After having a good Christmas, things went a little bleaker....my own health took a down turn, and this I think was due to me being run down. I picked up a bug around Christmas time and now we are into the second week of January and I still have it. Being in low spirits your mind runs riot, is it really just a bug or god forbid, is it something more sinister....having seen four doctors up to now, who don't really know what it is, I'm not a happy bunny. The doctor I have the most trust in, doesn't seem to think it's anything too serious, so it's a case of letting it run it's course. Funny how things you would have dismissed in the past, seem so much worse at times like this. I haven't got time for all this messing about, I need to be well to take care of Jon. I myself am feeling physically tired right now and can get tearful at times, I haven't felt the anger coming to the surface recently, which is good :) The one thing Jon has taught me through all of this, is, not to give in to self pity!! It gets you nowhere and just brings out negative feelings.
I have also taken the step to resign from my work, it feels a little sad to do that but I wont, in all reality be going back to work now, so it's retirement for me. This isn't the situation I thought I would be in when it came to retirement, it was supposed to come at a time when we could enjoy the later years of our lives doing what we wanted without the restrictions of working. Don't get me wrong, this is the right decision for me, I want and need to spend my time with my darling...so that's that.
Looking back at how our lives have changed in such a short time brings sadness, but it also brings soooo much joy and contentment because we have the time to talk with each other....not just about cancer, but everyday things, silly things and to just enjoy each others company. That is such a rich gift to be treasured.
People who have a family member with this damned disease will tell you that at times it can be soul destroying, with all that comes with it, the mood swings from their loved one, these can range from full blown anger to tears and despair. Jon has had a range of emotions at times, which have affected me as well some of the time, I miss what we had...BUT, it's gone and we have a "new" life to deal with. I can say with no doubt, the love I have for him will NEVER change, no matter what we have to go through. Frustration can be a trying thing.
Jon has been in very good spirits mentally for a good few weeks, and that is so good to see :) But he is starting to lose some weight now, though in saying that, he isn't eating well so that could explain it. His breathing is a little worse in that he gets breathless quicker than he used to, and the fatigue is another hurdle he has to deal with day in day out. My amazing husband is dealing with it all in his own courageous, positive way....he will never give in, the cancer may eventually have its way, but he wont give in!
So hard not to think the worst, but I try to reign my feelings in as much as I can. The scan date has arrived in the post, 3rd February 2014, Oncologist 11th February 2014...at time of writing this section we are mid way through January. It's not a long time to wait for the scan, but it's such a long time in my mind when we need to know what's going on! I hate living from scan to scan, it hurts and it brings so much anxiety and uncertainty along with it, if you have never had to go through this, you wont really understand what I'm talking about.
I was asked how I coped day to day, my answer? Some days you don't cope, other days you shut down inside and go into automatic pilot and then maybe you can cope. Then there are the lighter days when it's all good and you cope more easily.
Anxiety has reared its head more often in the last few weeks, so much so that it has affected me more and more with the physical side of life. I never realised before this that anxiety could actually come out in physical ways...I know it now! Now I know what I'm dealing with, I will find my way through it.
Because of this our wonderful Macmillan nurse has stepped in on my behalf, she is arranging for me to have some "me" time. This is through a group for carers called Wired Wirral, never had anything to do with them before, but in case anyone out there is reading this and is also a carer (UK) you too could benefit by contacting them.
Now, back to our Macmillan nurse, she is a guiding light for us at this time, she constantly monitors Jon and is always looking at ways of improving his quality of life. If there is anything at all that might help him, medically, she is on it right away. She also listens, and that my friends is so important to both of us.....sometimes that is all you need, a listening ear.
We are now entering February, and I can't tell you how hard this next week or so will be..... Jon has his scan on Monday and then a week later we will have the results. When scan time comes around I become anxious and scared, I want to know.....and I don't want to know. But time will carry on and we will soon find out what this scan has to say, I just hope and pray it wont be something I don't want to hear. I see changes in my darling and my mind jumps to the worst, then I check myself and try to get a handle on all these thoughts rushing round my head...most times I can do it, sometimes I can't. The hardest thing is trying to explain how I feel to others, it seems like a constant battle and I try to tell people how I feel, and mostly fail miserably. They can't understand, why should they? I hope to god they are never in a situation were they can understand!
Scan done, and half way through the week now, it seems this week is endless....time goes quickly when you don't want it to, but when you want it to pass, it just lingers on. I am at a high level of stress, trying so hard to keep a lid on it....for the most part I think I'm doing ok, but at times giving in to the horror of it all. This is the time when sharing my feelings with others going through the same thing in the Macmillan Community, helps such alot. I am not alone, it helps, though I would not wish this on anyone.....
Results in, tumours growing, though at a slow rate :) If things remain the same then 6-12 months or so, providing the tumours don't "explode" into action......chemo is now on the table if Jon wants it. He can ask for it at any time. Consultant thinks best way forward is to do nothing at this time and go for chemo if the tumours gather speed. That is a discussion for another day.
Again we have results, but no answers to it all, limbo time again for another three months.....sooo mentally exhausting.
I find at times I can't summon the strength to converse on the subject of cancer and our lives, right now that is one of those times. Getting my feelings out on here does help, I need to clear my head and look to the future.
