Ring in the Year

I just had a peep at what I wrote last New Year and believe it or not I haven't done anything that I said I would try and do.  I do keep procrastinating I have come to think this is normal for everyone not just me. 

Examples:
 I had an email over Christmas from an old colleague who had prostrate cancer last year and I promised to visit, he is now back abroad working! 
Going to more meso meetings - haven't managed one this year
Doing more with friends - hum
Working Less - kind of achieved

But seriously we all treat life the same, we make demands on ourselves that we just don't keep, we promise ourselves we will find time, but time doesn't slow down infact I am finding it goes faster.  I use to be able to accomplish all sorts of things during the day, these days it takes me 90 minutes to pull round on a morning, if I had to rush I don't know what I would do.  I guess age also comes into it but I am only 50 and should be a lot fitter than that.

I am so lucky to still be alive and I do count my blessings about that but sometimes I don't act like it.  I hate pain and I hate mornings when I wake up and feel crap-my mam says she feels like that everyday but she's 84.  After having her stay for a couple of days it frightened me, am I as negative as she is.  It was hard work with her and I hope that I'm not so hard to deal with should my health take a downward turn.

To ease my pains the last couple of nights I have taken temazepam to relax my muscles and  have woke up with less pain which in turns makes me feel much brighter, albeit, I rose much later than usual.  I don't want to go down the route of taking tablets to feel fitter on a morning but they certainly helped me yesterday.

I remember when I use to go through my 3 monthly sessions and I dreaded the thought of coping with them in my elderly years and I use to wonder how people with joint pains carry on day in and day out, but you have no choice.  Life is so precious yet what do we really do with it? 

My cousin never wanted to live over 50, unfortunately she got her wish and died at 49, she said she never wanted to get old, I on the other hand don't want to be old and in agony but I do want to get old.  The thought of not being with hubby and the dogs, watching the snow fall or sitting in the sun reading a good book is unthinkable but I am still not doing enough with my life.

On that note lets hope that 2011 is the year that I actually start to do more and accomplish all those things I never seem to find time for.

Wishing you all a healthy and happy 2011
Jan

Survived the Day

I don't know where I managed to get all my energy to keep going over the last couple of days.  My mother can drive a saint to distraction and she was staying with us for Christmas.  The first day was trying and every time we left the room she would start shouting "Jan".  I don't think I have done so many rounds in our house for a long time.  Christmas Eve she was calling out at 5 am for a drink, thankfully in a way she did as I discovered we had no water!  Hubby and I stayed up trying to get an answer on the NWL hot line but we had a recorded message played for some 90 minutes, I ended up leaving him to it and returned to bed.  Nevertheless, we were up again at 8 as we had dinner to do for the family.  Thankfully we had filled pans of water with what was remaining in the taps and by 9 the water was back on.

Lexi decided she wanted her presents before anyone else and started hunting around the tree for anything that smelt like food, Bear didn't bother as he didn't understand what the excitement was all about.  With gift in mouth Lexi took great joy in ripping off the paper and breaking into .. thankfully .. one of her own bones!  We gave Bear a present to open and he didn't have a clue but after Lexi continued with opening a few more he seemed to get the jest and started on one himself. 

By the time I got mam up, washed and dressed and settled downstairs the time was 11.30 and time for Adult presents.  Dogs were sorted, veg's prepared, Turkey had been cooking slowly since 10.30pm Christmas Eve and was looking good, the Pork had gone in at 9.00 and we were on schedule for 1.30 pm lunch.  Gary's family arrived early and we were still cooking, it was a great family occasion though and we both enjoyed spending it cooking. 

I hope you all managed to have a fabulous Christmas, for me it was another one I shouldn't have had which makes a difference.  I can't believe it is only two years in January since surgery but I certainly feel like I did more in 2009 than I have done in 2010.  You do forget how valuable your life is when you start living normal again.

To all of us I hope that we have a health 2011 and that the worry of mesothelioma stays in the back of our minds while we get on with living.

News from America

Debbie and I received a wonderful email from Linda in the States to let us know her sister has done well since having surgery and is now ready to undergo radiotherapy.  None of this would have happened if she hadn't found Debbie's site and email address and Debbie then put her in touch with me.  This is why Meso circles work, we are all there to help.  We have some choices these days, but as we all know from experience they aren't always broadcasted by the doctors who are treating us.

On another bright note I found out on Friday that my Heart is actually better than it was earlier this year but on the otherside of the coin I still haven't any answers to what is going on in my chest area!

As for Christmas, apart from getting most of the cards done (am sure I missed the deadline for abroad) and have picked up a few things I am well behind.  Hopefully will get some time on Wednesday to do a little shopping!  The thought of going out into the cold is what is stopping me .. I am such a wimp!

We did get the trees up on Sunday and I thought Bear would be in among them pulling at the decorations.  The first time he went to sniff one Lexi have the upper lip so he has stayed away.  Our Tyke use to get so excited when the tree went up and would start being on guard over it, she knew that presents were on the way and she loved opening all of her own.  In her later years she started opening ours so we had to keep them all locked away until Christmas morning.  She was amazing to watch as she tore through the wrapping paper and peeled it back to pull out what was inside.  In Tyke's day Lexi didn't really bother but now she has gone I think Lexi will become like her.

Thanks for the comment about stairs and newfie's, but the steps are outside (3) in the garden, which bear always seems to want to trip up on. 

Must get started on Christmas

Jan

Heart Scan

Am I pleased to be over my chest infection, but stupid me will probably have a cold again by Friday!  I had to go to site on Monday and Tuesday and you know how cold the weather was.  2 Hours I spent on site and apart from standing in the cold shell of one of the houses I was up and down 2 flights of stairs constantly.  On my final trip up and down I felt dumbstruck.  I couldn't talk, I wasn't panting but I felt like I had nothing coming in or going out.  It took about 5 minutes before I could find myself uttering a word.  One of guys who was on site with me is fully loaded with cold today - I am just praying I don't get it back otherwise I'll have hubby giving me what for.

