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

Jan

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

Jan

Where have I Been

Time has flown and for once I haven't been offline because I have been ill, instead I have thrown myself into my new duties at work.  Although I have been suffering and am putting it down to far to many hours spent over the computer.

I had some sad news recently from John E (my surgeon) who lost his pet Rufus while on holiday.  My heart goes out to him and his family, if there is nothing worse than losing a member of the family it is loosing your fully fledged member of the family (your pet). 

My meso mate down country has let me know about a trial she may be participating in, my fingers and toes and anything else I can cross will be as we need more on the market but trials always seem to have the habit of dying out before they get started or we hear no more about them.

I also heard that the Action Day was exceptional this year with many people being unable to attend due to lack of tickets.  In one way that is really great but in another really sad as that means there are more out there with this terrible cancer.

I managed to finally get my written report which had loads of medical references but nothing that I could get excited about either way.  Yes there is changes, no they aren't sure of what, yes recurrence but remains static.  Hum, haven't had the scan and Dr Abtin is desperate to view it.

I also have Karen's story to get published and owe her many apologies and today hubby found a report about another new chemo going on trial.  He has requested further information and once we receive it I will get that up and loaded too.

Better get back to my drawing board, hopefully John has opened the doors and found a new member of the family to adopt and keep him fit after hours of being slouched over our bodies in theatre or over his desk reading reports!

Keep well everyone, and thanks to BB for leaving a comment about indigestion remedies, I certainly will be giving it a try, this pain is now lasting 24/7 without going, even morphine is just dulling it for a couple of hours.

Jan

Back to Earth

Haven't had much good news since arriving home, one of my meso mates isn't getting anywhere yet with treatments for the return of his meso.  It seems Dr Abtin can't help as there are too many patches, guess it would be extremely expensive and dangerous trying to freeze the entire area, and I feel quite bad about it as I thought cryo would keep on top of such a return.

After having such a wonderful week of hardly any pain the first morning back in our own bed brought on aches, so hubby swapped our beds around and we have moved the tempo one out and brought back in our soft one.  I must admit it is much more gentler on the bones but still have pain.  The heart\throat indigestion feeling is much worse here too.  Have started to wonder if it is indigestion really as am drinking glasses of milk before bedtime and it doesn't seem to help.

On a bright note, we had a wonderful time in Dubai and it was great meeting up with Benet and Jeff, this is Benet and myself after a rather filling meal at Junsi.

Since coming back I haven't had much time to myself as I have been busy at work.  On Wednesday I didn't feel that good and I had visions of the last time we were on holiday and ending up in hospital for the night but it passed.  So I stayed home and worked in the new cosy office, only to get started and we had a power cut from 11am till 8.30.  Our neighbour came to our rescue and fed us with warm soup and a casserole (we are all electric now, not even a gas ring to help).  So not much done but it gave me a chance to wind down.

The thought of the long drawn out winter ahead is making me feel low.  Hubby said lets buy the Euro lottery tickets and if we won we could buy a private jet and take you off every weekend to the sun .... what a wonderful dream but in my life nothing has ever come easy so I doubt we would ever win big, we did win £6.80 on Friday's (a far cry from enough to buy a private jet that can take you when you want infact I don't think it would pay for a return ticket to Darlington).

I hear the Carer's day went really well and many people were unable to get tickets, these events are good for getting out what is going on, yet it still seems not much is being done in the way of treatments for meso.  Which reminds me I still haven't had my scan results from August or a copy to send out.  I can only hope and pray it is fine.

When you feel rough you do imagine the worst, yet meso can be growing and you feel no different.  A point Hilary brought up the other day, how come it can be so slow growing then suddenly change into a rapid aggressive cancer? 

I am being distracted as I have put some bird seed on the window sill and as I am sitting here writing I have 3 sparrows, one blue tit and a green finch all nibbling at the seed, two sparrows are fighting as one won't let the others in!

Think I had better go and fill up the bird feeders to save bloodshed on the windowsill. 

Keep safe and well

Jan

Hot Weather - Strong Winds - High Humidity

I thought what better way than to unwind after a long day on the beach than write a bit on the blog!  (Sad I know).  I have to say that I have felt so much better, the bones haven't ached as yet and the hotel have provided me milk so a bottle before I go to bed is helping and the sun and heat is marvellous.  The strong winds are a little  problem as I need to keep my head down so as not to be overwhelmed by the breeze.  I must admit though that the humid air last night did make breathing a little harder and at one point I felt like I wasn't breathing anything useful in.

What a small place this world is, sitting next to us on the beach are a mother and daughter, after a little bit of a chat we discover that my nephew goes to school with her daughter, the odds of that happening are what? 