Courage is not the absence of fear,
but rather, the judgement that something else is more important than fear.
Wednesday, 12 February 2014
Friday, 27 December 2013
18. December 2013
The last month of the year has brought various things to us, some good, some not so good. December brings Christmas to the forefront for everyone, but right from the beginning of this month I could feel the stress building.
I had a mild virus early in the month, which unfortunately Jon caught and it made him quite poorly. This was the start of the real stress, coping with "normal" illness is so much more of an ordeal in someone who has a major problem already. With the help of the GP and the district nurses we got through it, but it really took it out of Jon, which in turn made me feel guilty as he had got it from me.
I have come to notice more and more, in both Jon and myself, that mood and emotion changes are now becoming more apparent, and that is another thing along this journey that we both have to come to terms with. It can be hard, but we both know it's part of cancer sadly.
I came to a point during this month, that I felt "all cancered out" I did not want to talk about it, read about it, or deal with it. I felt so overwhelmed by whole thing and would have told anyone in no uncertain terms what I thought of them if they had brought it up.
I had not really been looking after myself during this time, not eating properly etc and had become quite run down. It took the district nurse pointing this out to me before I really realised what was happening. How could I possibly give my all to caring for Jon if I was not up to scratch? That brought me back to my senses lol and I am now sorting myself out.
Our spirits started to lift as the month went on, Jon was back at the hospice day center for a few more weeks and the Christmas party was on the horizon. Last year we enjoyed the party so much, even though at that point Jon was on chemo, this year it was really good and we both enjoyed the fun and friendship without having chemo holding Jon back.
Christmas Day arrived and we hoped it would be a good day.....it was far more than that! We had the best Christmas in a long while :) we relaxed and totally enjoyed the day. Visits from our children during the day really made it for us, and in between we could relax in each others company. There were so many smiles and lots of laughter, and we were as happy as we could be in this situation. The same could be said of Boxing Day, we enjoyed time with the children and grand children, bringing more smiles.
I took lots of photos, lots of smiles and happiness.
To say we were blessed this Christmas doesn't seem enough really.
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We now have the New Year looming in front of us, not knowing what it will bring, but we will face it with a positive attitude....that is all that we can do. The end of January brings the dreaded scan, and all the emotions and questions that come along with it. Will the tumours have grown again? How much have they grown? Will they decide to try and treat it for a bit longer? This has suddenly become an option of sorts....though I'm not as yet convinced that they will actually give it. If they do, will Jon be able to cope with yet more harsh treatment?
The uncertainty of it all, can at times become overpowering.....this is when you have to get a grip, pull your socks up, grit your teeth and tell yourself, whatever is decided I/we can and will deal with it.
So into the New Year we will go, positive that we will cope and carry on fighting this monster, keeping it at bay for as long as we can.
I wish you all a very happy and healthy New Year, just keep in mind, tell those you hold dear, that you love them as often as you can. Because a life can change in the twinkling of an eye and that chance may be gone.
I had a mild virus early in the month, which unfortunately Jon caught and it made him quite poorly. This was the start of the real stress, coping with "normal" illness is so much more of an ordeal in someone who has a major problem already. With the help of the GP and the district nurses we got through it, but it really took it out of Jon, which in turn made me feel guilty as he had got it from me.
I have come to notice more and more, in both Jon and myself, that mood and emotion changes are now becoming more apparent, and that is another thing along this journey that we both have to come to terms with. It can be hard, but we both know it's part of cancer sadly.
I came to a point during this month, that I felt "all cancered out" I did not want to talk about it, read about it, or deal with it. I felt so overwhelmed by whole thing and would have told anyone in no uncertain terms what I thought of them if they had brought it up.
I had not really been looking after myself during this time, not eating properly etc and had become quite run down. It took the district nurse pointing this out to me before I really realised what was happening. How could I possibly give my all to caring for Jon if I was not up to scratch? That brought me back to my senses lol and I am now sorting myself out.
Our spirits started to lift as the month went on, Jon was back at the hospice day center for a few more weeks and the Christmas party was on the horizon. Last year we enjoyed the party so much, even though at that point Jon was on chemo, this year it was really good and we both enjoyed the fun and friendship without having chemo holding Jon back.
Christmas Day arrived and we hoped it would be a good day.....it was far more than that! We had the best Christmas in a long while :) we relaxed and totally enjoyed the day. Visits from our children during the day really made it for us, and in between we could relax in each others company. There were so many smiles and lots of laughter, and we were as happy as we could be in this situation. The same could be said of Boxing Day, we enjoyed time with the children and grand children, bringing more smiles.
I took lots of photos, lots of smiles and happiness.
To say we were blessed this Christmas doesn't seem enough really.
We now have the New Year looming in front of us, not knowing what it will bring, but we will face it with a positive attitude....that is all that we can do. The end of January brings the dreaded scan, and all the emotions and questions that come along with it. Will the tumours have grown again? How much have they grown? Will they decide to try and treat it for a bit longer? This has suddenly become an option of sorts....though I'm not as yet convinced that they will actually give it. If they do, will Jon be able to cope with yet more harsh treatment?
The uncertainty of it all, can at times become overpowering.....this is when you have to get a grip, pull your socks up, grit your teeth and tell yourself, whatever is decided I/we can and will deal with it.