Tomorrow, all being well, I hope to finally get my tooth fixed, this repair job has been on hold since last May, then when  finally got back to the dentists I had another problem so he fixed that, I had to cancel the last appointment again because of my cold so hopefully tomorrow my shattered tooth will have a nice new filling and have no holes.

Friday I am going to hospital for these heart tests.  I am just hoping they are doing one of the ultra scan tests for the pressure, dear God if I had to go on an exercise bike I think I will struggle, and if they put me on one of those running machines I will be flat out and they will need to revive me!

I finally revamped the website and put Karen's and Hilary's pieces on, so am quite chuffed with getting something done.  I haven't had that much new information to update anything else but it did need a bit of a spring clean and hopefully the buttons work this time!

Bear has managed to become a hop along again, he stumbled up one of the steps and he is holding his left leg this time.  I wonder if all extra large dogs do these things.  Although he is wanting to bite my hands like they are going out of fashion.  I say 'No' and he wags his tail.

Am still waiting for the scan date, my GP rang last Friday out of the blue to see how I am and when my next scan is due.  He was a little shocked that it is some 5 months since my last one and thought I was getting one every 3 months.  Hopefully he will also chase this up.

Back to doing some paperwork, hope you are all well.

Jan

Heart Explained

I emailed my docs for an appointment to see Dr Murphy to discuss my heart.  I met Dr Murphy when I had heart failure back in 2009 after Mesothelioma Action Day.  These pains in my heart area are worrying and although it is great being alive it does get you down when you get up everyday in pain and feeling yak and no one really understands.  Plus it doesn't help that you feel guilty moaning when after all you are still here against all odds.

Last night we all ventured out for the meeting, I tried to explain the pains that I have been having, I must admit I do find it difficult to convey pain into words, my china man was my best at explaining but these pains aren't like that.  He duly listened and wrote notes here and there.  He did explain that what I explained didn't really match an ulcer either and it certainly didn't match that of angina or a fatal heart attack on the way.

He had pulled up my previous records and was able to explain that after surgery the heart had moved and twisted slightly, which makes the ecg look odd.  He also explained that my heart has to work harder to get the oxygen round the left lung because there was a lack of blood vessels but the same ground to cover.  My breathlessness can be caused by this because I'm not collecting enough oxygen in my lungs so by pushing myself in some cases I'm not doing myself any favours.  My resting beat is probably the same as a healthy person's walking beat.

I was telling my eldest brother this on the phone last night and he said Maybe you need to exercise more!  I have decided to just give up trying to explain anything to him, as the more I overdo it the more I push the heart the larger the muscle will become which could mean my muscle losing some of its elasticity. 

I asked if he thought I expected too much from myself and in a nutshell he said yes.  My anatomy is nothing like it was and surgery doesn't always put things right, which in our case it doesn't. Parts of us are removed so as we can keep on going.

I have been listening to my body these last few days, I have stayed in doors where it's warm, but I feel like a wimp - do others that have been through this feel the same.  Dr Murphy said I was remarkable still carrying on as if nothing was wrong, going to work and taking dogs for walks etc.  I took this as it was meant, a compliment.  Yet in everyday life it doesn't really help because we are born independent and you don't expect others to do things for you.  Looking out the snow is so tempting but there is no way I can run around the garden chasing the dogs, I just wouldn't get my breath and then when that happens it feels like your whole chest locks.  As for what is causing the pain no answer, it could be scar tissue, it could be from the chemo still or even worse it could be my old friend.

One thing I do know is that I am getting worse but could this be explained by the cold weather. 

If you have had surgery to remove your cancer please let me know if you are suffering fro a heaviness in your chest and the feeling of an iron ball sitting there.

I also hope that I do get an appointment for my CT Scan in January and maybe I might get a gastroscope done to see what is going on down this channel. Just to wake up normal (ok not quite normal because my left side will never let that happen) but to just have leftside pain would be wonderful, jumping out of bed on a morning feeling great is my aim in life.

I hope Debbie had her operation today so she can get sorted and started on radiotherapy.  Timing of treatments is so important for everyone with meso.  Do you sometimes feel written off for normal problems because you have mesothelioma?

On that note I think I will sign off.

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

Feeling Strange

Have had 3 nights of the dreaded sweats, you know the ones you wake up soaking wet, the sheets feel like they have just been through the washer and you forgot to spin them.  This morning I got up for work came down for a coffee and found myself going back to bed and slept for another 2 hours.  The last 3 days I have been that cancer cold.  Lying in bed this morning I prayed everything is ok because I just couldn't be bothered to have to start all over again chasing treatments or flying off to get any done.  I know in a couple of days this will pass but sometimes you just wonder why and what for.

We go on holiday soon and really I'm not that bothered about it either, if it wasn't for the thought of some sun on my bones I would quite happily stay at home, but then we aren't going to get any nice weather for another 8 months are we.  Ever have that feeling its going to be a tough time ahead?

Hubby has that worried look in his eyes and that 'you're doing too much' tone in his voice, but I just wasn't made to lie around all day.  Have worked from home Monday and Tuesday on doing some interior design work for some houses the Company's built.  Once I get a new project I am like a dog with a bone and can't put it down but today that doesn't hold any interest and the feeling of why bother has eroded into it.  I have loads of work sitting on my desk in the office and again I just don't want to be there either. 

Haven't got a copy of my scan to send off either, which in a way is eating me up, I am hoping it is clear but without being told you do wonder.  I asked my GP to ring me if he ever received the report .. yes still waiting.

The cold windy weather looks set to stay for a while and that restricts me from taking the dogs over the field, one because I get cold so easily and can't warm my back up, and two because the wind makes it impossible for me to get my breath.  You find you become a prisoner in your home when the weather is like this. 

