Wednesday Morning

I didn't feel awfully tired mentally last night so stayed up till 11 and watched my recorded The Returned.  What a disappointment in fact what was it all about!  Spending 6 hours watching sub titles and to be no wiser than I was when I started watching it.

 

I am debating on healing today.  Wednesday is our healing service day and I certainly could do with some hands on.  I know that the ladies have been sending me absent healing, but to feel those hands warm your back, sides or shoulders up, well that's a different thing all together.

 

I went into work yesterday for a few hours, but sitting at my desk is still affecting my back, whether it's because I keep lifting files up with my left hand I don't know.  Also my tummy did feel a little better yesterday but by last night seemed to harden again.

 

This morning I have woke up with a pain under my right arm, when I breath it hurts more.  I can't do anymore than I am doing at the moment.  I have set the balls in motion, hopefully a visit to Prof Fennell will give me a course of action.  I have wrote to J Steele and Peter at St Barts but one has just returned from holiday and the other is going.  It may be a while before they catch up with paperwork too.

 

I helped hubby in the garden yesterday afternoon, well I did a little of help, I cut back a couple of branches on a plant that has overtook the garden gate!  Then I helped pick up the branches and leaves he had cut away from the trees that have shot up.  They needed chopping as light in our office is weak, looking out all I could see was green.

I really don't know what I feel at the moment.  I have lifted my slow release morphine by 60mg a day yet I can still feel pain.  This new pain under my arm for instance, what is that all about?  I do want to live, I want to stay around as long as possible.  I read on fb a lady said she told her team she wanted 10 years.  It reminded me back to my first oncologist.  I asked how many years after chemo, she said maybe 5, I said 15 would be better, she said I think 5 so I went for 10 as normal and 5 fighting.  As it turns out I've fought this cancer nearly every year I've had it.  Remission has played a cruel game with me but then again I am thankful that I am still here.  But then I am frightened of being in so much pain that nothing can control it other than being knocked asleep until my last breath.  Then that will not be a life I want to live. 

 

I am scared of starting chemo again, especially after such a severe reaction in November, but if I don't then I certainly can't treat the symptoms that are starting to show.  The ascites being a new one, the right lung now coming out of dormancy and bringing with it pain in the right shoulder and back then the fluid.

 

There again, maybe a trial will stop all these things, but when you are in this predicament you want something tried and tested to stop everything so you can stay alive and be with those you love.  Yet to get there we need to take a poison that makes us feel so unwell while on it and a while to get over. 

 

So I had better move, if I still feel so uncomfortable after a shower not sure whether I will go into the office, but then it's another month end.  Don't these weeks just fly past, even more so when the sun shines.

 

My heart goes out to many of the meso community at the moment, so many new faces are appearing and so many of the regulars are back facing treatments.  Please God, let us find something to knock this cancer back.

 

 

Inclement Weather - Like my Meso

I actually stayed in bed till 10 am this morning, another late one for me.  Even better I think hubby has caught up on his sleep, coming down stairs around 11.30.  The rain sounded beautiful last night as it just kept coming, watering the garden and hopefully clearing the air.  Unfortunately, it left the clouds.

 

My stomach doesn't seem to have gone down any further and is now bruising on the outside, more so the left than the right.  Strange as the needle went from right to left, makes me wonder just how far through my body the needles went.

 

As hubby took the dogs I settled down to make a few phone calls, I am terrible at ringing people but the door bell rang and my friend Lorraine was stood outside.  It was great that she visited, having been at a family wedding yesterday we talked about that and she showed me the photos.  We didn't mention my current situation, anything but.

 

Hubby had another nap this afternoon, he is drained - to all carers out there, this is normal for you to feel this way.  The adrenalin is cursing through your veins too when things don't go right for your partner or you feel helpless and unable to do anything.  Problem is though he thinks I am now fit and able to just forget the whole thing, like my stomach will disappear by magic or the water tablets will reduce it all.  I'm not peeing, I don't feel hungry and any weight I am losing at present is due to lack of food rather than loss of fluid.

 

Another friend rang too, she has finally got back to her normal life after having a hip operation.  It's good that things can go right for people, after all she didn't have a good year last year breaking her ankle then this having her hip replaced.  Life does go on.

 

I feel at a loss myself, I am full of pent up rage that I can't release, I just don't know how to let it fly!  I wish I was in what Dot wrote recently 'A Dream' and any moment now I will wake up.  My mate Lou has wrote a very good blog yesterday and what she wrote sometimes rings true.  Being another long term survivor sometimes can leave you feeling guilty that you are still alive and others can resent that fact.  I have outlived a few people with different types of cancer, Linda with breast for instance.  Her diagnosis wasn't terminal yet it took her a few years ago. 

 

We are trying to bring awareness of asbestos and the dangers of what life with mesothelioma can be like yet politics and 'I'm more important than you' syndrome is always out there at the top.  It's like some club where the committee can never get on and always someone trying to be better than another.  Why can't all the organisations work together, keep their own identities but share and work together on projects?

 

Physically I am also wiped, I forget (so does hubby) that my body is also trying to fight off rogue cells from growing inside my body.  Great from the shoulders up I look so healthy, what a sun tan can do for you!  My stomach is hard, when you have natural fat you can suck it in and fasten trousers without being uncomfortable.  I can't suck in, let alone feel comfortable.  My back is still aching and my meso is doing something different.  Maybe the strain in the right is different to that in the left, I have heard of this happening.

