Hopefully a higher place

I was saddened to hear that Ronny had lost her fight with meso, another warrior who kept a blog of her fight with meso.  It came as a shock as I had just visited her blog to see how the chemo was going and then Lyn my meso mate send me a txt telling me the bad news.  I wish there were words we could say that made everything alright but there isn't and all I can do is send her family my respect and condolences. 

We are fighting this cancer with everything we have got and yes we can starve off the disease for a while, each person I know has hit this cancer with everything in their reach, putting themselves through pain, illness and what do we get at the end of the treatments, maybe years or maybe just a few short months.  I know that I am not ready to go, and I know that everyone else I know feels the same.

I know that I have been unlucky where major pain has besieged most of my time with meso and there are days when I do feel enough is enough, but that lasts at the most just that day.  I get scared of what is to come, if there is nothing else I can do, if I had the operation too early and maybe I could have waited longer which would then have given me more time this side of the operation before the bloody cancer started growing back.  We are unfortunate not to have foresight and hindsight is of no use to us because we just can't alter our decisions once they have been executed.

On Wednesday I knew I was out of sorts, whether it was just me or the meso at that time I didn't know and I was scared.  Having no MDT on my side, an oncologist who is private and mostly not available and a GP that you just can't call on isn't much help.  My temp did what it use to do and dropped to 35, meso is on the war path and my body went into overdrive to fight it off, causing adrenalin to rush through my veins, my stomach and I was in a state.  I finally managed to get in to see a doc at 6pm and was prescribed antibiotics but all I wanted him to do was knock me out so I didn't feel this rush that was taking over my body and mind.  I remember years ago I was told that our bodies don't drop that low, well believe me they do.  Has anyone else out there gone through this?  Hubby has banned me from going to work so here I am at home, I can't be bothered to do anything but at the same time I'm bored because I want to do something. 

I keep telling myself I am going to do a photo album for hubby from the time we met and yes today would be an ideal time to start it but once I start doing that then I will be awash with grief because it will remind me that I won't be here to see my twilight years with him.

I'm not sure whether my emotions are running high due to the possible infection, the pregabin or just life itself, or is it the fact that another person has lost the battle and nearly everyone in the meso circle has new growth. 

I hate loosing a day to nothingness but I fear that that is what today will be, which adds nothing to our lives especially as our days are numbered.

I hope there is a higher life and Ronny is now whole, cleansed of meso and watching over her family.

Jan

No Pain in Warmth

Back 3 days and already the aches begin, is it the warmth on the bones or the fact that I don't do anything on holiday that affects it.  I still felt stomach yak (But again not so bad, even though we didn't eat till 8.30 each night).

It was good to be in the heat, although I know I jinxed the weather again as 2 1/2 days in the clouds came and we had storms.  The temperature was still in the early 20's though so walking around was ok.  It is pretty flat around all the popular resort areas so for breathing and walking Kos is ideal.

Why I have been away an appointment has come for my next CT Scan, 1st November, and a Breast Cancer screening appointment.  That is going to be fun due to the lump I have - I am wondering whether they will just do my right and forget about the left!

I should count my lucky stars that I am still here and able to do the things I pretty much want to and after catching up on my fellow meso's blogs it made that point much more poignant.  Hubby has been planning hols for next year while I have been away and I hope to God I will still be here to enjoy them.  In all the years since this started we have never booked anything more than 10 weeks ahead expect once and we had to cancel, but I am going to stay positive.

For saying the weather was cloudy we still got a reasonable colour between the three of us. We booked the holiday so we could get some girlie time together, we have known each other over 30 years and these days we don't seem to get that girlie time anymore.  Infact since July 10 we haven't spent that much time together at all.

Cancer does change you, your outlook changes, what you want from life is higher because you prioritise things differently and of course, you aren't as fit as everyone else. 

I guess back to the grindstone full on next week and all this positive energy will be gone and my pains will be ruling my life again.  I am still toying with the idea of leaving work but then what would I do with myself all day and even more importantly how would we fund medical costs if I need to go down the thermal ablation route or whatever other treatment that comes up that costs money?