It's healing today so hopefully that will give me a lift and then Thursday aroma therapy and before we know it Monday will be around again.  I honestly think time goes by much faster now than ever before.

Thursday night we ended up calling 999 for my mother, as she had a pain in her back then into her heart.  It turns out she had a water infection, but when she was discharged they had left the canola in her arm, sent her out without her own medication (which she took in) and the new tablets for her infection. This wasn't discovered until bedtime and getting anything organised at 8.30 was a nightmare.  I went back through to the hospital but the tablets couldn't be found, a District nurse was organised to come and remove the needle, this didn't happen till 11 pm at night!  Problem was last Thursday night I was having those heart pains myself, I think it was no 5 since they started a few weeks ago.  I just wanted to crawl into bed with some morphine and take the pain away instead of running around.  When I was at the hospital waiting to speak to the staff nurse I nearly asked to be admitted myself to check them out! (I know I hate hospitals).

Enough of me feeling sorry for myself, is this a normal thing that everyone has or is it just us with cancer that goes through days like this?  I need to eat more but food doesn't do anything for me, apart from adding more discomfort...

... better go otherwise I'll end up making you feel as bad as me.

Hopefully my next blog will be happier.

Changing Thoughts

Having overdone things and not received my scan results has left me up in the air. I decided to take today off after having such a bad night last night with my left side once again killing me. Every movement hurt, kind of like having a bad back but all the way down my side.

Tonight I heard one of my meso mates has had a new growth, out of the blue his rotten nasty meso has dared to return.... I was just thinking about him the other day and smiling because he had done so well and I was so jealous as he hasn't suffered pain anything like mine. Tonight my smile has gone and once again I am hurting because a friend is back in this terrible position. What does it take to rid ourselves of this cancer.

I know that I am probably over worrying which doesn't do any good and I said to hubby (before I knew the news) that on New Year's Day we are going to celebrate and next year we are going to make it our year, no operations, no re-organising the layout of the house just pure enjoyment and obviously work still, but it will be our year to relax. Within 3 hours of these thoughts I am back wondering if we will ever be free to just thoroughly have a good year.

Another meso mate Danny is now out of hospital but I haven't heard much more apart from he is feeling much better, I am sure he went through a terrible time when he wasn't able to catch his breath.

I also had news from Oz, Cher who is a gifted artist and did me a beautiful print off her oil painting of snowdrops (I Know Chris I keep meaning to run a print for the charity) has also emailed with news of her meso returning.  Is our average about 2 years do you think between treatments?  I had hoped in the early days that once we had chemo the meso would die and never come back .. wishful thinking and very naive but hopeful.  This hasn't been a good week.

Debbie and I have been corresponding with a lady from the USA who is looking at both cryo and embolisation. She is currently on chemo and my heart goes out to everyone on it, going through chemo takes a lot out of you and a long time to get over. I am pleased to say that Alan came through his Chemo well and it did do what it says on the bottle .. he is thankfully back in remission. I wasn't that lucky second time around.

I must remember to ring the hospital tomorrow and get a copy of my scan to send to Dr Abtin, he wants to ensure that no tumour gets a head start.

Well its bed time, but if you would like to brighten yourself up look at this, a meso mate has just opened this shop and I hope he does well, I'm hoping it saves me a lot of time with Christmas shopping!

http://www.gallery500feet.com/

Thoughts to you all and keep meso free
Jan

Summers Gone

I can't believe a month has passed so quickly.  I have to hold my hand up and say that I have well overdone things over the past 4 weeks and am suffering for it greatly.

The first week we were able to start moving into the new kitchen I went crazy, washing everything before it was put in its place, moving stuff in and out of cupboards and then moving it again.  Bending and twisting, but I was on a pure high, the new layout of the house lifted me mentally and for the first time in such a long time I really felt alive.  Then came redoing the old Kitchen to make it my office\den for the winter months so when I don't want to go out in the fierce North East of England's weather I can cozy up at home and work with a log fire burning in the hearth.  I was still so on a high that I decided I was going to paint it.

For all those out there with this cancer or in remission (like me after major surgery) this is a no no and I should have known better.  What once would have taken a day and a half to do the ceiling and walls took 5 days, I wouldn't be beaten and kept pushing and pushing.  My ribs felt not only had they still been kept in concrete but steel rods had been forced through them, my diaphragm (false one) has done nothing put stab me and I had pains in my back where I never imagined you could.  But I had started and I had the bit between my teeth. 

Before the pain really hit in I also went for my results, my first words to my consultant were "I have never felt so good" (the high was still in place) so he said "Well what does it matter what your scan says" so I have no idea what my scan said.  Obviously, since the high disbursed my mind has started thinking allsorts!

I ended up taking a day off work because I didn't have the strength to move and the pain was eating at me mentally as well as physically and still I am suffering.  Ten days of a high and ten plus days of feeling ill .. not a good pay off, but on the bright side the office is nearly ready and once the carpet finally arrives, I will have the house back to normal.

The other thing I have noticed again is I can't get warm, considering it is still summer'ish, I am back in thick clothes but still cold.  I had also hoped that all this exercise of painting would have improved the look of my bony arms and put some muscle back but instead they look even thinner.

I swear if Bear wanted to he could break my puny arm when he puts it in his mouth, I don't know why he thinks my arm is a retrieve article but when I come home he rushes down the path and grabs my arm.  If my shrinkage keeps continuing he won't realise its my arm in there and bit it off!

Why did I get a newfoundland, they hate the heat and I keep turning the heat up and hubby (who is always hot) keeps turning it back down saying the dogs are too hot! 

My brother's results are sort of in, he has plaques, the beginning of asbestosis, COPD and asthma.  What a set we are, but my main worry is how he will cope with having MS as well.  I must say that since he knows what is wrong he seems much more happier.  I think he was worried in case he had full blown mesothelioma, but having what he has would send me scurrying into the nearest whole and never wanting to come out again.  Now I have to wait and see how my other brother's xray's come back because he is suffering the same symptoms as our Nev.  It would be terrible if all three of us have been affected by asbestos so I am keeping my fingers crossed.

