Depressing Read my Meso circle

Where would I be without my meso circle? You have been there for so many years, long before I actually started to blog and I do appreciate the friendships we have made, the emails we share.  Even though I have never met many of you I feel that we have all been together fighting this battle together.  We pick each other up at times of need, show empathy when required and make each other laugh with the odd joke or comment on normal life.

 

Part of me wishes I had started the blog a long time before, but I wasn't sure how to create one, but there again through chemo I think I may have wrote comments that would turn everyone against even trying it.  Hubby and I were discussing chemo last night and how I will feel during it.  He said if I had wrote about it then maybe I would stay well away from it, which made me say something like "When I'm gone you can always read my blog if you want to remember something" didn't that sound cold and heartless.

 

I have to admit that I am actually terrified this time round, I know that before the operation in 09 I thought my time was here and that I was facing my last few months of life, but I still had the option of surgery and I don't think I felt as desperate as I do now.  Three years later that thought is always in my thoughts.  During the years of 04 to 09 I knew I had the option of surgery in the background, now that the operation is no longer an option - been there done that - its back to chemo or trial.  Then its the - what if the trial doesn't work will I be well enough for chemo - if I do chemo first what if it doesn't work and I have nothing left.  I know that many go through these same thoughts.  My friend Danny tried chemo again but it didn't work and he died, bravely I may add, he took it on the chin and ensured he made the last few months of his life memorable.  I don't think I can do that, I haven't that courage inside.  I am truly scared of dying, the pain that will make each day worse, the fear of being stuck in a nightmare once they decide I need a driver pumping me full of morphine so that my eyes can't open.  I hold these fears to myself, having only ever shared them on this blog.  I know that only a few will read them, strangers to my life in many ways, but its my one place of total release.  I can write this so easily because I know that those close never read this, so they don't know the thoughts that race through my mind. 

 

Hubby can feel the change in my demure, he says since the scan I seem down and I always talk about it. I told him its usually the only time we do talk about it.  The period of getting the results makes us talk about it, this lasts a few weeks then it is never normally mentioned until the next results.  This time is different, the meso is more aggressive than it has been over the last 2 years, not that I have the size of one of Mavis's tumours sitting in my chest, but its the heart area again that scares me so much.  That's another thing this time, usually they quote the sizes of the singular tumours that have grown, none this time, just multiple scattered pleural nodules and axillary lymph nodes.  I wonder if my 3rd boob has grown any further than its 7cm x 7cm or how much closer it has broke upto the underlying skin of my chest. 

 

I need an escape from my mind, a place where mesothelioma doesn't exist.  I use to read the macmillan sites, once they finally got a section for meso, but they made me depressed.  I haven't been on the site for a year or so.  Now I've joined face book and some days that makes me feel the same.  Yet here I am writing my heart out and bringing sadness to my blog.

 

I know that if I do Chemo I won't be going anywhere, I'll end up with weight loss, my stomach lining destroyed, my water works won't be normal again for a good 6 months, maybe it might be different this time.  Why is it some can just go through chemo so easily, by day 4 I haven't a stomach - food and water are like acid the minute they leave my mouth and travel the distance of my throat to the intestines, three days of pure agony, then the slow climb back to stability - but I will do it, I have to do it as I don't want to die, I'm not ready to die, I'm too young to die!  How do we prepare ourselves for death.  It could be years without doing anything if it was just in my lung, my left lung is shot anyway but the heart, why did it have to come back there!  Why can't they go in and slice it off, peel it like an orange .... I know they can't but it doesn't stop my brain from yelling this out every minute of every hour.

 

Will the trial work?  Will I even get on the trial?  Should I do Chemo instead of the Trial?

