Life between Mesothelioma (filing away the memories)

I spent most of yesterday transferring photos from the hard drive of the computer to a separate hard drive.  As hubby is determined to get me into photography I thought I had better tidy up the computer.  Our digital photo's start at Xmas 04 and it was strange going back over the dates.  Here we went to Dubai after Radiotherapy, then in the middle of Chemo, here was the safari, then the cruise etc.

It has made me wonder, for the thousandth time if I did make the most of my cancer free days.  Looking at the photo's I did more in 05 than I have done from the Op in 09 to today.  I know that I have, even if I haven't holidayed all over the world, but I think I spend to much time worrying over things than living them.  Even my aromatherapist said I seemed more at  home with myself recently, her meaning since the meso has returned as I'm not on edge all the time wondering what the next scan will say.   Even though now it is the worry of how much the mesothelioma has grown I wonder if she has a point.

I have so much still to do with my life, yet I keep procrastinating because somewhere in my brain I think I will reach old age! 

I am wondering what will happen to my growth and re-read Ronnie's posts when she had hers on her back, problem was I couldn't find the post that said how it went after the radiotherapy.  If someone out there knows could they let me know.  I said to hubby the other night, if it keeps growing at least it might just grow into my boob, although I will be lopsided!

This time of year the birdfeeders are full and my windowsill in the office has its plate of birdseed.  I love watching the greenfinch, blue tits and robins come to the window.  Especially when they tap the window because the plate is empty.   I wonder how many years left I will have the privilege of watching this.

Funny but I do feel comfortable with myself, I am more like my old self and think that maybe lifting the pregab to its proper dose of 2 has put back the balance of signals in my brain cell.

Bear stealing our cuppa

I am going to have to watch Bear's chin again, last night he put his head in my hands and rubbed his chin.  On inspection I didn't find anything but I don't want him having those hot spots again.  Although I have clipped a mass of hair just above his tail because he had dry spots and I want to get air to the skin.  Now he looks deformed!

But he does love a cup of tea if he gets a chance so should you ever visit, never put your mug down otherwise his nose is in it.

Sitting here isn't getting the most out of today,  still have to do more at mam's and finish our task of yesterday.   For years I have been saying I am going to make DVD's of our time together, pulling info off old camcorder tapes and rescan old photo's etc, but I never seem to find that time because it is a dedicated project and I doubt I will ever complete it.  Life is just too short, not just for us with meso but for everyone.

Wisdom for today meso warriors, enjoy the moment!
Jan

Hope its not in the Pericardium

I was thinking about Debbie undergoing her gall bladder operation and it brought back terrible memories of the pain I went through from 06 to 09. 

I remember what I called a near heart attack session every 10 to 12 weeks.  I had asked if it was the cancer in my heart and my oncologist said no and it was unheard of, the new chest man I was seeing said my heart was sound so my GP thought it wise to see if it was gall stones.

I did have gallstones so in the hope it would be one less pain to have organise around I had the gall bladder removed.  As we drove up to the hospital I wanted to turn around and go home.  Also I had arranged to do an interview for Action Day 3 days after surgery - which I still did only I was drugged up with so many painkillers and a friend came and did my makeup so I didn't look ill.

While I was in recovery I went into a session, the pain in my heart area was terrible and for the rest of the night in hospital I was in pain.  It also didn't help that they had nicked a vein so I had internal bleeding too.

The 10 - 12 week sessions continued until the operation where the culprit had been the meso living around my heart.  (It had attached to the heart sac - the pericardium)  I guess the sessions were caused by growth, and I honestly think in my case the meso had a growth pattern, hence every 10 to 12 weeks.  Through the entire experience pre-diagnosis I had sessions, usually every 12 weeks. 

I said to my Doc "that was a waste of time" but he assured me that had the stones started causing problems I was better off loosing the gallbladder while I was reasonably healthy.

I hope and pray that it is the stones causing Debbie's problems. 

Remember mesothelioma isn't the same in everyone I am A-Typical which means non of my illness has not gone the way the text books explain - but when patterns form I believe we should always take notice.

Debbie probably will not know whether its the stones or the meso until she has gone through 4 months of no pain and I for one will keep my fingers crossed for her.

Yesterday I kept my appointment and had my mammogram, I did manage to have my left breast squashed in the vice, painful, but I thought it could be helpful to see how far (if they report back on it) the meso has travelled and if it is affecting anything in there.  I am having a lot of pain both where the extended mass has grown and where it travels down.  The lump thankfully just missed the vice as it is flatish against the ribs - very thoughtful of meso wasn't it!

On that note I had better get moving, I have a busy day ahead with site visits and then hopefully catch up on some office work.

Quickly adding having raised the pregab to 2 I am starting to feel more human, long may that continue.

Meso Scan on the horizon

We are all coming up to the time of scans again, the 3 or 4 months fly past.  I still can't believe some still only get an x ray every 3 months, which we all know doesn't actually show much, especially with meso.

Hubby sat me down on Saturday and discussed how I am doing on the pregabin, not good in his eyes, and to be honest not good in my own mind.  Nevertheless I have increased the dose to 2 to see if it helps, then maybe think about dropping them and going back to increasing my daily pain.  We don't seem to have much choice pain or tablets!

My breast screening is on Thursday, that is surely going to be fun and I do hope that they excuse my left side completely, although if they do just an ultra sound of it maybe the tumour might show up. 

This time 3 years ago no one thought I had much time left, it still amazes me that I am still here even though I started out with mixed Epithelioid and Sarcomatoid cells,  thankfully I believe only the Epithelioid ones have remained, the slow growing variety instead of the intense aggressive ones.  Yet meso can change so fast from being dormant or slow to all out war, regardless of strain. 

Hubby got into photography a couple of years ago and has asked for a new camera for Christmas, his aim is to get me to use his old one so we can share a hobby together.  He is into taking photos of birds whereas my choice would be animals or scenery, maybe if I get ok at it then I might sweetheart him to go back on a safari one day. 

I went back down mam's this weekend and we spent a couple of hours going through her things, each time I picked something up I could smell her aroma and I am finding it emotionally hard to pack her clothes up for charity.  Each time I walk in I expect her to be sat there and I doubt that will ever go.  I said to hubby "Maybe when we get old we should down size" the hurt that shot across his eyes was painful.  I wish I could think sometimes before I speak. 

I still have slight backache and it occurred to us both today that maybe the flight helped increase the fluid in my lung, if that is what it is.  Now that some of the meso is visible and I can actually touch it, it puts the cancer in a different light.  I find because it aches and has fire sparks I keep touching it and am sure it is growing, I should draw a line around it so I can keep track but then if it grew out of the line I would be gutted.

On such a terrible thought I will sign off for today.  Keep your chins up everyone, we will keep fighting back and somewhere out there a cure will come through. 

Jan

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.