Sunday, 28 November 2010

Snow, Snow and more Snow

Well Winter has certainly come early or did it ever really leave from last year.  We didn't get the hot summer as promised but hopefully 2011 will be back to the days of 1960's and 70's (sorry didn't know the 50's).  Snow in November till February then sunshine from April onwards! Oh that would be great.  No bugs floating around as the zero temperatures kill them off .. yes I'm day dreaming, no matter whether we have bad weather or not I doubt we will get the summers I remember in the early 70's where you had a sun tan and two weeks in Scarborough for your summer holidays felt like heaven.

I succumbed to the sore throat\sickly feeling and headache cold, it started last Sunday with a couple of nights of my throat on fire, I was careful and stayed away from work Tuesday onwards to feel my worst on Thursday and Friday.  Friday was the throwing up and yesterday it finally hit my chest.  So far the coughing isn't bad and fingers crossed it stays that way. 

It was good to have a chat with Debbie the other night and hopefully her health is on the up, especially once she gets her operation over next week for her throat.  It was also great to hear from Chris Knighton and Graham Brown.  Graham has just recovered from this cold\throat bug and I understand I have been lucky as he had a few weeks of it, a few days of suffering with it was enough for me.  When I was a kid I was never ill, I can only remember two really bad bouts of a chest infection, both when I lived in Greece in my twenty's then of course I had endo but I didn't get sore throats, colds, ear infections etc I was always bug free .. wonder what changed?

Cher has returned to Oz after three treatments from Prof V and hopefully that has dampened the return of her meso.  My heart goes out to Lyn at the moment who went on a new trial but was overcome by all the side effects, hopefully the short term she managed has helped not only to keep her meso at bay but to help the researchers sort out the problems for others to cope with the drug.

Did anyone once read an article written by Ann Widdecombe that said people shouldn't expect drugs that didn't offer them a cure and only bought a short period of life, she should take her own advice and get off strictly, she can't dance so therefore shouldn't be allowed to be in there when others who can are suffering.  I use to like Ms Widdecombe until her remark in the Daily Express and I still wonder today what gives someone the right to say who can have what drugs and how do they come to these time lines.  I have heard it is on stats but then again it shows how far they are out because Alimta only offered a max of 13 weeks additional time way back in 2004 based on stats.  Maybe they should look at calculating stats differently and I am sure it would show that additional time on alimta is a minimum of a year before having another form of treatment. 

I still wish we could have a national database and I keep thinking of how to create one, where we could pour loads of info into it and see how long something lasts between treatments.  The problem is that everyone is diagnosed at different stages of the disease and there really isn't any good markers for early, middle etc.  I remember when Dr Owens spoke to me after my VAT and he told me he had removed two large tumours and about 30 small growths - would that mean I was in early stages or middle stages?  Debbie was diagnosed in 06 but believes she had symptoms in the early 90's, the main start of mine was 2000 but I can trace back changes to 98.  Funny how it seems to grow slowly for years, you would think once it has been killed off a few times it would be even slower on return but it doesn't seem to do that.

I have requested a scan for January, this will be 6 months, I know I bug everyone about making sure its every three months and I have let my own slip the net.  I need to start getting myself back in order and no I haven't been for the flu jab yet .. another to do on the list .. but that doesn't mean you had better let it slip.

I heard from John Edwards who is over the moon with the donation of some new equipment which will help patients in surgery from losing blood, how wonderful that this has happened for his department, certainly will help when stripping our chests of this disease.  Since having meso I've had quite a few blood transfusions both in and out of theatre and anything that stops the loss of blood is a marvellous invention.  I am sure it will certainly be put to good use.

I was also pleased to hear that the family are looking forward to receiving a new member of the family after the loss of Rufus.  I also imagine it will be a wonderful Christmas for Andy Owen's too, with having the twins Christmas will never be the same for his family again.

I know its hard to appreciate things at times, especially if you are having an off day, I know that everyone has an off day, but when you have to deal with mesothelioma in some form or another the off days sometimes can feel like that out number the good days.  My eldest brother told me the other day that I expect too much from myself and keep pushing my body too far, I live for work, on chemo I worked, after surgery all I wanted to do was get back to work - my normality, yet on my recent offdays I had no heart for anything and started the should I or shouldn't I give up my job.  I am luckier than most in my position as I can link in from home, I can come and go but it isn't always fair on the company as if someone needs something urgently I can't always guarantee to be there. 