I was regretting us booking our hol to go to Dubai next month but now that my body aches so much I am certainly looking forward to getting the hot heat of the sun blasting into each and every bone, the only problem is that by the time you come back on the plane the holiday is forgotten and the journey ruins everything.  All that getting better is instantly replaced with uncomfortable body positions and the cold weather when we get home!  I just hope I don't end up with another breathing problem this time.  On one hand though I hope that by resting up I will re find that high I had before I messed up with painting and cleaning. 

I did discover something strange though, I am right handed, my operation and meso is on my left, yet when I clean my left hand is the doer, even painting I seem to use my left more than right .. I kept trying to correct this and use my right but it didn't work as good as my bad side .. how weird is that?

Keep fighting and keep well everyone ..... and no decorating allowed THATS AN ORDER

Jan

Home safe and sound

We were both looking forward to getting some restful sleep on this short holiday to celebrate that big 50, I don't know why I am so unlucky as the weather wasn't that good (so much for the south of England getting much better weather than us up north!) and the hotel beds were rock hard.

As I now sleep on my operation side waking up wasn't pleasurable at all.  I haven't ached badly for quite a while now but that all changed on Thursday morning where my ribs ached.  I didn't think they still made beds with hard straw and no give!  Even poor hubby ached from the uncomfortable bed and had a couple of bad nights sleep.

As it turned out my brother and his family flew out too to join us so my big night was a close knit affair, although the poor maitre-d probably hated us as we upset his table seating twice.  At first I thought there was only my brother and his wife but then the girls came too.  So 5 went to 7 then to 9.  Luckily we got seated in a corner totally away from the rest of the diners.  Hubby footed the bill for over priced but extremely nice champagne but I was annoyed at my brother as my birthday gift from my friends was the meal and he went and paid!  Guess I will have to wait and see what they now get me.

On Friday morning I didn't feel that good and no it wasn't the champagne, but that sickly feeling wasn't pleasant so when everyone was up in the pool (indoor because of the weather) I went back to bed to try and sleep through the feeling.  Thankfully I did get back up just in time for breakfast, 9.55am I actually sat down and ate something.

So far I haven't had any lung problems so I am confident that the flight hasn't caused any further growth to my air pocket.  Might just get to Dubai in September, any problems after this flight and hubby said never again would we be flying .. so fingers crossed nothing happens over the next few days.

I surprised myself at the amount of energy I managed to muster so we could do things.  On Thursday the weather wasn't that great so we went to the Jersey Tunnels then the heavens opened and it rained but within 30 minutes it had dried up and we went off to the Durrell conservation Trust.  Lorraine loves Gorilla's and it was wonderful seeing them, and we even spotted a couple of Bears, the proper variety!  By evening the sun was shining and the temperature came over the 19 mark.  Shame we came home on Friday as the weather was coming back to being hot and sunny, we landed home and it has been cloudy, guess it follows me.

Lorraine and Chris brought some photo's of us over the years and I couldn't believe how much I had changed and they hadn't but to look at me you would never know the scale of medical intervention I have had and that is a bonus.

Once again I am back to contemplating whether its time to leave work completely and spend my precious time with hubby and the dogs.  I hadn't realised my youngest niece had just sat her GCSE's because of my operation year I keep missing out a year in everyone's life.  I know that 2009 was probably the most important in keeping me alive yet its the year I can never really recall anything in.  I put that down to 3 months at home and all that anesthetic they use to keep you under, my memory is now shocking so that's my excuse.

I am pleased to say that my three friends on Alimta at the moment are doing well.  Although Danny tells me he isn't feeling a full benefit from it yet I know he will.  Although when I was on the stuff I suffered so badly with the side effects that I wouldn't notice any improvement until the damn stuff was completely over and done with.   Maybe there will be a breakthrough and another chemo will be on the market, after all many of us who had Alimta will need a different drug in the future if we have to go down that route.  I for one will not be allowed to have it again because it nearly killed me and that isn't the aim of the game.

I bought a lotto ticket this weekend in the hope that I could win and invest a load of money into trying to find treatment that could be supported in this country but my numbers didn't come up.  If I won I would like to get a CT Scan put in a local hospital here, get Dr Abtin to come and train a radiologist and then have cryo on the menu of treatments too without people having to travel to the States, I know its a pipe dream but we all have to have them.  I bet if I did win enough to do it the red tape and hassle would ensure it never happened but where there is hope ...

... just like the sun finally shining on us!

Don't forget to Thank your body for keeping you going!

A delighted fifty year old who hasn't pushed up the daisies

Time Fly's

Back in August 2004 I never thought I would see 2010, after Alimta and a year down the line my oncologist Dr Storey gave me some hope in saying I would still be here the way my meso was.  Then it grew like no-one's business and in 2008 I thought my time had come.  For my 45th I threw a party to say 'thank you' to my family, friends, colleagues, doc's etc as even then it was unsure how long Alimta could buy you, they said on average an additional 13 months.

It has been tough reaching 50, the acknowledgement to cancer, the stress it puts on everyone around, the pain, the treatments, the unexpected and untried and lastly the operation that saved my life, or bought me time.  But grateful I am, not only to the specialists that have helped me reach this age but to my own body, it has endured and surpassed everything thrown at it.

I met an older lady a few months back (she's in her middle 80's) and she told me her secret to being healthy was to thank her body everyday for keeping her well.  I have taken up trying to remember to do the same.  My GP rang me Friday to say that Dr Abbasi had been looking over my notes etc and that he and the Senior Radiologist agreed there had been some growth but it has stopped of its own accord.  My heart problem at the moment is counteracting the air-leak and I am good to fly.  I did manage to put my scan back to August so that after this flight we can check to see if anything happens to this pocket of air that doesn't want to settle down.  So Friday night I thanked my body lots!