So into the New Year we will go, positive that we will cope and carry on fighting this monster, keeping it at bay for as long as we can.
I wish you all a very happy and healthy New Year, just keep in mind, tell those you hold dear, that you love them as often as you can. Because a life can change in the twinkling of an eye and that chance may be gone.
Sunday, 17 November 2013
17. A Fine Line
There is a fine line between positivity and despair, this last few weeks has been such a struggle for me. I would not usually dwell on the more anxious side to my life during this journey, but I feel I have to if I'm to be any help at all to those who are on a similar journey. Life with cancer is the hardest thing I guess anyone can deal with, and yes, there are some very dark times. For myself I find some times so difficult to deal with and at some points feel I can no longer do this. These times thankfully pass reasonably quickly!
The loneliness felt at these times is hard to describe, the feeling of being deserted by those who you had hoped would be a support to you can be overwhelming ( children not included in this). I realise that people have their own lives and problems to deal with and that comes first in their lives, and that is the way it should be....but, this journey has taught me a great lesson.......not everyone, sadly, can be counted on!
I hope that these people never have to face this horrible disease in their own lives, for then, they will know how it feels. I have become "harder" now, I will no longer be there for others, for those who have shuffled me/us out of their thoughts (for various reasons) I have started to become more selfish. The reason for this is purely self preservation.....I haven't got the energy or time to "worry" why people are being this way.
Things change as time goes by, prognosis changes slightly with each different oncologist we meet, and we have met many....just when you think you have it all sorted in your head, bam! there is a different angle thrown at you. All with the same outcome however they dress it up. That my friends is very hard to deal with, at least for me.
I have found that all of this is having a negative effect on my own health, which all of us carers find out at some point. No matter how hard you try not to let it, this whole journey changes a person, neither in a good or bad way...you are never the same person as you were before all this happened. For me personally, I have less patience with the "stupid" energy draining worries and have become less tolerant. I am angry that life has changed so much and there is very little I can do about it. But I have to deal with it and that's that.
Some things have surprised me, in a good way :) People who have no real connection with me/us have been so kind and helpful and that gives me so much joy and hope in human kind. I have "spoken" to other carers on line, all dealing with this same journey and have found, the feelings I have are not uncommon (as I thought) and have read some situations that have brought me to tears. We the carers have a hard job, we have to watch our loved one go through all that cancer brings, trying to help and also keep "normal" things going. Sometimes we have to voice our feelings and thoughts on different aspects of treatment to medical staff, this can be hard, some medics appear not to listen or just brush you aside....sometimes, someone will listen. All of this takes energy, and all of this is undertaken ultimately for the benefit of the loved one we care for.
What I am trying to say is, I adore my darling Jon, as other carers love their loved ones.....but it is a very hard job to make sure they are cared for to the best level available. Because loving Jon means I have to get the best for him in whatever way that is. We also have to keep ourselves on an even keel, that too is very hard.
To my fellow carers, I have total respect for you all and my heart goes out to all who are struggling TODAY..... everyone struggles, but if it's your turn today, I send you a huge hug!
The loneliness felt at these times is hard to describe, the feeling of being deserted by those who you had hoped would be a support to you can be overwhelming ( children not included in this). I realise that people have their own lives and problems to deal with and that comes first in their lives, and that is the way it should be....but, this journey has taught me a great lesson.......not everyone, sadly, can be counted on!
I hope that these people never have to face this horrible disease in their own lives, for then, they will know how it feels. I have become "harder" now, I will no longer be there for others, for those who have shuffled me/us out of their thoughts (for various reasons) I have started to become more selfish. The reason for this is purely self preservation.....I haven't got the energy or time to "worry" why people are being this way.
Things change as time goes by, prognosis changes slightly with each different oncologist we meet, and we have met many....just when you think you have it all sorted in your head, bam! there is a different angle thrown at you. All with the same outcome however they dress it up. That my friends is very hard to deal with, at least for me.
I have found that all of this is having a negative effect on my own health, which all of us carers find out at some point. No matter how hard you try not to let it, this whole journey changes a person, neither in a good or bad way...you are never the same person as you were before all this happened. For me personally, I have less patience with the "stupid" energy draining worries and have become less tolerant. I am angry that life has changed so much and there is very little I can do about it. But I have to deal with it and that's that.
Some things have surprised me, in a good way :) People who have no real connection with me/us have been so kind and helpful and that gives me so much joy and hope in human kind. I have "spoken" to other carers on line, all dealing with this same journey and have found, the feelings I have are not uncommon (as I thought) and have read some situations that have brought me to tears. We the carers have a hard job, we have to watch our loved one go through all that cancer brings, trying to help and also keep "normal" things going. Sometimes we have to voice our feelings and thoughts on different aspects of treatment to medical staff, this can be hard, some medics appear not to listen or just brush you aside....sometimes, someone will listen. All of this takes energy, and all of this is undertaken ultimately for the benefit of the loved one we care for.
What I am trying to say is, I adore my darling Jon, as other carers love their loved ones.....but it is a very hard job to make sure they are cared for to the best level available. Because loving Jon means I have to get the best for him in whatever way that is. We also have to keep ourselves on an even keel, that too is very hard.
To my fellow carers, I have total respect for you all and my heart goes out to all who are struggling TODAY..... everyone struggles, but if it's your turn today, I send you a huge hug!
