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...........