Packed and Ready to Go

It's that time when you sit down and think we are ready but then you start to panic in case there is something you have forgotten!

 

Lexi has sensed something is going on although I don't think she thinks we are both going away, we are just waiting for Lauri to arrive.  Poor girl has just finished house sitting and looking after a cat then to come straight to ours and take over house duties and dog sitting!

 

I can't believe it, we had sunshine, blue skies and heat!  I even went with the dogs over the field, although a very short walk.  Bear has wet eczema and flies were zooming in on his bald wet patch annoying him to death.  Also I was quite breathless on the walk, I can't understand why, as I haven't been that breathless for a while.  At least we found this yesterday, his head was wet which we thought odd.  On further inspection under that mass of hair his skin was red and weeping.  Mind trying to cut his hair was a nightmare, he was pulling and tugging to get away from us.  I go slow and gently, Gary well he just dives in, probably better but I always worry in case I catch his skin.  It hasn't spread and that's the main thing.

 

 

This morning I woke up feeling a lot better than I have for several days, the bile seems to have stayed down a lot better, I wonder if that Roast Beef and Yorkshire Pudding dinner had something to do with it or the milk I drank with my tablets instead of fruit juice.  Either way I was a happier person this morning and life felt good.  It has been a while since I have thought that and really felt it at the same time.

 

I am hoping this is a good omen for the holidays and finally my body is on a turn around with the bile problems, just hope my 3 month pregnant body stays that way and doesn't turn me into ready to give birth over the next 2 weeks.

 

There have been a lot of fund raisers today, Angela put herself into a bird cage to raise much needed funds for the hospice that took care of her father .... I think she went down a treat or tweet!

 

If you would like to donate to the fund please go to  http://www.justgiving.com/angela-caulfield0

 

Two of our employees are doing the Great North Run in September, Paul Wright has ran this for many years donating funds to many charities, this year he is donating to Mick Knighton Mesothelioma Research Fund, Dave Simpson is running it for the first time and he is donating to Cancer Research.  If anyone would like to sponsor them I will be posting the link shortly.  (I have to ask Claire at work where it is!)

 

I forgot to mention that my mother in law has had no side effects as yet on her chemotherapy, although she is having carboplatin on its own I still expected her to suffer some symptoms.  I hope it does its work and reduces her mass so they can operate and remove it.  To everyone else facing treatment this week my heart goes out to you all.

 

One day may seem like we are doomed but tomorrow is always a new day and hopefully what ailed us is behind us.

 

The sun can make a difference to how we feel and I truly hope it has come to stay for a good 4 weeks or more.

 

No Word

I know I expect miracles to happen and they never do but again I feel like things aren't moving.  I didn't go to work, once I showered I felt zapped.  I ached and I felt tired and just wanted to lie down and sleep.

 

Hubby set up a seat outside by the front door, as it was shaded from the breeze, then rang the doctors and made my blood work appointment.

 

I dosed off and on for an hour until he shook me and said I needed to go, so off I went to the doctors.  The young Health Assistant asked what I needed doing, I thought surely a note from Darlington would have been received by now.  So she pulled up my file, the last note was the 16th July, which was my GP organising me an xray.  I thought this new technology meant our records were up todate.

 

She disappeared off then came back with the Practice Nurse, I explained the ascites, the bloods needed E's & U's and Kidney function.  Considering she was just a young girl and recently started employment there she was gentle with the needle.

 

I came back and crashed again, sleeping more than keeping my eyes open.  I have decided my morphine level is too high, so last bedtime I dropped it back to 140 and will do the same when I take my tablets in a few minutes.  This is too ensure I don't keep dropping asleep, but it isn't helping with the pain, I woke up with a very painful tight chest.  I hate this cancer as it is so hard to get things right.

 

I am pleased to say that Dr Steele has contacted me and as another shock, remembers who I am.  That's a good start.  He needs to catch up with all his work and will ring next week.  So things are moving that I have control over.

 

Funny, I don't really want to go into work but once I am there I always get on with it.  I was never one to be work shy and preferred work to doing anything else.  Maybe it is because I am just so tired that I want to laze around all day.  It doesn't matter if my eye's shut reading a book, but it does if they close while entering information onto the computer!