 

I am feeling sorry for myself, maybe if you are reading this you too are feeling sorry for your own situation.  I know that I have to find the strength to fight another day.  I owe it to me to survive, I have punished my body so much with operations, chemicals, radiation, freezing that to give up now would be unfair.  I look back to my endo - was it really endo that I had, could it have been this terrible cancer then?  I have had so many operations for health it makes me wonder how some one could put themselves through it for vanity.

 

When I have listened to people complaining about their life, situation and even health I have always shown empathy and tried to help, yet without the support of a few people, those on here and face book, I have never really had that for me.  A friend is a binge drinker, she is carrying excessive weight because of it.  At the moment I am so annoyed at her because she could be healthy, instead she is damaging herself for what, to lock herself up in a bedroom and drink into oblivion, when she comes through the other side she seeks sympathy.  I have watched this for years but now I don't think I can do it anymore. 

 

I have wasted today, I went out for only an hour this afternoon.  I sat and read this afternoon, I feel guilty about that as I should be correcting my own book to get it finished and hopefully help raise some more money.  Although why bother, the first one has sold 62 books from here and maybe 19 on kindle.  Yet writing is something that I do enjoy and it does take my mind away from what my body is doing. 

 

I may be asked to do some more interviews for the local papers regarding mesothelioma and what it's like to be dying from a man-made disease.  I hope they do them when I am fat, although the one I did in February 2009 I was fresh out of surgery and I didn't look that ill.  Anyone that passes me would never know about the time bomb I carry inside.

 

I do feel for the people who love us, they watch us as we suffer from chemo, see the fear in our eyes as we have an adrenalin rush.  They feel helpless and want to call ambulances, where we won't allow them too.  I know that the NHS has improved, my recent visit has shown that.  But once I was rushed in, ok before being diagnosed, and I was left sat in a chair for 6 hours in agony.  Not one person came to see if I was ok.  Things have changed but the fear of being in a hospital bed feeling bad isn't a place I want to be.  Less so when they say they have nothing to help treat you.  I still can't get over my oncologist who said to treat the effects we need to treat the disease but by the way you can't have any treatment. 

 

I should be filling you with positive thoughts, telling you that you can keep buying time, after all I have managed it - but sometimes at what cost.  I have dragged hubby to the States to have treatment, I wasn't worried but he was.  I didn't look up the dangers - he did.  I wasn't awake enough the last time to understand what could have gone wrong when they pierced a vein in my lung - he knew.  I would fly out tomorrow and have my right growths cryoablated, he would not be happy about it, but as it turns out I can't fly that far.  It still annoys me that they can't see the benefit of it in the UK.  It does less damage than radiotherapy, yes there can be complications like piercing the lung or hitting a vein but then with radiotherapy they can burn the organs.

 

Tomorrow is Monday, I am going to try and go into the office.  I can't guarantee until I wake up as to how I feel and that is something no one seems to understand.  If I've had a bad night, sweats, pains and bile burning my insides - am I going to jump out of the shower and shout I'm Alive and bounce into work.  Do my brothers not want to see that sometimes it is a struggle.  Then I feel guilty as one of my siblings is in a worse place than I am.  Having MS, having to wear a colostomy bag because of it, having lung problems including asbestosis.  He goes everyday, whether weighed down by unbearable pain or not.  That makes me feel guilty too - many years ago I did the same, I would go regardless but now I just can't summon the motivation or energy.

 

There I have emptied myself to you, I may sound selfish, uncaring or totally negative but I have to get it out.  If you feel the same, open up word or notebook and get it out.  Whether you're the carer or sufferer, get those feelings out, don't reread what you have written, don't feel guilty about writing those thoughts, it's wasted energy being used inside you.

 

I hope that tomorrow I will be better, that I will shine with the sun, smile in the breeze.  I am always happy to be alive but that doesn't mean I am always happy with life.

 

Wishing you luck on your Mesothelioma journey - where ever you are - No One Deserves This unless you are a cold blooded Killer.

 

 

Dogs Day

I managed to sit in the garden most of the day, although the sky was more cloudy than blue but I didn't get to walk the dogs.  It was too clammy for Bear to be racing around chasing pheasants or sniffing out whatever has been around.

 

As hubby cut the grass and weeded the veg patch I sat and read another Scott Mariani book, how Bob Hope manages to tackle every armed man and come out of it unscathed is beyond me.

 

Chris called up for a coffee and a chat just as the rain started, although it only spitted a little.

 

My stomach hasn't gone down any further nor have I spent time at the toilet, slightly worried that the water tablets are doing nothing.  I am back to not being hungry, hubby made a salad for tea but I only managed a little ham, a piece of lettuce, some apple, two grapes and part of an avocado.  Not enough for a growing woman like me, Ha!  In fact Bear, who sits by the table and watches every mouthful I eat with envy, decided he wanted to try what was left.  Salad and dogs usually don't go but he enjoyed the avocado and a grape.  Usually if he doesn't like something the moment he puts it in his mouth he drops it out, so I was surprised he ate them and wanted more.

 

Lexi got a little excited outside and wanted to play, three runs for her Frisbee and she's done, but Bear joined in too.  He wanted to play football - they are really like kids aren't they. 