I am still concerned that one of my brother's may have this cancer, his scan was Friday gone, a mix up as it was suppose to be over a month ago but the request was lost and blah blah.  He has been told he does have scarring in the lung which they can tell from his x-rays and there is also a chance he has asbestosis he didn't comment on it being meso but either way I hope it isn't.  He already suffers from MS and has being fighting a good fight with that for the last 20 years.  I look up to my brothers and respect them, having worked all there lives and really grafted is probably what drove me on too.  How could I possibly take time off work to recover from surgery or chemo when they both worked 6 days a week.

Our little (Big) Bear has managed to damage his back right knee and what a week we have had with him, both of us have eyes resting on our chins because he would not sit down, he paced back and forth for hours and hours.  The effort of sitting to lie down or pushing himself up was extremely painful so being a dog he though I will just stay on my legs. He was worn out by night time and the only thing we can do is put force behind his back legs to bring him to the floor, which made him cry out.  But he couldn't be allowed to pace 24 hours, he was doing spells of 6 to 7 hours on his feet.  Problem then during the night because he would want a drink and then trying to rise he would cry out so we were both down those stairs in a flash.  Bear then would refuse to lie back down so from 3am onwards one of us had to stay up with him.  Thankfully hubby took on the task from the second night onwards with me coming down at 6 to relieve him for some sleep.  All this and the build still going on.

Hubby isn't very happy with me either as he hasn't had a chance to go shopping for a birthday present for me, I said I don't need anything as I have everything I could possibly want.  I am still here, we are still in love and have two fantastic dogs, plus we are spending my birthday in Jersey with my two best friends and one of my brothers and his wife.  This is a birthday that I want to cherish with memories not gifts.  Ok as a woman I will probably be a little upset if I have nothing at all to open as we all like surprises, but he has spent the last 5 months overseeing the builders and building a kitchen he didn't really want.

I have no news on how anyone is doing at the moment, I have hardly turned the computer on this week so apologies.  I do hope that Danny is doing better, anyone back on Alimta deserves a medal but we know that life is so important to us.

I try to stay away from politics on the blog but my blood boils when I read that people are given expensive houses on benefit and not even born in this country, or paid towards the heavy tax duties yet that same spend can not be allocated to saving someones life on an expensive chemo, even when that person was born in this country and probably paid a fortune in taxes over the years.  It's about time we started looking after British people first, we haven't asked others to come and live here its of their choosing so why should we be expected to keep them.  We know for a fact that if we moved to a Muslim country (say) we wouldn't be given hand outs and kept above what we would normally be use to, so why do we do it.  Don't start me on socialist crap either, one of my Uncle's is a left winger yet owns his own house - how does that work then?

Maybe Cameron should start looking at all the wasted money that pours out of the system.  They closed mental health hospital's down for favour of 5 or 6 people in a home, great, but then the homes are owned privately and the only winner is the Company who runs them.  Yet old aged pensions are shoved in nursing homes with little rooms, no privacy and mainly have to pay for themselves with no help from the government.  Why can't they build 6 bedroom houses for the elderly with staff to look after them?  Don't they have rights and even more so as they have probably worked their entire lives and some of them fought for this country.

A friend of mine works for one of these agency's and has been placed with a family who's son is physically and mentally disabled.  The parents used a belt to protect him from falling out of bed during the night, it doesn't restrain him from moving in anyway and was provided by social services originally.  Now they say his rights have been ignored and two people have to be in attendance during the night to ensure he doesn't fall out of bed, this has gone on for 9 months.  What about the parent's rights to privacy, they love their son, have looked after him at home for 20 years and then because some jobsworth wants to make a name for his\her self it costs about 10,000 a month for this agency to have staff  sit up all night and what strain is that putting on the parents having strangers sitting upstairs next to their bedroom.  A total waste of money and as for the son's rights, it makes no difference to him apart from now if he did fall they would have to let it happen, whereas the belt would have jerked him back from the edge!  Britain has gone mad. 

That's just one case, how many more in the country, how much chemo could that buy or be invested in new research, how many nurse's a year could it pay for or more doctors to reduce long hours sitting in waiting rooms, more radiologists or Scanning equipment, the list is endless for better use of money. 

This is why I stay away from politics on the blog!!!

Last weekend I went crazy and blitzed upstairs, I worked flat out and ended up making myself ill and missed a day at work.   The sooner this house is back to normal!!!

I hope anyone out there that is new to this disease doesn't feel like their life has come to an end, take it on as a challenge, don't let it rule you you rule it and as my elderly lady said, thank your body.  Stay positive, it can't always work because of the nature of the beast but if we give up mentally we might as well order the gravestone today.  I look forward to still writing this blog at 60 let alone 50.

Sunday Again!

Have just been onto Bob Tolley's site, what amazing support and all that charity work, it puts me to shame!  also heard from Graham Brown this week and he is also doing a challenge on how much he walks.  I am thinking of taking up the challenge with him and hopefully raise some funds for Mick Knighton.  We were going to do another Auction Ball this year but our industry is still on its knee's and to whole idea is getting items for nothing and raising as much cash as possible. 

One thing that does annoy me is the misuse of the message boards etc, why do people have to spoil serious postings with abusive articles .. couldn't they put that much needed expression into doing something good!

This week has really flown, I have only missed one night's dog walking because I couldn't get my back warm, does anyone else suffer like that.  You can have a cold sweat or indeed a hot one but your back is ice cold, putting layers on or having a red hot bath doesn't warm it up either.  Sometimes I think it;s because I'm tired other times I think its the body fighting any ideas the cancer may have.  John E came back and agrees the scan looks good, all that pain has certainly been worthwhile.  Just hope I don't end up in hospital after my next flight .. I really hate the place.

So much for a hot 25+ weekend, we have dark clouds and wind, no walking for me unless that wind subsides, don't know about you guys but it takes my breath away. 