Thursday, 7 November 2013
16. Dark Clouds Hover
Now that darker days have come with winter pressing in towards us, I feel that dark clouds are beginning to hover over our lives.
Jon is looking quite well, as everyone tells me...but I know how things really are. Fatigue is becoming more and more prominent in his life, he is getting more tired as days pass. We both know what this can mean, but right now we have not said it out loud, we hang on to the fact that he is still mobile, to a point, and he can still get his beloved dogs out for a short walk.
It is at times when I can see the tiredness and the sheer frustration with it all, that my heart breaks a little more. I have said it time and again, I so want to stop what this damn disease is doing to my darling husband....but I can't!
Last scan showed no further spread of the cancer, but the new mets are growing, all be it slowly.... I will never get used to this feeling of helplessness, never get used to seeing my Jon trying with all of his might to carry on to the best of his ability, and watching it get harder and harder for him. I would give anything to be able to take this away from him, but this is reality, it's not going to happen.
It's only a few weeks away from Christmas, as everyone that knows me, knows that it is my favourite time of year. I drive everyone to distraction talking about it all the time...but this year, excepting miracles, ( and they do happen!) will be our last one together and it's so very sad. On a positive note, we have had 14 months together since the 6 month diagnosis given at the first oncology appointment :) We are now on the final run, and no one knows how long that will be, but for every day we get I give thanks.
In the time we have been married I have come to know that Jon does everything in life with gusto and I love it! Now I see the man I love approaching this part of his life with same dogged determination to fight this illness with all he has. I stand back and cheer him on and help him as much as I can.
But, there is reality in all of this, we have come to the time were we have started to discuss the end of his life. I can tell you, it's discussion I never wanted to have to face, but if Jon can face it, then so can I!
If someone you love dies suddenly, then you have no time to discuss things like this and you have to muddle through best you can. With this disease you have the time, there is good and bad to both sides, but having to talk about it with the love of your life and try to make vague decisions about what is going to happen, is very hard. Jon has made me aware of his wishes, but he has left the final decisions down to me....I just hope I can do him proud!
I am at great risk of repeating myself in this blog, so please forgive me if I do, it's a blog to help others, but mainly to help me process what is happening in our lives. I could never have asked for a more loving husband than I have in Jon, he is always putting me first though sometimes I wish he would put himself first. Any medical staff that come into contact with him, district nurses etc, he makes sure they know that I am his priority and nothing else. I also let them know that he is my priority and if I think something is not quite right I will go ahead and make it known...not sure Jon appreciates that part lol.
I try hard not to let my mind wander to darker times ahead, but now and then I lose the fight on that one and that's when my dark cloud engulfs me and tears flow like a raging river. I rant at the world and take it out on those close to me, here and now I wish to thank all who stand by me through this ordeal and "put up" with my tears and rants, especially my children. Most of all I thank my darling Jon for helping me through all of this, when he has so much more to deal with.
I often wonder at how we all make our mark in life before our time is up...for me, my mark is, I have four wonderful children and two gorgeous grandchildren (so far!) they have brought more wonderful people into my life with partners and friends. So the mark for me is my children...the mark for Jon and me is..in some small way we have brought the dreadful disease Lung Cancer a bit more to the forefront and help people to realise it's not just a smokers disease, anyone, smoker or not can get Lung Cancer.
Jon and me have not had such a long time together in the great scheme of things, but we have had such a good life together and we have a bit longer yet! I treasure everyday, treasure every time we get to smile together, laugh and be silly together. Treasure the time I have with him to tell him how much I love him and to thank who or whatever brought us together to give us a taste of heaven. No one could ever fill the place Jon has in my heart and soul, it's impossible....simply that.
So as Christmas approaches, it's time to try to put sadder things to one side and go forward to have the best Christmas ever!! Simple things like this are to be treasured as memory makers and not, as before, taken for granted. I will try for the rest of my life, never to take life for granted again. Life is to be lived and loved before we all say goodbye to this world, otherwise what is the point of it all? The best mark to leave in life, is a smile on faces when your name is mentioned :)
Jon is looking quite well, as everyone tells me...but I know how things really are. Fatigue is becoming more and more prominent in his life, he is getting more tired as days pass. We both know what this can mean, but right now we have not said it out loud, we hang on to the fact that he is still mobile, to a point, and he can still get his beloved dogs out for a short walk.
It is at times when I can see the tiredness and the sheer frustration with it all, that my heart breaks a little more. I have said it time and again, I so want to stop what this damn disease is doing to my darling husband....but I can't!
Last scan showed no further spread of the cancer, but the new mets are growing, all be it slowly.... I will never get used to this feeling of helplessness, never get used to seeing my Jon trying with all of his might to carry on to the best of his ability, and watching it get harder and harder for him. I would give anything to be able to take this away from him, but this is reality, it's not going to happen.
It's only a few weeks away from Christmas, as everyone that knows me, knows that it is my favourite time of year. I drive everyone to distraction talking about it all the time...but this year, excepting miracles, ( and they do happen!) will be our last one together and it's so very sad. On a positive note, we have had 14 months together since the 6 month diagnosis given at the first oncology appointment :) We are now on the final run, and no one knows how long that will be, but for every day we get I give thanks.