 

I rang to see how Chris Shippen is doing, I am pleased to say she is home but she isn't eating and has no energy for anything.  Her grandchild is to be delivered on Tuesday and I pray that Chris will be up and feeling better to be with her daughter and hold her hand. 

 

To everyone with Mesothelioma and for those who take good care of us I hope you enjoy the rest of the weekend.  If you live up north there is always Sunderland Air Show to visit. Me, well I'll be in the garden again tomorrow if the weather is ok.

A New Day

After the terrible start to yesterday I finally got out and sat in the warmth but under the clouds!  My GP arrived at 1 to check on me and my tummy.  I would be lost without him as he does more than most doctors I know.

It took a while to get comfortable and I was pleased that Bear finally stopped wanting to be by my side and disappeared into the brick shed in the garden.  He loves it there as the floor is concrete and the building doesn't get any sun. 

 

I have heard from Mary in the USA, she has contacted Prof Fennel and he has a couple of options for me to think about, so once the stomach is down I hope to revisit him and maybe get something that will push me forward and keep me alive for a good few years to come.

 

A lot of people have left words of support and comfort over the last couple of days, it does make a difference when you know someone else is going through the same but can take the time to wish you well or pass any information they may have.  Most of my fellow bloggers are doing well at the moment and I hope they all continue to do so.  Good news lifts us all and reminds us that we can keep going.  Lou has an important meeting on Monday and I pray they offer her something useful too.

 

My darkest thoughts came to the forefront of my mind yesterday.  I was frightened and thought if this is what life had to offer I didn't want to be apart of it.  Today I am back on the ladder climbing up.

 

I can't believe my stomach looks like this though, Bear was pushing through my legs when hubby took the picture.

I feel for all those mothers to be in this heat carrying such a weight.

 

I have lost 4 lbs in total, but the stomach hasn't shrunk any since leaving hospital.  I do need it to go further down so I can at least fit in to my trousers.  I know you can buy bigger sizes but then they will hang on my bum and legs.

 

I didn't sweat last night but I did go to the bathroom a couple of times during the night.  Come on fluid get sucked out of the body and back into the blood stream so I can pass you out through my bladder!

 

I have heard that many people have problems with stomachs like this and have to have them drained regularly.  I would hate to think I had to go through that pain every other week.  Although my GP was shocked they didn't insert the drain under Ultra Scan guidance instead of just marking the spot.

 

Mavis is currently on a chemotherapy called Gemcitabine, this has been used as standard in Australia for approx. 18 years with good results so I can't understand why we can't use it here as a back up for those who have had Almita twice.  Although my problem is the platins they use as agents.  I wonder why they couldn't mix Almita and Gemcitabine together?

 

To be honest, I just want the stomach to go, I can cope with the meso growing at a slow rate but I can't cope with this.  It is putting so much pressure on my ribs, chest and back.  I have lifted the MST to 160 morning and night, maybe why I woke up without as much pain.

 

On that note I am off in the shower, there is a slight breeze picking up outside and I really would like to go with the dogs. 

 

Hope everyone else is having a good start to the day, I feel for those on chemo at the moment and those who are in hospices.  We forget what our partners go through sometimes maybe one day we should have a carers day, like a mother's day, to say thank you for being there.

Another flight or fight

We went to bed late for us, around 11 as I just didn't want to lie down.  I was tired and soon drifted off to sleep.  One good thing happened during the night I was up twice needing to pee. 

 

At 6 am I woke with the sweats, my body was drenched and I was in pain, my ribs felt like they were being pulled apart and forced open.  My stomach hurt as did my chest, the weight felt like I was going to be crushed and then the bile started to burn.  I laid for an hour trying to get back to sleep but unable to settle.  Then it started, the breathing felt restricted, the hot and cold clamminess.  I didn't know whether I wanted to be up or down.  My ribs and heart felt like they were struggling to do their jobs.

 

Hubby blamed having the scan, insinuating that if I hadn't had the scan I wouldn't be in this mess, I think he thinks it is mentally brought on.  I shouted at him that I had had a few days of this on the cruise, I've never raised my voice that way.  He realised it was a stupid thing to say because I was having the symptoms before the scan, I guess he was hoping it was psychosomatic rather than real.

 

I came downstairs and took my temp, 35.8, mesothelioma warpath temperature.  I still didn't know what I wanted, I couldn't sit as my chest felt compressed, I couldn't stand as I felt weak.  Hot and cold waves washing over my body.  I decided to take some diazepam to help relieve the muscles and hopefully send me to the land of nod.  As my eyes started to feel tired again I went and sat on the recliner in the lounge, he kept saying breath in and out until I finally fell asleep.

 

I have woken some 3 hours later, my mouth is dry but the hot and cold sweats have gone, my ribs still feel constricted but at least I am back to a former shadow of myself.  He was going to ring for an ambulance but really what could they do with me in hospital.

 

I am scared of these events, you start believing this is the end and how do we manage and cope.  You think it is never going to end and you will spend the rest of your days like this.  The additional pain, anxiety etc makes quality look nonexistence.  I am worried about going on holiday, these events happen anytime without warning and I did have a couple on the boat.  We will lose a lot of money if we don't go, we have booked a very expensive suite, why a suite, well if one of these events occurs it is good for hubby not to have to sit on top of me in one room.  Plus space is needed so I can pace.

