Sunday, 4 August 2013

Still Down

I got out of bed at 8 this morning and I must say my body felt better for not staying in bed any longer.  Yesterday I didn't take the water tablet and found I visited the bathroom a lot more than I have all week but then what if I start filling up again, so I have taken it today with lunch instead of first thing.
After sitting in front of the computer this morning then showering I was hoping that the easterly wind that is wild would die down but no it stayed.  By lunch time the dogs were biting at the bit to go for their walk so I too bit the bullet and reluctantly went with them.
As we pulled up to the fields two young deer were watching us and I managed to get a lovely pic of them before they sprinted off at a fair pace.  Which is good really as we don't want them hanging around while some poacher aims his gun and takes them down.

I am still feeling lifeless, which is stupid.  Maybe for the first time in all these years I am feeling defeated but I shouldn't be.  Heavens Jan get a grip and start living again.

I had a different email sent to me this week, this is part of what I received.  I did read the article and think it is worth a read and consideration from the rest of you.

I wanted to thank you for sharing your story with all of us and send you an article we wrote for my wife's blog when she worked at a Nanotechnology company, right before it went bankrupt, unfortunately. The article explores possible links between Mesothelioma and carbon nanotubes - and, like your blog, calls for more research:

My friend Chris called up for a tea and inspection of my stomach.  I have been active though on the email and have left one for the doctor who diagnosed my hernia.  It will be a private appointment if he is able to treat me, but I promised Chris that I would ring the doctors and make an appointment with my GP. 
A few friends are a little irate with me for not wanting to see cancer specialists earlier than September and in many ways I totally agree I am dicing with my life leaving it another 7 weeks, after all many people have lost their battle in such a short time, but I don't believe my meso in the chest will get me by then.  It's this stomach I need to worry about.  I have noticed today that my wrists, ankles and legs are looking a lot slimmer, maybe the tablets are taking the fluid from everywhere else but my stomach! 

I didn't eat a lot yesterday either, 2 slices of bread and some fish fingers, I just don't have an appetite but I can smell the roast beef in the oven and have just put some potatoes on to boil to make some roast spuds.  Maybe I will tuck into a proper dinner with more vigour.
I have also discussed with hubby bringing a Macmillan nurse back on board.  I've had two over the years, both of which I had to introduce mesothelioma to them.  I haven't seen one since circa 2010, it could be later but I didn't particularly rate what they did.  Why am I bringing one back if I can, well they may be able to co-ordinate things a lot easier and instead of hubby and I having to sort things, maybe they can help.  If my onco isn't interested in finding out how my stomach is or sending me a follow up to see what happened about draining, which is caused by my lung condition, then who am I left with - no one.  I could go on raging about the lack of help the NHS has been but why waste the ink!
I am not the only one in this country with such worries, many of us are let down by the oncologist.  We are supposed to have a team in place who overseas every aspect of our health and treatment.  In easy terms these are:
  • A Respiratory physician
  • A Radiologist with thoracic expertise
  • Histopathologist & cytologist (not some one we see)
  • Clinical nurse specialist
  • Oncologist with interest in thoracic oncology and hopefully experience with mesothelioma
  • Palliative care specialist
  • Thoracic surgeon with experience in management of pleural disease
  • And Admin support to co-ordinate the multidisciplinary team.
Hmmm, how many have these in place?  Well, I can say I have A Radiologist - he is the same person reading my scans, I have a nurse and an oncologist.  I guess what I need is a respiratory physician who would then relate to all the other problems outside of giving me chemo.  I need someone to talk to, someone I can go through the different options available with.  I know in the past I have pretty much chosen my own route but I did use to talk with an oncologist, he was private at the time.  He has since dropped me as he closed his private practise back in 2011, that's when I went back to the NHS and found my current oncologist.
I also read on facebook that a man was diagnosed at 35 with meso. This isn't the first one I've read about, but it shows that this cancer is showing up more and more in the younger generation. I can understand mine as I was a 60's baby, but 35 you are talking about late 1970's.  Or is asbestos no longer sitting dormant any more?
Enough I hear myself yell, what does it matter, I have it, I can't get rid of it and it will kill me!  I was in HDU 9 years ago today, I had gone in for an investigation, which should have been 30 minutes tops, I ended up down in surgery for nearly 5 hours while my surgeon removed 2 large masses from my left lung and then carved out 20 to 30 mushrooms from my lung lining.  I was still non the wiser that I had cancer until 3 weeks later. 
I have done well, but many have done better.  It is lifting to read that another survivor is on 10 years or 11 years or even 8 years and that they have only had say one surgery, one course of chemo and one set of radiotherapy.  But I also get jealous, they have remained meso free with less treatments.  You may say I am lucky, your loved one might have had only 18 months and yes when you look at that I am lucky to still be here, but we get worn out fighting. 
I, for once, really want to put my head in the sand and hide.  My husband feels helpless - there is nothing he can say to make me feel better.  I have been the strength for both of us through this long fight, my gauge is on zero.  My friends have rallied to lift me, those who are going through this understand but it is unfair to put this on them as they are fighting too.  Those who haven't got an earthling about what it feels like just can't help.  My solace is this blog but then those who read it are fighting and I don't want them to get the negative vibes that I need to get out of my head.
Tomorrow is another day and by then, fingers crossed, my mood along with the weather will have changed.  I wonder, as you do,  I thought if I had a big belly would hubby get the hint of how awful it looks, I just hope my thoughts didn't make it happen!
My back is kicking off again, no white noise in my leg but pain across the lower back and towards my left kidney.  Maybe it isn't my back at all but the meso and the fluid that is causing this.  How I wish I had a scan and someone I knew who could read it and go right through the thing with me, explain everything that is going on inside my body right now.  Then maybe my mind would get a grip and I would know my enemy's fortress and know what is causing what.  If only ..........
I guess I have rambled enough, I think my mind is clearing.  If nothing else it is now empty.  Thank you blog for giving me this place to spill my thoughts.


