A Man's View - Refreshingly Different

I have so much to catch up on with the blog but before I start I received a wonderful email this morning from Steve who lives in Austrialia.  He was just been diagnosed with Mesothelioma 4 weeks ago and has started a blog to record his thoughts and treatments.

Steve has just started Chemo and I hope you can send some positive thoughts his way.

Find his blog on

http://mymesothelioma.com.au

On top of that I heard from Andrea (Travel Link) which I have copied below

Hi Everyone

I would just like to thank all of you that have sponsored us to date. We have managed to raise £1250 so far. If you haven’t already sponsored us, I urge you to consider doing so. Unfortunately since my first email my Dad had his routine 3 month check up and we found out that the NSCLC was growing we are awaiting the next course of action following on from an urgent CT scan.  So it is even more imperative than my last request. Please try to give anything that you can. http://www.raceforlifesponsorme.org/Red-Hot-MesoWarriors . I have also attached an up to date thermometer of where we are up to now with our Charity Donations.

For the months of July and August any bookings that Travel Link make we will be using our ‘charity donation’ for our Race For Life Campaign. We have loads of great deals on from Uk based trips to far flung exotic places so please contact us for any trips you may have in mind.

Once again a huge heartfelt THANK YOU to everyone who has made a donation it really does mean everything to me. I have been overwhelmed by the response.

I haven't heard anything further from Dr Abtin to say whether Harefield hospital are any further forward in sending a team across to UCLA and learning the benefits of cryoablation and finally starting to do it over hear.

I have a friend also in Australia who is looking into finding out where she can get Mistletoe from if anyone could help could you please email me with the details.  As you know Mistletoe is something I have never tried or used

Keep your chins up and stay positive, once we finally get some sun I'm sure we will all benefit - after all I have been counting down since last October for some sun I just hope we get some soon.

Jan

Raising Money

As promised, better late than never a wonderful photo of Heather and her friends, not forgetting the beautiful dogs who all completed the Race For Life

It certainly looks like the labradoodles enjoyed it too.

On behalf of Heather, (far left) once again thank you for supporting her.

Chris Knighton Deserves her Recognition

I wish I watched the news more often but as usual I missed it so when little Ann told me at work that Chris was named in the Queens honours List for once I felt sad to have missed the local news and see Chris receive her award.

Chris together with the help of Anne has worked so hard getting the charity recognised and indeed getting money raised to help towards research of this dreadful cancer.  Working out of her house for many years with determination and guts.  I believe that without Chris and her team we would not be as far forward battling this cancer as we are now.

She has inspired so many of us to raise money on behalf of the charity, When Claire and I arranged our Auction Dinner and Run back in 2007 Chris once again took the stand and had to relive the sadness that brought her to this position.  She has told her story from the tip of Scotland to the South of England and I am sure with each telling it doesn't get easier  for her the memory is always kept alive with the horror as well as the good memories. 

It was because of her message board I finally found my first meso friend.

WELL DONE CHRIS - ITS SO GOOD THAT SOMEONE SO CARING RECEIVES THIS

Time flies by with mesothelioma

It was wonderful to read how far Steve and Linda have come since the days of his first diagnosis and the chemo treatment that left them unsure of how things would go or if they had a future.  Here we are three years later and both have realised dreams they probably wouldn't have achieved as yet.

For me I look back and a lot of things haven't changed over the last 8 years, although going through tough surgery twice, losing my gall bladder in between, chemo, radiotherapy and cryo I have pretty much kept the same routine and worked.

I hope more of you have done the wonderful things that Steve and Linda have done rather than follow my path.  What memories have I left for Gary.  Our first year we travelled so much that we both have a hatred of airports.  With our last break in Dubai and the worry they were going to see my morphine and lock me up for the night while waiting confirmation of my approval for carrying the stuff I doubt I will ever get back to visit our friends over there.

We were expecting the Olympic torch to be lit as it passed from Middridge to Newton Aycliffe a mere 1 mile yet the torch was back on board the bus as it passed my mam's house.  We did however wave at the police and the torch bearers as they passed us in their entourage.  It marked the day that will probably never happen again in Gary's life time let alone mine.

Once I download the camera I will put our one and only photo of it on.  I do think we may have been recorded by the BBC, we noted they had a live camera running even through the empty countryside, so if you saw 2 men and a woman stood in a drive way between Middridge and Newton Aycliffe that was me and yes I did have my big blue coat on, we hadn't been long from walking the dogs and it was windy and cold over the fields! 

I have been a little lazy this week on other things because I have started another project and everything else seems to go on the back burners until I nearly finish it.

Keep well everyone, I know my friends on Chemo probably don't feel that good but keep with it, if in doubt remember Steve with3 years, Chris with 4 and so many others out there with good results.

Today

We spent the Jubilee pretty much in the fields, hubby convinced me to take my camera and I spent hours trying to capture those long tailed tits or Black Caps.  The dogs loved it because instead of tramping round the fields we kept stopping and lying in the grass waiting patiently for birds to fly onto nearby trees.  Overall it wasn't as tiring as a normal walk but I was tired from all the fresh air we had. Bear especially loved it as he kept trying to knock me over and pull my arm, I am sure he was a rescue dog in his previous life!