 

Once the morning is out of the way I do normally recover and feel better, this morning I am not fully recovering.  My extended tummy is the main cause of the pressure on my ribs and I am at a loss as to what can be done.

 

I can feel my right lung isn't very well, pain is floating from my shoulder down to the centre of my right side. 

 

As my journey through my battle with meso has been long term so many different elements have taken place, from the pleurisy in my left lung to the 10 weekly pains and restrictions felt in my heart now to feeling a horse is sitting on top of my chest.  I have never heard of the stomach being filled with fluid, in all my years this is the first time I have ever heard of it, is it natural? 

 

I need answers but no medical professional is willing to give them.  In most cases the fluid will just keep coming back but as I am not pooling in great amounts in anyone place they can't just keep sticking drains in everywhere, I need to think of infection as well as seeding.  My one hope still is the fluid has no cancer cells in it and it is caused by the right lung irritating the abdomen or the left diaphragm doing the same.

 

I have begged God to please take this away.  I don't want to be a hero or a martyr to the cause, I just want to have a good quality of life.  A good quality can only be achieved by removing the problem and we all know that isn't going to happen.

 

I also thought about chemo, could I really put myself through that again, the way my stomach would make bile come up into my throat, not just a light bile but the yellow and orange thick gloopy stuff that couldn't wash down the sink.

 

It is no fun for hubby either as he said he feels useless, what can he do but be there but feels like a limp Christmas tree that can't support any decorations.  I feel for him too, and as a patient I seem to look to him for strength and answers of what to do.  He obviously doesn't have them. 

 

I love life, I love being alive and spending it with hubby, the dogs, working and even writing.  I sometimes feel good about being able to help someone else through this terrible death march we are walking on but I don't think I have the strength to keep going under the pain and duress my body is now facing. 

 

I hear many don't have pain, they just are breathless and little pain, then somehow they go to sleep and never wake up.  Some have terrible pain and are kept near zonked the entire time.  How do they cope.  Can I cope, I don't mentally feel this is the end, it feels like another round of torture that I must go through.  Yes I am talking from my heart, I am telling you it as I feel. 

 

If I could just get rid of one thing, the stomach fluid then maybe I will feel better.  It is obvious to me now that the fluid has been building up for some 20 weeks, probably since I did my back.  If I had never done my back I would have had all those weeks of glorious good health, with a few adrenalin rushes, but overall good quality.

 

The onco said we can't treat the side effects unless we treat the illness, as they aren't treating the illness then I guess my side effects of mesothelioma are going to get worse.  I honestly don't think I can bear anymore pain or things that go wrong. 

 

Remember Love Story, it was a movie about a young girl who had cancer and refused treatment, it was made in the 70's.  It showed how she slowly died to cancer, but it never showed pain it was based on emotions of losing a loved one.  Nothing on TV or film actually shows the true pain we go through.  Do we want to know in advance, I don't know, but as Lou said yesterday on Skype, we all travel a different journey through the cancer until it comes to the end, then we all go the same way.  I just hope that not many of you have to go through the terrible things I have endured on my journey.

 

If someone out there has experienced this form of events or is experiencing it, please reach out to me, I need to know what I am facing.  Maybe those additional tablets I keep in the cupboard may be used for other than pain relief when things get too bad.  I may never be in control of this disease but I will ensure I am in control of how I end it.

 

I know that many other warriors world wide are fighting hard, in the UK we don't have the resources that the USA or Australia have but I do know from the many emails I receive that we are better than many other countries.  This fight should be world wide, but like everything else organisations become political too and that stops the common fight of us all.  Always some one wanting to outdo some one else instead of pulling together as a group.

 

On that note I am finishing this posting, I don't want sympathy but need help in understanding what my body is now having to face.  I can't be the first to have gone through so much over the years, my symptoms have often been so different but I can't be the only one.

 

My healing group are sending me healing everyday, I would hate to think I wasn't receiving that either, maybe things would be a whole lot worse.

 

 

My bloated mesothelioma belly

I am writing this in the IPad, I should have done this earlier today on the computer but I just couldn't sit at the computer this am.  I came home late yesterday evening after spending two days back in hospital.  I had hoped to come home much slimmer but my body never does what is expected (maybe this is why I am still here) plans made didn't go to plan.

I arrived at the ward on Tuesday to have my fluid drained as per arranged by my lung nurse Tuesday morning.  I arrived at Ramac and told I was now on Ward 14, after going through the whole paperwork again and refusing a cannula again I and hubby waited for the procedure to begin.  A very pleasant doctor came and told me it would be commencing shortly and could take 4 hours to drain but I would be going home.  The trolley arrived along with 4 doctors, 3 were there to learn how it is done.  The first needle was to freeze the skin, the second needle to freeze the first inch or so of the abdomen then a third needle would go further again.  Maybe because I use such a high dose of morphine the local didn't take much effect.  They had to keep numbing and lifting the dose.  Finally the drain was inserted and fluid started gushing out, I was over the moon.  No one came back to check the drain but 2 hours later it was only dripping but the drain was causing excruciating pain, it felt like my body was trying to suck it through my insides.

