
I met Jon "online" and at first I thought it would go nowhere, how wrong could I be? So to all you doubters out there, sometimes the internet can be all the introduction you need to find happiness.
I find that my mood changes from hour to hour these days, one minute I can be happy then something triggers a thought that it could all too soon be gone. A song, an old memory, a photo, even something totally unrelated to me and Jon, and there I go, turned into a blubbering wreck!
I can't tell you how tiring all these feelings can be, I have given up work for the time being, to look after Jon, but I really don't think I would have the energy to go to work right now. I did miss the humdrum days of work in the beginning, but I know I have made the right decision. I will not let a second be wasted on other things in life, if it takes time away from Jon and me. Other people may have chosen a different way to do things, but this is right for us, and that is all that matters.
I don't have the disposable income I used to have, can't pop out and just buy what I want anymore, but that means little to me now...some things are far more important in life.
We are soon to be off for a short break before the treatment starts, a time to relax and enjoy being away from it all. We wont do a lot, we will just enjoy being together and making memories.
My daughter Donna is coming along with us to enjoy the break as well, so I envisage a shopping spree may be on the agenda lol
So, for the time being that is all I have to say.....will be back when treatment is under way.
Thursday, 20 June 2013
3. Lung Cancer? I HATE it with a vengeance!
Before I go any further I would like to give my thanks to the Lung Cancer Survivors Foundation in America for being the first to feature this blog on their page.
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April brought us a little respite and we had some fun! My wonderful children and their partners organised my 60th birthday party, which was also mine and Jon's Wedding Vow Renewal. We did both together in one evening, it was a wonderful evening and I'm so happy we were able to do it while Jon was still well. My children did us proud and gave us/me memories to last a lifetime.
A very happy but also a very emotional evening, we have been married for 10 years in July. We decided to go ahead and have the vow renewal in April along with my "big" birthday, as we are never certain of what the future will be.
Next scan, May 2013.......this brought us the news we didn't want to hear.
We went along for the scan results, hoping that nothing had changed and all was stable......we got it wrong. The oncologist told us that Jon had some new growth, "mets", this word has now become an everyday word in our world. The worst thing being, the cancer had reached out it's grip from his left lung and was now in his right lung. My world shook and at first I had a bit of a time dealing with it, I was still thinking we had a couple of years if luck was with us.
The lung nurse took great pains in telling me that a couple of years was not really on the radar anymore, and we were right back at the beginning all over again. They were looking at treatment to give Jon the best quality of life they could for his remaining time.
How many times can your heart break? I think mine is being held together with super glue right now! I had a few days trying to get my head in the right place (wherever that is), readjusting to the new "old" diagnosis.
So, a new treatment was brought to Jon, Tarceva, a tablet that could possibly hold the cancer at bay a while longer. Jon had only been on it for about 10 days and it had to be stopped, due to side effects.... hopes dashed again.
Through this time I have gone from being ok-ish to being in total despair, I have cried rivers, thought I couldn't keep doing this, generally wallowing. Partly feeling sorry for myself, but mainly feeling SO powerless in not being able to stop this monster from destroying the one thing in my life that means everything, my Jon.
I have had times when I had so many stress symptoms and still do from time to time, that it frightened me to death! Palpitations, shaking, endless crying and even eye twitches!
But, between Jon and the rest of my family, I got through. Now, I have to mention two sources that have been my lifeline, they still are and will be right the way through this journey (as everyone calls it).
St John's Hospice Wirral is the first, they have been of so much help to me....and Jon. I cannot thank them enough for "being there" and supporting us both.
The other source is Macmillan Online Community, the people on here, and I am mostly concerned with the carers forum, are such a godsend. We are all in the same boat and have the same struggles, all at different points in this illness, but we support each other. We swop information and also laughs! If there is no one with an answer to what you are querying then you can phone the Mac line and speak to a specialist in whatever subject you need.
Without those outlets things would be so much harder. I cannot praise them enough!
