Day four - Sete, France

One good thing about holidays is the sun.  If I was at home I would be feeling the same but looking out at a grey sky.  At least here the sun is shining.

My stomach has grown again, not so much round the abdomen but more round the chest area, I look ready to give birth.  It is also quite heavy, my back is aching carrying the additional weight.  We have had our morning walk along the canal that lies just inside the town of Sete, it's always good to make the effort and wander down the streets.  We watched as a motor home pulled into a very tight space, it's front wheels were close to the edge of the canal.  Just as he finished parking a large bus tried to get through, we have visions of the motor home going plunk into the water below, hats off to the bus driver who just managed to squeeze through.

Last night we had dinner, one drink in the sky bar then came to bed, it was only 9 but hubby was tired to.  I try my hardest to stay up for him, after all it's his holiday too.  To be honest if I could just stay in the sun till 5.30 then pick up a decent movie I wouldn't bother going for dinner.  But the whole idea of the cruise is relax then dress up in your finery for dinner.

I have contacted my wonderful Gp again, he has said I can lift the water tablets again, so hopefully my water may stop and start leaving me.  My Gp has been the only support I have truly had from the NHS,   Considering I was Admitted twice to Darlington in July nothing has come back for any further appointments.  Flying can cause the heart to work too hard hence creating fluid in the lungs but this doesn't explain the large influx of fluid to my stomach.  I fear I may need to go straight from the plane to A&E on our return.  Unless I hear from the private specialist, but he was on vacation when we left home.  I believe he gets back after us too.

I have to admit I prefer the small Seabourn ships to the larger ones.  Yes they have more space per person and more amenities but are harder to befriend others or even remember the names of the staff. Sad that Seabourn are selling them.  I guess though it won't affect me because I don't think I'll be around to worry.

I wish we had this delightful weather at home, I was musing over the fact that I need sun and remembered my mother told me that for the first 3 months of my life she left me in my pram under a pear tree in the garden.  She often said I never made a murmur I just loved being out in the sun.

I should close here, lunch will be closed if I don't get a move on.

Day Two San Remo - Day Three Marseille

As we left the Captains table from dinner I looked down - my stomach had blown up while we had been eating, not a lot but certainly different.  Last cruise this dress fitted my bodice perfectly, this one it was dropping off me, but the waist was getting tighter.  We came back to the room with thoughts of getting changed then taking in the show but you never go back out do you.

I awoke in pain, heavy to breathe and discomfort in ribs.  I felt awful too, I didn't know whether I wanted to be up or lying Down.  More than anything I was worried, my ribs were sore and I could tell fluid was built up behind them as well as on top.

Hubby made me go and rest some more as I really wasn't good, so an hour later I got up again, the pain from breathing wasn't as bad this time but the reality of how big I had become sank in.  No longer is there a small bump in my lower abdomen it is evening out up to my chest.  I know my vanity at first was kicking in, always having a reasons ably flat tummy, but this now affects my health.  My breathing will become hard during the night with all the additional weight.  My ribs are painful and angry, the only good thing, the bile has stayed away.  I also had a few (a lot) of tears, fearing I am truly on my last legs.

I text my GP and told him I was bloated and my ribs spongy, I have asked to see if he can arrange a drainage for when I get back as by then I fear My skin will be at splitting point.

We didn't get off the boat as I just didn't have the energy early enough, I regret this as the place looked beautiful and somewhere to remember.  Instead it took me till noon to get myself together, we missed breakfast so had a little sandwich from the cafe before going for a late lunch.

I was strung out most of yesterday but by evening I felt a lot better, this morning as Day Three of the cruise starts my stomach has bloated further, my left side is agony but for the rib pain I can at least take morphine.

Hubby will say 'Are hols really worth it' and I will say Yes.  I am no good first thing at home these days so once I've got that out of the way I am alright.  He has promised me this won't be our last holiday and I'll still be here next year.

The ship is a lot bigger than those we have been on before, I'm not sure whether that is good or bad.  There isn't the same closeness, more space and eating places but harder to get in to conversation with others.  Although we have ran in to the same couple twice and gate crashed their dinner table in deck last night.  In fact we had a late night, not coming home till 11 pm.

As we prepare for the day ahead I will try my hardest to put the fears of meso behind me, I have to hope that some one in the Uk will treat me.  I only need some thing to stop this fluid, which I am sure is due to my left side irritating the stomach.  I am also going to promise myself that if I get remission again I am going to hold on to it and stop worrying about the future, I need to enjoy the now.

As we start the day in glorious sun shine I hope that you have all sunny skies or had them.  In an hour we will be walking along the front and hopefully forget I am ill.

9 yrs later - Still fighting On

The 26th August is a date of great importance.  Firstly, it was my mothers birthday and now it's the Anniversary of the day I was told I had Mesothelioma.  I guess my surgery day is the day I should use but what does 21 days difference mean, because in reality if they had done something earlier I could have been diagnosed in 2001 instead of 2004.

To be honest, looking back, those first few years were easier, ok I had chemo regimes to contend with but I was happier and much fitter than I am today.

I am pleased to still be here and breathe the air, see the sun rise and fall, hold my husband and know he loves me and most days have a reasonable quality of life, sometimes reasonable is great and I then feel guilty for moaning that my pains get me down.

As I sit here on deck aboard Seabourn's Quest I have watched old couples pass me by, they seem spritely and fit, young people with fit bodies tanning themselves and of course a couple of crocks like myself.  I often wonder how others cope when their physical health is wavering and causing discomfort.

The flight over was fast but I did feel a little tightening in my left arm, like the BP cuff hasn't turned off but it came and went.  During the night I woke to my chest feeling heavy, instinctively my hands ran over the bump I still have in front of my stomach.  The top seems a little puffier, the skin above my ribs a little spongy.  I have taken a stronger dose of water tablet, as recommended by my gp, just in case.  I remember my stomach on the last cruise got bigger and bigger on a daily basis.

I caught a side way glance of me in the mirror and boy do I look odd, I am trying not to worry as others are in a worse predicament than I.  I also think vanity is now creeping in.  I've always had a flat abdomen so to have quite a tummy is odd.

After a late breakfast this morning we got off the boat and walked along the front of Le Lavandou, France.  We did enjoy the walk then back to the boat for lunch.  We have sunbathed on our deck, I didn't want to show my belly to the world.  Hubby keeps telling me other ladies have worse but men  don't understand it isn't what some one else looks like, it's what we look and feel like.

Tonight is the gala dinner, we are sitting at the Captains table, I do hope we are sat with some chatty people.  I will also walk in holding something over my tummy!  I wish they had done my draining right the first time then maybe my whole tummy would be back to normal, or I could then have gone back and had the rest drained with time to recover.

Tomorrow another port and another sunny day, at least I hope so.  When we came into land yesterday we came through quite a big storm but it blew over in an hour, the sky was blue and temperature hot.

Guess that's my update for today, please put a pray in for me that my fluid stays under control.  On a good note my dreaded bile seems to have calmed down - at least that's one good thing going for me right now.

