Sunday - Part 2

I had to have a sleep, such strange dreams, again caused by the smoking tablets, but I have continued, hubby has decided to stop using them.  I think tomorrow though I will only take half a tablet and half again for the rest of the week.  They are making me sick and my appetite has gone.  Last night for tea I made a crisp sandwich, Friday night instead of dinner I voted for a cheese toastie, but the dogs ate most of it.

We have finished packing, my back is achy and my left leg tingling, I am so pleased I took the painkiller early this morning.  Will take the next one with dinner, really want some roast beef and Yorkshire puds.  Trouble is keeping my eyes open.

There was a stakeholder meeting by Mesothelioma UK last week, I didn't get and will be interested to know what took place. 

Things may seem quiet on the Meso front but I know that the NHS is working hard to help create a way forward for us meso sufferers.  Although by the time they get the drafts finalised and in to practice we will be looking at a couple of years.  I do know they are hoping to open more meso centres around the country, this means more access to new treatments and trials for all of us instead of just in London.

They are also looking at recording evidence based facts on patients, following through all treatments.  This is something I have rattled on about quite a few times.  The latest draft says that in 2009  2,200 newly diagnosed cases were reported.  That doesn't make this cancer rare but because it is not widespread across the country they treat it as rare.  If someone in Whitby turns up with Meso it would probably be the only case likewise someone in Lyme Regis. 

I am totally worn out now, need to go down to my mam's next, somewhere I haven't been for a long time, I hope my emotions will stand up to it, as the last time I went in I expected to see her sitting in her favourite chair.

Hubby's pulled out two chickens to cook for the dogs, this is so our sitter doesn't need to worry about cooking anything for the dogs for a couple of days.  Hope the meat stays fresh in the fridge for longer than 2 days, although if he cooks them on Monday it should be ok till Thursday.  Since we have started cooking whole chickens for the dogs I have gone off it.  You can certainly tell the difference between the buy 3 for £10 to the ones that we eat which are free range.  For starters the bones are solid in the free range, in the 3 for a £10 the back bone is paper thin.  I honestly don't think Chickens get longer than 16 weeks of life before they are killed, when I was younger they lived until they were at least 6 months old.  Mass food for mass population, I think the human race is getting to big.

On that note I will close, my blog is done for the day and probably my next up date will be once we arrive on board ship.

Take care everyone, keep that nasty cancer at bay.

Sunday - Part 1

I woke up early, 7.30, to the sun shining and blue sky.  I couldn't sleep any longer so came down and sat out the front for a while.  I came in to make a fresh coffee and believe me the weather changed in five minutes.  The sky had turned grey and a wind had picked up!

I had planned to pack yesterday but my back was so bad and I felt sick all day.  I spent the afternoon on the sofa sleeping.  This is so not me, if I take a nap, its usually a power nap of 30 minutes, not 3 hours!  Although I did get some ironing done.  Not that my back appreciated that either.

Am getting worried about my tummy, I know if it was meso it would show up on the screen but it is so big, I am still less in weight than a few years ago and my trousers then gave me some slack around the waist band, these same trousers are far too tight.  I would have tried to do some exercises but due to the back, well.......

The champex are making me feel sick, giving me thick heads and helping with making me tired, don't feel as hungry either.  Hubby is on about stopping them, he thinks our holiday will be ruined if we continue.  I don't know what to do, as it would be nice not to smoke anymore, although they haven't worked so far!  One day they did make the cig taste vile but then nothing since.  Being on holiday will break the normal routine of when we smoke so I am going to try and continue.

So today I must pack, de hair and try and be ready.  Our house sitters are set up, the dogs will certainly enjoy having Chris to tease, Bear is a terror with her and gets her up at silly hours!  I think he likes having a different person in the house.

Will let you know how I succeed later today, if I get the energy and my back lasts. Heyho onward we go.

Relief Not!

I went to an new physio and yes he also put me through the paces, he warmed my back up though before starting to manipulate the nerve.  He says I am at stage 3 but I don't understand whether that's stage 3 in pain or stage 3 where the nerve is.  I know should have asked.