Hopefully today I will get lots of jobs done around the house and start to see the place tidying up.  The floor is being laid in the Kitchen and Utility, the carpet is all that's required for the shower room so am cooking with gas.  It's getting the old kitchen out that will then finally tidy the place up as the office is spilt between three rooms and there's boxes everywhere .. even in the bedrooms.  I have promised I will have a good clear out but I am terrible for holding onto stuff. 

I hope the coming week is good for all of us.

A Week goes by

Action Day came and went and I thought disappointingly, our local paper had nothing in about it, the national I read never mentioned it but I did see an article from the BLF regarding smoking in cars.  Who decided to change the date to the beginning of July and even more so for the first one when the World Cup is On.  No publicity is bad, Action Day reminds others that there is a nasty evil cancer out there.

For me this week has flown, I had to fast on Wednesday for my blood tests which the Doc wanted.  It is kind of a yearly check up regardless of whether you have seen your GP a day, week or month ago.  Problem I found was again I have lost weight (I haven't been on our scales for a couple of weeks because I dreaded the readout saying another 1lb down).  So I saw a Dietitian\feed you up woman on Friday morning.  My instructions to mix double cream in with my coffee, drink full fat milk, eat butter on bread, but what made my ears prick up was the fact that anyone struggling with food in take on chemo is suppose to see a dietitian while on treatment ... mmmmm missed that one twice!

My cholesterol was high at 6 last year so I guess by the time I manage to put 1 lb on and keep it on for one whole month my cholesterol will be at 8!  I must admit I would prefer to bang some much desired weight on, when you are thin every line shows .. (Vanity), seriously though my arms look like that of my mothers who is 84.  I was watching Twiggy the other day and thought how does she look that good and where does she get all that energy from, if I do get some weight one the lady told me I will have more energy, concentration will improve and my enzymes will come back, which I probably don't have, in my stomach.  Although I don't eat junk food or fast food I do have a sweet tooth and yet I still loose weight.  The amount of fruit gums I eat I should be 12 stone plus not 8.10 and believe me at 5'8" I look like a bean pole.  Yet upto the age of 24 I was just under 9 stone but I wasn't thin like this!!  Lorraine and Chris came up on Friday to sort out what we are taking away and wearing for my big birthday so they routed through my wardrobe making me try one thing on after another, everything hung off me, even those tight little numbers you buy and tell yourself you will slim down for it, hung with too much space to fill.  I felt deflated, together with the disappeared chest and what remains goes totally south, the only dress that fitted exposed my scar to much and the thought of going shopping for more clothes isn't one of my favourite things.  I will probably end up in a pair of jeans while they are dressed up to the nines, who cares I am still here and at least able to celebrate it.

The build is finally getting there and the end is nigh, by August the house should be back together and life can resume to its normal self.  Infact should things go down hill in the future we are all ready for me if I need to use a wheelchair, not that I want that day to come unless I am 80 and struggling with old age.

For the first time in years I actually stayed up late, I think I turned in about 11.30 but am paying the price today, at about 4pm yesterday i could have closed my eyes and had a nap but I pulled through.  To celebrate the roof not letting in water again I had a few B & C's .. okay 3 and ended up watching some recorded TV.  I did have a good deep sleep but am totally knackered today.  My plans of ironing, washing, cleaning, staining the skirting boards and doors went out of the window, but I have enjoyed the day.  The weather is wonderful with sunshine and heat.

We haven't taken mutley's out tonight for their walk so we have two sulking dogs but neither of us have the energy ... hubby has been moving topsoil along with barrow loads of wall stoning, gardening and yesterday helping me stain wood, clean up after the workmen etc and his back and knee have gone.  No doubt Bear will be a pain all night and sleep will not be easy.  Although it's Lexi that is pacing at the moment and whining.

The pain is still doing well and I am over the moon with the progress of my left side, just wish my centre chest would start feeling better and the breathlessness I am starting to get when I bend is driving me insane.  That was something else I learnt this week, breathlessness or laboured breathing causes you to loose weight as it takes more energy to get your lungs moving ...

On a last note, hubby bought tickets for Leona Lewis as a surprise for my birthday and we were scammed, he bought them from the WorldWide Ticket Store, mainly because he was tempted with the champagne and canopies on arrival etc.  I picked up the Sunday post at mam's and on page 2 there was a big article about how lots of us were taken in by the website.  (I was looking  to see if Action Day had been covered in Scotland .. no).

So with that note I wish you all a good week, I hope the Tennis has kept Lyn happy this week because the football was such a disappointment!

Update on health

Thank God for GP's who you get on with.  I have managed to ascertain that I have pulmonary hypertension on the right side of my heart, brought about by lung problems .. at least I know I'm not going to drop dead from a heart attack in the near future.

I did complain about the lack of communication I had from the chest specialist so my Doc is going to speak to the top man and see if things can be sorted out more easily in future.  I did ask to see another specialist but have promised my GP I will hold off until after my next hospital appointment (August), some 4 weeks after my next scheduled CT Scan.  I haven't heard what will happen about my heart apart from an echo graph again in August, so presume nothing but watching and waiting is the call of the day or nothing can be done.  My temp is still floating around 35.5 but I must admit I am feeling 100% better than I did this time last week.

I have also started taking paracetamol morning and night along with my mst and have noticed a remarkable change in my rib pain, for the better I must add.  I am only taking one tablet so am thinking of taking it up to two morning and night.  Just getting up without that concrete\iron corset on makes such a difference.

I have heard that a friend who went to see Prof V with small cell lung cancer isn't doing too well at the moment.  Although his treatment prolonged her life she has suffered with some damage to her windpipe but I'm not sure how, hopefully I will have some further news after Meso day as her brother will be there.

I have been reflecting on the problems I have had since our holiday and I do think that I have caused the air leak by flying, probably pulling the lung from the chest wall a little.  It does make sense, the low temperature was always an indication that my pleurisy was starting, so maybe I have some fluid there too.  Hopefully my GP will clear this up with Dr Abbassi in his letter.  I left him Dr Abtin's email to digest about my condition and he along with myself, was pleased that the cancer hot spots are dormant at the moment and long may they stay that way.

