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.