To everyone with mesothelioma I hope you have had a good day.

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.

 

Quality of Life

A lot happens to us as we travel through this journey.  In my case I have had more pains and related problems, ie this stomach problem of bile together with the new ascities that came at me from a blind corner.

 

They tell us that they will do everything to ensure we have a decent quality of life.  Is that just to handle the mesothelioma or everything else?  Because please this bile problem has been bugging me for years!  It was part of the reason I don't particularly fancy chemo again because I know it will make the situation totally unbearable.  I think my Australian fighter and friend, Lou, is having the same kind of trouble.

 

I know you are sick of hearing me wittering about it, but I can't help it.  I have seen three GI guys, the last actually telling me what the problem is, but no one will fix it.  If the guy back in, I think 2010 had done something, when my meso was under control, instead of saying it was either a ulcer or cancer, I would be in a better place right now.  The noxious stuff burns other organs in time, my poor insides have had enough from the meso without this, and boy has it come back with a passion.

 

It also brings me to another point.  No one but the sufferer or the carer actually does see what is going on inside a home.  We, as sufferers, try to put the good olde brave face on when company arrives.  Seriously who wants to come and visit someone who is moaning about pain etc.  I am always saying to my friends Yes I will get out and do this and do that, I know that on most things it can't happen.  I can't plan whether a week next Thursday I would feel up to a shopping trip, but I say it anyway to be normal.  The carer on the other hand, hubby in my case, is quietly telling them not to make arrangements because no doubt I will fall short and let them down.  My friends probably think it is him being over protective, but it isn't.  He sees far more than anyone else, he understands that I want to be normal and do these things but he also knows that I know I can't.

 

I had a sad phone conversation with a friend who has mesothelioma.  She is in her early seventies, a fit lady as well, who was considering surgery to remove the meso from her left lung.  Unfortunately, now she has made her mind up to go through with it, the meso has surfaced in her right lung.  Surgery has been withdrawn from the options she had.  Alimta didn't work and I believe she is trying a different treatment.  I hope all goes well, she was very bright in her outlook considering the blow she had just received.

 

Another friend who has had surgery is struggling in two different ways.  One, breathlessness, her breathing is getting shallower each time I talk with her.  I have asked her several times what her specialist says and she tells me he says all is well.  I don't believe it, also she has lost a lot of weight, in fact she would be classed as starved from her body weight.  I do worry about her but I can't tell her what to do.

 

Tomorrow is my late Mam's birthday and also the anniversary of the day I was told I had terminal cancer.  Maybe some reflection there then in the morning.

 

The weather seems slightly warmer outside today, Bear has managed to get wet eczema on the back of his head, we have had to cut a whole circle out, he actually looks like a monk!  Typical though, as we will be away soon.  On top of that it seems Lexi may be coming into season.  Boy is our Lauri going to have fun dog sitting this time round.

 

To those on the outside who aren't carer's for sufferers, but friends of either party, take a few moments to wonder how you would cope if it was your loved one in this situation.  Once over I would have thought going out everywhere and doing everything I ever wanted would be the way to go, but meso isn't like a normal cancer.  It has so many restrictions going on inside, and on the outside, well we just look so healthy.

 

To the meso community, happy Bank Holiday Sunday, I hope those in pain are finding relief somehow, those on treatment are coping with the rotten side effects and those in remission, well enjoy it to the full. 

 

Me, well I'm off to pack, I fear this may be my last holiday and that frightens me, its a long time to next April when the weather would make the med a place to visit again.   

For one good day several bad!

Yesterday, although my back was killing from being manipulated on Tuesday, was a good day.  I woke up reasonably fresh and happy.  I would have been at work early but for a phone call but we are here to help and what if I got in work late, I don't run to a clocking in and off system anymore.

 

My niece came over as her car needed to go back to the garage we bought it from, a rattle in the engine was of concern.  Hubby had her the morning while I went to work and then I arranged for us both to go to the hairdressers and have a little girly pampering.  Although I needed the hair cut for holidays.  I can know see again through my fringe, which helps of course.

 

We had a big dinner, braising steak with lots of thick rich gravy, dumplings, potatoes and veg, whether the fat of the 2 dumplings I ate has caused this morning's burning chest and bile problem I don't know.  Maybe I should start monitoring my food, but as I don't eat a mass amount it does seem stupid.

 

Hubby, as you know, has been doing the Insanity workout, or was.  He pulled his calf muscle the other day and has had a few days off.  The muscle was just getting better when he ran down from the garden to answer the phone and he felt it go.  Oh No!  Have managed to get him in with the physio on Saturday morning.  At least he can still walk, sorry limp!

 

The sky outside is grey and that's exactly how my insides feel.  I was thinking of my meso warriors going through chemo and that thought nearly made the bile come higher.  You see if I do get the option, a great IF, in the future, the bile and chemo don't mix well either.  The chemical will work itself back down to my liver and kidneys to be washed out but the bile will then back fire and come back into my stomach.  This is what I think happens anyway, I can't put my hand on my heart and say its true.

 

What was worse, the big belly or this bile?  How after all these months did it manage to come back just before my stomach was reduced and has stayed.  Granted, it isn't as bad as last Sunday but it isn't pleasant either.

 

My meso can be felt too, my right back is uncomfortable leading me to believe that fluid still isn't moving from the pleura.  I will be on edge now until after I fly on Tuesday morning.

 

Time to shower and hopefully see if I can feel better.  I am clammy and sweaty again, which I hate nearly as much as the bile.

 

I should have been attending the funeral of my Meso Friend, Christine Shippen, I am now pleased I emailed her son last night and said I might not make it.  I know now I would never have managed to drive up to Cramlington feeling like this.  Although my thoughts will be with them at 10.00 am.

 

To everyone else, Bank Holiday Weekend is upon us, I hope the weather isn't as grey and wet where you are and that all plans for the weekend go ahead under sunshine.

 

Am frightened but aren't we all?

The week has had been ill, pensive and normal.  The bile has been the worst of the problems that I have gone through, the heavy burning in my chest and the throwing up of same.  I went into the office on Monday to turn around and come straight home.  I text my GP who kindly rang me back and said he would call in.

 

I felt somewhat guilty when he called as I was feeling a lot better and felt like a fraud, other people are out there needing him more than I was.  He listened but didn't say much about the events that had brought me through the weekend, although he did listen to my chest and said I could fly.  Relief over Gary's face as he thinks this holiday will do us both good.

 

Each morning and night I look at my stomach.  I am so frightened that the fluid is going to return, although it took a few months to get to the level of where it was (9 months +) it had been building from at least April this year.  Of course I am going to be paranoid of it's return, I had never heard of this happening before and now having gone through it, I am scared it comes back.  I am taking the water tablets but to be honest I don't think they will do much good, after all they are designed for when the heart's right ventricle doesn't work properly. 

 

Needless to say I haven't got a nice flat stomach, one that I had last year any way, but it is still a funny shape.  Whether I sit and sunbathe this holiday I'm not sure, probably should keep the middle bit covered!