While I was away hubby had the bedroom decorated and most of the carpets cleaned - it was an ideal opportunity so I didn't breathe in fumes or have to freeze to death with the doors wide open.  I am sure the carpets won't stay clean long with Bear and Lexi, but the house certainly smelt a lot fresher. 

To be honest I would love to go on holiday again just after Christmas, I so need that sun, wonder who I could rope in to dog sit, but I hate the travelling side of things. Waiting around at airports and sitting on planes isn't my idea of fun anymore.  At least when we came home from Kos we were in the fresh air until 30 minutes before the plane took off. 

Back to planet earth and the reality of living with meso ....

Jan

Conference Day - USA

I missed our patient\carers day in London due to hols and preparation time but have just received an email where we can watch the USA one on line today.

If you are interested click on the link below:

http://www.asbestos.com/news/2011/10/13/watch-the-3rd-focus-on-mesothelioma-conference-from-home-this-friday/

Will catch up later with news and gossip but I just want to quickly say to Amanda that I am so pleased all went well recently. Although it could have been better, that section on the bottom of our lung is such a damn nuisance isn't it!!!  As for the Gabapenten and its son of, Pregab I still haven't lifted the tablets to more than 1, I think hubby now feels safe enough to display the knives again on the kitchen top I am still mood swinging.  As for pain I still have some stabbing pains in my arm, but less where my new lump is - but it could be from the radiation rather than change in tablets.  I need to lift to 2 but haven't had the guts yet.  Overall I think I am coping better on the pregab though - if that's any help.  Any tablet that plays with your head causes some other problems, especially when they weren't originally designed as pain killers. 

For those who are totally lost off visit Amanda's blog on

http://ajandray.wordpress.com/

Amanda could you email me directly if possible?

Catch up later, felt so much better in the sun, been back 2 days and already feeling achy.

Jan

Summers here!

What a week, the warmth has really cheered me up and I do feel better for it.  Yesterday was carer's day but with so much going on I knew I won't have the energy left to get to it and be ready for hols on Tuesday, that is one of the things that annoys me now, not being able to run from one thing to another without thinking about it.  I hope it was a good and informative day for those who attended.

I also received my scan on Thursday, the password came Friday so last night I had a quick look.  I look so deformed, my heart is somewhere over my left, my right lung being so big.  I can see the singular lumps but not sure what is thickening and what isn't. 

Could that top arrow point to the mass now outside my body (I did the arrows but they didn't come out right)  or is it that lighter grey underneath and my three arrows below point to small raised lumps.  

This lump has really grown, but overall I don't think to my inexperienced eye that the meso is that bad, sure there are several lumps like this one around parts of the lung but I have decided to remain cool about it all.

I know these comments will change next week but at the moment I have decided as long as it remains slow growing I can get on with life.

The only really problem I am having with the meso is the mass just above my breast and my breast itself.  I so want the radiation to still be working and killing it off but I doesn't feel any better - unless that has something to do with the seatbelt giving it a thud! Hubby thinks I should see about getting it cut out to help ease the pain -something to ask about again but how many operations can a body endure!


Although after the last knock on my already ugly looking nose I am seriously considering a nose job, my luck would be that it would be broke within a few months of having it fixed!  Wouldn't mind my eye lines being removed, a new pair of boobs, a face lift .... the list goes on!



Wednesday is fast approaching and after sitting out in the sun for a full day yesterday I am so looking forward to the 6 lazy days ahead, no work just pure rest. 

I went to see the stomach specialist, he told me I was on the best medicine for my stomach and that it was best to leave things as they are unless I get worse.  He doesn't know why I have excessive acid and he didn't want to start running scans etc. 

My moods are all over again (so my husband tells me), maybe I should increase the pregabin back up to the same dosage as the gabapentin but then if I ever get to come off it, its a long journey back down.  Decisions we have to make - why can't they be simple ones like what should I buy the black or the brown shoes!

On that note I had better get moving, as its raining I thought I should try and go and sort some of mam's stuff out, still haven't done anything, its like she is just away for a couple of weeks - ok its been months, but we have decided to rent her house out and I really must pack her things away, so I guess today will not be an easy day emotionally.

Keep stable everyone, don't let the meso grind us down.

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.