 

Hubby has started a new project.  A shed we had made when we extended the drive wasn't that good, if you go inside you bang your head and its sagging terribly.  He has ordered a load of tongue and groove and 3 x 2, he intends adding 2' to the height and replacing the roof.  Yesterday he spent his time cutting the wood but the heavens opened.  Today the sky is grey and full of heavy clouds here so I guess he won't be getting much done.

 

Normally a Thursday was my aromatherapy day, my legs were always done and this helped keep my veins down.  Over the years my red thread veins had started to disappear but they have quickly come back.  I know my therapist is just about fit enough to start again so maybe next week I will start having a treatment again.  Trouble is once you get out of a habit you find it hard to get back into one.

 

Well guess I had better make a move, I could easily go back to bed but I am going to push on and see if I can get to work - even if its just an hour.

Sunday - Part 2

I had to have a sleep, such strange dreams, again caused by the smoking tablets, but I have continued, hubby has decided to stop using them.  I think tomorrow though I will only take half a tablet and half again for the rest of the week.  They are making me sick and my appetite has gone.  Last night for tea I made a crisp sandwich, Friday night instead of dinner I voted for a cheese toastie, but the dogs ate most of it.

We have finished packing, my back is achy and my left leg tingling, I am so pleased I took the painkiller early this morning.  Will take the next one with dinner, really want some roast beef and Yorkshire puds.  Trouble is keeping my eyes open.

There was a stakeholder meeting by Mesothelioma UK last week, I didn't get and will be interested to know what took place. 

Things may seem quiet on the Meso front but I know that the NHS is working hard to help create a way forward for us meso sufferers.  Although by the time they get the drafts finalised and in to practice we will be looking at a couple of years.  I do know they are hoping to open more meso centres around the country, this means more access to new treatments and trials for all of us instead of just in London.

They are also looking at recording evidence based facts on patients, following through all treatments.  This is something I have rattled on about quite a few times.  The latest draft says that in 2009  2,200 newly diagnosed cases were reported.  That doesn't make this cancer rare but because it is not widespread across the country they treat it as rare.  If someone in Whitby turns up with Meso it would probably be the only case likewise someone in Lyme Regis. 

I am totally worn out now, need to go down to my mam's next, somewhere I haven't been for a long time, I hope my emotions will stand up to it, as the last time I went in I expected to see her sitting in her favourite chair.

Hubby's pulled out two chickens to cook for the dogs, this is so our sitter doesn't need to worry about cooking anything for the dogs for a couple of days.  Hope the meat stays fresh in the fridge for longer than 2 days, although if he cooks them on Monday it should be ok till Thursday.  Since we have started cooking whole chickens for the dogs I have gone off it.  You can certainly tell the difference between the buy 3 for £10 to the ones that we eat which are free range.  For starters the bones are solid in the free range, in the 3 for a £10 the back bone is paper thin.  I honestly don't think Chickens get longer than 16 weeks of life before they are killed, when I was younger they lived until they were at least 6 months old.  Mass food for mass population, I think the human race is getting to big.

On that note I will close, my blog is done for the day and probably my next up date will be once we arrive on board ship.

Take care everyone, keep that nasty cancer at bay.

Sunday - Part 1

I woke up early, 7.30, to the sun shining and blue sky.  I couldn't sleep any longer so came down and sat out the front for a while.  I came in to make a fresh coffee and believe me the weather changed in five minutes.  The sky had turned grey and a wind had picked up!

I had planned to pack yesterday but my back was so bad and I felt sick all day.  I spent the afternoon on the sofa sleeping.  This is so not me, if I take a nap, its usually a power nap of 30 minutes, not 3 hours!  Although I did get some ironing done.  Not that my back appreciated that either.

Am getting worried about my tummy, I know if it was meso it would show up on the screen but it is so big, I am still less in weight than a few years ago and my trousers then gave me some slack around the waist band, these same trousers are far too tight.  I would have tried to do some exercises but due to the back, well.......