 

I read somewhere that Ascities is usually a sign that we are on our last legs, I don't feel that, my meso certainly hasn't overtaken my body and I wonder if that is why my oncologist said palliative care only.  Even so, if that is what he is offering, I haven't heard anything from anyone regarding looking after me!  No, I still haven't heard from Darlington regarding an outpatients appointment or whether the fluid withdrawn from my stomach had cancer cells in it.  What is wrong with the NHS and continued care?  Is it just us with Mesothelioma that are thrown on the scrap heap and left to fend for themselves?

 

I have gained 2lb already, but this could be down to the fact that I have managed to eat more over the last few days than I have over the last month.  The other down side to my belly going is my back is hurting again.  My back man, bless, said because the weight from the front has gone its putting pressure back on the disc, see I can't win!

 

At least I can get back into clothes but I am still taking a few of my friends things away on holiday, just in case! 

 

 

As I do every night I groom Bear, he doesn't like a fuss or to be cuddled and hugged but grooming is a big bonding thing between us.  Last night he put his head on my lap and hubby couldn't resist taking a snap, although Bear moves if we get the camera out these days.  I can spend anything up to 2 hours a night, especially after he has been running through the under growth over the fields.

 

So today I am clammy and sweaty, I will go in to the office for a couple of hours but it's Wednesday and healing service is at 2.00.  I certainly think I could do with absorbing quite a lot as well as ask for it to help everyone else.

 

The service for Chris Shippen is now 10.00 am on Friday morning, its at least an hour's drive with no work traffic.  I have a feeling that I won't make it on Friday as my mornings at the moment are slower than normal.  I feel terrible as I was planning on going but when I did route master last night I realised it was a little out of reach at the moment. 

Not a good day

You know I am going to tell it as it is, I don't hold back on how I feel or what I am going through with mesothelioma.

 

Thankfully I rested yesterday, I was tired but I still couldn't eat much.  Strange as on Friday at hospital I ate a tuna sandwich and had some scampi.  Saturday I managed a little porridge, a couple of prawns and some steak and broccoli for dinner.  Not enough for a person who needs to maintain weight but I just didn't fancy anything nor did I enjoy eating it.

 

I had another terrible night, every time I work up I was dripping with sweat and very clammy.  I decided it was hot because Bear was also panting and scratching at carpets and wood floors.

 

At 7.30 this morning I had this terrible burning pain just inside my chest, a weight to the left of my heart that was nearly as bad as the weight I felt from the fluid.  I took a Rennie and tried to half sit up in bed.  The pain just got worse.  I wish I could make myself sick but that is something I have never tried nor ever want to, but the burning was agony.  On top of that I felt I had a large elastic band around my rib cage that was too tight.

 

I stood up hoping the bile would move and boy did it, I rushed to the toilet and threw up thick yellow\brown stuff, it was that heavy it sank to the bottom of the bowl.  Still the burning continued, I was sick again but the pain of being sick and retching made my ribs hurt.  Hubby took my temperature, I was at 35.2, not a good sign for me.  I wanted to go back to bed but the pain was unbearable so I came down stairs, no sooner had I reached the bottom step I had to run to vomit once again.  A lot more came up, bringing more pain to my chest but the burning was easing by the time I was through.  I was very clammy and tears filled my eyes.

 

I don't want to be like this, each morning lately the pain of waking has been terrible because of the weight on top, now it seems the bile has found a route back and one problem has just been replaced by another.

 

I hate this cancer, I hate that over the last few years I haven't done the things I keep saying I am going to.  I guess yesterday brought it home.  This whole summer - July todate, I have been ill.  We haven't been out anywhere - why because of me.  What memories will hubby have of our last few years of marriage.  I had surgery to ensure I would still be here and we would be enjoying our life together, it seems this last year has been full of health problems, in fact since January 09 I am even questioning what have we done?

 

I have grown weak from fighting, I can't go through another morning like this.  Why is it happening now?  Friday morning I threw up but before that, the last time I had bile like this was when I was on chemo.

 

Maybe the fluid has made the hernia worse, maybe I am just destined to be forever in pain.  It has taken till 4pm for me to feel remotely human today, even now I have a pain that is restrictive around my ribs.  I am conscience of us going on holiday in a weeks time, what if I am still like this?

 

We ask how does Mesothelioma kill us, I guess the answer is it destroys our organs, fills us with toxins, robs our body of oxygen and wipes out our immune system.  One thing for sure I don't think my death will be peaceful unless I am drugged up to the eyeballs and have no idea of who or what I am.

 

To make matters feel even worse I heard back from my old oncologist (2007-2009), he would not think chemo is available as giving it 4th line is evidence free.  Please how can it ever be recorded if no one is allowed it 4th line, but we know patients have had it 4th line.  They can't tell me they will do a trial for 4th line only chemo on Mesothelioma patients, it just wouldn't happen.

 

I don't know if any other meso sufferer has gone through as many nightmare's as I have, I pray they haven't.  I seem to be the only person that complains of this happening or that, surely I am not a minority out there and others have had similar situations.

 

I need answers of how other people have managed this or that.  I take tablets for my stomach, I curse the day I had my gallbladder removed.  If the oncologist had known better the pain would have been proved to be caused by cancer on the pericardium, but no they said that couldn't happen.  Yes I am still angry about that.  Bile would then be controlled by that missing organ.  The false diaphragm doesn't help but then it may not have been a problem if the Gallbladder was still in place!

 

If this is my future, then I am truly doomed.  I don't think I can face every morning like this - as much as I love life this is not quality.  I don't like being negative as I love being with hubby and the dogs, I like what I do but I don't like how I feel. 

 

 

 

 

Acsities Drained

Friday Morning was not good, I woke up with that burning in my solar plexus and knew I didn't feel well.  I came down and had a few mouthfuls of coffee before going back up to shower.  As I cleaned my teeth I felt the bile rise, I had no choice but to be sick, thankfully the toilet lid was already up.  The little coffee I had drunk came up with some thick gunk.  I took another Rennie and had a shower.

 

I had, for the first time in months, a massage on my legs on Thursday, I also had a small massage over my stomach to show me how to move fluid.  Whether this allowed the bile an escape route back up to my throat I don't know.  Since having a fat stomach the bile hasn't been a problem.

 

On the way to Woodlands my bile was uncomfortable but stayed where it was, a glass of water while waiting seemed to move it down a touch further.  I wished hubby had taken the phone in with us as he could have photographed the stages of my extended stomach shrinking.  It was amazing. 

 

The first needle did hurt, I can't lie, in fact the 3rd one did too!  But this time the needle didn't go 8 inches into me just  2 inches, a lot closer to my side and not too far into my abdomen.  It was done under scan, which ensured nothing was damaged either.  Makes me worry about what damage they did on the last attempt at Darlington.

 

To my surprise Dr D actually syringed fluid out, when I was first laid down on my back I couldn't see my feet, as he kept drawing fluid suddenly my toes appeared, then the top of my feet.  I was shocked I had been so extended.  He didn't have any trouble in draining syringe after syringe out.  He stopped when I said I could now feel him drawing the fluid.  That was when he put a bag on and let the drain do a slow job in letting the rest come out.  At first I stayed pretty flat but realised the drain was probably letting the fluid back in so I sat up. 