In the time we have been married I have come to know that Jon does everything in life with gusto and I love it! Now I see the man I love approaching this part of his life with same dogged determination to fight this illness with all he has. I stand back and cheer him on and help him as much as I can.
But, there is reality in all of this, we have come to the time were we have started to discuss the end of his life. I can tell you, it's discussion I never wanted to have to face, but if Jon can face it, then so can I!
If someone you love dies suddenly, then you have no time to discuss things like this and you have to muddle through best you can. With this disease you have the time, there is good and bad to both sides, but having to talk about it with the love of your life and try to make vague decisions about what is going to happen, is very hard. Jon has made me aware of his wishes, but he has left the final decisions down to me....I just hope I can do him proud!
I am at great risk of repeating myself in this blog, so please forgive me if I do, it's a blog to help others, but mainly to help me process what is happening in our lives. I could never have asked for a more loving husband than I have in Jon, he is always putting me first though sometimes I wish he would put himself first. Any medical staff that come into contact with him, district nurses etc, he makes sure they know that I am his priority and nothing else. I also let them know that he is my priority and if I think something is not quite right I will go ahead and make it known...not sure Jon appreciates that part lol.
I try hard not to let my mind wander to darker times ahead, but now and then I lose the fight on that one and that's when my dark cloud engulfs me and tears flow like a raging river. I rant at the world and take it out on those close to me, here and now I wish to thank all who stand by me through this ordeal and "put up" with my tears and rants, especially my children. Most of all I thank my darling Jon for helping me through all of this, when he has so much more to deal with.
I often wonder at how we all make our mark in life before our time is up...for me, my mark is, I have four wonderful children and two gorgeous grandchildren (so far!) they have brought more wonderful people into my life with partners and friends. So the mark for me is my children...the mark for Jon and me is..in some small way we have brought the dreadful disease Lung Cancer a bit more to the forefront and help people to realise it's not just a smokers disease, anyone, smoker or not can get Lung Cancer.
Jon and me have not had such a long time together in the great scheme of things, but we have had such a good life together and we have a bit longer yet! I treasure everyday, treasure every time we get to smile together, laugh and be silly together. Treasure the time I have with him to tell him how much I love him and to thank who or whatever brought us together to give us a taste of heaven. No one could ever fill the place Jon has in my heart and soul, it's impossible....simply that.
So as Christmas approaches, it's time to try to put sadder things to one side and go forward to have the best Christmas ever!! Simple things like this are to be treasured as memory makers and not, as before, taken for granted. I will try for the rest of my life, never to take life for granted again. Life is to be lived and loved before we all say goodbye to this world, otherwise what is the point of it all? The best mark to leave in life, is a smile on faces when your name is mentioned :)
Tuesday, 15 October 2013
15. Having The Strength To Carry On...
Time passes and things don't get any better, I sit and wonder where do I get the strength to carry on......then I look at Jon, and the answer is there, right there. I don't need any other reason, Jon is all I need.
Some days it all gets too much for both of us, but on this journey there is no day off, you have to carry on, days can seem endless.
The days of me trying "to fix" this are over, the days of making sure Jon has all I can give him in the way of love, care and comfort are here. I knew these days would come, but I pushed them away trying not to think about them, but here they are. These days are harder for Jon, but for me they have lit a fire of determination that everything I can possibly do to make these months as easy on him as possible, will be done. As the line of a song goes- I will love him through this- that is all I have left to do.
I now have to fully go with my instincts, if I think something can be done to make life easier for Jon, I will ask and it will be done. And woe betide anyone who gets in my way! I cannot wait about dithering, wondering any more, the time I have with my Jon is so much more important and precious.
Day to day life of the humdrum sort, still goes on around us and we do the "normal" things that everyone has to do....and that to some extent helps us through. Selling the house (or trying to!) has put so much more stress on us, people know our situation, but can be so thoughtless in regard to the house. Our estate agent has been really good, she is doing all she can in trying to sift out time wasters. All we want is to sell, move, and make a little home for however long we have left together. Selling is important, Jon wants to put his affairs in order and have less stress in his last months....is that too much to ask?
My feelings on the subject of people and selling cannot be printed here!
My thoughts are turning towards Christmas, I love Christmas, but this Christmas will be different.....I am looking forward to it as usual, but in another way I'm not. It means time will have marched on further and I wont be able to get it back. So the positive in this is, make it a good one, make it a happy one, make it one I will remember for the good times. We're back to the making memories thing that I sometimes find difficult....not wanting memories but wanting/needing Jon. But realistically I will need those memories to carry me through days which I would rather not think about.
These days we take comfort in the little things in life, sitting watching tv together holding hands and just "being", that brings a contentment to both of us. The days when the grandchildren come round to see us bringing laughter and chaos in their wake. Days of chatting to our children mean so much more now, things that have been taken for granted in the past. Extended family, the ones who regularly pop in to see how we are and share a cuppa and a little laugh. These things are precious and priceless, again things that have in the past been taken for granted.
We are now looking forward to my eldest son Karl and his girlfriend Lauren's engagement party, which is in a few weeks. A chance to share their happiness and relax in the company of friends and family.