 

I need direction but hubby has reiterated the fact that whatever I do I will blame myself for not doing the right thing but then every decision I have made so far as kept me alive, each choice since 07 has been mine.  I toyed with the idea that I did the surgery too early, on reading the doctors notes back I did it at the right time, any later and I would have been ruled out as it would have been through the chest wall.  I have deferred this scan because I wanted one last good summer with hubby, I knew it was getting bad but I wanted to keep it out of my mind, I had wrote before that my heart was heavy and I feared it was there, April 11 it was showing its ugly head near the heart, it was just a matter of time.  So here I am feeling sorry for myself, not an attitude I wish to have for long.  I get sick and tired of hearing be positive, you've done so well, you have had so long.  I know a guy who was diagnosed the same time as me, he is ill now, but over the same length of time has had only 3 sets of treatments me, I have loads to last the same length of time, have I had Quality - I'm not sure at times but I did have life. 

 

No one has the same disease, it is different in each and every one of us and that's what you have to remember my meso friends.... some can have chemo and it doesn't affect them but stops the meso, other have a terrible time and no remission, some have both.  Some have meso that is a sheet, others a little thickening, others a couple of over large tumours.  Some have mixed strains, it doesn't matter we are all different, hence the problems the medical buffins have to fix us. 

 

Tomorrow is another day, thanks for letting me get this out, hopefully my brain will stop yelling meso at me and let me get back to having a life, just wish it was without pain.  They say we can get you on top of the pain but at what cost, zombie Jan isn't who I want to be, so I live with the pain. 

 

Today I went with the dogs and hubby over the fields, the wind was so bad I had to turn around and wait in the car, Bear didn't know which way to go - follow me or hubby.  In the end he followed hubby but kept stopping and looking for me.  It doesn't just affect me or you it affects everyone in some way.  I sat in the car and wondered will I get to be here next summer and hopefully be able to go out everyday with the dogs, it didn't happen this year - we didn't have a summer!

 

On that cheerful note to end such a terrible posting I bid you a good day and hope and pray that none of you are feeling this way or facing this at the moment.  If you are please feel free to let it out on an email to me, somehow it always takes your own worries away when you worry about someone else.

Scan Results In

Today was the day I wished I had been able to work from home, the rain and wind both bad as I left the house.  It started an early day, dropping hubby's car off, work early then docs for my blood results.  I checked my scan was in but I wasn't able to get the results.  The nurse promised she would remind my GP.  I decided at lunchtime I would work from home and hopefully before I went to see the oncologist (I arranged to see him a couple of weeks back) I would know what the results were.

 

As I sat working away our Bear decided he wanted to sit out in the rain, 5 minutes after running around the garden he banged to come in, flew into the office to see me and shook, the water flew from him all over the computer, the papers on my desk, the walls, everywhere.  I had to pin him down so Hubby could towel him down.

I had no idea which part to hold as he was drenched!  I tried to work then the phone rang, my GP apologised and read out the results.  It wasn't what I wanted to hear but at least I know again that I know my body well.  The heart pains are the meso and over time, unless some kind of treatment works, they will get worse, to the point of obstructing the heart when it tries to pump.  I also have fluid trapped on the right side of the heart within the pericardium, this could be drained but only when critical.

So at 4pm in the pouring rain and strong winds we went to the hospital.  Our new oncologist was running late but we didn't mind, we knew what the scan said just needed it explaining more in a way we can understand.  The words Quality came up several times, hubby was really good as he kept putting across the fact that I want treatment and even if both him and my old oncologist don't really think I can tolerate Alimta again I am willing to give it a go.  Its over 5 years since it last poisoned my system and hopefully my body and immune system have forgotten what it is.  Although the hope to get on the ADAMs trial is foremost in my plan for the next treatment routine.  I asked about trying other chemo's but because they aren't proven or recognised for meso the answer is no.  In fact even challenging again isn't really acceptable, but why aren't they.  I hate the thought that this cancer can crush my heart, in more ways than one it seems! 