I know most of you will have attended street parties and for those who live in London had the wonderful day by the Thames and of course the concert. 

I was sad to read that Ray has spent a day being over tired, this miserable cancer can sometimes spoil the most precious of times and that is what is so annoying.  Along with the tiredness comes the pain which is wearing too and unless you experience both it is so difficult to explain to others.  I have found recently that my armchair is much more comfortable than the bed but then I only nod off occasionally in the chair and haven't slept all night in it.  I have started using a small pillow for my legs because they ache so bad but even that hasn't really helped and the thought sometimes of retiring to bed isn't a happy thought at all.

Yesterday as I was trying to get close to a young deer hubby took the dogs the other way so as not to disturb the thing, he was probably out of my sight for 15 minutes and as I made my way back to him and the dogs I saw him running towards the fence.  My heart was in  my mouth thinking that Bear had gone through to where the cattle are.  The grass is so long I couldn't see the dogs, then in a flash of an eye hubby went flying, arms flaying as he tripped and disappeared down a hole.  I tried to run but found the going extremely hard, running in long grass when you're fit is one thing, running with one lung working is quite another.  As I approached he was picking himself up and checking his prized camera and lens, I finally reached him breathless to find out that he had spotted the buzzard and was running to get a better view!  Next time watch where you're walking was on the tip of my tongue. 

I wish I had stood still and rolled the film so to speak because flicking through my memory of it, it was a scene off You've Been Framed.

That's all our news from here, just had a quick phone call to let me know an old friend of the family has died from lung cancer, he was only diagnosed 3 weeks ago.  I am pleased it was so quick as he hasn't had to suffer but at the same time shocked, although he was in his 80's. 

Back to normal tomorrow, I do hope Ray has a better day and to everyone else No Surrender

Celebrations

It must be great to live among all the activities in a city, watching the Queen on TV floating done the Thames it makes you realise how isolated sometimes living the in countryside is.  When the weather is bad there is always something still to do in town, whereas if you live in no where places you need to travel quite a distance to visit the Theatre, the Cinema, Art Galleries etc.  Even popping out for a nice romantic meal means driving quite a few miles.

I ended up having an a long week again at work, finishing around the 6pm mark on an evening, I am so pleased the weather wasn't hot otherwise I would have been annoyed to have spent the full week stuck inside missing out on the sun therapy my body craves.

It is hard to explain pain and how wearing it is.  I know I have said many times but before I was finally diagnosed and suffered what I didn't realise was pleurisy for all those years I was terrified of getting into my 60's and 70's having to cope with the pain every 3 months.  Hubby has a touch of arthritis in his toe and when it sets off he has a small sample of what I go through every day.  The biggest difference is he can take an anti-inflammatory and his pain goes, I have to take morphine and hope it goes!

I haven't heard much from my meso circle over the last few weeks and can only hope that all are well, I haven't managed to email many myself and apologise for being lapse in communicating.

My next big decision is whether we still do our cruise in September, this will be my big holiday before I start chemo, not that I have agreed any dates with an oncologist or trial Prof.  I haven't the faintest idea of what I am really doing but know that after the cruise I will be ready to put my body back through whatever it takes to be well again.  I quite like the thought of the trials where they only last a number of weeks instead of taking treatment forever and a day like a Phase I.  Although the other side of me is thinking maybe just take the golden standard again but only do 3 cycles of it instead of the normal 5 or 6, but even 3 can take it out of you.  But then there is the other question, will I be able to have the chemo! Then the fear is what if the golden standard doesn't work then what, and those are the avenues of thought I really don't want to go down.

I would really like to do the cruise, my only true worry is that once we get on board the ship I just can't be bothered to do anything, sometimes when you aren't fit you do have days where you have nothing to give and the effort of trying is too much to ask, you hate yourself for feeling this way but can't do anything about it!

My office window at home looks out onto the front garden and recently I noticed a Song Thrush as a regular visitor.  By chance on Friday I noticed that we had 2 of them and they kept darting into the corner of the garden.  I grab my camera and had to take a shot through the glass, not realising at first that they were feeding a young chick.  Unfortunately the chick ate behind the leaf!  We were going to clean this corner of the garden last weekend, so pleased we didn't.  There's also a little sparrow sitting with dinner in its mouth as well.  I do love it when you see nature at its best.  Which reminds me I haven't managed to see the Deer and her calf, today we went to the fields but no sign of either.

I think I shocked hubby because the sky was grey and the breeze here was strong and I said right I'll have a shower (lazy morning in my dressing gown till 10 am) then we'll go for a wander.  Funny how Lexi knew what I meant because as soon as I came back down stairs she was leading me into the utility room to get my boots, hat and gloves (dog ones) and started singing (German Shepherds do this when they are excited).  Bear and her seem to enjoy the walk more when I go with them than when they just go with hubby

Well that's all for tonight, I am due a flat out on the sofa, its already 8.15 and I have no idea where the evening has gone.

Till I write again I do hope that everyone with this miserable cancer is having a good weekend, that those who care and love us have some time off from worrying and mostly that our miserable meso stops dead and stays that way.