After another hour I couldn't take it anymore, nothing had come out so I found a nurse, a different doc came and pulled the drain out.  The moment she moved it out the wound gushed fluid, in hindsight we should have left the pressure off and let it come!  I was told that they would need to do an ultra scan next to mark the pool of fluid so I needed to stay in.  My side was extremely sore and wanted nothing more than to come home but sense told me to stay.  After a restless night I was told the scan would be done on the afternoon but it was brought forward to 11.

The radiologist put me on a bed, found the largest pool on my right side and marked it, she ,told me I was not allowed to move and that I would have to paddle slide to my hospital bed.  Back up on the ward my bed was a different angle, they rolled me to get the slide under and of course my position changed.  The doc turned up with his scalpel and needles and off he went again.  The needles hurt as the numbing took hold, and each needle got longer and longer.  The pain was terrific but they couldn't get the needle in to where it needed to go, after 30 minutes the pain was just too much.  They withdrew and told me they were going for a more qualified doctor.  An hour later the junior registrar for gastro arrived.  I told him I was going on hols in 4 weeks and could we try nearer the time.  He told me now was the best time as I was at early stages and I was already suffering with squashed organs due to my frame.  Leave it and things would get worse.  I resigned myself to another twenty minutes of pain for them to insert the drain, the needle was around 8 inches and hit fluid, he syringed some off then in went the drain, it stopped running within 5 minutes, in fact the fluid never made the bag, just filled the line.

I moved around, massaged my stomach to push the fluid down but nothing.  3 hours later the pain was at the point where it was unbearable and once again felt like it was being pulled into my organs.

I took some morphine, still no doc to check on the drain.  Finally I asked if they could remove it.  A different doctor did that, after he removed it he told me sometimes sediment gets stuck in the tube and could be flushed, this, in my hindsight was what probably happened on the first try.  I was annoyed at hearing this as there was sediment in the two lots of fluid that had come out.

I came away not actually knowing what is going to happen, my stomach has gone down 2 inches but this morning I was ill.  My chest was extremely heavy, the bile was burning my chest and I could taste it in my mouth.  My ribs again felt that they were being forced out wards.  I finally got up and came down stairs, a mouthful of coffee and I felt sick.  In order to take the water tablets I had to eat so managed 1\2 a slice of toast.  I found a message from Lou in Oz wanting to Skype, neither of us are good at modern techno but we finally managed to connect.  It was lovely talking to a fellow warrior and such a dynamic lady.  After our chat I laid down for a while, my stomach was sore from sitting as was my back.

The day has been on and off with pain, I am tired but am frightened of lying down and feeling that pain again crush my chest.

Writing on the iPad isn't ideal for me but I thought I should write the last couple of days before chemo brain forgets.

I never knew this could happen, it has affected me mentally as well as physically.  I don't know now I will put myself back through this again but at the same time I don't think I can learn to live with the additional pain this brings.

I have hardly visited the toilet today, I am slightly worried I now have another problem.  One good thing today, hubby made a lovely dinner and I actually managed to eat more than one fork full of food.  I ate 3 small potatoes, a spoonful of peas, a small piece of meat and some broccoli.  That's more than I have managed for a week.

This I will post now but will fix the problems etc tomorrow.

Happy Birthday - Not Really

Today I made 53, I should be happy because when I was 44 I didn't think I would see 45 and had a big party just in case.  So you see I'm still here but not due to the help and encouragement of doctors but down to my own perseverance that I made it.  A fellow meso sufferer who was diagnosed with me sent a card which said "Good to see you made another one"  True it is good.  For that I am truly thankful.

 

I woke up feeling rather ill this morning, I came downstairs and said to Hubby I think I have an aversion to work, seems each Monday morning I feel ill!  I didn't stay up long, I took a mouthful of coffee which nearly came up along with a lot of bile that had been resting in my oesophagus and my pains were bad.  I didn't think I would go back to sleep but the next thing I knew it was 10 am.  I made my way downstairs yet again.  The door had been busy with two bouquets of flowers for my birthday.  I didn't want to celebrate it but a pile of cards were waiting to be opened.

Hubby finally took the dogs out when he realised I was feeling much better, the door bell went again and a big basket of flowers arrived, hubby to me for my birthday.  I don't think I have ever seen such a large display in my life.

The weather here is warm but not rising above 19, no blue in the sky just grey clouds, but about 1pm we went to sit out for an hour before my appointment.

Where do I start.  Hubby is currently deaf due to a wax build up and missed quite a few bits but he did catch most of it. I am to have my stomach drained, he did show us a quick flip through the scan, although it doesn't go far enough down to show how much fluid is there.  He showed me both lungs, the left has grown slightly (in my opinion) but the right has meso inside the lung as well as on the lining.  I saw the fluid but again it isn't that much, compared with years ago!  The stomach has probably meso sitting somewhere, but we are hoping the thickening on the left diaphragm has irritated the lining or the fluid on the right has somehow managed to get into the abdomen.

 

He told me he will never give me any chemotherapy again, not even gemzidabine.  Why?  well the combination nearly killed me in 08 then I had the reaction to his low dose in November 2011.  He said that I didn't get enough of a good response for him to try again.  But I only had 1 and a bit doses but he wouldn't listen.  I had excellent results, the meso disappeared around the heart, the left shrunk, ok the right didn't do anything but you can't have it all.  Maybe if I had had 4 doses it would have done more!