The champex are making me feel sick, giving me thick heads and helping with making me tired, don't feel as hungry either.  Hubby is on about stopping them, he thinks our holiday will be ruined if we continue.  I don't know what to do, as it would be nice not to smoke anymore, although they haven't worked so far!  One day they did make the cig taste vile but then nothing since.  Being on holiday will break the normal routine of when we smoke so I am going to try and continue.

So today I must pack, de hair and try and be ready.  Our house sitters are set up, the dogs will certainly enjoy having Chris to tease, Bear is a terror with her and gets her up at silly hours!  I think he likes having a different person in the house.

Will let you know how I succeed later today, if I get the energy and my back lasts. Heyho onward we go.

Relief Not!

I went to an new physio and yes he also put me through the paces, he warmed my back up though before starting to manipulate the nerve.  He says I am at stage 3 but I don't understand whether that's stage 3 in pain or stage 3 where the nerve is.  I know should have asked.

 

He said to me I would hate him on Wednesday for the pain I would suffer after he had worked on me and I did, well I didn't hate him but hated the pain I was back in.  He has offered to do some more work on it Sunday but whether that's a good idea before our hols I don't know.  My back is still sore.  With the added tablets for pain relief along with the champex for smoking I've also had a thick head, nothing like mixing tablets and feeling rough is there.

 

I know I am moaning again, I do laugh and chat about life outside of pain, but my blog is where it all comes out.  I don't like talking to others about the meso, with the exception of my meso mates, but I don't really discuss cancer with family or friends.

 

Gary's niece stayed with us last night and made dinner, that was sweet, she's off to the passport office today but doesn't really want to go on holiday because she has to fly.  We've tried to make light of her fear of flying but it must be hard when you do have such a fear, like me with needles.

 

The Great Yorkshire Show is soon and she is riding in it, it would have been nice to go and see her compete but we will be on our holidays.

 

Well that's it for me today, wish I could say my back had improved and looking forward to our own hols. I guess at this rate hubby will need to do the packing as I was told no bending forward.  Trouble is at work you have to bend forward and even in office work there is still lifting, my files weigh a ton!

Beautiful Days Ahead

Hubby read the forecast out for the week, sun, sun and more sun!  The sky was a perfect blue at 6am this morning but I turned over and went back to sleep.  My back felt easier so I thought I would make the most of it.

We took Lexi and Bear over the fields, although only a short walk today as Lexi has to take it easy.  I am still giving her pain relief for her operations, poor thing but I must admit although she has stitches in her bum she is sitting better and I think amazed herself when she actually sat properly instead of having to tuck her leg underneath and flop down.  Removing that pile will make life so much more comfortable for her, sometimes the smallest things can make life so miserable.

 

We came home and sat in the garden, one minute top on the next off.  The clouds were heavy when they came but still it was lovely.  Late afternoon was a lot warmer and Bear decided he wanted to get involved watering the plants.  I loaded him chasing the hosepipe on youtube, wow I didn't know I could do that until I pressed a button and up it went.

http://youtu.be/V5D-flMs2r0

The little devil decided to rush between my legs when he was soaking wet, then Lexi took up the game.  My inside thighs were soaking so off I went and got changed again.  I am so pleased he didn't try to do this Friday or Saturday, I am sure dogs know when things are wrong.  Just wish we could read them as well as they read us.

 

Today I feel great, although I was stiff when I got up from sitting, a few spasms shot down my leg but nothing compared to where I was. 

I just hope when I finally see my onco a week tomorrow now, he will be able to put my mind at rest and tell me it isn't the mesothelioma pushing on any nerves. 

 

I am pleased to report that Debbie is back on the road to recovery with her chest infection and it seems Mavis is doing very well on her 4th line chemo.  They have used Gemcitabine or Gemzar as named in other countries.  This was on trial back in 2007/8 for kidney cancer with good results so hopefully may become another good one for mesothelioma.  From what Mavis has reported pains have ceased, always a good sign as that means the meso has been hit.  I haven't heard from Chris since he finished his 4th line, although he was given a totally different treatment, the 3 in 1 which is sort of on trial but not.  It's hard to believe that Chris and I were both operated on in August 04 on the same day by the same surgeon and both had mesothelioma.  In fact that week there were 4 of us, one gentleman lasted 6 months and I think the other a couple of years.  Chris had suffered with symptoms for 6 months, he even told his doctor he had worked with asbestos but had to wait for months before they checked him for mesothelioma.  I know old history but I guess Chris and I are lucky as we are both still here. 