I sent hubby home to be with the dogs, there was nothing to do, plus the hospital room was so hot, he was starting to pass out.  I was kept company by Lou who was messaging me for most of the morning.  My blood pressure was up and did  a yo-yo, dropping to 70, rising to 87 back to high 70's then 90's.  I was tired but the morning flew.  I expected to be out by noon, but that came and went.  Hubby came back and again I sent him home, the fluid was still coming and I was happy (is this really me - happy to stay where I was!) to stay and get it all out.

 

No one again has said what is happening.  If the fluid returns I have no idea what I will do as yet, the consultant I saw who organised Mr D is on holiday for 3 weeks, I have my fingers crossed that the fluid will not return to my stomach.  I am concerned about the flight, but if there is little fluid in there surely the flight can't exasperate it, can it?

 

I weight 9.02 this morning, I have lost 8 lbs overnight, not that I recommend this type of weight loss.  Hopefully my insides will drop back into place shortly and I won't look the odd shape that I am at the moment.  Lisa told me I will be like after having a baby, the body will drop back into place.  Never being pregnant passed 12 weeks I now have an understanding of what it must be like. 

 

I did have the sweats quite bad during the night but this morning I didn't wake up feeling like a ton weight was resting on my chest.  My ribs feel normal instead of that feeling that something is behind them forcing them outwards. 

 

Today I am going to rest, looking outside I am disappointed, the weather is dull, windy and looks like rain.  Typical!  I can work on editing book 2 if I can keep my eyes open.  My BP was still low when I left hospital but am sure today on the sofa will put me back on top.

 

Happy days ahead, our holiday isn't that far away now, my stomach hopefully will go back to normal, ok I may have a little unfit roll but at 53 I'm allowed.  Just need to start eating again so that my arms don't look like sticks.

 

On a wonderful note, I reached our 17th Wedding Anniversary.  On our 8th I never thought I would reach this far so I am thrilled that I am still here and of course our marriage is still rock solid and we are still in love with each other. 

 

A lot of good news in the community too, many people have had clear scans, some are now 6 years clear of meso, that in itself is something to celebrate.  Wish I had been as lucky but then I am still here and many have not been able to share wedding anniversaries this year or birthdays.  This still hurts me, we have been robbed of a life due to the greed of man.  Man is the root of most evil in the world, either to make a quick buck or to kill for sport.  I won't go there today, its a good day.

 

Please spare a healing thought for me and everyone who is undergoing treatment, it doesn't cost anything to say please send healing to everyone with mesothelioma. ... Thanks.

Chris HasTaken Her Wings

It is with great sadness that I write to inform you that one of our mesothelioma friends, Christine Shippen, took her wings at 2.00am this morning.

 

Chris and I have emailed for a long time, nearly as long as she was diagnosed in October 07, again it took over a year for them to find out she had Mesothelioma, taking ill in 2006.

 

The news that she was taken ill so fast shocked me a couple of weeks ago, she died at home with her family.

She was so excited when her first grandchild was born to her Son, and so looking forward to the birth of her daughter's baby last week. 

 

Chris wasn't a member of face book but gave her story to many of the websites we all read, including  my website. 

 

She already has a Snowdrop fund set up with Mick Knighton Mesothelioma Research Fund and I believe her request was donations to this instead of flowers at her funeral.

 

My thoughts are with her husband and children.

Weight and Eating

Not long until my lump is drained and maybe I can start living normally.  I have managed work 3 days now, only 3 hours, but by the time I have pulled files out from one shelf or out of my desk drawers, entered info on the computer, turned this way and that for the printer then to file what I've done etc my stomach feels like, well Hell.  I have worn some hipster jeans but after a while even they hurt, they sit just under the lump but now are forced down ward.  Those men you see with big bellies and their jeans hanging six inches lower than their backside, well that's now me, and I hate it!

 

I have written a few articles on and off for various websites over the years, always to promote what Mesothelioma is like.  Lately, I have had the privilege of being asked to write a few for MesotheliomaHelp which you can read by clicking here, they are similar to what I write on my own blog but not everyone with meso would ever find my blog let alone read it.  But the site also has different people writing on certain subjects and sometimes a different view point can make all the difference to what you think to what you know.  Why mention this, you are asking?  Well having this fluid in my stomach has made me feel ill some days and ok others.  I have gone on to lots of sites that detail ascities but not one says 'you may feel like' or 'if you feel like do this'.  Mavis, the Google Queen in our group found me a discussion group, one that was for ovarian cancer, the thread was now closed, but what disappointed me was that Macmillan information or Cancer UK don't say the how you will feel in much detail.  Yes they detail symptoms, but the symptoms are how to diagnose the disease not how to deal with it in a personal way.

 

Hubby has started the intense workout video's Insanity.  These are all cardio vascular exercises to rid him of his over large stomach.  He doesn't eat junk food but can devour a large packet of crisps in 5 minutes.  He had food poisoning, am sure I mentioned this before, and then lost weight before gaining lots and blew up to nearly 15\16 stone.  He lost a lot of that but his stomach has never gone and he blamed the poisoning for doing something to him.  His tops are stretched to the maximum!

 

 

 

I have never nagged my hubby but on the last holiday I saw what hubby will morph into in another few years if he kept his crisps and over eating up.  Finally he agreed to do something about it.  I once told him that if he suddenly went on a diet and lost all his weight and toned up after I died I would come and haunt him.  If he could do it to find a new wife he could damn well do it for his current one.  I think I got through to him.  So the menu plans have come out and even more healthy eating is currently taking place in our house hold.  Problem for me is that I am still not eating enough.  His stomach needs to shrink so instead of eating till he is full and bursting he is learning to eat until he is nearly full.  Me I have a little food and feel stuffed, example tonight one piece of broccoli, 2 oz filled steak and 2 new small potatoes, a few thin slices of mushrooms.  The dogs got a potato between them.  I have also consumed today 2 thin wafers and half a pork roll, yes the dogs got the other half.

 

I don't want that fight I had in 2011 where I had to gain weight because I had dropped so much.  It isn't easy for me to eat a lot, that's why I didn't think I had middle age spread.  I knew I was eating a lot of liquorice and thought that was what caused my small bump at the front, now I know it was fluid slowly building up.   

 

On chemotherapy you don't really want to eat, either due to nausea, sore mouth, sore oesophagus or loss of appetite.  Your stomach shrinks and although it is something that can grow and stretch, hence we get fat because we overstretch it by overeating, it is hard when it has become use to eating very little.  Not eating enough makes us lethargic and down, but it also does other damage, our organs aren't receiving the nutrients they need to fight off illness or keep our organs healthy.

 

Taking the water tablets as well I have also noticed how thin the rest of my body is going, like your insides are being sucked dry.  My skin isn't as radiant, ok I know I am old but my skin has always been soft, now it feels hard and dry.  It seems they are draining me of fluid but not from the right spot!  Which brings me to any other worry, once the lump goes (maybe I should give it a name?) and I am to stay on the tablets will my insides keep getting sucked dry?

