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.

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.

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!

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 :)

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!

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.

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.

12. So, This Life Rolls On..

Well here I am again, Jon has just had his third cycle of chemo with one more to go. The side effects have hit him hard, each time gets a little bit harder due to the cumulative effects of chemotherapy. He is sleeping his way through it and that is the best and only thing to do during this period. But, it gives me more time to think....this can be a good thing and a bad thing. I'm glad that he is getting his rest and building up his strength again. My thoughts can stray into the negatives of all of this, I feel a little lonely at these times though I have got a little more used to it now. These times bring me back to a sense of what we are both dealing with, Jon battling the cancer and me battling feelings of loneliness and frustration.
I also take time to remember better times, look at photos and yes, smile!! This man has brought so much into my life, so much happiness and contentment, and also the deep love we have for each other, that truly makes me smile.

I have over the past few weeks felt a great sense of anger (that has now passed thankfully) I was feeling angry at everyone and everything! But my counsellor has been a godsend helping me to direct my thoughts into WHY I felt like this.
After some deep thought and talking to her, I realised my anger was really with myself. I can't "fix" Jon, no matter how I try I just can't..... and I know this is what I have been trying to do, also trying to protect him from anything and everything. I cannot protect him from life and what it brings, all I can do is the best I can within my limits to care for him and just be there. It is more important to try as best I can, to carry on life with a new kind of "normal".
It's time for me to look at our life with a fresh set of eyes, which finally I have been able to do, and with that a kind of calmness has now descended on me. This will be so much more productive than the sheer anger that had recently prevailed.
I'm not saying it will always be this way, I'm sure I'll still have my angry periods along with the sadness and not forgetting the laughs and smiles! But now I know why I feel this way and can deal with it.

During the next week Jon will get his scan appointment and we shall have the results on the day of his last chemo. This will bring back the turmoil  into our lives, waiting to see if all this chemo has been worthwhile. I cannot tell you how much this "waiting" gets under my skin, I have to be very firm with myself not to get into a negative state of mind. So! I will do my best to stay level headed and be positive, and try to cast out the small negative thoughts that can, if you let them  grow into something much larger. Again, it is the fear of the unknown and the uncertainty every step of the way that can get to you.
So, for now, this life rolls on and does it in which ever way it wants to, it may be a roller coaster but it's one I am learning to ride and some of the time, be in control.
I hang on to some words I found on the internet when things get a little hard.....

Courage is not the absence of fear,
but rather, the judgement that something else is more important than fear.

These words bring back my fighting spirit and I get right back in there helping my wonderful Jon to fight on.

11. Time Waits For No Man

I am finding as time goes on, that my feelings are changing more often...the roller coaster is running away from me and the dips are getting deeper.

Each step along this journey is getting harder to deal with, sometimes I find myself very upbeat and looking forward with positivity. Other times everything looks bleak, my Jon is being taken from me and there is nothing I can do about it.

Anger is becoming more and more prominent  in my everyday life, though I do try hard to keep it under control. I'm angry that life goes on for others, planning what they are going to do next week, next year....and knowing we cannot. In a way it's jealousy, I too used to be like that....and now that has been taken away from us. No one knows how we feel day to day, except if you are going through or have been through something similar. Trying to keep the "happy face" charade up, gets harder, trying not to be a "bore" to people about what is happening to us. It's our life, such as it is, but it's a bloody hard life!!

Time waits for no man----a saying I have never paid much attention to in the past, but I do now. We are told to live each day as if it's our last, but that is easy to say and not easy to do.

Jon is still walking the dogs as much as he can, but I can see it's getting harder as time passes... it's heart breaking to see this strong, independent, stubborn, loving man losing ground as time goes on. The worst thing is, I can't do a dam thing about it!! THAT really makes me so angry!!!  

We are trying to make memories as we go along, but who are the "memories" for? Me! when I'm here alone without my Jon. I DO NOT want bloody memories, I want Jon!! 