 

I guess I should go to work next week, only 4 more then we are away, just hope my leg\back etc has greatly improved and I don't have days like Friday when away.

 

A meso friend has been away too and agrees with me, warmth and sun on our bones makes our meso pains fall into the background.  So nature if you are listening, please give us the summer we so desperately need.

 

I hope to all the meso warriors around the world are winning and keeping our man made enemy at bay, to those currently on treatment hold onto the fact it will work.  The sun makes life seem so much more brighter.

Problems with life

Life with mesothelioma is never an easy road to travel.  The community of meso warriors are all involved in one form of treatment or another.  Decisions to be made on surgery or chemotherapy, then those who are doing well and haven't had treatment for years against those who just can't get the meso into a status of inactive.  The one thing all of us have in common is that we just don't know what is going to happen next.

 

A friend of mine went through surgery a year ago, although she too had a rough journey, her lung didn't want to stick back to the ribs either and spent quite a long time in hospital with a tube in, (thankfully I came home with mine), but she is having problems with her breathing.  The CT Scan isn't showing anything unusual but she feels herself that something is wrong.  Her weight has dropped, which I told her would be expected.  The weight loss doesn't seem to happen at the time of surgery but quite a few months to a year later, those lbs start falling.  This is caused by trauma to the body, it takes the body a while before it picks up on this, the brain deals with the surgery first, then the pain etc but sometime along the line our body then goes "hey something happened to me" and hence we have weight loss.  Had better write here this is my opinion only and gathered by only a few people I know who have had surgery including myself.  But I am worried about her, and asked her to ask for a second opinion.  CT Scan's can only show growth if it is over 3mm or the cut has happened in the right place, (the time the CT Scan takes it's snapshot).  It only takes 1mm of meso to make us uncomfortable, I should know as I felt mine return in the beginning of 2010 and then my USA radiologist noticed it in the April, it was a lot bigger in the December when my UK radiologist mentioned it.

 

Then you hear of other friends who are trying different treatments or have catheters in place to drain the fluid that gathers in the pleura space.  Mesothelioma makes pockets and it can be quite difficult for the catheters to do their work as the fluid can't drain the individual pockets.  This in turn makes breathing hard again. 

 

Many are currently going through chemo, the loss of hair sometimes can be distressing, my hair is fine and so when I brushed my hair or ran my hand through it and had loads of hair drop out it worried me, on our treatment we don't go bald but shed quite a lot.

 

Then the worry of if the chemotherapy will actually work, we know that Alimta (Pemetrexed) doesn't work for everyone.  One of the Warriors will be using a different chemo this time (4th line) and I for on am eager to see if it works.  Although my other friend has just finished his 4th line with a 3 chemical infusion and so far is inactive but didn't get the shrinkage which we all hope for.

 

I guess I am slightly worried, my scan was last Tuesday and although my oncologist is away I am hoping my gp will give me the results.  I have had some changes, I have to hope this is something to do with age and not the meso.  My worry is still this leg, what if the meso has grown and is now resting on another nerve?  Also a few new tighter pains in those left ribs, but that could be to do with my fat belly, see we all live in hope when we have this cancer.

 

It's Monday already and I have a busy week ahead, having been out of the office for nearly 3 weeks, I did get in a couple of half days so tonight I will probably come home and crash on the sofa.  I am having trouble with my eyes at the moment, they get tired looking at the screen but if I put on glasses I can't see as they are for distance, I guess I need an appointment, will be quite hard I guess to match my eyes as I don't need anything to read things on my desk or in my hand only the screen.

 

Have a good week everyone, don't forget to drop in on my warrior friends blogs and catch what they are up to.