 

Wow I've written an essay not a blog.  So where do I end this blog, if you aren't eating enough ensure you take vitamins (something I mean to do everyday but forget!), eat small and often (not always easy to do) but these are essential to us.  Instead of fighting this battle of food alone try and get the family involved too.  Work on menu's that if you don't eat a lot you are getting some of the 5 inside of you.  Veg and fruit are a must, carbs and protein are important.  500 Calories can be made up of healthy and filling food without the plate looking overloaded but a good meal to feed each part of your body.

 

There are many people currently fighting this cancer, the treatments are giving them so many problems but they are battling on.  At healing today I asked for a rainbow of healing to fill each and every one of us, whether you believe or not there is no harm in asking for healing in your mind... you never know a couple of those pains might just disappear.

 

On that note I bid you all good night. 

 

 

 

 

 

 

Sunday Sunny Sunday

I dreaded going to bed last night so sure I would have the same bad night I had before.  I said to hubby if you wake up during the night and I am lying on my back please roll me over.  Bless, he did once during the night.

 

Bear came up at 5 wanting to go out but I vaguely heard the order Lie Down so I just drifted back to sleep.  He came back up at 7 and out of bed hubby got and stayed up.  I came down at 9, I needed the additional sleep but any longer and my body would not benefit from it.  I felt so much better, I had somehow stayed mainly on my left side.

 

The sky up here was grey mixed with blue so I made my mind up I was going with the dogs, after a little messaging on face book I showered and actually managed to get a pair of hipster jeans on.  Tight where the button fastened, but on.  The fields were really windy, Oops and I didn't take anything to cover my mouth.  I managed, both Lexi and Bear loved the fact I was with them and stayed close by me the entire walk.  It was wonderful to feel the fresh clean air on my face.  Once down the first field the wind wasn't as harsh and I enjoyed watching Bear go and sniff here and there.  So many butterflies this year and so many different coloured ones.  Also a beautiful blue dragonfly stayed close by the pond.  They are so beautiful to watch as they dart here and there.

 

As hubby has started Insanity, I sent him for some decent trainers yesterday.  Mine are looking rather shabby so he said we would go and get me a new pair as this shop in Bishop had such a large range.  He also needed some shorts to work out it, accidents could happen in his loose fitting ones!

 

I tried on a couple of pairs but my feet weren't comfortable, I didn't think at first and bending over pulling off and putting on shoes my stomach was starting to hurt.  The trousers were obviously pushing in and forcing some of the fluid back.  When I finally choose a pair and was waiting for hubby to pick out some shorts I had terrible stomach ache.  I thought I was going to collapse with it.  The pain was similar to when you know you have to go to the toilet, but I didn't want to go.  I left him in the shop and made my way outside, holding my unborn stomach.

 

He drove home like a bat out of hell, I had to tell him to slow down as I felt my insides were sloshing from one side to the other.  Hot water bottle and stripped off jeans the pains started to recede.  So it was an hour on the sofa.

 

I watched and counted as he worked out and put some roast potatoes in, not that I was hungry but it is Sunday.  I have managed to eat some veg, a slice of beef and two small roast potatoes, not a lot really, but at least it has gone down.  The dogs were pleased as they got quite a lot of dinner.  By the time my stomach is drained I think I will look like a skeleton!

 

My head is still all over the place, one minute I have no thoughts of what could happen or what is happening, the next I am worrying and on the computer reading articles.  Mavis has been a great help and found a site where a discussion was on about ascities.  If anyone else would like to read it:

 http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.inspire.com%2Fgroups%2Fovarian-cancer-national-alliance%2Fdiscussion%2Fcoping-with-ascites%2F&h=LAQGFnbIC

So its work again tomorrow, I have no idea what I am going to wear either.  I know my friends brought some of their wardrobes over but the dresses are more for the cruise than work.  Even if I wear leggings I haven't got anything to go on top!  I never thought a woman in her 50's would turn up to work with leggings and a long top on.  When I think back to the ladies I used to work for when I was in my late teens, you called them Mrs and they always wore suits.  I can't remember the last time I wore a suit for work, probably just before I was cut open in 2004.

 

 

There has been a lot of writing about the new trial to take place in Australia, Amanda has wrote about it on her blog and Nancy (Guest writer on here) has done a cover too. 

 

http://www.mesotheliomahelp.net/blog/2013/08/australian-mesothelioma-clinical-trial-brings-a-cure-one-step-closer-to-reality

 

There are quite a good few articles on this site, but I do like the way they break information down.  I don't know what it is anymore, probably my chemo brain, but following medical information seems to be hard work for me these days.

 

Well I am off to sit on the sofa and catch up with a few TV programs, I can't wait to see what is going to happen in The White Queen.  Boy how devious people were in those days, although I wonder what's changed.

 

Good luck to those having treatment this week, I just wish chemotherapy didn't have to be as harsh on us as it is.  One day someone will invent a tablet we take, like a blood pressure type, and mesothelioma will become a chronic rather than terminal disease.

 

 

 

Postponed - So Annoyed - Ascities getting worse.

I woke up Friday morning feeling crap.  My overloaded, heavy stomach, and chest breaking ribs were painful.  I had had sweats too.  I pulled myself round and off we set for Darlington and the Woodlands private hospital.

 

I was nervous, to say the least.  I was taken into the Ultra Sound room and put a gown on, I asked if hubby could come, she said no, not at the moment.  I told her I would need him to hold his hand.  She actually seemed a little unfriendly at first, so I went and got changed.

 

The ultra sound started once Dr Dean came in, he remembered doing my stomach test and asked how I was doing.  I told him about the ascites.  He told me he hadn't been told he was supposed to be removing any fluid and wasn't organised to do it.  I was gutted, although I felt terrible I knew it was the fluid that is making me feel this way.

 

He showed me a picture of the fluid, my liver has moved away from where it should be and a large black pool stood out, all fluid.  He said I didn't have any pockets and withdrawing it wouldn't be difficult.  Which brought questions about what had happened on the ward when they withdrew the stuff.

 

I am so upset that it didn't happen, apart from anything else it will only leave me 10 days to try and get my stomach a little toned up after being stretched for so long!  You may feel that is a bit of vanity there, which it is, but we are due to go back on holiday and having six inches of skin hanging over your trousers isn't pleasant.

 

So next week they try again although I will be admitted.  At first he said he would put the drain in then not come back till 6pm and remove it.  I said no way, the minute that drain stops working it comes out, I wasn't going through the pain I did the other week.  Strange when the fluid stops the drain hurts, I think it's something to do with suction, no fluid it starts pushing against any organ or tissue inside.  We agreed that if it stops it could be removed by the MO on duty.

 

On a different note he told me the name of another oncologist.  I told him I didn't want to upset my current one but he didn't want to give me any more chemo and that was my only hope.  Also it is better to be treated locally and, if say, one of the specialists down south was willing to let someone else administer it surely its better to be done here.  He told me it wasn't my responsibility whether the oncologist was upset or not, it was my life and I had to do everything in my power to preserve it.  No other persons feelings should come into it only my own.

