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.

Stomach Result

I emailed a private doc that I had seen to diagnose my hernia, Mr Vish, on Sunday, in the hope he will be able to do something with my tummy.  I have waited patiently for the NHS to send an appointment that was supposed to be for last week, but then what if they didn't do anything by our holidays - I would be snookered.  He emailed me at 8.00 Monday morning and said I could see him that night.

 

The weather was terrible here all day, it rained and rained.  I knew I had to go to my mam's and sort the house out as I am renting it to a friend for a couple of months while he waits for his new house to be finished.  It was emotional again, packing up the remainder of things and giving away the final things that adorned her bedroom and the living room.  I had sorted 4 boxes out that I thought we, as a family, would want to go through, and they have gone in the attic.  I only filled up once but managed to keep myself focused and not break down.  I still expect to see both my parents sitting there, but more so my mam.

 

I had an appointment with my back man at 3.30, after a quick stop at home off I went to Durham.  He can tell a difference with the muscles in my back, they are certainly relaxing and thinks the stomach is now putting a little pressure on it.  Once my stomach is sorted he believes my back will be ok, and will give a few exercises to ensure I keep it strong.

 

We stopped off at home to feed the dogs then off to Darlington to see the private doc.  He scribbled some notes down, examined me then told me I was getting treated on Friday morning.  He isn't doing it but the radiologist is.  He will then see me when we get back from hols to ensure it has stayed down.  If it comes back up he is more than happy to put a pin in it (joking).  I will feel rather embarrassed if it is all fat that I have suddenly put on!  Seriously though he tapped here and there and could here fluid.  He doesn't think its a lot either but enough to cause the problems of not feeling hungry etc.  I think maybe the water tablets are working, my wrists, ankles etc are looking thin, I think they are pulling all my fluid and pooling it in my stomach!  He told me they will help control the symptoms of fluid.

 

We came home and ate, I didn't realise how late it was, nearly 7.30 by the time I put the dinner plates on the table. 

 

Lou, our wonderful warrior in Australia has just received news that she is starting chemo again.  I am pleased that they are going to treat her again but also worried for her.  She has had bad reactions, much like me, to the chemicals.  She is being admitted for treatment, I guess by now she has already had the first lot of chemo, due to time difference.

 

We spent a little time yesterday texting, without saying much to anyone, her stomach too has been expanding and when she got her results her specialist told her the cancer is thriving, fluid in her abdomen too.  Please read Lou's story if you haven't.  She is an amazing lady who has been through more treatments than I. 

http://asbestosaustralia.blogspot.com.au/

 

Bear is still staying by me and last night kept resting his head on the side of the sofa and giving me those big brown eyes.  Although I think he was after doggie treats rather than wanting kisses!  AT the moment he is waking me up every morning at 6 am wanting to go out, he is consuming so much water during the hot nights he can't hold out.  I don't want to make him lie there bursting at the seams but I have to hope this won't form a habit.

 

As I wait to hear how Lou is, I know so many people are going through treatments or preparing too.  I am worried myself about starting something.  I want to get the cancer back under control but am terrified that maybe the chemo could kill me the next time round.  We are always dicing with death, whichever option we opt for, or if the oncologists are willing to give.

 

The meso community supports each other through these times, as well as when we lose a loved one to this terrible cancer.  We share the good news and celebrate and take the bad news to our hearts.

 

I must try and get into work, the sun has come out today so maybe I can fit into another of my friends skirts.  Oh to lose my tummy, shame Mr E couldn't get rid of his so easily!  I want to get him the Insanity work out discs but I have been unable to find them in UK outlets.  We saw this advertised in the States when I went for my last cryoablation, wish I had ordered them then.  I would have a nice slim hubby, well if he actually did do it!

 

Hope Steve has arrived at his skiing, Steve & Linda are filling their days doing something positive, Mavis is resting, Tess is still meeting her Targets, Amanda & Ray are having some chill time and Lou, hope the chemo is being gentle with you.  To everyone else, have a good day.  I feel uplifted and hope that I will stay this way.

 

 

Meso Just doesn't stop

Awareness about mesothelioma was non existent until a few people who had drive, time and were indignant about the way their loved ones died raised holy hell and started doing something about it.  In the UK that was June Hannock and Chris Knighton.  In the States Mary Hesdorffer and Linda Reinstein, Australia Bernie Banton and Lou Williams.

 

Without these starting points and these wonderful people many of us today would still be left in the dark about this terrible devastating cancer. 

 

With the www we had websites and they started to grow, with the introduction of facebook, groups were started, Jan Weston, Debbie Brewer, ADAO etc came to life.  Being a later starter with facebook I only blogged and believe me it to took me years to work out how to create one!

 

Even with all the connections, support and help available between each other still we are still dying.  We have lost a few of the recognised names in the past week, people who have helped spread awareness via interviews, newspaper articles and being there to help support others who are just starting out on the worst journey of their lives.

 

Janelle was only 37, a young mother - I feel that something has changed about asbestos, before it had a long dormancy period and was classed as an old man's disease in the UK. So if they worked from being 18 in the stuff and died at 60 that was 52 years the cancer had to grow.  Janelle was 37, it doesn't make sense.  I was 44 when diagnosed, I believe I was in contact with asbestos between 0 - 6 years old, Debbie was the same, although slightly older when diagnosed same contact age.  Now people seem to be contaminated with a shorter dormancy period - Why?

 

On a different note, my physio was extremely painful yesterday and I suffered the whole afternoon and night.  I didn't realise what a bad back was like until this, so I apologise if I have never been sympathetic to anyone in the past.  He keeps telling me it will take weeks, how many weeks can I withstand this pain, it is getting to me.  On top of the other meso pain I think I am crumbling.

 

Today is Helen's funeral, I hope her send off goes as well as Debbies.  I wish I could have attended both but travelling to Plymouth in this condition then to Helen's would certainly have caused further problems. 

 

At times I wish I was just back in my little bubble of blogging, then I only followed my fellow bloggers and kept in touch by email with my own meso circle, once we know more people it becomes harder dealing with the losses that occur.  Yet then you miss out on meeting so many wonderful people. 

 

Sorry the blog is disjointed, I guess that is how I feel right now.  I hope Tess has a good last dose of chemo today and sets her up for a long remission, Mavis has another dose today, lets hope this unproven chemo works.  To Linda & Steve, have another great time away and Amanda & Ray I hope you have a good walking weekend.  To everyone out there, please stay pain free and meso free.