Meso Pills take away the fun

It was truly great to feel the sun on my bones although like normal I jinxed the weather and we had a thunderstorm on Saturday.  Why is it that our lives are so different now to before.  I had a couple of drinks on Friday afternoon while travelling to have the worst headache on Friday night.  I left hubby and friends in the bar enjoying the warmth of the evening air and went to bed.  The only thing I can complain about the hotel was the hard pillows and beds.  My back ached the next morning and so did everyone else's.

My stomach wasn't that great either on the first morning away and the panic of am I doing the right thing booking a week away with the girls jumped into my mind but on Sunday I felt a lot better and thought Jan get on with it.  Live girl otherwise what's the point.  At least if you have rotten guts in Greece you have the warmth and the sunshine!

I looked at every picture I could of the hotel outside - each sunbed looked covered in a 2inch mattress instead of just plastic, by the pool they had soft ones but on the Sunday by the sea front we had to request a mattresses from the pool area. (No sun on the pool area until 2pm)  We were granted to have one after tracking down the Assistant manager but then I started other guests requesting them, so if I go next year I doubt they will comply.  Why can't we have comfort on sunbeds?  Although I guess many people don't have skinny bones that are misshapen and hurt to lie on!

On the way home I managed to whack my tender meso tumour with the seat belt buckle and it brought tears to my eyes (I don't wear seatbelts in cars) and for hours the thing ached.  When we got home Bear was so excited he knocked me flying and nearly broke my nose, sending blood spurting all over the place!  Was it worth it, yes just for 2 days of lying in sunshine I did feel better.  Food wasn't too much of a problem as I eat very little but the choice is much easier in Spain than Dubai, did I drink - no after having such a rotten headache on Friday I sipped one drink for hours on an evening. 

Hubby thinks I have changed and wants the olde me back, what can I say, I can't come off the minding\mood changing tablets without cold turkey and that my friend will not happen again, but these same tablets also don't agree with alcohol for me so Tea Total looks like the only way forward unless I want the worst headaches - I have had 2 of them now and both after having just a couple of drinks. 

Whoever said life was easy was a total liar, honestly some people don't know they are born when they roll out of bed and feel normal, I truly wish I was one of them, I can taste the envy in my mouth!

6 days and I do it all again with the girls, although I don't fancy the longer flight to Greece, but then we are staying for 7 nights and not 3. 

On another bad note, my CT scan still hasn't arrived, it will be so out of date by the time I receive it, if ever.

Keep up the good fight, wherever possible, and yes I am luckier than some at the moment as I'm not having to deal with chemo and for that I should be and I truly am grateful.

Holidays are coming

I have been trying to find as much info out on Excessive Bile as possible and believe it or not but there isn't really that much out there.  Lots on acid reflux but not alot for my newly diagnosed condition.  I think the chemo set it off and the removal of my gall bladder finished if off for me.  Whether I will be allowed chemo in the future will depend on what the stomach specialist says next Thursday but I know for certain I couldn't go through the last chemo scenario again with my insides opening up like a ripe tomato, yet I am worrying before I need to because chemo isn't on the table at the moment.

My lump is still a lump - did I expect it to go down - yes!   Although the burns have returned they are slight in comparison of prior to the radiotherapy so at least I am having some reprieve from burning pain, although my left boob is back feeling un-normal (for want of a better word).  I haven't heard from my oncologist or the specialist that carried out my radiotherapy and believe it or not but I still haven't received a copy of the scan from July. 

Our Nev was told he is on a 2 year waiting list for a lung biopsy can you believe that, I'm not sure whether the doctors around here just have it in for our family!  He has been told he has plaques from asbestos but how do they know they are plaques? 

Good to know that Steve's results were good last week, always a pick me up when we hear good fortune for others, just a shame they have to have meso to start with!

I received an email back from Dr Gilliams, the cost of thermal is approx £13,000 plus £150 for reading the scans.  Inflation has risen quite a bit in 4 years as I am sure it was £10,000 in 08 and no charge for reading scans.  I may as well wait until after the next scan to think about it otherwise it will cost me another £150 to see whether its worth waiting till after Christmas or doing beforehand.  I know I keep saying I am going to hold off treatment and take a relax but then I am always afraid I leave it all too late.  If I hadn't had cryo in March I would hate to think how large those 4 tumours would have grown to.

I am so looking forward to tomorrow, it will be our first holiday this year, ok its a long weekend, but to feel sun on my bones will be wonderful.  Have a lot to do today as well as throw our stuff in a suitcase tonight, thankfully the girls are coming over to dogsit so no worries there. 

Seems the sun has even come out up North, even though it still manages to rain at least once a day we have had blue sky's for the last week .. first ones since summer started!

I hope you all have a good weekend, don't let the meso ground you down and if it does write it down - get it out of your system.