So, we are now on the brink of Jon's last treatment, after this there is not much hope other than a trial treatment, but the odds are against that.
On the 1st July we go back to see the oncologist to get Jon onto IV Chemotherapy yet again, Taxotere. This time Jon will have a PICC line fitted to save him from the pain of having his veins poked and prodded to get the cannulas in. This drug does worry me a little more than the other treatments, having read up on it ( I know I shouldn't) the side effects can be quite unpleasant. It seems Jon could lose what hair he has left, and other effects which I wont go into.
The other thing that really bothers me is, where do we go from here? The answer is, a very loud, nowhere!
And that, when it comes to it, will put another large crack in my heart.
------------------------------------------------------------------------------------------------------------
April brought us a little respite and we had some fun! My wonderful children and their partners organised my 60th birthday party, which was also mine and Jon's Wedding Vow Renewal. We did both together in one evening, it was a wonderful evening and I'm so happy we were able to do it while Jon was still well. My children did us proud and gave us/me memories to last a lifetime.
A very happy but also a very emotional evening, we have been married for 10 years in July. We decided to go ahead and have the vow renewal in April along with my "big" birthday, as we are never certain of what the future will be.
Next scan, May 2013.......this brought us the news we didn't want to hear.
We went along for the scan results, hoping that nothing had changed and all was stable......we got it wrong. The oncologist told us that Jon had some new growth, "mets", this word has now become an everyday word in our world. The worst thing being, the cancer had reached out it's grip from his left lung and was now in his right lung. My world shook and at first I had a bit of a time dealing with it, I was still thinking we had a couple of years if luck was with us.
The lung nurse took great pains in telling me that a couple of years was not really on the radar anymore, and we were right back at the beginning all over again. They were looking at treatment to give Jon the best quality of life they could for his remaining time.
How many times can your heart break? I think mine is being held together with super glue right now! I had a few days trying to get my head in the right place (wherever that is), readjusting to the new "old" diagnosis.
So, a new treatment was brought to Jon, Tarceva, a tablet that could possibly hold the cancer at bay a while longer. Jon had only been on it for about 10 days and it had to be stopped, due to side effects.... hopes dashed again.
Through this time I have gone from being ok-ish to being in total despair, I have cried rivers, thought I couldn't keep doing this, generally wallowing. Partly feeling sorry for myself, but mainly feeling SO powerless in not being able to stop this monster from destroying the one thing in my life that means everything, my Jon.
I have had times when I had so many stress symptoms and still do from time to time, that it frightened me to death! Palpitations, shaking, endless crying and even eye twitches!
But, between Jon and the rest of my family, I got through. Now, I have to mention two sources that have been my lifeline, they still are and will be right the way through this journey (as everyone calls it).
St John's Hospice Wirral is the first, they have been of so much help to me....and Jon. I cannot thank them enough for "being there" and supporting us both.
The other source is Macmillan Online Community, the people on here, and I am mostly concerned with the carers forum, are such a godsend. We are all in the same boat and have the same struggles, all at different points in this illness, but we support each other. We swop information and also laughs! If there is no one with an answer to what you are querying then you can phone the Mac line and speak to a specialist in whatever subject you need.
Without those outlets things would be so much harder. I cannot praise them enough!
So, we are now on the brink of Jon's last treatment, after this there is not much hope other than a trial treatment, but the odds are against that.
On the 1st July we go back to see the oncologist to get Jon onto IV Chemotherapy yet again, Taxotere. This time Jon will have a PICC line fitted to save him from the pain of having his veins poked and prodded to get the cannulas in. This drug does worry me a little more than the other treatments, having read up on it ( I know I shouldn't) the side effects can be quite unpleasant. It seems Jon could lose what hair he has left, and other effects which I wont go into.
The other thing that really bothers me is, where do we go from here? The answer is, a very loud, nowhere!
And that, when it comes to it, will put another large crack in my heart.
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