Surgery might have been tough on my body but it was worth doing it, to still be here alive and able to walk the dogs out in the fields, go to work, visit friends etc I have again started to take these things for granted and plan on doing this for at least another 10 years.

I said to Lorraine the other day that my body had been through hell long before I had surgery, I had had endo for years which causes your body to fight against itself, then to have meso.  Anyone who has been healthy until this cancer comes to life probably flies through surgery and suffers much less on the other side.  I had had an awful lot of surgery, even when I had cancer, so I am sure this makes the body weaker.  So please if you are considering surgery don't be put off by my moans about pain, you could be one that flies through and is back to normal without pain in 3 months .. a walk in the park ...

On that note I am going to crash on the sofa and watch something other than football!

Cryoablation Getting Somewhere

I finally had a chance to catch up with Dr F Abtin from UCLA on Friday.  After he reviewed my latest scan and gave me his comments I was relieved.  He also believes the growth pattern has stabilised, although not meso free the nodules he is concerned about have stayed stable and at present he doesn't want to rock the boat by cryoblating them in case they set the meso off.  He did note that my air leak has enlarged and wonders if I do have a new leak, if this is so then maybe that is what is causing me to feel so crap at present as it could be caused by a bug. 

I did say I am so pleased that I won't be seeing you but obviously because I don't need treatment.  I told him that my specialist say's he's worried about radiation poisoning but my answer back was only if I was on an Xray machine or CT Scan for 7 hours a day, and everyday for a week would that be a real concern and the effects would show in some 15 years.  But having a scan every 3 months isn't going to make any difference whatsoever.  So armed with another comment for the next time I need to battle.

I know that I really shouldn't moan about pain, after all I am still here, and I do do most of the stuff that I enjoy, but I guess I also talk about the pain alot because a) others out there may have the same and not know if its normal or not  b) I need to release this grumpiness somewhere and c) I'm a woman after all!

Anyway I was talking about cryo, I asked Dr Abtin how it was going in UCLA and he tells me they are doing around 100 patients a year, they are still waiting to have a full findings report published which will then make it standard practice.  It seems the insurance companies are pushing hard for it because a lot of patients want the treatment but can't get it through insurance and have to pay themselves.  I thought this was the only country that trials and results took so long.

I also did some recent research to see about cryo and found a lovely story about a lady called Doleros, unfortunately she died in 09.  She had had surgery followed by 25 radiotherapy treatments a course of Alimta then cryo.  Having had surgery and 3 radiotherapy treatments followed by nothing I hope I can still keep going!

I also heard from John Edwards and he was telling me of a patient that had surgery 3 years ago and is having Alimta for the first time, that is another good record.  I still wonder what would have happened if I had had surgery back in 2007 instead of taking Alimta again, the cancer would have been a lot less and maybe the recovery a lot faster.  Even John said we were lucky, he that he could remove it all, and me because it came out.  I thank my lucky stars that I had my cryo before it broke through my chest walls otherwise I wouldn't be here telling you my woes on the world.

Action Day is coming up and it will be interesting to here what the new number of cases are per year and whether our life expectancy average has risen.  You would think with the standard treatments of Surgery, chemo and radiotherapy together with the new technology we have for meso, our average should now be up from 3 months to a year to something like 1 yr to 18 months.  The Doctors are recognising the symptoms faster and getting on the case that much sooner.  Yet still manage to let some of us down.

Don't forget to support your local Action Day event, numbers attending show we are interested and want more done.  At least for me this year it will be a quiet one, no TV interviews, newspaper articles or speeches. 

Yet in my heart of hearts I feel that we are still in the stoneage regarding treatments for this disease, we hear about new treatments but they never come to life or even the way forward with surgery is hummed and harred by doctors. 

This week I was off colour again and spent Thursday morning back in bed missing out on all that beautiful sunshine, I am keeping my fingers crossed that this could be a bug because just as my operational pains are starting to get there this new one is pushing me to distraction.  Or is it the my poor brain can't deal with all the pains at once.  But however I feel I am still pleased to be on this earth, I would just like to be pain free and when I go to bed be able to lie comfortably and fall into a nice deep sleep, but that ain't going to happen so I am trying to re-program my brain to get real and realise that this is as good as my body will get and any thing better is a bonus.  Can't promise I won't moan in the future but will give it a shot.

On that note I hope you aren't in too much pain and meso is being kind to you too.  If you're at war I hope the battle is going your way, keep positive and do me another favour, ask your specialists questions.  The only way to stay ahead of the meso is to know everything you can about your disease.  Research everything, if you have odd tumours instead of wide spread thickening consider the other options of new technology, if you have wide spread thickening consider surgery before the stuff spreads outwards and its too late.  Yes surgery is a long recovery road but you can still do most things (after 6 weeks) pain in one maybe nothing to another.  Put your body above what your specialist says, they don't know everything and sometimes they don't even tell you that they don't have any answers and sometimes they really aren't interested.

This is your fight, it's your life and if you won't do battle no one else will do it for you. .. It's fact.....

Battling on as ever

Jan

When is a Doctor?

Having been wondering what is going on with my chest and heart I was looking forward to the appointment with my specialist.  Here I would gain understanding to what was happening and glean any advice forward.  The only thing I gleaned is that we are still really out on our own.  I waited some 3 hours to see him for a 10 minute mumbled meeting he had pretty much with himself.

I had sort of hoped that our Doc's were there to guide us through whatever choices we have to make or tell us what is or isn't working.  The only thing I got out of the meeting was his concern I have too many scans.  If I hadn't have been taken in to hospital I wouldn't have had too many scans, and as I pointed out, with meso having the reputation it has you would be mad not to get it checked every 3 months.