 

I'm not totally sure whether the fluid is making me feel ill, but then during last night I had a terrible time.  I took both water tablets yesterday, watching TV between 8 and 10.30 I visited the toilet every 30 minutes, mind I did have 2 Bacardi and cokes.  Then we went to bed, every hour I was up, and passing quite a lot of water.  At 3.45 I started to sweat badly, my stomach felt extremely heavy.  I didn't get back to sleep properly because I couldn't get comfortable.  At 5.40 I was starting to panic, the pain in my ribs felt like they were being forced out ward, the ones just under your heart. The skin over my lump felt like it was wanting to split apart, the tightness was terrible.  I wondered whether I was dehydrated but I was also clammy.  I woke hubby up, should I call an ambulance, I couldn't cope another week with this growing inside.  I wasn't sure whether to get up and walk around, maybe the fluid would move around and not make my body feel like it was exploding.  He was tired and half awake, so trying to talk me down was quite hard work for him.  I think I had slept on my back quite a lot which had made the fluid more heavy on the internal organs. 

 

He talked me into taking a diazepam to help me calm down and maybe get me back to sleep.  He was frightened in case I started having a full on adrenalin rush again (understandable).  So I took a 5mg, it put me back to sleep.  Bear came and shoved his great big snout in my face at 6.30, I just couldn't fully open my eyes, he tried 3 times to wake me but I couldn't fully come round.  Poor Boy, he went and laid down, but I think he needed to pee.  It can't be nice for him, remember what its like when you wake up 30 minutes before the alarm wanting to pee and you lie there instead of getting up.  You waste that 30 minutes because you can't go back to sleep!

 

The next thing it was 10.15 and believe it or not, although still sweaty and still feeling extremely bloated I had got over the worst.  I came down to find hubby already drinking a coffee.  Although I doubt he slept much from 5.45. 

 

So here we are, another day, another 7 until this stomach is empty.  I am not sure whether I can last that long.  Maybe if the NHS send me an appointment for this week for a retry I will go there, but I can't see that happening!

 

Today is going to be a nothing day, I am exhausted.  Have to decide whether I take two tablets together or separately.  Or just stay on one!  I am down to 9.8 but that's because my food intake is that of a mouse. 

 

I always said when I started this blog I would write as honestly as I could, maybe it is hard for some of you who have started reading my blog because you are facing this cancer.  As the years go by it does get harder.  Our options are less and the meso spreads, if you are unlucky.  I am still hopeful that I will keep on battling but we have to be realistic sometimes, things just don't always go the way we want.

 

I am pleased to say Lou, my Australian fighter, has come through the chemo and you can catch up with her on her blog.  My fellow bloggers are all at different stages right now, Steve is skiing just after completing chemo (now that's a tough guy), Steve & Linda are enjoying the summer, Amanda and Ray are taking the ups and downs in their strides, Mavis and Tess both have good news and lets pray it continues.  Although I am sure everyone reads each of the blogs, but a recap is always nice.

 

To those out there fighting my heart is saddened for you, not only do we have to fight meso within our families but normal life continues and other illnesses can strike down members of the family.  Then it's how do you keep well to ensure you can be there to help when things don't go well.

 

I also wish that A&E's had a separate place for cancer patients to turn up.  We could do with a special 24 hour ward for anyone with cancer.  Things happen that scare us, we don't know what the cancer holds for us, how we are supposed to feel, what our bodies could go through.  We rely on ourselves and our partners to get us through.

 

On a different note what happened to summer, we read we were expecting 3 days of 22 to 24 degrees sunshine, we've had grey clouds all week and today is no exception.  Sunshine brings a smile to our faces, warmth to our bones and lifts our spirits. 

 

 

Healing Circle - Unbelievable

I went to see my GP yesterday to renew the water tablets and have a chat.  My GP has been wonderful since starting the practice, he has gone out of his way to help me through the meso and has promised to be my back bone as we move forward into another journey.  He never met me when I was originally diagnosed, he joined the group just before my surgery in 2009.

 

He checked the computer, still no discharge papers from Darlington.  I told him I had seen Dr Vish and Friday I was having my stomach reduced.  He isn't happy that I went the private route but understood the way I felt about this lump out front.

 

I talked about the future, who would help me through the decision of choosing between Dr Steele, Dr S or Prof Fennell.  He told me he would.  Although he wants me to try and get back in touch with my old oncologist Dr Hughes, he was private when I saw him, but now back on the NHS.  My doc thinks it would be a good idea to go through things with him too. 

 

I think my Doc is hoping that St Barts or Leicester may talk my current oncologist into trying a different chemo, good luck with that!  I said it would be better if I could have treatment up here than have to travel to London or Leicester and have it.  He mentioned that due to trusts and funding that may be difficult, so I said well I can always pay for it.  He said I shouldn't have to pay privately for a treatment to keep me alive, I have already paid out quite a lot over the years and the insurance paid for my second round of chemo.  Of course the first round was free as it was on trial.  I would pay anything to keep me alive and so would hubby.

 

From the doctors I went straight to healing.  I haven't been since long before our last cruise, so it was great catching up with the ladies.  Three have read my book and were telling me how much they enjoyed it, even though vampires were things they would never normally read.  I was told off by one because she said she couldn't put it down for 2 days and didn't get any house work done!  I was pleased, in fact I was beaming with the praise.

 

We went into the service room and the atmosphere was electric.   Myra and Shirley have both worked on me together for a long time and it was the same yesterday.  As I sat waiting I thought of all those with meso and especially Lou, Tom and Esther at the moment.  I could feel tingling long before I sat for healing.  I can't say what I felt apart from I did feel someone wiggle my nose.  From somewhere deep I had a feeling of peace start and it came out over.  Tears fell from my eyes yet I wasn't upset or felt like crying.  It was if my soul had been touched and lifted.

 

When we asked for the energy created to be used on others I sent mine as always to those who I know with meso by name and then the meso community.  I truly hope many of you felt the peace that I did yesterday around 2.30.

 

As we sat watching TV last night I attempted to groom Bear's under bits - not a chance!  My mug of tea was down by my side as I was trying to get those knots out under his back leg but he got up, sniffed my mug and I lost my tea!  I have to put a towel under the mug otherwise he splashes it everywhere!  Sometimes he can go for weeks without bothering then suddenly he wants every cup I have.  Our Jagar (Bless her) used to love my coffee, no cup was ever safe.

My Mug or Bear's Mug?

My stomach seemed smaller last night but I forgot to take the water tablet and this morning its looking a little more squashy!  I am still not hungry although I did manage a tuna sandwich and soup last night, not really enough to keep me going but at least it is something.  I felt extremely full by the time I finished it.  I jumped on the scales this morning, I weight 9.8, so I haven't lost a great deal, 6 lbs in total.  Makes me think the fluid is getting heavier as I haven't really eaten properly now for 3 weeks.

