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.