Monday, 11 November 2013

Wet, wet and wet!

Today is the first time in a very long time that I am actually going to be on my own.  Gary's mam is due surgery to remove the cancer mass that has gathered around her ovary and hopefully the two small sites in her pelvic area.  The 3 doses of chemo have reduced the mass to an operable and successful removal size so fingers crossed it comes out as one easy piece and hey her life will be back to the endless rounds of golf she plays weekly.
This however, isn't sitting well with Gary.  He has been trying to visit his mam since she started chemo but with my health being so up and down he would not leave my side.  Son's are different to daughters but I have tried many times to get him to go, but he was always afraid that leaving me something would go wrong.  This goes back to when he would be away from home with work and it was always those times my body would have a cancer growth.  One of the worst was when it started at 8.30 at night, he was in London, and I didn't tell him.  I struggled to get upstairs to bed and spent an hour and a half one winters night on the floor because the pain was too severe to stand, I was unable to get myself onto the bed.  He only found out because I had texted a friend and said if I don't ring in the morning you had better bring a policeman and break in.  I never told him about many of the times, but because once I started with an episode or session of meso, it would last 23 days.  It didn't take a mathematician to know it started when he was away.  He holds this guilt that he wasn't there and I suffered alone.  This he only told me the day after the big birthday on the cruise that ended up in our first major argument.  Memories, wish that was a better one!
So he has left me instructions, he even wanted me to find someone to come and sit with me all day, not sure whether that's to ensure I don't do anything stupid or in case I need a helping hand!  No doubt the phone will ring every hour.  I don't want him worrying like this but what can I do.  I will be well behaved though so he doesn't have to worry.  Saying that, 4 days after I came home from my hysterectomy I pulled the hoover out and did downstairs, I nearly killed myself and boy was I in the hot water.  Those days he never noticed dog hairs etc and I couldn't stand mess in the house, so I kind of understand him not trusting me.....