 

Mavis has done well with the protest but still needs more people involved, visit her website for details.  One last piece of sad news, Linda (ADAO) was burgled - they took those things that can never be replaced, jewellery her beloved husband had bought her, including his wedding band.  I hate these low lives.  Sentimental value is worth more than any £ or $ that they would get to probably feed a habit.  I just hope that saying works "What goes around comes around".

 

Well on that note I had better get moving.  I'm going into work and hopefully get a few hours in.  The sun looks like it may stay this morning, not much of a breeze but plenty of floating grey clouds.

 

To all those involved with mesothelioma I hope this ray of sunshine lifts you today.

Stomach Result

I emailed a private doc that I had seen to diagnose my hernia, Mr Vish, on Sunday, in the hope he will be able to do something with my tummy.  I have waited patiently for the NHS to send an appointment that was supposed to be for last week, but then what if they didn't do anything by our holidays - I would be snookered.  He emailed me at 8.00 Monday morning and said I could see him that night.

 

The weather was terrible here all day, it rained and rained.  I knew I had to go to my mam's and sort the house out as I am renting it to a friend for a couple of months while he waits for his new house to be finished.  It was emotional again, packing up the remainder of things and giving away the final things that adorned her bedroom and the living room.  I had sorted 4 boxes out that I thought we, as a family, would want to go through, and they have gone in the attic.  I only filled up once but managed to keep myself focused and not break down.  I still expect to see both my parents sitting there, but more so my mam.

 

I had an appointment with my back man at 3.30, after a quick stop at home off I went to Durham.  He can tell a difference with the muscles in my back, they are certainly relaxing and thinks the stomach is now putting a little pressure on it.  Once my stomach is sorted he believes my back will be ok, and will give a few exercises to ensure I keep it strong.

 

We stopped off at home to feed the dogs then off to Darlington to see the private doc.  He scribbled some notes down, examined me then told me I was getting treated on Friday morning.  He isn't doing it but the radiologist is.  He will then see me when we get back from hols to ensure it has stayed down.  If it comes back up he is more than happy to put a pin in it (joking).  I will feel rather embarrassed if it is all fat that I have suddenly put on!  Seriously though he tapped here and there and could here fluid.  He doesn't think its a lot either but enough to cause the problems of not feeling hungry etc.  I think maybe the water tablets are working, my wrists, ankles etc are looking thin, I think they are pulling all my fluid and pooling it in my stomach!  He told me they will help control the symptoms of fluid.

 

We came home and ate, I didn't realise how late it was, nearly 7.30 by the time I put the dinner plates on the table. 

 

Lou, our wonderful warrior in Australia has just received news that she is starting chemo again.  I am pleased that they are going to treat her again but also worried for her.  She has had bad reactions, much like me, to the chemicals.  She is being admitted for treatment, I guess by now she has already had the first lot of chemo, due to time difference.

 

We spent a little time yesterday texting, without saying much to anyone, her stomach too has been expanding and when she got her results her specialist told her the cancer is thriving, fluid in her abdomen too.  Please read Lou's story if you haven't.  She is an amazing lady who has been through more treatments than I. 

http://asbestosaustralia.blogspot.com.au/

 

Bear is still staying by me and last night kept resting his head on the side of the sofa and giving me those big brown eyes.  Although I think he was after doggie treats rather than wanting kisses!  AT the moment he is waking me up every morning at 6 am wanting to go out, he is consuming so much water during the hot nights he can't hold out.  I don't want to make him lie there bursting at the seams but I have to hope this won't form a habit.

 

As I wait to hear how Lou is, I know so many people are going through treatments or preparing too.  I am worried myself about starting something.  I want to get the cancer back under control but am terrified that maybe the chemo could kill me the next time round.  We are always dicing with death, whichever option we opt for, or if the oncologists are willing to give.

 

The meso community supports each other through these times, as well as when we lose a loved one to this terrible cancer.  We share the good news and celebrate and take the bad news to our hearts.

 

I must try and get into work, the sun has come out today so maybe I can fit into another of my friends skirts.  Oh to lose my tummy, shame Mr E couldn't get rid of his so easily!  I want to get him the Insanity work out discs but I have been unable to find them in UK outlets.  We saw this advertised in the States when I went for my last cryoablation, wish I had ordered them then.  I would have a nice slim hubby, well if he actually did do it!

 

Hope Steve has arrived at his skiing, Steve & Linda are filling their days doing something positive, Mavis is resting, Tess is still meeting her Targets, Amanda & Ray are having some chill time and Lou, hope the chemo is being gentle with you.  To everyone else, have a good day.  I feel uplifted and hope that I will stay this way.

 

 

Still Down

I got out of bed at 8 this morning and I must say my body felt better for not staying in bed any longer.  Yesterday I didn't take the water tablet and found I visited the bathroom a lot more than I have all week but then what if I start filling up again, so I have taken it today with lunch instead of first thing.

 

After sitting in front of the computer this morning then showering I was hoping that the easterly wind that is wild would die down but no it stayed.  By lunch time the dogs were biting at the bit to go for their walk so I too bit the bullet and reluctantly went with them.

 

As we pulled up to the fields two young deer were watching us and I managed to get a lovely pic of them before they sprinted off at a fair pace.  Which is good really as we don't want them hanging around while some poacher aims his gun and takes them down.

I am still feeling lifeless, which is stupid.  Maybe for the first time in all these years I am feeling defeated but I shouldn't be.  Heavens Jan get a grip and start living again.

I had a different email sent to me this week, this is part of what I received.  I did read the article and think it is worth a read and consideration from the rest of you.

I wanted to thank you for sharing your story with all of us and send you an article we wrote for my wife's blog when she worked at a Nanotechnology company, right before it went bankrupt, unfortunately. The article explores possible links between Mesothelioma and carbon nanotubes - and, like your blog, calls for more research: 
http://chemicalengineeringnews.org/mesothelioma-symptoms-linked-to-nanotechnology-carbon-nanotubes/

 

My friend Chris called up for a tea and inspection of my stomach.  I have been active though on the email and have left one for the doctor who diagnosed my hernia.  It will be a private appointment if he is able to treat me, but I promised Chris that I would ring the doctors and make an appointment with my GP. 

 

A few friends are a little irate with me for not wanting to see cancer specialists earlier than September and in many ways I totally agree I am dicing with my life leaving it another 7 weeks, after all many people have lost their battle in such a short time, but I don't believe my meso in the chest will get me by then.  It's this stomach I need to worry about.  I have noticed today that my wrists, ankles and legs are looking a lot slimmer, maybe the tablets are taking the fluid from everywhere else but my stomach! 

I didn't eat a lot yesterday either, 2 slices of bread and some fish fingers, I just don't have an appetite but I can smell the roast beef in the oven and have just put some potatoes on to boil to make some roast spuds.  Maybe I will tuck into a proper dinner with more vigour.