 

The only thing open to me is trials, and lets face it - we don't have that many that don't do chemo!  He said he would refer me to anyone I wanted to go to, my GP would do that anyway.  I felt that any hope I have for the future has gone. 

 

I guess in his favour his concern was not killing me before my due time.  I honestly believe due to all these hospitals been sued for stupid things no doctor dare risk anything that is unproven.  When I asked about gemzidabine he told me it was UNPROVEN therefore unable to be given.

 

I disagree with his reasoning but unless I find another oncologist willing to risk his licence then I am at the mercy of the meso.  It seems so unfair.  My lung nurse was asked to arrange for my stomach to be drained.  We went through the risks ie my blood pressure could fall through the floor (it was low in hospital last week), I would need to be in hospital for at least 2 days, it will probably come back and they wouldn't be willing to keep draining it.  If a drain was inserted this would probably disallow me from any trials.  The list was endless.

 

I came out feeling flat, I looked at hubby and he looked flatter than I felt.  My nurse went off to arrange an appointment without any joy.  She took us into a room and told me that although its the lung that has caused this I need a different department to authorise the draining.  I could go to A&E and hope they admit me or leave it with her while she tried and found someone capable of removing the fluid. 

We don't have anyone up here really interested in Meso, she told me that maybe if the stomach stays down and I come back in 6 months looking healthy my onco could change his mind.  He had promised to write to J Steele but I noted that hasn't happened.  He is referring me to Bobby Robson Trial Unit again.  I have been before and I hate to say this but there are currently no trials for meso going on in Newcastle so what's the point!

 

I sent an email to J Steele yesterday but he is away until the 26th July, although I don't think there will be much on offer there, although he may give me a chance on gemzidabine, Mavis is doing ok on this chemo and so far has had some response.

The best laugh is he said in order to treat the stomach they need to treat the disease, yet he isn't willing to treat the disease so how can we treat the stomach? 

It also seems they will no longer monitor my progression by CT Scan, this is something I will speak to my GP about.  For my own sanity I need to know what is going on.

 

Things are looking bleak, neither of us know what to say to each other.  If my back wasn't bad and I didn't have this stomach I would look fantastic.  Problem is the stomach has been getting bigger over a period of time, my insides will have been getting squashed and moved to accommodate the fluid.  No wonder my chest is so heavy and my back hurts so much.  This fluid can also affect your body in other ways, taking out electrolytes and other minerals.  I mentioned my eyes playing up but he ignored this.  Yet when I have had sessions in the past my eyes have always played up, and to me are a part of my illness.

Lorraine asked if I was going to go out for a nice meal tonight, even though they have brought me up a full wardrobe to choose an outfit from I have neither the inclination or desire to go anywhere.  I feel like eating food as much as having 100 needles inserted in me.

Bear is still staying by my side, he never sits in the office and yet he has come in every time I come on the computer and sits by my chair.  Funny how dogs can sense things.

I close this by saying I think my lung nurse seems to be on my side and will help me through the next few weeks.  I said in May that if I needed chemo I would wait until September, if I can hold off the meso maybe September 2014 he might reconsider. 

WE NEED HOPE TO SURVIVE - THAT SHOULD NEVER BE TAKEN AWAY

Memories Good and Bad

On the 22nd July 2004 I was sat in James Cook waiting to see my Chest physician, it was a scheduled appointment as I had been there nearly every other week on a drop in with fluid build up.  He decided that day that I would be going forward for chest surgery to see what the hell was going on inside my chest.  He spelt out the dangers of someone having their chest cut open for no other reason than exploratory but my condition was deteriorating and the fluid that gathered in my left lung no longer purged itself.  Why do I remember the date - it was my birthday.

 

Tomorrow, 9 years later,  I will be seeing the oncologist about the new events that have started, the swollen abdomen that is without doubt fluid caused by the meso.  I have to hope I have a small growth that is irritating and the whole area has become inflamed.  In my estimation I think the stomach has been doing this for at least 12 weeks, although the growth of the last 4 inches came quickly due to flying.  It could be longer than 12 weeks but I knew something was wrong when weight that had previously spread everywhere else was suddenly sitting in one place.

 

My best friends arrived up yesterday afternoon armed with a new wardrobe of their clothes, dresses that would be slack on me.  They know I hate clothes shopping!  So if I can't get the gut to go down at least I can wear something other than the one pair of joggers I have been wandering around the house in.

 

Way back when, maybe 6 years ago or more, I met a lovely lady called Christine Shippen.  We have always remained in touch.  On Friday night with everything else that is going on I received a very sad phone call.  Chris has been admitted to hospital with peritoneal meso, her kidneys aren't working due to dehydration, she is sleeping and extremely tired and things aren't looking good.  Chris went on Alimta when first diagnosed for pleura meso and said never again.  Over the years she has had only Xrays and told the oncologist she has been okay, although last year some new growth was noted Chris said she still felt fine, but no CT was done. 

 

Firstly, she has done well on only one treatment but sad that things have got this far without it being picked up that it has spread to the rest of her body. 

 

She has been so happy with the birth of her first grandson and now her daughter is due to give birth, unfortunately she has had a lot of problems and the birth is the start of a lot of treatment for her daughter to come.

 

I would ask that if everyone sends a thought to Chris and asks for healing hopefully this will make a big difference.  As usual I have kept saying we will get together for a coffee and a natter but life gets in the way, work takes up much of my time and then when I'm home I am usually too tired to do socialising.  I need to start living as I haven't had that cup of coffee yet Chris is someone I have become close to over the years.