Had a few frantic minutes in the airport.  I was carrying my tablets in handbag for safety but got stopped at the xray machine, my handbag showed that I was carrying something illegal.  My heart stopped .. I have all the paperwork in handluggage but lets face it you have armed guards and they open your side pocket and 40 morphine tablets fall out .. not good is it.  The young lady was quite slow at picking through the internal contents in the middle of my handbag and the young solider asked if I had a laser pen .. I don't even know what one is but I pulled our my E cig - it had to be destroyed and I was led off to the detained goods office.  As we were walking behind the solider I made hubby open up the hand luggage and threw my tablets in!  I was envisaging a strip search, my tablets been taken away and kept there till morning when they could phone the Department of Drugs to verify my permission to bring in my medication.  But then you start wondering if they have changed the laws since last May and you have to keep reapplying for permission.  Thankfully my e cig was the only thing taken and my handbag was not checked again!  I don;t know what it was that sparked the interest although I did have hubby's lighter in there as well.

Have already made three calls home as Lexi is having a little bowel trouble again, the good news is that she isn't biting her bum or her foot and the girls are getting loads of loves, especially off Bear Boy.  I forgot to prewarn them about his nightly habit and yesterday morning I woke up thinking I should have warned them and found myself laughing.

His habit, which is now nightly because I laugh so much, is trying to shove is nose up your bum when you are trying to get ready for bed.  You are fighting with your clothes to keep his nose out and for you to get changed, it looks like something off a dance floor routine turning this way and that.  He wags his tail and finds the whole experience exhilarating as he has me dancing around him one hand holding the front of my top down and the other holding the back down.  It can take upto 10 minutes to get from the toilet into bed dodging him this way and that.  So when I rang yesterday I said 'by the way Bear has this habit on a night of ' and I got back 'We know, we experienced it and thanks alot for the warning not!'  Funny how he doesn't do that to hubby ......

Time for our Peach Wine (non alcoholic) and a canape or two before a quick shower then out for a couple of drinks.  Looking forward to meeting up with our friends over here, unfortunately that won't be till Saturday but at least we will have some kind of suntan by then.  Sitting in the shade with factor 50 on. 

Well had better get a move on, shower is calling to clean my skin of the sand and lotion.  Will probably loose another 300 hairs from my head when I try to comb it after washing it.

From a very happy meso person who isn't in pain (for a change) have a good night

Jan

Sunshine Calling

All it takes is a couple of days and I bounce back to being my annoying self again.  My couple of day's of self pity bugged me but am pleased to say that I am feeling physically a little better (daren't say too much as I seem to have the Midas touch on myself).

My eldest brother's CT has come back clear so he has no asbestosis and can't understand how when he has some of the same problems our Nev has.  But I have to say I am really pleased they found nothing, two of us with chest disease is bad enough.

Am dreading leaving the dogs for the week while we are away but I know that the girls will do a good job of  looking after them.  Chris is treating the experience as a holiday .... I don't think she realises she will need one after looking after them!  Thankfully Lorraine is going to sleep over to so Chris won't have to manage on her own.  It's quite strange when you stay at someone's else house when they aren't there.  I use to dogsit\housesit for both my brothers years ago and found it odd being on my own without them around.  At least if they fall out over what to watch they have a choice of  two lounges to sit in!

The sweats seem to have calmed themselves down again and at least for the last 2 nights I have had a reasonable dry'ish time, just damp instead of soaking.  I think the night sweats take it out of you more than you realise.

Have been back out with hubby and the dogs over the fields the last 3 nights and have really enjoyed it, although am wearing 4 layers of clothing already.  So much looking forward to the sunshine and heat that Dubai will give, then the only problem is coming back to the cold weather here.  I am worried about flying, if we have to circle again will this affect my lung like last time.  I know one thing if I have the same sensations as before when I get home I head straight to my mother's and borrow her oxygen.

I am pleased to hear that Alan, having done well on chemo, is off on his hols again.  Danny is also doing well and is expecting their first grandchild, no doubt will be doing a lot of driving to spend as much time as possible with the baby.  It's fingers crossed at the moment for Cliff, but I know he will be ok - he is so positive.  I am hoping that he will go under Dr Abtin's care and have this patch cryo-ablated.

The Carer's day is October 2nd and unfortunately I won't be able to make it.  It would have been great meeting up with virtual friends and putting name's to faces.  I am sure it will be a good day, I wonder what the USA speaker will bring to the table.

Better get a move on, haven't done anything yet this morning.  Keep going everyone, we need our moans to keep us sane but we must always try and get back on top of them .... I will start to worry the day I don't bounce back.

Jan