I know it must seem to those that read this blog, that I am on a self pitying road right now, but I'm not, I'm sad, I'm angry and I have to allow those feelings to surface occasionally or I will explode.

I try not to let negative feelings overwhelm me too often, but I would be lying if I told you they never occur. Anyone facing life with cancer, from which ever side you view it, has these feelings. Most of the time you can bury them and ignore them, but now and then they have to be faced. 

My mind is starting to wander to the next scan, which will be in three or four weeks or so. The wondering will start again, has it worked this time? How well has it worked? What if it hasn't worked? What next? Is there a "what next"? 

Only time will tell, and-----Time waits for no man........... 

10. Life Crumbles During Chemotherapy

Cycle two of the four cycles of chemo has just started, the first cycle wasn't great, side effects kicked in on the third day after Jon had it.
Second cycle side effects are now starting to kick in....not good! Jon is very flushed, very tired and his breathing is being affected.

His beloved hospice day center day (today) was cut short because he was so unwell, he has been to bed for most of the time since he got home. Best place for him while he feels like this, but, it's sooo frustrating for him and makes me feel so powerless.

During chemo cycles, life goes on auto pilot, you cannot plan anything as you never know when and what side effects will kick in.
I find the most painful thing for myself is, I have to watch from the sidelines as Jon goes through this, helping in practical ways and supporting the tide of erratic emotions that come and go. My own emotions go up and down also and I try to keep myself in check while Jon is dealing with the hard part of chemo, most of the time it works, sometimes it doesn't.
Chemotherapy can be a lifeline and give more precious time, but, it also brings you back to the reality  of what is happening in our lives. Brings questions to the table, such as "is it working?"  so many "what ifs" and the biggie "how much time will it gain for us".

I am totally amazed at how much support that our family and friends are giving and continuing to give on a daily basis. We both have so many "virtual" friends online as well, these are people we have not physically met, but have been such a support to us. Without that support this would be a hell of a lot harder to deal with...the feeling of isolation doesn't come over you quite as quickly as it would without them. That feeling still comes, feelings of isolation, despair and bleakness.
But, there is also the laughter that is brought by family and friends :) life goes on and you have to go with it. You can't be down all of the time or you would go insane, so to all those who are constantly there for us, I thank you.

Life does crumble during chemotherapy, but you pick yourself up and build it back up again as best you can, and carry on. I am grateful we still have a life together, it could have been a very different story, so for the time being we have a life, and we are dam well going to make the most of it!
So, we are half way through Jon's chemo now, one more cycle and he will have a scan to see if it has done the job. Hoping and praying for a good result, especially after all he is going through right now. A good result will mean (god willing) that Jon and myself will get a few more months together and be able to make some more good memories. That is the very best we can hope for and that is what we are aiming for.

Through all of this my darling Jon carries on and tries hard not to let it get him down too much. His strength of character is a sight to see, the stubborness  of this man is holding him in good stead, he wont give in easily. I am so proud of him and the way he is dealing with this monster, though on occasions I could slap him when he wont rest lol

My Jon, my hero :)

9. Thoughts from my mind

Sitting here with a cup of tea, mulling over what has gone on with Jon and me...

Ten blissful months ago we were totally unaware as to what was to lie before us in fact we had just returned from a camping holiday in France. I knew something was wrong because Jon had become ill on our last day there, but never did I dream it would be the start of a long fight with cancer.

Ten years ago, I married my soulmate in a simple ceremony with some of our family and friends there. A day that will stay etched in my memory forever, a day when all of my dreams came true. As I say, it was a simple wedding just the local Town Hall and a social club occasion later, but for me it was a fairy tale, I was marrying the man I loved and adored. Life couldn't be better!
We settled into married life easily and loved each minute spent together, first in a flat and then into our first house together. A little house that now has big memories of our  life, and will have more memories of love and laughter, but also of our struggle together with cancer. But, it's a house/home that knows the depth of our love, the lengths we will go to for each other. If walls could speak they would tell you of all the good times, the laughs and outright silliness of our life together. We have had our ups and downs as everyone does, but compared to the good times the not so good are insignificant.