Anne H said...

Jan I always read your blog and I am not fighting anymore. You can sound off as much as you like. I don't know what to say and I wish I could help but I can and will listen. My experience with the MacMillan nurse was not good. She came to see us when John got his diagnosis. He was quite well then and we decided she would visit once a month. John deteriorated rapidly and we called her in two weeks early. John was very ill, he couldn't lie down and couldn't get his breath. He was only getting two hours keep max with the morphine. He wanted to go into the hospice. When she arrived, she was quite snappy. She said John was making a fuss and was nowhere near needing the hospice. I insisted and she said she would get him in for respite for me!!! I was very cross. It wasn't about me. We got him in Tuesday lunchtime and he died 12 hours later. I did have an apology from her. She said she didn't think he was that bad. The nurses in the hospice were excellent, kind, caring and knowledgeable. I think that is the problem - so many are not. It s worth a try, you might get one who can fight your battles. You need help with your fight cos you are worn our with it. You need to be able to sit ack and cocoon yourself and let someone else fight your battles. As ever my prayers and positive vibes are with you. Xx

Jan said...

Anne I wish there was something I could say back. You are right though, some don't care and shouldn't be in the job. After all its well paid and doesn't necessarily mean they get people who care. Can't believe he went down that fast, that is frightening.

Anne said...

John was ill for a very long time - we just didn't have the diagnosis. He was never one to make a fuss and as he had heart problems he thought the breathlessness was his heart. He had lots of chest infections which he just thought were chest infections not clearing up.

When he got the diagnosis following the pleurodesis he improved. Then the other lung started and I think he gave up. I think it was very advanced when he was diagnosed. There was no offer of any treatment and ths was Papworth. It was too advanced.

Jan said...

It makes me mad to think of the pain he must have gone through and being a man they never go to the doctors when they should. I am shocked at papworth as they seem to be on the ball, especially with heart and lungs. I wish I could give you a big hug.

Anne said...

I don't blame Papworth. I think he got there too late. I blame Bedford. A complete shambles. I know what you ean about men. He never asked questions and just took whatever they said. I had to ask all the questions. The meso nurse at Papworth and all the staff including doctors couldn't ave been nicer but he was too weak for chemo. As you have experienced, it takes it out of you. John had had a triple bypass and he only had one kidney. He just wasn't strong enough for chemo.