A week of Meso

Sunday started badly, having had restless nights I didn't get out at all as the weather was terrible.  Hubby came back shortly after leaving with dogs in tow, to say that a little fawn had ran into a fence in front of him and he had stayed for a while then moved it to cover.  So the day began, him feeling guilty that if he had travelled down the lane 3 seconds later the fawn would have been long gone.  As it turned out we ended up housing the fawn at my brothers place and my nephew spent the day going back and forth to check on him. 

 

I had spent most of the day scanning photo's, I want to ensure this project of our life together is done before I die.  At 3 pm the scan died an overused death, (it hasn't been turned on for some three years then to work all day Saturday and most of Sunday what did I expect).  At 3 we went to buy a new scanner and called in on the fawn, I sat and stroked it and talked to it and prayed it would come through.  The vets thought it was concussed. 

Hubby carrying Fawn to Safety

We saw this fawn when it was just born in the fields with its mum
 

Unfortunately between 6 am and 9 am the fawn lost its battle, when we went to bury it blood was leaking from its head, obviously it had been involved in an accident earlier, hence why it didn't jump the fence when it heard the landrover.  My heart sank and so did everyone else's.

 

The weather took its toll on me being out in it and on Monday I felt like death warmed up.  Another night of insomina didn't help either.  I went into work for a while then came home, Tuesday I went for my scan, good job I checked my letter as I thought it was Thursday!  I didn't rehydrate with water enough and then for some unknown reason I decided to have a glass of wine, which led to more than 2.  I went to bed typsy and hoped I would sleep the night but at 2am I had woke up, my heart was racing and I couldn't get my breathe, I felt like there was no oxygen getting into my lungs.  This is a terrible feeling, for those who haven't experienced it.  How I wished I had kept onto mam's oxygen machine then.  I tried to settle but to no avail.  Hubby woke and I could see the worry etched into his eyes.  It didn't help matters when we took my temp, back to a meso temperature of 35.7, this is a session of the meso growing inside my body.  By 4 I fell asleep and he let me lie in till 9.  I was suppose to attend the funeral of a very dear lady who has fought with lung disease for many years and who is highly thought of in the circles of spiritualism.  Needless to say I didn't get, which then brought on a guilt trip.

Wednesday I slept and although new pains had now developed around the lower left ribs and I feel like my steel cage around my ribs has changed to total iron with the aid of a few screws being tightened, I went into work.  Year end is a busy time for me but I couldn't concentrate and felt weak.  This morning I don't feel much better, my heart is heavy, my left side aches and for once I am feeling very very sorry for myself.  I know the results will show small growth, so why does small growth have to make so much damn pain!

Hubby has booked 3 holidays for us, we never booked anything more than 8 weeks in advance over the last 8 years then last year we booked one at Christmas for Sept 12, I just hope I will be around in August to enjoy them all.... yes I know its silly and August is only 6 months away but within the meso world we know how fast this cancer can go from standing still to damn right aggressive.

Even my right side is hurting more than normal and a few pea's (the princess and the pea story) I can feel in bed are more than they were this time 6 months ago. 

I feel that I am lost in an ocean of uncertainty, I know that the oncologist will have nothing to offer, not even hope that there is something we can try.  I am all for giving chemo another shot, even though my brain is telling me if I hadn't had it maybe the meso wouldn't be so active now - Stupid I know because I took the chemo because the meso was too active!

I know that many are in the same position but at least surgery may still be an option if they have had too much chemo, me I have had it all really and what do I expect a miracle to pop its head up and say I'm here try me.  A little like Alice in Wonderland, wish I could find that magic potion. 

Well, sorry to depress you but I need it out of my head and the only place my hubby doesn't see is here.

I glanced at a report today that said those who had the EPP instead of decortication had longer odds, so why in the Uk do we do mainly decortication.  I was scheduled for the EPP but came out with my lung, at the time I was overjoyed, maybe now I should have asked why leave the object that has all the cancer cells?  I have to add there though that surgery only guaranteed 2 years and if I got 4 I was lucky.  I guess I get jealous when I read others have done so well and are hitting some 5 to 8 years after surgery and here I only had 1 year before those cells started again.  I guess I am just unlucky, but I should then think how lucky I am because I am still here.  This disease tears you apart time and time again.