We also have my sister's Ruby Wedding celebrations later in the year, but right now, that is too far away to contemplate. Family and friends can be the richest thing you can have at times like this, so if you are in the same position as ourselves, remember to enjoy the little things in life while you can. You really don't need any more than that.
Awareness needs to be brought in the treatment and status of Lung Cancer, it is too easily brushed under the carpet as a smokers disease. The stigma of "you've brought it on yourself" attitude needs to be addressed and soon! People don't realise just how many non smokers also get this dreadful disease!
The question of "do you smoke" is always asked......does it matter? Lung cancer is lung cancer and is such a big killer!! If you have lungs, you are at risk and that is it. No one deserves to have to go through the terrors of lung cancer....and believe me, it is terrifying!
Macmillan, Marie Curie, Lung Cancer Survivors Foundation, Faces of Lung Cancer, and so many other groups are trying so hard to bring lung cancer to the forefront.....but how many listen? It's so sad.
Cancer of any description needs be fought on the highest fronts, but how many of you think of lung cancer in the same way as other cancers?
So in summing up, don't let life pass you by, enjoy it for what it is on a daily basis, be thankful you wake to another day and be thankful for family and friends.
I will be eternally grateful for having Jon in my life, the deep love we share and the overwhelming joy he brings to me...I couldn't ask for anything better than that! That gives me strength to carry on....that is love.
I love you Jon Roberts!
Some days it all gets too much for both of us, but on this journey there is no day off, you have to carry on, days can seem endless.
The days of me trying "to fix" this are over, the days of making sure Jon has all I can give him in the way of love, care and comfort are here. I knew these days would come, but I pushed them away trying not to think about them, but here they are. These days are harder for Jon, but for me they have lit a fire of determination that everything I can possibly do to make these months as easy on him as possible, will be done. As the line of a song goes- I will love him through this- that is all I have left to do.
I now have to fully go with my instincts, if I think something can be done to make life easier for Jon, I will ask and it will be done. And woe betide anyone who gets in my way! I cannot wait about dithering, wondering any more, the time I have with my Jon is so much more important and precious.
Day to day life of the humdrum sort, still goes on around us and we do the "normal" things that everyone has to do....and that to some extent helps us through. Selling the house (or trying to!) has put so much more stress on us, people know our situation, but can be so thoughtless in regard to the house. Our estate agent has been really good, she is doing all she can in trying to sift out time wasters. All we want is to sell, move, and make a little home for however long we have left together. Selling is important, Jon wants to put his affairs in order and have less stress in his last months....is that too much to ask?
My feelings on the subject of people and selling cannot be printed here!
My thoughts are turning towards Christmas, I love Christmas, but this Christmas will be different.....I am looking forward to it as usual, but in another way I'm not. It means time will have marched on further and I wont be able to get it back. So the positive in this is, make it a good one, make it a happy one, make it one I will remember for the good times. We're back to the making memories thing that I sometimes find difficult....not wanting memories but wanting/needing Jon. But realistically I will need those memories to carry me through days which I would rather not think about.
These days we take comfort in the little things in life, sitting watching tv together holding hands and just "being", that brings a contentment to both of us. The days when the grandchildren come round to see us bringing laughter and chaos in their wake. Days of chatting to our children mean so much more now, things that have been taken for granted in the past. Extended family, the ones who regularly pop in to see how we are and share a cuppa and a little laugh. These things are precious and priceless, again things that have in the past been taken for granted.
We are now looking forward to my eldest son Karl and his girlfriend Lauren's engagement party, which is in a few weeks. A chance to share their happiness and relax in the company of friends and family.
We also have my sister's Ruby Wedding celebrations later in the year, but right now, that is too far away to contemplate. Family and friends can be the richest thing you can have at times like this, so if you are in the same position as ourselves, remember to enjoy the little things in life while you can. You really don't need any more than that.
Awareness needs to be brought in the treatment and status of Lung Cancer, it is too easily brushed under the carpet as a smokers disease. The stigma of "you've brought it on yourself" attitude needs to be addressed and soon! People don't realise just how many non smokers also get this dreadful disease!
The question of "do you smoke" is always asked......does it matter? Lung cancer is lung cancer and is such a big killer!! If you have lungs, you are at risk and that is it. No one deserves to have to go through the terrors of lung cancer....and believe me, it is terrifying!
Macmillan, Marie Curie, Lung Cancer Survivors Foundation, Faces of Lung Cancer, and so many other groups are trying so hard to bring lung cancer to the forefront.....but how many listen? It's so sad.
Cancer of any description needs be fought on the highest fronts, but how many of you think of lung cancer in the same way as other cancers?
So in summing up, don't let life pass you by, enjoy it for what it is on a daily basis, be thankful you wake to another day and be thankful for family and friends.
I will be eternally grateful for having Jon in my life, the deep love we share and the overwhelming joy he brings to me...I couldn't ask for anything better than that! That gives me strength to carry on....that is love.
I love you Jon Roberts!
Sunday, 6 October 2013
14.Uncertain Days
It's been a month now since we got the news of the growth of the tumours, and since we were told nothing more can be done.
Since then my life has been in turmoil, up and down by the hour, trying to deal with all that's going on....it's SO hard.