 

My window is now, lets hope I can get on this trial sooner rather than later, all I know is I need to try and stay as well as possible, any failing in health will rule out chemo altogether.  At least my oncologist says it straight and gives me it right between the eyes.  No gentle words or maybe's etc, 2 years max with treatment, he doesn't know me or my determination to stay alive.

 

My fellow meso warriors are fairing so differently, Lou has had bad news too, Steve is starting chemo again after 3 years of remission, Mavis has remained Stable, Stable is good but shame there was no shrinkage, especially after all she went through. 

 

I thought I was too young at 44 to die, I still think the same now even though I am now 52!  If I didn't have meso I would be so healthy, its so unfair but its something I can't change.  I just know those heart pains and what I went through from 07 to 09, every 10 weeks when they happened.  I sense my meso growing, it does it in spurts, maybe that is what makes me such an odd ball to others but it still doesn't help does it.  We were told again that the average life span is still one year from diagnosis, if that was suppose to make me feel better it didn't, no one should die, we didn't do anything to deserve this but we can't change the past.  I hope those who are new to this battle help find a cure and hopefully in time to save many of the people I have come to know, respect and love throughout my own meso journey.

 

On such a note I am close tonight and thank God that I am still here.

This week

I didn't want to return to work but once arriving into the office on Monday I was back into the swing of things.  One of my friends at work lost her sister to cancer while I was away, I think me appearing set her off again so I sent her home.  It was also her first day back since her sister died and I think with everyone saying Sorry and How are you made it worse.  Another day to pull together doesn't hurt anyone.

 

Hubby has come home a new person, shower has been cleaned, garden tidied up, house cleaned, it seems that whatever happened on holiday has sparked him into action.  I also think he is wanting to get on top of everything in case the decision gets made that I will be doing some sort of treatment.

 

I had to have my bloods taken at the Doctors, apparently my yearly check up, I also took the opportunity of getting hubby booked in, he keeps ignoring his yearly checkup letters, my flu jab is booked for Monday morning and hopefully the Doc will give me my results of the scan.  I know he was suppose to ring Friday evening but maybe something came up.

 

The stomach tablets seem to be settling this time, no headaches but full of wind.  This time I am taking them at 8pm instead of with my morphine, although I have just ordered something called Milk Thistle, it helps clean the insides and boost immunity, whether it does or not I will find out.

 

On facebook we have created a Page called Mesothelioma Blog's, its a onestop place where personal blogs and informative blogs can be reached without having to search google for anything new, hopefully we will be informed of others that we can link on it.

 

Yesterday was another sad day, I haven't stepped into mam's house for months.  We need to decide what we are going to do with it, so as hubby cut the grass I started packing ornaments and pictures away.  I just can't bear throwing things out.  Although we have sent both mam's and dad's clothes to charities and I did start on things I just can't get it finished.  I did throw out some stuff yesterday and made another box of goodies for charity but I just don't feel I can give it up.  My brother's need to be more involved because they don't hoard like I do.  I opened her top drawer in the bedroom where her scarfs and gloves were kept.  I have given some away but I just can't do the rest.  I came across an unopened pair of stockings, looking at the front of the packet I would say they were purchased sometime just after the war.  What do I do with those?

 

Today we woke up to this wonderful skyline

So we thought we will have a beautiful day, in fact the sky today should have been a summers day it was clear blue, although the temperature wasn't that good.



As I did face book this morning hubby cut down the bushes that block our view from the drive so once showered and dressed I came out and helped shred all the branches.  We spent some 2 hours tidying up the front and what a difference.  Mind the cars certainly come past our house at a fast speed, at one point one was that close I thought it was going to hit me.  They travel our road at some 60 mph when it should be 30 through the village.  One day last week I nearly did have an accident pulling in, the other driver tried to overtake me as I was indicating to turn right, she thought I was turning left.  Thankfully no one was injured and only a small scratch on her car, although she was quite shaken, heavens above why she thought I was turning left when my indicator was on right.