Friday High's

I can't believe it but for the first time in months I overslept.  We had company arriving today but at 8.30 my stomach felt lousy and I didn't want to get up, I turned over and went back to sleep.  I only hope this doesn't happen next weekend otherwise we'll miss the plane!  Hubby got me up and after a coffee that sat heavily I started feeling somewhat human.  I know why my stomach was off, we had chips both Wednesday and Thursday night so my own fault.

Mirela and her sister came up for a quick visit, we weren't sure who she was visiting as the majority of the time Alex and Mirela were with Bear on the floor.  He posed all day for photo's and certainly enjoyed all the fuss, leaving Lexi a little jealous.

It has been some 2 years since we have seen Mirela and to see her in the UK was wonderful.  It will be a long time before she visits again so I hope she enjoyed seeing the North East for a few hours.

My lump isn't improving, the fire flame pains have returned for sure.  I remember meeting a guy at a carers day who had had mistletoe injected directly into his meso lumps and they disappeared - if anyone out there knows how this is done by whom please let me know.  I haven't been a full on advocate of mistletoe but in this case I think it is worth a shot.

I have also emailed Dr Gilliams to get some further information on the thermal ablation, I can feel 2 little peas in my back on the right side when I lie down, and a couple in my left.  I am still wondering what happens to this lump - now the radiotherapy has been over 1 week will it shrink and go down or stay the same size as it is now?  Usually my radiotherapy has only been on drain sites for prevention and usually hits my bones.

For the first time in weeks I am pouring myself a B & C so time for a drink and hopefully my excessive bile will give me a break for a day.

Jan

Picked myself up

I managed to pick myself up on Saturday, whether it was will power or not I don't know but after I had a shower I put one of those pain patches on my left bottom ribs and that seemed to remove the feeling of being stuck.

Sunday was a much better day, even managed to walk the dogs in the wind, although it did take my breath away a couple of times.  Although walking the dogs wasn't that difficult as Bear didn't want to wander far from Lexi and she didn't want to wander far from us.  Poor Bear is so frustrated, he hasn't a clue really what to do just knows that his body has to do something. 

I had quite a disturbed night with him, he was barking on and off all night crying for her to come to him and scratching at doors.  At one point when I came down the stairs to him I slipped and fell back over, giving my head a whack on the stairs. 

Since Wednesday the meso lump felt like it was really improving but last night I noticed I had quite a few fire flare pains and the lump seemed to weigh heavy on my chest.  I do hope the treatment has worked.  Over the weekend I spoke to Chris Scott who was diagnosed the same time as me, he is half way through his 3rd round of Alimta.  The nausea seems worse this time was his only complaint, not sure whether there is more to that but Chris always seemed to tolerate the treatment well.

Alimta seems to do the job with his meso, he was telling me he had growth of some 7mm and that they decided to start the chemo straight away.  Fingers crossed it carries on doing its job for him.

Better try and get a work head on this morning, not that I feel like going in at all.  Think I might take Bear in with me and give both dogs a break, Lexi from having her ears washed out and Bear from panting constantly.

live for the moment as they say .....

Nothing Day looming

After suffering the nightmare pains the other night I didn't take my pregabalin (only on 1 a day) and then last night I forgot again.  From such a careful routine to out of the window isn't normal for me.  This morning I woke up with that terrible anxiety feeling.  I know why - I am going on a cold turkey route so I have taken the pregabalin, if I am to come off them then I guess its one every other day - so I am a dumbie for forgetting last nights.  Should I come off them I don't really know, did they do any good I can't really say.

Having visited a few of the meso warriers sites this morning I feel happier knowing that everyone is on an up beat, its only me that's ever miserable!!!

Bear is chasing Lexi everywhere she goes and she is flirting outragiously with him, moving her tail and letting him lick her ears ..  this started at about 4 am this morning so I guess it will be dog patrol for the next 5 days.  The minute she snaps at him the time is over, so unfair on Bear but Lexi is far to old to have an operations and I doubt Bear would forgive me if his bits were cut, good grief it took him months after his bits were shaved for him to come near me.

The sky is so grey and reflecting my mood perfectly, I haven't even had a shower yet and its nearly 10, just can't seem to get motivated.  I got up, went back to bed then got back up this morning all by 9 am.  Maybe pushing myself will do some good.

On a bright note one of our friends from Dubai is visiting next weekend, her sister is starting Manchester Uni so we shall have a house full.  At least when you are around people you always make the effort and no one ever really see's how bad you feel.  All I can say is I am really pleased it isn't today because I don't think I could find that false wellness.

Neville came through his operation ok on Thursday and nothing sinnister was discovered so I am pleased, just wish he would find out what was happening with his lungs.  MS is a terrible disease causing so many off shoots of problems. 

I should move from this spot and try and force a something day, but alas I really do feel like I am in a nothing day and all I want to do is curl up, if my side didn't ache at the bottom of my ribs I would certainly be curled up on the sofa but the need to stretch it out is winning.  Think I'll find one of those magic pain patches and shove it on.

Lets hope Sunday lifts the weather and my mood!

Unsettling feeling

After having my 4 treatments without any tingling on my bones or redness to my skin I was relieved, tired but happy.  I thought there you are see how you like being blasted a scene from Dirty Harry came to my mind as I sat in the car coming home.