In our time together, we have become proud grandparents of our adorable grandchildren, Olivia and Isaac, I cannot tell you how much they enrich our life. If you feel a little down when the little ones come for a visit, by the time they have gone your spirits have lifted. Olivia is a little dancing queen and loves to show you her dance moves from dance class. And Isaac? Oh Isaac, he is laughter on legs with the speed of a hurricane...you can always be sure of a chuckle when he is in the room.

My children, I have four of my own and Jon has two, we adore them all equally and are so proud of each individual and what they have achieved in life so far. I am also a proud mother in law to Louise and Sarah (almost) and maybe in the future Lauren.
I have three sons, Karl, Steven and David and one daughter, Donna-Marie, they have all been very supportive to us in many ways....always a shoulder there for me.
I can't imagine going through all of this without my family there in the back ground, ready to catch us when we fall. They are my safety net, I'm sure they don't know how much I/we need them at this time, all six of them.

In the stillness of a quiet room, my mind wanders back through the time since we married. Pictures of happy times, fun times and also realising that we have it all as regards what it means to have absolute love. It makes me happy to look around at photos ( and believe me there are many!) and remember when they were taken and what we were doing at that time.
You take life for granted when you're young or at a stage in your life when all is well and going wonderfully...then as we did, you get a wake up call!! I am guilty of not living each day to it's utmost, until now, now little things that used to upset me don't matter any more. Time runs through your fingers like sand, and before you know it, it's running out...if you take nothing more from this blog, please don't waste time, it's so precious. Do things that make you happy, if something is wrong change it! Love the people you hold dear because when time runs out, there is no second chance.

Overall in my life I have been blessed, lucky enough to have had my four darling children who mean the world to me, I love them dearly. I also have been lucky to come to know Jon's two children, Sarah and Jason. I know Sarah a little more than Jason as he lives in the Isle of Man. Sarah is a delight, so full of smiles and laughter..she reminds me so much of her dad. She too is there if I need her, but she is there for her dad seeing him every week for their Sunday afternoons together. This makes him so happy and I'm pleased that they are able to spend this important time together.

Family means everything, do not take it for granted my friends....you will never know when you may need to call on them for help and support.

If nothing more, cancer has made me take a second look at my life and learn that some things are so petty, it really doesn't matter.

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.

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.

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. 

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.

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!!!

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.

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.

2.Treatment under way..

The combination chemotherapy is under way, four cycles of twenty one days, two weeks on, then one week off. I was very apprehensive as to how this would affect Jon, I spent quite a lot of the time watching him, just in case. I sound sooo paranoid and to be fair, I was! And the reason for the paranoia? I was so scared at what was happening to my darling husband. I had to try to "save him" at all costs, not much has changed in that respect except I am slowly becoming aware that there is nothing either of us can do to stop this disease.
One thing that I thought caught us both out was, the steroid factor! Before Jon was given his treatment, he was given some anti-nausea medication and also a strong dose of steroids. The steroids had a very profound effect on Jon's appetite, so much so, that nothing in the house that was in any way eatable, was safe! I have never seen anything like it.
The first dose had the most effect, the appetite, but also, he could not sleep for the first night....just sat up wide awake eating! I find that very amusing when I think of it now.

Some days during the chemotherapy weren't too bad, on the whole Jon had a reasonable time as regards side effects, fatigue being the worst.
Right at the beginning of the chemo treatment they gave us an alert card, this was to get in touch with them immediately if certain things happened during treatment. When given this, at first, I panicked a little.....why do they need to give us this? what terrible things could happen?
Time went on and treatment ended, by this time Jon was looking and feeling tired, but not as bad as we might have expected.