After a late lunch we took the mutts for a walk over the woods, I have a feeling Lexi is coming into season again, Bear can't stay away from her backend.  That's all we need, him wanting to clean her ears out with his thick drool going further into the ear and making her wax harder!

 

I haven't heard anything about the trial in Hull so have asked my GP to write and put me forward, I wish I knew what to do and if to do it at all.  I am hoping the meso hasn't grown much but I know that is in dreamworld and not this one, but its back to do I or don't I, do I wait again, it's been two years last April since Dr Abtin noted new growth.  Although I haven't been treatment free, having radiotherapy on my left boob and cryoablation on 4 tumours.

 

I am speaking at the Carers Day on 6th October, I will mention the benefits of cryo-ablation and hopefully get someone in the specialist side to think about it.  I know that the doctors in UCLA would be willing to come to the UK and demonstrate its use, in fact after speaking with Mavis I believe she would be a good candidate for this treatment.

 

We have to hold onto our faith that something will be out there for us, there are so many of us with this cancer and I read somewhere that they have now put back the date to 2020 when we will reach the height of this cancer, in 04 they said that by 2016 cases would be at their highest and then fall from then.  It just shows no one knows what they are dealing with.

 

Mesothelioma is the most under researched and strangest cancer there is, it doesn't have the same growth pattern in any patient, same response to treatment from one to another.  Symptoms aren't always the same, resistance to treatment varies, growth style even within the same strain doesn't match.  When I was diagnosed I had mixed strain and some unidentified, where does that leave us?

 

The thought of dying doesn't worry me as much as the way I am going to die, that is what scares me.  Sometimes Bear comes upstairs about 6 am to go out, I go down let him out and come back to bed.  When I get back into bed I sometimes find I can't breath and the fear hits that this is what it will be like as my card gets marked. 

 

Enough from me, I feel like I have written a book tonight instead of updating the blog.  I hope that all those on treatment get good results and those in remission stay there. 

 

If I have good news I will post a naked man running round Woolworth's window tomorrow, otherwise I will detail what has happened.

 

Hope you have had a good weekend and this week brings nice and unexpected things.

Jan

 

 

 

 

Back to Normal

Its been a while and here I am back at home and nothing feels different, but why should it?  I can't expect hubby to change overnight from keeping so much bottled up for 8 years to talking about it casually.  Thankfully his birthday's a year away and I hope that I will be here to celebrate it and hopefully we enjoy it together.

 

My scan is tomorrow, I pray it is ok and they say it is slow growing but the additional heart area pain is intense and my third boob has quite a few new shooting pains.  The fear is that it isn't slow and has grown a lot but then the pain could be caused by just a small growth catching another nerve that hasn't been touched before. 

 

I was shocked when talking to Mavis on Sunday, her tumours - individual ones - are 17cm, I thought 5cm was bad.  It just shows how different each person is with this disease, thickening around the bottom and individual tumours or thickening or tumours.  No one person seems to have the same symptoms or pain - how can they ever find a treatment that covers us all?

 

The cruise was wonderful, even if we did have stormy weather on the last two days and couldn't do much.  I now know why it helps to have one day at sea in the middle, it gives you a break to catch up on rest.  Its up, breakfast, off the boat and run around, lunch, a little sunbathing, shower, cocktails, dinner then bed!  We didn't have a scheduled day at sea but ended up with one at the end. 

This was around 10 am in Italy, that's two people rowing from their boat to the marina, I did feel sorry for them, can you imagine having to grocery shop in this manner!

I tried to do as much walking as possible, sometimes hubby was getting worried, especially if we had banks to climb.  Nearly all the ports are at the bottom of towns not many led straight to flat long walks.  We even had a look around some shops and I bought a beautiful wrap for over my bikini's which I only got to wear one day.

I have asked my doc to write to Hull to see about the ADAMS trial so fingers crossed my meso is suitable and that the trial works, but maybe once again I can put any treatment back again.  I also have to start thinking about my talk for the conference.