My new project of the houses is suffering, my website is half finished and needs a lot more work, the kitchens are kind of decided but I need to be on site to ensure that the 1st fix electrics is where I need sockets etc.  Somehow I have managed to get too personal about the kitchens and bathrooms, bad mistake.  All I hear is that the large home builders only use this or that and the size of houses are what people want, no they aren't -  they are what all the large builders have got together and decided.  Small houses, no space in bedrooms because they build 3 bedroom houses on 2 bedroom plots... we should all rebel against them and self build!  But this is now reflecting down onto the smaller house builders.  I noticed the other day how close new houses are next to each other, back in the 70's houses were still quite a distance apart and you always had room to build an extension on the side if you wanted.  These days you can hardly walk between two houses.  Even worse our site at Spennymoor is the same, the architects tell porkies saying that the planners want ex amount of houses built on a certain size of land .. is this really true?  Remember when Gordon Brown said we needed 200,000 new homes built in 2010 in most towns to  meet the demands, well 200,000 new houses were built and abandoned because of the recession .. where are all the people living who needed all these houses?  I think we should ban extending all towns and cities, new villages should be created at least 5 miles from any town and for expansion no closer than 2 miles between every new village.  This would cut crime, rebuild communities as no more than 3000 people would be housed in any one village.  School buses would be laid on, hence cutting back every child been driven separately to school, saving pollution.  Sorry on my high horse again and this has nothing to do with meso!!!!

On that note I am going to sign off and dream of a perfect Britain, where healthcare is number one, houses are homes, illness is something that happens but can be cured, crime is something only produced on TV and Ann Widdecombe is voted of Strictly!

Put some birdseed on your windowsill and enjoy watching the Robins and Blue Tits come and pick at them.  I will probably spend the next few hours letting Bear in and out as he loves lying in the snow, only problem is when he comes back in he has balls of the stuff stuck to him.  After his romp in the woods with hubby on Thursday he had to go into the shower to clear his feet, am sure he enjoyed it that much that he keeps trying to get as stuck with heavy chunks everytime he goes out.

Keep warm and well

Wednesday, 17 November 2010

Ups and Downs

Like everyone, the weather knocks me back and certainly puts me off going out.  On top of the cold I have been over working and ended up wearing myself out, hence 3 Sundays spent on the sofa feeling sorry for myself.  It scares me when this happens because I feel useless and wonder what I will do when I get to the stage that this is all that life has to offer.  I couldn't even find the energy to turn the computer on, but then you find yourself getting frustrated with yourself for not doing anything.  I do wonder what I would do to keep myself active when things start going downhill, I certainly knew that if I felt like I did on those days I wouldn't have the energy to fight. 

On a brighter note, or not, Lexi came into season and poor Bear has been beside himself these last 4 days because she is ready.  What beautiful pups they would be but alas Lexi is to old and Bear to young.  He has no idea what he should be doing, his idea of romance is licking Lexi's ears constantly or having his nose attached to her rear.  He stands panting next to her and driving us all mad.  I took him into work Monday and Tuesday to give him a break.  Hubby showered Lexi down to get rid of all the salva off her back and ears and hopefully block the aroma she is giving off, but it didn't work.  As soon as he came through the door he was at her ears and licking as if his life depended on it.  She is nearly over the period of come and get me and is back snarling today when he gets within biting distance.  Just hope he starts cooling down as I don't really want to get him done.

Another landmark that happened was my nephew's 18th.  This was something I didn't really think I would reach and I was as proud as punch when we all went out to dinner.  I hope that I get to be around to see him graduate from university.  He was trying to explain a joke about quantrum physics, overcourse it was lost on me, even moreso when he kept laughing to himself when he was telling it. 

Christmas is once again round the corner, I know that many of us don't particularly warm to this time of year, we have lost someone or we have been going through treatment at this time of year, but again it is always the start of new hope in the New Year and it's one in the eye for still being alive. 

I read something the other day about funding for drugs that only buy a period of 6 weeks additional life.  Again this is based on stats and Alimita was only suppose to give an extra 4 months, how many of us had an extra 12 months minimum.  I know I said I shouldn't get into the politics of it all but my blood is boiling again.  No funds because the NHS has to make cut backs, so the top boys in management ensure its treatments that everyday people will loose and they keep these stupid placed people employed where the higher wages go and us everyday people don't have a clue of their existence.  Under the NHS is your nutritionists, Liaison Managers etc.  I remember once even reading that the Trusts employed people to visit kitchens in hospitals to tell them how to serve food ... that's the jobs that should go and use that money to keep the nurses, doctors and treatments going.  When they say they can't afford to do operations, how, the surgeons are already employed, the theatre nurses are paid .. where does the cost come into it?  If no theatre is working do they stop paying the surgeons and nurses?

I haven't been for the flu jab yet, I keep meaning to ring up and get an appointment - So remember go and get yours.  I am also starting to worry that I haven't been given a scan appointment and only hope I get one in January, that will be a 6 month one, but I have a feeling it won't happen.  I have told hubby that if I have recurrence then I will sue the hospital\chest doctor for negligence as he/they are responsible for knocking my scan back.

Hopefully I will come across alot more happier next time on line