I am sure I have been on this soap box before, why let a surgeon work all those hours to fight for our life, remove the bloody cancer and then our chest doc's just let it come back!  I have no idea whether I am still taking steroids, who is looking at this pressure in my heart, and to cap it all how my own Doc tells me I have a nodule growing and this doc says nothing.

I hate to do it but I need a doc who is prepared to give those 10 minutes to me, to be bothered if my scan shows a growth or not.  When I carry out my job I give it my full attention, why should doc's overlook the care of their patients any different?  I know they aren't allotted a decent time with a patient (15 minutes), you bring in a new case that takes an hour, then they are 45 minutes late on the first appointments.  They have a voice, shout up!  Tell your bosses you are over submitted, but please don't take it away from the care and advice us meso people need.

I have no idea what is going on, if Dr Abtin says I have a growth I will just go, he isn't charging for looking at my scans, hasn't made a penny out of me and at least can be bothered to look and ask and advise.  Funny we all say we would hate the USA way of medicine but at least they give you something to work with. 

I really wanted to stay within the realms of the care team that I am suppose to have, I was excited to have a team so I could refrain from worrying and enjoy my time .. well that's gone, I haven't stopped worrying and really would I really trust again?  Without trust between doc and patient you haven't really got much have you?

What I find the strangest is that the surgeons seem to take more care and proactive action than the medical side who assess and decide your future.  Debbie and I have pretty much taken our own care into our hands and hence I feel that is why we are still here today.  Yes we need the Doctors but if they are unwilling to advise or point a way forward then you have to take control, it is your life anyway.  As for me, I just wanted a break from it all, so back in the saddle to see what's going on and hopefully survive another round of what is coming my way.

Prays and thoughts to Hilary and her family for Friday at 12.30.

Chest pains and big bears

I know I don't know how I dare complain when everyone is going through such a tough time but since that episode that put me in hospital for a night my heart has been acting up.  Maybe it is because I know the pointer on the ECG went down instead of up, and to be honest I didn't really take the Doc that seriously on the ward when she said she wasn't happy for me to leave but then it was a weekend and nothing gets done in hospitals over that period so she kindly let me go.

Yet over the past 3 weeks I have had this heaviness in my heart, strange really as my other pains seem to have stepped back while this one takes centre stage.  My breathing has been fine, my heart area seems to hurt the most on a morning and by early evening it isn't as prominent but still there. 

Have managed to make an appointment with my GP so maybe he will give some light to this, and of course I have an echo graph coming up next week .... I wonder if my downstroke will have become normal again.

I have had some good news today, Chris S has responded well to his second cycle of Alimta and has had shrinkage.  Chris was diagnosed with me back in 2004 and with a little blip a few years ago where he had radiotherapy, this has been his only real treatment since 2004 when we first went on Alimta together.  It is always uplifting to here things are going well.

I haven't heard from Hilary and am worried, I have text but at times like this I know she has more to do than email or text me back.  I just hope a miracle has happened and her husband is gaining some strength and fighting this infection.

The sunshine is wonderful, although Bear has taken to lying in the kitchen across the threshold so getting in and out is near impossible, he is nearly as tall as me when he lifts onto his hind legs, can't believe this little puppy has become such a large dog in 8 months and he still has some growth to come.  The only downside of the breed is his slobbering, it gets everywhere.  Have tried teaching him to wipe his mouth but he thinks a towel is to play with and ends up playing tug of war.  This morning he had me up at 5.40 I could hear him scratching at the door and when I came down he had removed quite a lot of plaster from the wall as well.  Once he's awake he wants the whole household up then he goes off into a corner and goes back to sleep!  I wonder how he will get on when he moves rooms again.  I had hoped on giving him the free run of the house, we have tried several times, but he is up and down the stairs, barks at the bottom of the bed then flings himself ontop of us.  I can't remember this with any of our other dogs, so we are leaving him in the kitchen at the moment, which is a cooler room as it doesn't get that much sun.  But once the build is finished the new kitchen will be light and so will the utility room, I had hoped he would move out into the hall and what will become the office but as he likes removing plaster from the walls I don't think it will happen.

I had hoped on going to a new meso meeting which takes place in Washington but with the builders in and hubby at the dentist it proved not to be again this month.  I hope Dan gives me the reminder again for the next one.

My CT Scans will finally be ready for collection tomorrow so then comes the nightmare of getting one sent off to Dr Abtin and then the wait to see what he makes of the changes.  I only hope that he was wrong with the last one and the nodule he says has grown to 16mm isn't there or if it is it hasn't grown any further.  I really am at the point of I don't know what to believe, especially after the Chest Doc in hospital said it was growing and what did I expect.  There again on the phone this morning Chris reminded me that I am nearly 50 and in 04 and no one really thought I would get here, yet I still have a lot of living to do and will not be resting on my hunkers, to keep alive is to keep fighting.

Wish I could get my appetite to do that, my weight has dropped again, 8.12 now, seems even a sandwich fills me to bloated, thank God for lunchtime cereal.  I have decided to try and get back into milk shakes, especially with it being summer, at least they are a meal with all that milk.  No doubt some doctor somewhere will shake their heads and remind me to drink skimmed milk - not likely full bodied milk is the only one I like.  Have also being checking my BP it is still around the 95\60 something else to chat about with the Doc as I am certainly not athletic. 

Enough of my grumblings, I do often wonder if my rambling about pains etc actually puts another sufferer at ease, at least if they have the same problems then they know it is normal for the condition!  There again I guess not that many have been through as much varied treatment, radiotherapy, cryoblation, chemotherapy and two lots of major surgery, obviously the last one being dramatic surgery.  When you meet a new doctor they are so interested in the false heart sac, diaphragm and the thought that your lung and chest wall have been stripped, cleaned and you are still here to tell the tale.

On that note I will end the blog, thoughts go out to the circle and I hope all is well with you.

Don't forget the factor 30 or 50 on your drainsites!!