Wish I could put my thoughts along with my meso and send it all to hell ........

Insomnia again!

It is distressing when all you want to do is sleep, it's only midnight but to me it's already 2 hours into my normal sleep pattern.  I hate not being able to drift into that comfort zone called 'out for the count', the dogs are snoring, hubby's snoring, my eyes are tired but my brain is alive so here I am again up but thankfully without pain.

I am wondering if the last week was a session, I have been left with that dull ache back in my left armpit, the best description of its location, or is it because I have gone back to 2 omperazole at 9 pm instead of 1 at 6 and metrocloprimde for bed, which ever way I am pleased the pain has subsided.

I am getting myself lost off with this project of creating our life together, each program wants to keep importing files so I am ending up with folders and more photos.  Adjusting some in Lightroom to find they don't change them on the hard drive but only virtual, elements keeps importing and creating folders and God knows which one to use to make a slideshow to then mix with the video?  Honest, writing my book was easier!  But I am one of those people that has to have it right too, so I will keep going over and over the same part until its near perfect then think Oh I can change that, it could go on forever, but forever I don't have.

I came across some pics of when I was in my late teens and early twenties, I always classed myself as an ugly duckling, my mother always told me I was and my brothers agreed.  I have never had any confidence or self esteem, I spoke quietly too so people tended to ignore me when I was younger. in fact I guess you could say it's still the same today. Looking back at these pictures,  which have been boxed away for some 20 years I was shocked how I looked.... Not the ugly duckling I perceived myself to be.  Too late now though I can't go back in time and tell myself I can be confident.  I wonder what would have been different if I had realised I should have been confident?  Hopefully I would have still married hubby but I guess there would be no escaping having meso, that seed was planted to early in my childhood.

It is pouring down and blowing a storm here, Bear has decided because I am up he should be allowed to go back out and sit in the rain, well he hasn't got a cat in hells chance, although my knee is getting some damage with his paws instead of the door.

Well guess I should try and get my head down again, the hot chocolate is finished the room is cooling down and I don't want a chill.

I know that part of the reason for not sleeping is because I have spent most, sorry, all day on importing and trying to put this project together.  Foolishly I have started with our wedding, it may be better to work backwards instead, but then what's interesting in cataloging the last 8 years of hospitals and surgeries, chemotherapy and everything else that goes with cancer!  I want to leave happy memories for the times that he may need to remember me.

On that note I think I should go, otherwise tears may start to well and I can't have that, there's plenty of time ahead to get weepy.

Good night to my time zone, good morning to yours....

For some reason iPad works differently when blogging, have been taken into an old post back in march 09, 8 weeks after my major operation, if you have gone through surgery it would be interesting to see if you felt the same or if you're going for it have a glance over it. (That's if you're interested!)

http://jansmeso.blogspot.co.uk/2009/03/road-to-recovery.html

Runny Nose

I have noticed that when I do some kind of exertion my nose runs, I noticed this when out walking the dogs but put it down to the cold temperature but here I haven't that excuse. Everyday I carry the bag downstairs and then my nose is running for a good hour. yesterday I did a really stupid thing, armed with our beach bag and four towels I climbed two flights of stairs from the poolside up to our room. By the time I reached the top of the 1st flight I was suffering but kept going. when I reached the room I could hardly breath, my chest thought it was caving in and my heart was pumping so fast. Finding the trusted inhaler I didn't think I had enough wind in my sails to take it. I got caught by hubby, who had left me to go to the shop, he went banana's at me for not taking the lift and said I couldn't be left alone. I tried to tell him that we have to push ourselves occasionally to see if we have declined in health!

The sun is helping the cancer pains but the rock hard beds, only ever found in Spain, are killing my back. It's quite breezy this morning here, I really don't think the weather throughout the world knows what it wants.

Hopefully heat in another hour or two and back to relaxing on the sunbed with kindle in hand and another book read. There's a strange thing too, the fiction book
I'm reading is on about Mesothelioma fibres. I think it's the first time I have ever read its name in something fictional.

Breakfast is calling ..