I have improved so much over the last 4 days, even I can't believe the change.  I find it amazing how our bodies can come back from the depths of despair but with meso we seem to move from one thing to another.  Once I am feeling good I can guarantee that the meso will introduce another strategy to try and knock my body back down, but the fight will keep continuing.  I did say to my body this morning, yes I had a chat in the shower with it, that I think it is amazing and it probably gave me a chest infection so I had time between the drain being fitted and starting chemo.  It is trying to find a way to ensure I do things in the right timescale.  I could be wrong but with everything that I have been through in the last 9 years I honestly think someone is watching out for me.
Hard to believe on 30th September I thought I was truly at the end of my life, I wanted to roll up and die, here I am now wondering how hard the chemo will hit me and is my body ready for the next onslaught of being killed at various stages to ensure the preservation of life at the end of it.  A bit deep maybe for a Monday morning.
Liz, my extended family member, publisher, editor, proof reader and friend is popping over this morning to do some final work on the setting out of the book.  Hopefully we will have it completed, the back cover should arrive today from Lauren.  At least I truly hope so.  I just want it done now and out of the way.  So she is coming straight from her gym this morning, which will be interrupted by the district nurse no doubt.  Yes cleaning day of the site.  I did get a good 1.2 litres out yesterday and have to say I probably left another litre in, but the tube caught the nerve again and that pain was a little uncomfortable.  I also have thrush, need to start a course of tablets for that now!
Christine came over yesterday and ended up spending a good couple of hours, it was great as she managed to remember her laptop and we looked at photo's for ages.  When you see a couple of years together you certainly see changes!  For Christine her pride is her granddaughter Ava, and to be honest I feel a little of an outsider these days.  I spent a lot of time with Christine and her two children, Dani and Nats, they grew up with me as being an Aunt, but since the cancer crept in to my life I guess I stopped doing a lot of things and when you look at pictures it reminds you of how much you have missed out on your friend's life and that of the family you were a big part of.  The last time I saw Ava was when she was 1 year old!  She's now 3 coming up 4.  It's the same with Lorraine and her family.  Tasha was like a niece to me too, in fact many thought she was my daughter or Christine's, never Lorraine's!  Tasha now has an 18 year old, I remember her at 6 months, although I do see the family once a year at the BBQ Lorraine and Mark have every summer.  But still, I am no longer Aunt Jan, which is a shame.  Not having my own children it was always great being so close to them all. It is my fault, Gary and I have pretty much kept ourselves to ourselves, events I always let people down because I never know whether I would be well enough or not.  I know its only cancer, but having gone through the number of treatments, surgeries etc I have undergone plus work was always second, if I was well I put energy into work rather than into life.  I have no regrets there though because work is something or was something that was important to me.  It has, after all kept me sane and focused, my escape from mesothelioma and end of life.
By this is deep this morning, I had no idea what I was going to write this morning as I sat in front of the blog but guess something inside has been wanting to get out of the brain cell that still floats in that empty head of mine.
My plan today, well working on the book, maybe Chris and Lorraine will call in as both are off this afternoon.  The weather here is bleak.  Its cold and raining.  I will worry about Gary driving down to Hornsea as the roads are windy once he leaves York, and of course the A1M isn't a great road, although it has been upgraded quite a lot in the recent years.  We still have bad dual carriageways and farm turnings most of the way down it.
Once over I would have welcomed the house to myself, something I never had and a big treat, today I feel a little lost.  The house feels empty already, Bear and Lexi aren't happy because they haven't had a walk, I wanted Gary down the road so he is back driving before it's too dark.  Once you don't do more than 4,000 miles a year you lose the ability to drive in the winter nights, you're eyes just aren't ready for it.
Tom's funeral was on Saturday, I haven't heard from my dear friend Lisa but I hope it went well.  I know right now she will be feeling very alone.  On Tuesday Steve's funeral, which Gail has lovingly called His Celebration of Life, will be held.  Someone somewhere today will be buried who has died from this terrible cancer. 
What worries me about mesothelioma is the death, those few weeks leading up to the final moment with this cancer is one of the worst of its kind.  I know they say we will be made comfortable and our pain will not be felt but how do they really know.  No one knows what you feel, like everything else, we come in on our own and we go out on our own.  We can't say what being born feels like because we are unable to explain it then would never remember it anyway.  I know it is stupid to worry about this but always in the back of my mind, especially when I read someone has taken a turn for the worst, this thought comes to the front, I can't deny the fear I feel at times.  I also worry about how Gary will cope, as do my fellow warriors who worry about their carers.  You see we see both sides, and being part of the community we know how our partners\soulmates\family will feel once we leave them.  We can't tell them how we will feel, we don't want them upset.  I can't bear the thought of leaving Gary or never having him hold me, never being able to hold his hand, kiss his lips, snuggle up in bed, even put my freezing cold feet on his nice warm ones and he doesn't flinch. 
On a different note, we are both still lingering with this damn cold - cough, is anyone else still having such a time of it.  I have never known one last as long.  I wonder if we just keep passing it back and forth between us.  Also is another worry, he is going to see his mam, what if she gets it.  He did worn her but she wasn't bothered.  If she ends up with a chest infection after surgery Gary will feel guilty again and how will I pull him out of that, especially if anything happens?
On that note, I am going to close, my thoughts are too deep, especially for a Monday.  I am not down or depressed or being negative, just airing those cobwebs and clearing the brain.  To my fellow fighters don't get down hearted, listen to your body. 
So many people are waiting on news of whether treatment is working or not, you can never really tell on treatment because between the cancer dying, nerves readjusting and your poor body fighting nothing feels right.   Be positive in those thoughts and see those little black cells die in your eyes each time you feel a pain or something different.  Shout Die You B******.
Let's hope this week brings lots of good news, celebrations and the popping of champagne corks.  We all need a lift.  I am looking forward to leaving the confines of the house, although am nervy about losing my breath in the cold windy air.  Guess I am going to have to wait for a nice sunny crisp day.  Gary wants me to go over the woods first, I think it is too exposed and would rather go to a shop, but he thinks of germs!  Me I think of warmth.  Oh well, another week locked in won't kill me.  At least I have Facebook and a lot of friends who keep me going. 
On that note I am closing, thank you to everyone that supports me through this journey, seriously, without you all I doubt I would still be the person I am.

Thinking of the hot sunshine we will have next year!  Now I have a goal, next year is a few holidays, meeting up with friends we have met on cruises, hopefully meeting Lou from Australia and maybe even get Lisa to come the UK too.  Plans are a foot, so meso watch out!


Amanda said...

Good to know you are feeling better than september 30th, here's to continuing improvement. As you say what with chemo and meso I have no idea what is happening with Ray, we can just keep fingers and toes crossed.

Will be thinking of Gail and Steve tomorrow, so many good people, such a terrible waste.


Mama Vix said...

keep looking forward to that sunshine, Jan. don't let dark thoughts take hold or come through. x x