Then suddenly as I sat watching something on TV I started with a pain between my heart and right breast, by the time I had really acknowledged it the pain was spreading out to my shoulder through into my back and down to my kidney area.  The velocity of it was unbelievable and unbearable, back to pre 2009 with heart session pains.  Thankfully I have a stock of morphine, but 20 didn't touch it, I hung out for 20 minutes before taking another 20, but the pain was tearing through me and I felt sick, whether it was from the pain or not I will never know.  After another 25 minutes I took another 10 of morphine, enough to finally take me to the otherside of the pain.  With hotwater bottle held against my kidney\back I went to bed.  The pain eased slowly in my chest and I was left shaken.  It brought back all those terrible memories of sessions when I didn't know whether my heart would hold out, only this time it wasn't in that area. 

I woke this morning feeling drained and totally washed out, I am sure the extra morphine hasn't helped either but I am left uncertain as to whether the pain was caused by maybe a muscle being inflamed by the radiotherapy or a quick bout of growth from the meso in my right lung.  I had forgotten how bad the pains I went through were and I know now that as I am older and physically a lot weaker I doubt I can handle to many of these again. 

The burning flares have calmed down since I started treatment on Monday, so has the burning that was in my side and left armpit.  I contacted Dr Abtin and asked if the needle could have brought back a meso cell and he doesn't believe it could have as they freeze the area from all punctures, he did tell me that I had a large nodule in that area but would need to see the SCAN.  I said to my Doc this morning everytime a scan is an important one I never seem to get it in time do I.  I think I am becoming paranoid about doctors and me.

The touble with getting to know your body so well is that you know things aren't right, the burning flares I feel are the small tumours growing, it probably means its the nerves that are getting touched in medical terms but to us that means something has to be growing for the nerves to be put under pressure.  At least the Doc has put my request in for the next scan, hopefully it should come through for October!

As I can be ruled out from most of trials going on at the moment, chemo is for emergency, if the right lung has started to go then I will certainly try out London's thermal ablation - at least it doesn't involve a long flight to LA and stopping away for more than 1 night.  I know I am jumping the gun again and as much as I put meso into the back of my mind it keeps popping right back into the forefront at the moment.

On that cheery note I think I should close, take care everyone we shall not be beaten.

Treatments

I didn't get blasted on Thursday as I had hoped but nevertheless the radiation treatment starts on Monday.  To my shock and horror the tumour is a mass 4cm x 4cm and still growing.  How could I miss this, all I can feel is a hard walnut but the tissue underneath is tender and the Specialist had a good probe. 

The bad news is that the treatment will shrink it only, no killing off the root of the matter and I feel sick to my stomach.  All those drains and one needle has caused this.  Now I am paranoid in case it is growing everywhere and I don't know.

Gary and I have asked the question of putting alimta directly into the mass but this is unheard of, we have also asked about still having it removed after the shrinkage but the response so far isn't favourable. 

I will have to start thinking of the future shortly, do I seriously think about requesting places on trails or just take a chemo that has been used for meso.  The thought of chemo makes my insides cringe, after all I went through last time and the time before that I don't think I have the strength of mind let alone a strong enough body to cope with it.

Then again maybe I am jumping the gun and this isn't a sign of it getting out of hand, its just a one off.  I know I have the other tumours growing but hopeful they stay singular and slow, just your mind starts you off on a path and your imagine takes over.

Just in case I have booked a holiday with my best friends and we are going to Kos for a week in October.  I have never left Gary before and I found it awkward at first saying I wanted to do it.  I do hope the weather is still hot then.  At least I don't have to worry about dog sitters for this.  I have talked Gary into a long weekend, hopefully Lexi is out of season by then otherwise Chris and Lorraine are going to have a hard time!

I know I think it all the time but I do hope that something soon comes out and everyone agrees its a good way to deal with meso. 

Blasting Day

Today's the day my friend will get a blasting.  I am due at the Freeman's Cancer Centre at 10 to get measured and zapped.  I have no idea whether it's 1 or 5 sessions at the moment, all I do know is that the lump has grown.

The oddest thing I am noticing is the little fire spots I keep getting inside, not just where the lump is though and I fear its probably the rest of the tumours talking to each other.  Its like little red hot needles suddenly igniting in your body then going out.  I have had them on and off for a while but now they seem to be more noticeable and much more often.  My biggest fear is that once it gets a hold again there is no stopping this damn cancer.

On a brighter note I had an email from Ben Leer asking if I could ask other meso sufferers to get in touch with him.  He set up the website for pleuramesothelioma and is now working on the mother website asbestos.com.  They are asking for a small questionnaire to be completed, if you would like to take part could you email him on

Ben Leer <bleer@asbestos.com>

Oh well, time is looming so I had better get my act together, I am not a morning person anymore and the thought of rushing around doesn't appeal at all.

Lyndia, am doing something positive and finally getting a few days away!!!