Friday, 3 January 2014

Body is fighting

Monday gone I was supposed to have my 3rd dose (5th set) of Vinerolbine, had I taken it or been allowed to take it I doubt I would be sat here writing my blog.  I can say, hand on heart, that it has been the chemo causing my rapid deterioration and not the mesothelioma taking on full control.

Mentally, now that 2013 has gone I feel better, stupid how our mind can get hold of something and never let it go.  Monday I wasn't well, Tuesday I felt like a different person, each day I have become stronger.  It isn't a great leap but enough to know that I am finally on the way from that bottom of that deep dark well.  In all the years I have had mesothelioma it has never dominated my life, my every day thoughts or impinged on our lives as much as it is now.  Mesothelioma was something I was living with, it tired me in the late spring but by summer when the ascities showed its colours our lives changed forever.  Buying the wheelchair was so I could go out and not worry about being breathless, never did I think I would need it in the house to ferry me from the lounge to the toilet or the top of the stairs to the bedroom.

I have another week before I see my oncologist, decisions and a long conversation is certainly required.  If I can get these two new tumours zapped I think I stand a good chance of staying around for quite a while yet.

Thursday we spent from 10.45 till 4.15 or later at Darlington Hospital.  This was to check the high levels of potassium that is travelling around my heart.  It has been high, well over the acceptable levels but due to sets of problems within my body it is hard to determine what has caused it.  The current belief is the chemo, but I have to say I am pleased that it dropped yesterday to 5.9, still above the range but in an allowable way.  If it had risen dramatically overnight then I would be in serious trouble, but mine has risen over the last few weeks.  Because of ascities and the chemo it is hard to say what it's doing, together with taking steroids, which can also affect the reading.  I am so pleased I didn't lift them to 5 tablets when I was so breathless Christmas Eve.

My bloods were done within 15 minutes of arrival, the room had 6 including Gary and I and the bed part had about 4 patients.  The lady sat opposite me had an infection and was frozen, she was receiving oxygen to get her stats up.  The lady sat next to me was receiving blood.  I was burning up, there was no air.  We waited and waited.  We were told the blood would take an hour then the consultant would see us.  That hour became 3, by then I was ready to collapse in the heat, breathing was difficult.  Gary wheeled me into the corridor and some how we managed to catch the main consultant, he told us how busy he was but he would get me.

We waited another hour, sweat was running down my face, pooling in my throat.  I went to my named nurse and said we know the blood is ok, please can I just go home and if he needs me I can always come back.  She said give me a minute and I'll catch him.  He came back and called us into his office.  We discussed the tests and the meso then he let me go.  If I had needed an infusion I have no idea what time we would have got home.

I must say RAMAC is a good idea but it could do with its own consultant on there all the time.  I must admit the nurses were marvellous on here to.  It's a shame though that people are still abusing the A&E, especially those who go out drinking and end up vomiting on the streets, or those who cut a finger, hello go to your walk in centre or your doctors!

I had managed to sleep right through that night so was hoping the same for last night.  We went to bed earlier than we have for the last few weeks, 10.30.  I feel into my drugged induced sleep to wake at 3.30, I woke Gary and walked to the loo.  I told him not to turn all the lights on so we would keep the ambience of normal sleep.  Back in bed the pain came, I tried to lie down but no, my heart rate started to speed and that fear took. Hold.  I took half a diazapam and sat up waiting for it to release the hold on my chest.  Slowly I managed to lie back and then finally back to sleep.  We got up at 7.30 and surprisingly even Gary felt more refreshed.

Due to the loss of weight the inevitable has happened, I have sores on my skinny bum!  Now I am going to have to find a new way to sit!

My goal is to be totally out of the wheelchair in the house by Monday.  My energy levels should start rising but I was told by my Macmillan nurse it will be a lot slower to get back than the speed they went.

That's me upto date, I hope that the above has made sense and if any one else is on this chemo and noticed there energy leaving then tell your onco.  This chemo is extremely hard to tolerate and is tough on the body.

I wish you all a better New Year and truly hope that each and every one of us is still here to celebrate the next one.

My thoughts are with Tess right now, who having been inactive is now concerned about her breathing, I do hope it's a cold starting rather than Meso raising its ugly head again.

Mavis, Steve and Ray are also in the wars and I know we will all be fighting again so we can stay with those we love.  To the many others out there who have travelled this journey we will keep going and to those who have just joined the battle, statistics are just that, your body is not the same as anyone else's nor is your journey.  Take hope and keep it in your heart.

1 comment:

amanda said...

HI Jan
glad to hear there has been an improvement, let's keep our fingers crossed for a better 2014
love Amanda