Hearing so much bad news about my fellow warriors once again brings it home how unfair this journey with mesothelioma is.  Just when we think we are ahead and safe scan's come back with a totally different story.  I worry about how hubby is going to cope when I go.  I was back at work today to hear that my friend and colleague lost her sister last week to her fight with cancer.  It is so sad because 9 years ago she lost her brother to meso and now her sister to a brain tumour, I cried with her and it brought home again the pain that death brings.  Who will be there to hold hubby through those moments of pain, these are the thoughts I can not get out of my head.

Why do we have to suffer at the end too, watching someone you love struggling to breathe is terrible and heartbreaking.  I hope when my time comes that I have the strength to take a little extra morphine while he is out of the house and he comes home to find me gone.  Far to early to be thinking thoughts like this but I am sure we all have them.

On that note I should end this posting, I have decided my grey matter is getting muddled more and more each day.

To everyone on treatments I am willing it to work for you all.

Quick post

The cruise has been an eye opener for me into how hubby really feels, he has hidden away his own feelings wanting each day to be the same as the last so when I finally lose this battle for life he will have deprived himself of memories.

This posting will be short due to the terrible connections we have on board ship!

I have always said it is hard and being the sufferer we stay strong for our partners, they too are trying to stay strong for us but we should discuss this not both ignore the pains that hurt.

The heat has been wonderful but the meso is growing, I can feel the changes with each day that passes, my big fear is the chemo and how my poor stomach will deal with being turned into mush again, I have enough acid in there already, probably could dissolve a body if they drained me and used it!

The ship has landed at Italy, after over 7 days of red hot weather we have hit thunder and lightening, we have one full day tomorrow and it's over.  I wouldn't say the cruise has been restful, the total opposite, but I have enjoyed it.  Typical though, where we are today is beautiful and flat, the first place we could have walked for miles, but weather will not allow!

To everyone facing news, scans and treatment I wish you all well.  Special thoughts to Helen and Lou.

Blue Sky - Feeling High

After a week of work and okay a day off because I didn't feel that great the sun came up today.  We walked the dogs over the fields and felt the sun on our faces.  We decided to sit admist the cut grass and let the dogs have a rump. 


I want your arm

Lexi had her ears washed at the vets and the bad news is here lining is thickening, heard that before but usually in the chest!

I managed to be talked into facebook and find that I am spending my mornings and evenings reading the groups input and learning quite a lot.  It is sad but good to read others have pain.  I no longer feel alone, I know that sounds strange but everyone from I knew previously with meso only one or two have twinges not full on unbearable pain.  Joining fb has shown me something else, there are an awful lot of people out there with this damn cancer and succumbed to it with remission ranging from a few months to many years. 

 

It seems the States have much more on offer than we do, why can't we get more options or again hear more about what does work.  I was thinking about Steve (Doing something Positive) who had velcade.  The chemo worked for him, although the trial is pretty much abandoned why can't that chemo, which has proved it works, not be given to us who Alimta doesn't work on.  Surely, when something on trial works for maybe only one or two that could be the drug that works for the 10 or 12 Alimta doesn't. 

 

The Scan is booked for September 18th.  Although I feel things are moving in my heart I hope the scan shows nothing and maybe the new pains and discomfort are caused by something other.  After all our bodies can still suffer from other things apart from mesothelioma.

 

On a good note a friend of mine, who isn't on the internet or fb, is doing really well.  Her recovery from surgery is coming along nicely and 9 weeks down the line I think she is walking some 3 to 4 miles a day.  That is amazing.

 

For those of you who don't wish to hear my dulcet tones, I have been asked to do the talk on behalf of the patient at Carers day in October.  So if you need a ciggy break choose my slot to have one.

 

On such a high note, due to the sunshine, I hope this wonderful sun keeps us all lifted for another week.