Friday, 1 February 2013

A week of Meso

Sunday started badly, having had restless nights I didn't get out at all as the weather was terrible.  Hubby came back shortly after leaving with dogs in tow, to say that a little fawn had ran into a fence in front of him and he had stayed for a while then moved it to cover.  So the day began, him feeling guilty that if he had travelled down the lane 3 seconds later the fawn would have been long gone.  As it turned out we ended up housing the fawn at my brothers place and my nephew spent the day going back and forth to check on him. 
I had spent most of the day scanning photo's, I want to ensure this project of our life together is done before I die.  At 3 pm the scan died an overused death, (it hasn't been turned on for some three years then to work all day Saturday and most of Sunday what did I expect).  At 3 we went to buy a new scanner and called in on the fawn, I sat and stroked it and talked to it and prayed it would come through.  The vets thought it was concussed. 
Hubby carrying Fawn to Safety
We saw this fawn when it was just born in the fields with its mum
Unfortunately between 6 am and 9 am the fawn lost its battle, when we went to bury it blood was leaking from its head, obviously it had been involved in an accident earlier, hence why it didn't jump the fence when it heard the landrover.  My heart sank and so did everyone else's.
The weather took its toll on me being out in it and on Monday I felt like death warmed up.  Another night of insomina didn't help either.  I went into work for a while then came home, Tuesday I went for my scan, good job I checked my letter as I thought it was Thursday!  I didn't rehydrate with water enough and then for some unknown reason I decided to have a glass of wine, which led to more than 2.  I went to bed typsy and hoped I would sleep the night but at 2am I had woke up, my heart was racing and I couldn't get my breathe, I felt like there was no oxygen getting into my lungs.  This is a terrible feeling, for those who haven't experienced it.  How I wished I had kept onto mam's oxygen machine then.  I tried to settle but to no avail.  Hubby woke and I could see the worry etched into his eyes.  It didn't help matters when we took my temp, back to a meso temperature of 35.7, this is a session of the meso growing inside my body.  By 4 I fell asleep and he let me lie in till 9.  I was suppose to attend the funeral of a very dear lady who has fought with lung disease for many years and who is highly thought of in the circles of spiritualism.  Needless to say I didn't get, which then brought on a guilt trip.

Wednesday I slept and although new pains had now developed around the lower left ribs and I feel like my steel cage around my ribs has changed to total iron with the aid of a few screws being tightened, I went into work.  Year end is a busy time for me but I couldn't concentrate and felt weak.  This morning I don't feel much better, my heart is heavy, my left side aches and for once I am feeling very very sorry for myself.  I know the results will show small growth, so why does small growth have to make so much damn pain!

Hubby has booked 3 holidays for us, we never booked anything more than 8 weeks in advance over the last 8 years then last year we booked one at Christmas for Sept 12, I just hope I will be around in August to enjoy them all.... yes I know its silly and August is only 6 months away but within the meso world we know how fast this cancer can go from standing still to damn right aggressive.

Even my right side is hurting more than normal and a few pea's (the princess and the pea story) I can feel in bed are more than they were this time 6 months ago. 

I feel that I am lost in an ocean of uncertainty, I know that the oncologist will have nothing to offer, not even hope that there is something we can try.  I am all for giving chemo another shot, even though my brain is telling me if I hadn't had it maybe the meso wouldn't be so active now - Stupid I know because I took the chemo because the meso was too active!

I know that many are in the same position but at least surgery may still be an option if they have had too much chemo, me I have had it all really and what do I expect a miracle to pop its head up and say I'm here try me.  A little like Alice in Wonderland, wish I could find that magic potion. 

Well, sorry to depress you but I need it out of my head and the only place my hubby doesn't see is here.

I glanced at a report today that said those who had the EPP instead of decortication had longer odds, so why in the Uk do we do mainly decortication.  I was scheduled for the EPP but came out with my lung, at the time I was overjoyed, maybe now I should have asked why leave the object that has all the cancer cells?  I have to add there though that surgery only guaranteed 2 years and if I got 4 I was lucky.  I guess I get jealous when I read others have done so well and are hitting some 5 to 8 years after surgery and here I only had 1 year before those cells started again.  I guess I am just unlucky, but I should then think how lucky I am because I am still here.  This disease tears you apart time and time again.

Wish I could put my thoughts along with my meso and send it all to hell ........


Anne said...

Jan, I have read your blog daily. I know you are feeling very poorly at the moment but you will bounce back. I was in the reverse position. My husband John had the meso. He didn't really understand or know much about it apart from it being the legacy of working with asbestos. I am from a medical background. Johns consultant told me the diagnosis and I told John. He only lived for one more month. You have good days in between the bad and I am sure you will stay strong. You have to have somewhere to vent your feelings and here is the best place. I wish I had found it before John died.

Jan said...

Anne, Thank you for posting what most be one of the hardest sentences to write. If you would like to vent please email me. I am saddened to hear your husband had only one month and here I am moaning about not having long enough.

Anne said...

Jan you are justified in moaning. You have this bastard meso through no fault of your own but worse - the fault of others. Although John only had a month , he was I'll for a long time before the diagnosis. It was already too late for ops and chemo. He had pleurodesis on both lungs.
You and I are similar. I too have two beautiful dogs - Dobies. They keep me going. I also like crime , thrillers and mystery novels. I retire from teaching in two weeks time. I am sorry that I can do this because I lost John. I wish I could have shared retirement with him if only for a short time.

Jan said...

So pleased you have the dogs but saddened to hear that as you arrive at the point of retirement you have no John to share it with. Sounds like he was misdiagnosed too, and that will make you even more upset. We do have a lot in common and I hope you keep in touch, let me know how you are doing.