 

He said to me I would hate him on Wednesday for the pain I would suffer after he had worked on me and I did, well I didn't hate him but hated the pain I was back in.  He has offered to do some more work on it Sunday but whether that's a good idea before our hols I don't know.  My back is still sore.  With the added tablets for pain relief along with the champex for smoking I've also had a thick head, nothing like mixing tablets and feeling rough is there.

 

I know I am moaning again, I do laugh and chat about life outside of pain, but my blog is where it all comes out.  I don't like talking to others about the meso, with the exception of my meso mates, but I don't really discuss cancer with family or friends.

 

Gary's niece stayed with us last night and made dinner, that was sweet, she's off to the passport office today but doesn't really want to go on holiday because she has to fly.  We've tried to make light of her fear of flying but it must be hard when you do have such a fear, like me with needles.

 

The Great Yorkshire Show is soon and she is riding in it, it would have been nice to go and see her compete but we will be on our holidays.

 

Well that's it for me today, wish I could say my back had improved and looking forward to our own hols. I guess at this rate hubby will need to do the packing as I was told no bending forward.  Trouble is at work you have to bend forward and even in office work there is still lifting, my files weigh a ton!

Day at Work

Yesterday was full on, I went to work expecting my time to be busy but not to the extent it was.  The other problem was I sat for too long at my desk, skipped lunch and by 2.30 I was in pour agony.  Even worse I had a meeting to attend, so I wasn't able to sit.

 

I came straight home from the meeting, hoping for peace and quiet.  Knowing hubby was out with the dogs I thought it would be perfect to lie on the sofa and try and rest my back.  No such luck, between Lexi crying and whimpering on and Bear constantly batting the sofa arm wanting treats I didn't get the rest I so needed.

 

Acute Mesothelioma pain usually morphine (if the right dose is taken) gets straight on top of the pain, not that I ever take the right dose!) but for this you would think taking 20ml would sort it out but no, the Ibuprofen did nothing either so I went to bed in pain too.  I see the new physio tonight so hopefully he will agree with what my Thursday am one has been doing.  Just the thought of going through more pain from tonight till Saturday morning isn't something I want.  The pain usually gets worse after a treatment.

 

I also felt rotten again yesterday morning, am sure the champex aren't being nice so am in the wars but for once not with meso!

 

After a very grey day yesterday the sun is back out this morning, lets hope it stays again.  Have planned to have my hair cut at 2.00 today, just a trim as I doubt I will be able to sit in the chair for any length of time!

 

I spoke of a meso friend yesterday who I am really concerned about, although she didn't sound as breathless her doctor isn't taking the condition serious enough.  I often wonder why we have such a hard time being treated, it seems so unfair that we are ill due to know reason of our own and that as a victim we get nowhere, pretty much like crime in this country.  The criminal gets everything the victim nothing.

 

I wonder again what life is about, why do we fight so much to stay alive, what is it about life we love yet everyday we do the same things?  Maybe I am having my morning thing today but at times I could easily just lay in bed and go to sleep forever, especially when in pain. 

 

On that note I think I should close the blog, may start getting to deep, not good on a morning!

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.

Meso -An Unfair Cancer

I have just read about my meso friend Lou and how she is now only offered trials in Oz.  We have come along way in our journeys, Lou I believe a year more than.  She too has had surgery and chemo several times and is far from giving up the battle to continue. 

 

What a friend said the other day, if we had diabetes then one cure may suit all but with meso we are all different, even the disease is different in each of us.

 

In the UK they have never really staged meso because it isn't that simple.  Say someone with T1 may have much more pain than someone with T3 but then T3 may die a lot quicker than someone with T4.  I remember J Steele telling us at a conference it wasn't worth doing, so if you are diagnosed and given a stage, forget it, it means squat.

 

What I always advise to anyone diagnosed, newly or not, keep records.  Since surgery I actually stopped doing that believing the meso would stay away for years, then last year I was starting to mark a diary up when pain came etc but again scrapped it.  After my chat with the lung nurse I know I am going to have to start recording temperatures, pains associated with meso, even down to when my eyes play up.