Jon's symptoms have been gradually taking a toll on both of us, and the new back pain is a real worry. The Palliative Care Team are brilliant, trying to allay our fears, arranging x-rays/blood tests/more medications. They are doing the job they are in place for, and doing it very well, especially the Mac nurse who is lovely. She is such a support to both of us, as are all the medical staff involved with us, for that I'm grateful.
Jon is starting the hospice day center again, probably for six weeks and then he has to take a rest again, but for now it will give him a focus. That focus is a mainstay for both of us, Jon in that he can relax and enjoy the company of the people that go there and it gives him the chance to sharpen his flirting skills with the nurses lol.
For me, I get to relax knowing that he is being well looked after while I have some free time. As time goes on I am coming to realise I really do need that free time.
Uncertain days are ahead of us, but we try to take one day at a time and not look too far ahead now, but just enjoy each day as much as we can. Jon's next target is Christmas, I'm so hoping that we will be able to make it a lovely family time and enjoy our children and grandchildren. That will make this Christmas a magical one.
We have since had early results from the x-ray, nothing mechanical is wrong, so this begs the question, what is causing the pain? Jon has been put on to Zomorph now, it's a long acting pain killer, so at least he is covered 24 hours a day. We are hoping a scan will now be arranged to pin point the pain's origin, can't see any other way of finding out..just have to wait to see if they will give him one.
I really hate all this uncertainty, wondering what is going to happen next....so much wasted energy, but it doesn't stop you wondering. So many questions and too few answers!
My greatest wish now is that we could just be able to plan ahead a little....we can't plan beyond Christmas and then it will be a month at a time after that. I never realised how hard it is to not be able to look forward to things more than a month or two away. So used to planning twelve months in advance.....holidays, family events birthdays etc but each one we reach now, is such a special achievement and never taken for granted.
Family relationships change when you are dealing with cancer, not just personal relationships, but extended family as well. My relationship has changed with my children, they are my support, and they do this job that has been thrusted upon them, so very well and I love them dearly for it. But, I hate the thought that they have to do this, it's a position I never wanted them to be in....I try hard not to fall apart too often in front of them, but it's becoming harder as time passes. and I hate the loss of control! I am their mother not their burden.
Some members of my family have, I feel, let me down a little, some alot....maybe they don't know what to say or do, but just a few words of encouragement goes a long way, maybe I'm asking too much....I find it hard to deal with it sometimes, so why should I expect others to be able to? Some members are outstanding in the way of support, and I thank them for "being there". I don't want sympathy in any form for my situation, these things happen in life, and it's happened to me and Jon, we deal with it in the best way we know how.
So as the saying goes, it's one day at a time from here on in.......and each one of those days that Jon and me share are so precious, and I am grateful for them.
Since then my life has been in turmoil, up and down by the hour, trying to deal with all that's going on....it's SO hard.
Jon's symptoms have been gradually taking a toll on both of us, and the new back pain is a real worry. The Palliative Care Team are brilliant, trying to allay our fears, arranging x-rays/blood tests/more medications. They are doing the job they are in place for, and doing it very well, especially the Mac nurse who is lovely. She is such a support to both of us, as are all the medical staff involved with us, for that I'm grateful.
Jon is starting the hospice day center again, probably for six weeks and then he has to take a rest again, but for now it will give him a focus. That focus is a mainstay for both of us, Jon in that he can relax and enjoy the company of the people that go there and it gives him the chance to sharpen his flirting skills with the nurses lol.
For me, I get to relax knowing that he is being well looked after while I have some free time. As time goes on I am coming to realise I really do need that free time.
Uncertain days are ahead of us, but we try to take one day at a time and not look too far ahead now, but just enjoy each day as much as we can. Jon's next target is Christmas, I'm so hoping that we will be able to make it a lovely family time and enjoy our children and grandchildren. That will make this Christmas a magical one.
We have since had early results from the x-ray, nothing mechanical is wrong, so this begs the question, what is causing the pain? Jon has been put on to Zomorph now, it's a long acting pain killer, so at least he is covered 24 hours a day. We are hoping a scan will now be arranged to pin point the pain's origin, can't see any other way of finding out..just have to wait to see if they will give him one.
I really hate all this uncertainty, wondering what is going to happen next....so much wasted energy, but it doesn't stop you wondering. So many questions and too few answers!
My greatest wish now is that we could just be able to plan ahead a little....we can't plan beyond Christmas and then it will be a month at a time after that. I never realised how hard it is to not be able to look forward to things more than a month or two away. So used to planning twelve months in advance.....holidays, family events birthdays etc but each one we reach now, is such a special achievement and never taken for granted.
Family relationships change when you are dealing with cancer, not just personal relationships, but extended family as well. My relationship has changed with my children, they are my support, and they do this job that has been thrusted upon them, so very well and I love them dearly for it. But, I hate the thought that they have to do this, it's a position I never wanted them to be in....I try hard not to fall apart too often in front of them, but it's becoming harder as time passes. and I hate the loss of control! I am their mother not their burden.
Some members of my family have, I feel, let me down a little, some alot....maybe they don't know what to say or do, but just a few words of encouragement goes a long way, maybe I'm asking too much....I find it hard to deal with it sometimes, so why should I expect others to be able to? Some members are outstanding in the way of support, and I thank them for "being there". I don't want sympathy in any form for my situation, these things happen in life, and it's happened to me and Jon, we deal with it in the best way we know how.