 

I have also discussed with hubby bringing a Macmillan nurse back on board.  I've had two over the years, both of which I had to introduce mesothelioma to them.  I haven't seen one since circa 2010, it could be later but I didn't particularly rate what they did.  Why am I bringing one back if I can, well they may be able to co-ordinate things a lot easier and instead of hubby and I having to sort things, maybe they can help.  If my onco isn't interested in finding out how my stomach is or sending me a follow up to see what happened about draining, which is caused by my lung condition, then who am I left with - no one.  I could go on raging about the lack of help the NHS has been but why waste the ink!

 

I am not the only one in this country with such worries, many of us are let down by the oncologist.  We are supposed to have a team in place who overseas every aspect of our health and treatment.  In easy terms these are:

• A Respiratory physician
• A Radiologist with thoracic expertise
• Histopathologist & cytologist (not some one we see)
• Clinical nurse specialist
• Oncologist with interest in thoracic oncology and hopefully experience with mesothelioma
• Palliative care specialist
• Thoracic surgeon with experience in management of pleural disease
• And Admin support to co-ordinate the multidisciplinary team.

 

Hmmm, how many have these in place?  Well, I can say I have A Radiologist - he is the same person reading my scans, I have a nurse and an oncologist.  I guess what I need is a respiratory physician who would then relate to all the other problems outside of giving me chemo.  I need someone to talk to, someone I can go through the different options available with.  I know in the past I have pretty much chosen my own route but I did use to talk with an oncologist, he was private at the time.  He has since dropped me as he closed his private practise back in 2011, that's when I went back to the NHS and found my current oncologist.

 

I also read on facebook that a man was diagnosed at 35 with meso. This isn't the first one I've read about, but it shows that this cancer is showing up more and more in the younger generation. I can understand mine as I was a 60's baby, but 35 you are talking about late 1970's.  Or is asbestos no longer sitting dormant any more?

 

Enough I hear myself yell, what does it matter, I have it, I can't get rid of it and it will kill me!  I was in HDU 9 years ago today, I had gone in for an investigation, which should have been 30 minutes tops, I ended up down in surgery for nearly 5 hours while my surgeon removed 2 large masses from my left lung and then carved out 20 to 30 mushrooms from my lung lining.  I was still non the wiser that I had cancer until 3 weeks later. 

 

I have done well, but many have done better.  It is lifting to read that another survivor is on 10 years or 11 years or even 8 years and that they have only had say one surgery, one course of chemo and one set of radiotherapy.  But I also get jealous, they have remained meso free with less treatments.  You may say I am lucky, your loved one might have had only 18 months and yes when you look at that I am lucky to still be here, but we get worn out fighting. 

 

I, for once, really want to put my head in the sand and hide.  My husband feels helpless - there is nothing he can say to make me feel better.  I have been the strength for both of us through this long fight, my gauge is on zero.  My friends have rallied to lift me, those who are going through this understand but it is unfair to put this on them as they are fighting too.  Those who haven't got an earthling about what it feels like just can't help.  My solace is this blog but then those who read it are fighting and I don't want them to get the negative vibes that I need to get out of my head.

 

Tomorrow is another day and by then, fingers crossed, my mood along with the weather will have changed.  I wonder, as you do,  I thought if I had a big belly would hubby get the hint of how awful it looks, I just hope my thoughts didn't make it happen!

 

My back is kicking off again, no white noise in my leg but pain across the lower back and towards my left kidney.  Maybe it isn't my back at all but the meso and the fluid that is causing this.  How I wish I had a scan and someone I knew who could read it and go right through the thing with me, explain everything that is going on inside my body right now.  Then maybe my mind would get a grip and I would know my enemy's fortress and know what is causing what.  If only ..........

 

I guess I have rambled enough, I think my mind is clearing.  If nothing else it is now empty.  Thank you blog for giving me this place to spill my thoughts.

 

 

 

Is it a Dream

Yesterday the sun shone, albeit through some clouds occasionally, but up here the temperature was nice, although hot for the dogs.  I went into work and forgot all my problems, once my mind was on the job I was just any other person. 

I was sent a fab supporters shirt from Nancy who also writes for Mesotheliomahelp.  In fact that is how we have become friends.  Each time I have worn it I have meant to take a photo but yesterday as I left the house hubby caught me.  So to prove I am supporting the Bulls, here it is Nancy.

It also helps cover my stomach although it makes a nice bump where Bulls go round!

I actually felt healthier yesterday than I have in days but this morning that seems so short lived.  I was up a couple of times with Bear, the heat is just killing him.  I tried yesterday to clip his fur back, even shave some off, will he lie there and let me - No!  I must have taken a bag full of fur out of him again though.  He decided he is now sleeping upstairs, I think he senses something is wrong with me, but our bedroom is hot in the summer, with two fans pointed at him all night he was still up and down.  At 4 he came up to me and shoved that big wet nose in my face, so I came down and let him out.  He did his business then decided he wanted to stay out, the sky was beautiful, a new moon was bright even though dawn was breaking.  So I left him out, leaving the front door open and the vestibule door closed.  At 6 I heard him pounding at the door to be back inside the house.  So I got up, he came in and went into the shower room.  He was getting too warm from the sun that was now truly up.

 

I didn't wake again until 11.00, my body hurt which made getting up just as bad as staying in bed.  It has taken an hour to pull round.  The weather outside is making me feel cold.  I had hoped to maybe read in the sun and rest as I have the energy of a snail but I can't see that happening. 

 

Something I should do is go shopping, we go on hols again in a few short weeks but nothing I own is going to fit around this stomach of mine and it isn't going down any.  Maybe the water tablets are holding back any new fluid but they aren't working on the bump I have in front of me.  But I just haven't the energy or the enthusiasm to do that.  I am becoming a miserable lazy person.

 

I still have mam's house to clear too, I am renting it out shortly and still haven't gone through her things.  I wish I could be ruthless and get rid of it all but I can't, yet what is the point of holding on to stuff?

 

I am making arrangements with Mesothelioma specialists for September.  Maybe I am being a bit stupid here as we all know how fast meso can change and I am looking at some 7 to 8 weeks before I actually see someone.  Yet I don't want bad news before we go on holiday.  It would spoil it if they said to me there is nothing left for me but to accept palliative care.  How would that make the holiday feel, the last one we will ever have together.  I am worried that this will be last we will have so I don't really want that confirming.  I have seen how fast this cancer can change from hanging in to outright killer.  It will be on my head if I have made the wrong decision about holding off.  I don't know how fast they will turn treatment round either and is arranging to see three different people all in the same field wrong.  How will I choose who to go with - I have no one to discuss the options with only hubby and me.  He is where I wish I had some help, at least we can air things on here or face book but deciding on what route to take to keep you alive is not the easiest.  Usually you have guidance.

 

Maybe an afternoon on the sofa isn't such a bad idea after all.  People who are healthy have days where they are sofa slobs but then I keep wanting to make the most of my time.  Lately, and I really mean this last year, I haven't been doing that.  I have wanted a hot summer at home so we can go places and visit them together.  So far all I have done is be ill and sit in the back garden!

 

I hope you are keeping up with my warrior blogs, at least at this time they are all positive which makes me feel better.

 

The sofa is calling, I hope where you are the wind isn't as wild and the heat isn't unbearable.

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.