 

We all have an idea when things aren't quite right, but we don't always associate it with the meso.  If you want to learn if your meso runs in a pattern then keeping a record daily or weekly may help.

 

We are all a mixed bunch, us meso bloggers, four of us women have it and the wife's of two men blog on their behalf, then Steve in Oz blogs for himself, the only male I believe to do this.  We need  more bloggers to help those who are just diagnosed.  It isn't easy opening yourself up to the public sometimes but it is therapeutic because you get all what's inside your head out.  Although many do this on facebook too.

 

I haven't got lots to write today, the effect of losing friends last week still hangs over my thoughts, my own meso has affected my mood and knowing that maybe I have come to the end of treatments available isn't something to dwell on.

 

But its Monday, a new week and hopefully a better one, once I see the physio on Thursday maybe my leg\back will improve.  Just need to find a way to get rid of the heavy pain now sitting back in my chest.  Strange how just a couple of mm's can bring so much pain to a body.  I used to ask Debbie often if she had pain and her answer always no, until this year she was pretty much pain free.  I hope that is the way for many more but those who do have pain I feel for you, 13 years of meso pain has worn me out and prior with endo for another 14 years.  My body just can't take more.

 

On a bright note the longest day is nearly here, lets hope the weather remembers summer is here too!

Saturday Again

Well the sun was shining at 6 am but by 10 the clouds have come across and rain looks heavy on the horizon.

 

My GP and lung nurse both phoned with the MRI results, thankfully, and I mean thankfully, the meso isn't affecting my back.  I have a protruding disc between EL4 & 5 which has trapped my nerve root.  I have no idea whether they can manipulate this back in but I hope so.  I don't particularly want to spend the rest of my days in agony with this as well as the blasted meso.

 

Can't help but write that I am feeling rock bottom, with the loss of both Debbie and Helen this brings it home to us that we won't last till our old age but will be taken long before we are due.  It isn't fair that I won't get to claim my pension or become one of those old relatives you want to lock up in a cupboard. 

 

Our beautiful Meso Warrior Lou is also facing up to trying new treatments, a risky one too, having had everything on offer her meso just doesn't know when to quit either and on Monday is going to see about a new radical treatment.  I hope the information is good but more so the risks aren't too big endangering her life.

 

I would like to have attended both funerals of my friends but getting to Plymouth is out of the question at the moment, a long trip when sitting for an hour is all I can do, but I had hoped to hop onto a train to Runcorn for Helen's, under instructions from Barry I am to stay at home and get better for my holiday.  I guess Helen would have said the same.

 

Time I moved my body and went with hubby and mutts across the woods, hopefully moving my body will get my leg working properly and I may improve in mood!

 

I hope you have a good weekend, wherever you are.

A visit to MKMRF Head Quarters

Finally I managed to catch up with the hardworking Chris Knighton at her offices in Wallsend.  I've known Chris since 2005 when The Northern Echo posted an article on her and the charity she set up on behalf of her late husband.

 

Although she started as a coffee morning to support those diagnosed with our cancer she saw the need for research and has fought tooth and nail for us to ensure money is used for research in the hope that something can be found to help.  She also wanted the danger of asbestos to be known and has campaigned tirelessly for this.

 

It was an easy decision for me to dedicate the book to MKMR, I love writing and if it can possibly raise money then nothing could be better.

 

Chris will be selling 'The DreamWeaver's Choice' at the Strawberry Fair on 13th July as well as at the Newcastle Action Day.  Unfortunately I won't be there as we will be on holiday for both.

 

 

 

We need to support our Charities, too many can dilute the funds causing less to be actually done.  It is good to know that in the case of Mesothelioma there are a few only, MKMRF, The June Hancock and Mesothelioma UK, each one working in different areas but all for the same aim, to help us with Mesothelioma.

 

So back to Chris, even hubby came too and after carrying the to boxes into the hospital we had to drag Chris away from her work load to have a cup of tea and a scone.  The coffee shop in the GB Hunter hospital is really old fashioned, the food excellent, all served on china.