So as the saying goes, it's one day at a time from here on in.......and each one of those days that Jon and me share are so precious, and I am grateful for them.
Thursday, 12 September 2013
13. Lost
September 9th 2013, yet another day to bring heartache....I am beginning to hate the month of September with a passion!!
Set out with my darling Jon to the hospital, scan results and last chemo cycle were on the menu for today, or so we thought.
Waited for Jon to be called to have his bloods done, never happened. When he was called we were taken straight through to see the oncologist, he asked the usual questions, Jon then asked if he had the scan results. The look on his face was enough, then he told us the news. The Taxotere chemotherapy had not worked and the small tumours had doubled in size. He would not be letting Jon have the last cycle of chemo....fair enough, no point. No more treatment will be given. We are back to a prognosis of 3-6 months average.
All of the unpleasant side effects that Jon has gone through over the last couple of months have all been for nothing.....
We left the office having been told there was to be a MDT meeting the next day and the oncologist would ring us the following day. I am assuming this call would be regarding trial drugs that Jon had enquired about.
Our mood was low, very low, how do you deal with that?? Shock is not too strong a word to use in this situation. Took a full day of disbelief and tears to get it out of my system, well as much as I can, I feel lost.
So, now we go on.....go on to where? time will tell.
Time is against us now and I hear that ticking getting so much louder.....what i do want to say here and now is, I am SO proud of my wonderful husband! He has from day one, taken on this fight with his mind firmly set on beating the hell out of this cancer, and is giving it his all. I have watched him go through all the ups and downs of treatment and he has taken it on the chin, he could have so easily given up months ago. I am in total awe of him, he has given me the strength to carry on the fight with him. We continue to nurture our love, it is stronger than ever and will go on growing forever, even after we are both gone our love will remain. We are one and NOTHING can ever take that away from us.
Day to day life changes, we both try to keep hold of some sort of normality, but the nature of the beast means you can't, but it doesn't stop you trying. Days are becoming more and more uncertain but I am grateful for each day I have with my darling Jon.
All of this has certainly brought home to me the need to live each day as WE want to, bugger everyone else! I have no time at all for any of life's dramas, if it doesn't make us happy, then it's out of our lives and I will never apologise for that.
Family mean everything to me and of course Jon, but the one thing that terrifies me is, after all this over and I am alone, how do I answer questions from our grandchildren? I think about this more and more, they are only small, but they are not stupid.....I have read some literature given from Macmillan, it helps a little but I still worry about it. I do not envy my son Steven and his wife Louise who will have the hardest job on this earth, telling the children. But, hopefully that is a while away yet.
The Macmillan online community has and is still there supporting me and we all support each other, we all understand what is happening to each other.....we are all right there facing the same thing. I am still amazed at the way people have supported us from other walks of life, they are helping us face each day with a smile. They keep everything "normal" make us laugh, share our fears and our tears, and keep us going, they may not know this, but they do!
I am going to take the the future one step at a time, it's too hard to think in advance now.....facing each day with as much courage as I can muster and making each day as good as I can for my hero, my Jon. Also making sure we continue to have good times, fun times and relaxing times enjoying each other's company. Jon makes me complete and how many people in life miss out on just that, being at one with someone they love and who loves them back? I am so lucky and so privileged, with Jon I have everything.
Time is against us now and I hear that ticking getting so much louder.....what i do want to say here and now is, I am SO proud of my wonderful husband! He has from day one, taken on this fight with his mind firmly set on beating the hell out of this cancer, and is giving it his all. I have watched him go through all the ups and downs of treatment and he has taken it on the chin, he could have so easily given up months ago. I am in total awe of him, he has given me the strength to carry on the fight with him. We continue to nurture our love, it is stronger than ever and will go on growing forever, even after we are both gone our love will remain. We are one and NOTHING can ever take that away from us.
Day to day life changes, we both try to keep hold of some sort of normality, but the nature of the beast means you can't, but it doesn't stop you trying. Days are becoming more and more uncertain but I am grateful for each day I have with my darling Jon.
All of this has certainly brought home to me the need to live each day as WE want to, bugger everyone else! I have no time at all for any of life's dramas, if it doesn't make us happy, then it's out of our lives and I will never apologise for that.
Family mean everything to me and of course Jon, but the one thing that terrifies me is, after all this over and I am alone, how do I answer questions from our grandchildren? I think about this more and more, they are only small, but they are not stupid.....I have read some literature given from Macmillan, it helps a little but I still worry about it. I do not envy my son Steven and his wife Louise who will have the hardest job on this earth, telling the children. But, hopefully that is a while away yet.
The Macmillan online community has and is still there supporting me and we all support each other, we all understand what is happening to each other.....we are all right there facing the same thing. I am still amazed at the way people have supported us from other walks of life, they are helping us face each day with a smile. They keep everything "normal" make us laugh, share our fears and our tears, and keep us going, they may not know this, but they do!
I am going to take the the future one step at a time, it's too hard to think in advance now.....facing each day with as much courage as I can muster and making each day as good as I can for my hero, my Jon. Also making sure we continue to have good times, fun times and relaxing times enjoying each other's company. Jon makes me complete and how many people in life miss out on just that, being at one with someone they love and who loves them back? I am so lucky and so privileged, with Jon I have everything.
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