The first after treatment scan came in and it was looking good, and we were told that maybe, just maybe, Jon could get a couple of years now..... so the next treatment was planned, Radiotherapy.
Another unknown to make it's way into his/our lives.
Jon has taken all his treatment in the most positive way possible, I wish I could say the same for myself! I cannot tell you just how proud I am of him, he is an inspiration to all around him. During all this time,we talked so much, about treatment, about life, about us and how all of this was affecting us. Our children were also on our discussion list, they have been outstanding in their support for us as a couple, and my children have been so much help to me.

One thing I can say, my love and respect has grown so much more ( never thought my love could grow anymore than it already was!) since watching this man, the man I love, take on this battle.
I sometimes sit alone, thinking about the future, my future when I am no longer part of this loving couple, no longer have my soul mate here with me. To say it terrifies me is an understatement, I hate the thought that one day in the relatively near future, I will be alone. Tears have flowed, lots of them.....also anger, anger at the world, anger at everything. Then I reach deep inside and give myself a good talking to. I will never be alone as long as my heart is beating, he, my Jon, will be right there. That is all I need to get myself together and carry on helping my lovely man continue his fight....and by god, together are giving this damn thing a run for it's money!
The radiotherapy passed without too much to upset us....the main thing being the burning of his oesophagus and again, fatigue. The burning was helped by medication prescribed by the oncologist, it soon passed when treatment was finished. Jon also has a fair sized burn on his back from the radiotherapy, but as far as I know it has never bothered him. It's his badge of honour for getting through yet another treatment. I was pleased that  it was over, Jon would get a break from treatment and have a chance to recover as much as he could do.
Now we get to the "limbo" time of waiting to see what happens next .....

1. And So It Starts....from a Cancer Carers point of view.

September 18th 2012, a Tuesday....that date is forever set in my mind. The day that my darling Jon's cancer was confirmed, NSCLC stage 4, inoperable, incurable. 
So, what do you do when presented with that information?
In the first place, I was in a state of shock, then panic, then despair. 
The staff at the hospital were wonderful, cups of tea and information in abundance, and trying to guide us through all the information. My brain sort of went into slow motion mode as I tried to deal with it all. So many leaflets,booklets, sheets of papers; just too much all at once.
We had an appointment made for Jon to see the consultant and start treatment. We were told Jon had, on average, six months to live if he didn't have any treatment........ six months? that's not any time at all. 
I kept the thought in my head, no! they must have made a mistake...this doesn't happen to us. It's not what is supposed to happen to us, this is NOT my life plan! But someone forgot to tell cancer about my life plan.
Anyway, Jon opted for treatment and Chemotherapy was the first line treatment....and so it starts.
A combination chemotherapy of Carboplatin/Vinorelbine was to be started as soon as possible, we had been told to keep everything at home spotless in case of infection.
Well, that was it!! I went into hyper mode, looking back it's quite funny now, if it moved in any way, it got antibacterial sprays, liquids or wipes thrown at it ( including people and dogs!). 
If Jon touched anything remotely mucky I was there with the antibacterial hand wash, and he HAD to wash his hands whatever he thought. Then came the hand gel, the type you get in hospitals when entering the ward, we both had to use it regularly or I would stress out. All this, in my mind, was making sure there was no infection "going to get him". In fact looking back, it was just stressing me out, nothing more.
I knew stress levels had got high when I had a doctor's appointment and arrived still wearing my slippers! I was mortified, Jon was very amused with the whole thing. I sat in the waiting room with my handbag on my feet, trying to hide the slippers!
After that I had to take a step back and try to look at the whole picture and calm down as much as I could. (yeah right, like that's going to happen!)
Life will never be the same again and I will miss the life we had, but, this is a new chapter in our lives. Every new chapter has it's ups and downs, and through this, there will be tears and sadness, some anger, it will have it's smiles and laughter, but most of all it will have the strong, everlasting, deep love that will see us through anything!
I cannot believe how strong, brave and positive my darling Jon is being, no matter what is thrown at him he takes it on board and deals with it. 
That is the mark of a man, my man.