 

It was lovely to hear how she met the queen but as her schedule was busy I didn't want to take too much of her precious time up.   I don't know where she gets the energy from, yesterday she was up early and away for her meeting with the scientific board.  No doubt tomorrow she is off doing something else.  I know that it was today only she had enough free time for a catch up.

 

I know she will do well when she speaks in Parliament on our behalf in July.  I hope this time those MP's don't fall asleep or walk out like they did when the last Bill was read.

 

 

 

 

For Helen

A lovely photograph of a lovely lady.  Helen & Barry met up with Gary and I when we were all in LA back in 2011. 

 

In all the years I have been fighting I never thought I would still be here and both Helen and Debbie would have lost the battle before me.  Helen had surgery and thankfully was lucky enough not to have the same amount of pain from it as I.  She lived her life to the full with her wonderful husband Barry. 

 

My heart sank yesterday when Barry rang, I knew the moment his name came up on the mobile phone it was bad news.  My thoughts and prays are with Barry and his wonderful family and I truly hope that the 2 weeks the family spent out in LA will be one of the best times they had.  Renting a house where all the rich and famous live in town.

 

Another warrior also died yesterday, Colin Walker, he was only in his late 40's, he leaves behind a young family too.

 

These deaths are shameful, this cancer is criminal and yet asbestos is still used today.  Yes I am angry, I have grieved for two friends in a matter of days.

For Debbie

I woke early this morning and instead of my normal routine I went straight onto facebook, my cyber friend and Meso Warrior, Mavis messaged me within a few minutes to give me the shocking news that Debbie, our well known Meso Warrior from Plymouth had past away during the night.

 

Debbie was one of the first to use facebook as a way to bring together all those with mesothelioma and build support pages as well as awareness.  She knew that many found the health sites too hard to read and wanted a community for people to be able to air their thoughts or ask those difficult questions as well as supporting each other through their own individual journeys.

 

She has touched many thousands throughout the world, her courage at trying a new treatment in Germany brought her name to the attention of the press and news coverage.  She woke the South of England up to the fact that Asbestos was a dangerous substance and that many people would keep dying from it.

 

She was loved in the USA and honoured by ADAO in 2012.  Recently she accepted the role of Ambassador for the Mick Knighton Mesothelioma Research Fund.

 

Debbie was due to commence another line of chemotherapy but she had been suffering from a chest infection which started earlier this year.  Unable to take certain antibiotics the infection didn't clear properly, leading to her having to be admitted to a hospice to help control the pain she was suffering due to both the growth and the infection.

 

I am sure many of you will be as shocked and upset at this news as I am, but I am thankful I knew her and her courageous spirit at fighting mesothelioma and finding the time to be their for others was remarkable.

 

We salute you Debbie Muvmuv Brewer, Rest In Peace

 

 

 

MRI Jitters

It isn't often I get the jitters about going for scans etc, but it was an MRI scan that showed up my original mesothelioma, not that they knew it was that then.  Just my chest lit up like Blackpool illuminations with white spots everywhere.  But it was still another year and some before anyone really looked at it.  I guess because I had it done privately no one thought of checking it further than to see if I had fluid, which I did.  The scan was never looked at again until the surgeon had a peep and knew something was in there.  But hey that was some 10 years ago and this one is different right?  This one is to see why my back etc is causing so much trouble.

 

I came home from work crippled again yesterday, only sitting in my chair for 30 minutes at a time, I don't know whether its the position or not.  Having just got up I have been flat all night and my back seems a little better, hope it stays that way today.

 

I did go and lie in the sun, although I spent most of the time asleep, the additional morphine is making me tired, so last night I knocked the additional 30 on the head and will try a extra nerve tablet today.

 

Bear was a tinker yesterday and stole my tea, he was eyeing it cup up for ages on the little table so I had to give in.

I don't know about everyone else but the swallows around our garden have been flocking in dozens but they are so hard to actually catch on film as they don't stay still for long.  Hubby had his camera out all day and finally managed to snap one just before it took flight again.

Such beautiful colours you would never think they had blue wings when you see them darting here and there.

