Sunday, 25 July 2010

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

Sunday, 18 July 2010

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, 11 July 2010

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.

Sunday, 4 July 2010

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!