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