 

Mavis has being asked to round us all up and fill out this questionnaire on behalf of BLF for patients and carers alike to say what kind of treatment they would like to see.  It is short but please fill it in.

http://www.blf.org.uk/News/Detail/New-national-lung-cancer-survey-launched

 

I am so happy to read that my fellow bloggers are all doing well at the moment, Steve has been given the "Stable" news, Tess has gone for no 5, therefore must be having good results, Mavis is holding her own on the new treatment, Debbie is improving day by day.  I haven't heard from Amanda for a week or so, so I am hoping her and Ray are doing well.  One of the sad stories throughout face book is that of Janelle Bedel, her journey is coming to the closing chapters. 

 

It is heartbreaking when a person so young is diagnosed with this cancer, it is heartbreaking when anyone is, but especially more so when its a young mam.  Janelle has earned the title of Wonder Woman, I just wish a treatment to prevent death was here and available now. 

 

Excited to say the sun is out again, I hope for everyone else it brings the best out in you and you have a wonderful day.

I have also posted an article for mesotheliomahelp.net which you can find here:
http://www.mesotheliomahelp.net/blog/2013/06/mesothelioma-survivor-weighs-in-on-being-her-own-advocate

Beautiful Days Ahead

Hubby read the forecast out for the week, sun, sun and more sun!  The sky was a perfect blue at 6am this morning but I turned over and went back to sleep.  My back felt easier so I thought I would make the most of it.

We took Lexi and Bear over the fields, although only a short walk today as Lexi has to take it easy.  I am still giving her pain relief for her operations, poor thing but I must admit although she has stitches in her bum she is sitting better and I think amazed herself when she actually sat properly instead of having to tuck her leg underneath and flop down.  Removing that pile will make life so much more comfortable for her, sometimes the smallest things can make life so miserable.

 

We came home and sat in the garden, one minute top on the next off.  The clouds were heavy when they came but still it was lovely.  Late afternoon was a lot warmer and Bear decided he wanted to get involved watering the plants.  I loaded him chasing the hosepipe on youtube, wow I didn't know I could do that until I pressed a button and up it went.

http://youtu.be/V5D-flMs2r0

The little devil decided to rush between my legs when he was soaking wet, then Lexi took up the game.  My inside thighs were soaking so off I went and got changed again.  I am so pleased he didn't try to do this Friday or Saturday, I am sure dogs know when things are wrong.  Just wish we could read them as well as they read us.

 

Today I feel great, although I was stiff when I got up from sitting, a few spasms shot down my leg but nothing compared to where I was. 

I just hope when I finally see my onco a week tomorrow now, he will be able to put my mind at rest and tell me it isn't the mesothelioma pushing on any nerves. 

 

I am pleased to report that Debbie is back on the road to recovery with her chest infection and it seems Mavis is doing very well on her 4th line chemo.  They have used Gemcitabine or Gemzar as named in other countries.  This was on trial back in 2007/8 for kidney cancer with good results so hopefully may become another good one for mesothelioma.  From what Mavis has reported pains have ceased, always a good sign as that means the meso has been hit.  I haven't heard from Chris since he finished his 4th line, although he was given a totally different treatment, the 3 in 1 which is sort of on trial but not.  It's hard to believe that Chris and I were both operated on in August 04 on the same day by the same surgeon and both had mesothelioma.  In fact that week there were 4 of us, one gentleman lasted 6 months and I think the other a couple of years.  Chris had suffered with symptoms for 6 months, he even told his doctor he had worked with asbestos but had to wait for months before they checked him for mesothelioma.  I know old history but I guess Chris and I are lucky as we are both still here. 

 

I guess I should go to work next week, only 4 more then we are away, just hope my leg\back etc has greatly improved and I don't have days like Friday when away.

 

A meso friend has been away too and agrees with me, warmth and sun on our bones makes our meso pains fall into the background.  So nature if you are listening, please give us the summer we so desperately need.

 

I hope to all the meso warriors around the world are winning and keeping our man made enemy at bay, to those currently on treatment hold onto the fact it will work.  The sun makes life seem so much more brighter.