Chris, Dennis and baby Aidan

 



Time I got moving, the sky is grey but at least it is warm.  Have promised to go for a walk with the dogs.  I did measure that stomach, its 36.5 at the smallest point, that's 6" bigger than in February.  I hope the water tablets start working soon, I didn't notice any difference yesterday nor did I spend my day going to the bathroom.

I must also say a big thank you to Nancy from Mesotheliomahelp.net who sent flowers from the USA yesterday to cheer me up.

The Meso Warriors around the world send a bouquet and then Nancy sent one, I am totally spoilt by the love and support the mesothelioma community have given me.  I hope that in some small way I have been able to help someone along this journey too.

Mesothelioma and Ascities

I feel like my stomach is extending 2cm a day, my ribs are hurting more and more as the fluid is pushing behind them, my stomach is uncomfortable, if I put my arms by my side I feel they are being pushed outward as fluid is gathering everywhere.

 

I am afraid, maybe this is the end and I am taken, instead of drowning in asbestos fibres, I drowned in fluid as it crushes my lung from the outside as well as the inside.

 

As I awoke this morning I could feel this weight crushing down on me, my ribs are pained, my back is aching too.  Yes I went to see the back man last night and he hurt a lot when he did certain parts of my back.  On top of my meso driving me mad and my 'what's become normal' back I will have additional pain where he has manipulated my spine.

Yesterday I had a lovely surprise, the meso warriors around the world send me some sun flowers.

I was certainly surprised as I have had quite a few bouquets sent over the years, so thank you everyone, especially the secret flower club who make this possible.  They certainly did do their job and made me smile, but they also told me that they are there for me, the support of cyber friends to get you through the difficult times.

 

My GP called in to talk about my condition.  He has been my advocate over the last 5 or 6 years, sending me to specialists to see if they can do anything, from John Edwards to Paul Taylor in Manchester and Prof Fennell in Leicester.  We tried to work out a plan of action but until I see Dr P on Monday to find out what is on offer then we can't put much in place.  The water tablets were finally started yesterday afternoon and hopefully by tomorrow instead of me increasing in size I will be starting to decrease. 

 

The day we left for our hols I also received another surprise in the post, because I have been so ill I haven't mentioned it.  Although maybe I have, chemo brain does affect me that way!  Some time last year I befriended a writer in the USA, Nancy, she does lots of research writing about mesothelioma and to help me understand where she lives she packed up a box of magazines about Carolina together with a Durham Bulls baseball shirt and a drinking glass.  What a lovely thing to do for someone you don't know.  Nancy has a special place in my heart and if you want to find out facts about mesothelioma then I would suggest reading her postings here. 

 

Once I pull myself together this morning I will be taking additional morphine to get on top of the pain that is driving me to despair.  I certainly know one thing, I don't understand how my hubby can carry around his belly, the additional weight crushing your insides when you sleep etc.  It surely must cause damage to internal organs. He promised on holiday that he was going to do something about his, I truly hope he does and doesn't cop out now that we know my tummy isn't me getting fat it is all fluid!

 

I need to exercise today, at least on holiday I was walking everyday at least 5 miles, I doubt walking will get the fluid out but it may keep the legs from filling up and also ease the back a little.

 

Bear is still struggling with the heat, yesterday we bought more sprinklers and placed them on the lawn for Bear to go in and out of but he didn't bother.  Hubby held the hose over him and he backed away, which isn't him.  Maybe the thought of being damp and humid doesn't work well on his coat, after all Dogs seem to know what is best for themselves.

 

On that note I am going to try and fit into the shower cubicle!  Yes seriously my tummy is getting that big.

 

 

Nearly cried

Stepping out of the shower this morning I felt the anxiety of going nowhere overtake me.  I wanted to sob but wasn't able to because Bear bust my lip and sobbing stretched the bottom lip and broke it open, making it bleed.  See I can't even sob when I want to without something going wrong.

 

My stomach seems to have grown a little bit more again, Prof Murphy gave me a good examination last night.  My legs are holding some fluid, but not a lot.  My pericardium fluid he doesn't seem concerned about at the moment, which is a relief, and the best news was at the moment the amount would not stop me from flying.

 

He did mention the fluid in the right lung and the progression of the cancer, the ecg looks the same as before, no further damage and at the moment the excess fluid isn't attributed to the heart's right ventricle not working.  But we know where the fluid is coming from, meso has extended its nasty seeds and entered the abdomen.

 

I was going to go into work today but my eye's are playing up terribly, with glasses I can't see the screen very well, without I am squinting.  I doubt having an eye test at the moment would do much good because once the growth stops my eyes will change again, or at least they have in the past.

 

I can only hope something will come from my meeting with the oncologist on Monday, although I don't want chemo until September (mind that's a big hope as be may still refuse treatment) I don't want this big stomach.  If it grows daily maybe if they take it back to ground zero first then by the time I am on holiday it may not have extended too far, along with the help of some tablets.

 

So I am heading out into the garden, I have my back man tonight and I pray that he can at least fix that problem, one less thing on my mind and one less thing causing my poor body problems.

 

By the way, breathing is harder when you have this lump sticking out, whether it causes pressure because of its size or whether the fluid is inside too I don't know.  All I do know is deep breaths aren't something I want to do today.

 

A good piece of news though, Mavis has had good results on the Gem - carbo treatment, Tess has also had wonderful results on her alimta - carbo but I know many are out there struggling at this moment.  A dear meso circle friend is in hospital at the moment with the same thing I have, although I fear her condition is a lot worse than my own.  Please send thoughts out to Mrs Chris.

 

 

The Day after the Storm

After spending quite a long time on the RAMAC department, which actually is a good idea - you don't get admitted but are seen to and treated - we got the news.

 

The doctor did find out earlier I didn't have a Pulmonary embolism but wanted to make sure of his facts before he gave me the news.

 

The meso is the cause of my extended tummy, its called ascites which is fluid in the abdomen, also there is a new gathering of approx. 1 cm wide fluid between the heart and the heart sac and then the fluid that is in my right lung.  I really can feel that this morning, the thoughts of those terrible pains I went through are playing strong in the back of my memory.

 

I am now well and truly up the jungle without a paddle.  This stomach is not the way I envisaged my meso to go, yes I have been worried about it going there for a couple of months as I thought my stomach looked odd but thought and know are two separate things to deal with.  The conclusion to my ct report read

 

No evidence of pulmonary embolism.  There is however evidence of significant disease progression with increase in size and number of the intrapulmonary nodules, a pleural effusion and ascities. 

 

The doctor gave me a quick look at the scan and he measured the fluid around the pericardium for me as well as running up and down the lungs to show what was happening.  Although I personally didn't think the left lung looked any worse than the last scan I had seen, but I guess its the right now that is playing up.

 

The report was a summary rather than fully detailed so I have asked my gp to ask Dr Orr if he can do one of his revisions, after all he can only say No.  

 

What I also found interesting is my D-Dimer was raised, this is a blood test they carry out for PE's, maybe it could be used for meso?  Obviously it showed something was wrong and boy was it!

 

Well off to work for an hour, must sort that desk out and have just got an appointment through for my back man, tomorrow.  If I could get my back fixed then that's one problem down.  So annoying is that if my back had been ok these last months then I would have been healthy for most of the last 6 months! 

 

Hope the sun isn't wearing you all out, I wish I could stay in the garden and sit in it but as I don't know whether tomorrow I will feel better or worse I should go and tidy up what I left scattered around.

What a shock!

I went to the docs expecting a prescription instead I got one but sent for an X Ray.  I was going to put it off as I had left a lot of work on my desk prior to going to the doctors but thought oh well I'm out of the office may as well just go and get it done now.  Picked hubby up on the way and off we went to BA.

My little friend Jean was on, she usually does my scans for me, she was surprised I was there for an Xray and took me in.  Something she said after the Xray made me think I will be sat waiting, she said is your GP sorting it out Jan or are we.  Then she sent me back out and asked me to take a seat and wait. 

 

I have met Dr Orr once before, a long time ago when I had my drain insitu and instead of my fluid draining it built up.  He has read 99% of all my scans at Bishop and probably knows my insides better than I do.  He was waiting for me inside the room when Jean took me back inside.  I had fluid on the right side.  As I didn't realise it was Dr Orr at first I said but I do have new meso growth in there and these symptoms are like 2000.  He said I know you have new growth but this looks more like a pulmonary embolism than the meso.  He then ran the doctors who organised my admittance into Darlington.  I really just can't understand why I couldn't just be referred for an immediate scan (like on TV!) but the NHS doesn't always work A to B does it.  What made me worry more was the look on Jean's face.

 

We arrived on the ward and went through the hour worth of questions, it was to my amazement the nurse was the first student nurse who knew and could spell the word Mesothelioma.  For that I gave her a gold star.  Then 2 hours later a junior doctor arrived and went through the same questions. 

 

It was difficult to say what is going on because I have a cold, my back hurts, my stomach is extended, my chest pain could be the hernia or was it something else.  My heaviness does come and go.  The shortness of breath - it could have been the weather and also I did have one or two episodes on the cruise.  I was told that the scan wouldn't be done unless the bloods showed it would be required, but no bloods had been taken either.  After nearly 3 hours the blood was taken and I was informed it would take another 2 hours for the results.  Hubby left me for an hour to come and feed the dogs, I told him to have a break, he looked wrecked, and I felt tired by then, the heat on the ward was some 29 degrees and no breeze.  As I was no longer required I had a walk down to the small garden at the front and pulled my book out but the bee's soon sent me back to my room.

 

The head doctor came to visit around 6 ish and told me that my markers were high and all signs pointed to the embolism.  We went through a little of my history again and he said based on my ecg he would never normally let me leave a hospital ward but as I have history and he didn't know whether all what was reported was old he would let me come home.  We are always better at home than in hospital.  I had the injection in my stomach to help thin the blood then we were on our way.  Unfortunately I had to cancel my back appointment, I hope I can get that sorted sooner than later as once back at work on Monday it has gone crazy again.

 

I am due back at 11.30 for a scan and hopefully will not be readmitted but treated by a course of tablets or injections.  I did tell them I was concerned about my tummy too, maybe if there is fluid in the right lung I could be carrying fluid in the stomach.  I think my tummy did fall on deaf ears though. I know one thing, I don't think I am mentally strong enough to revisit the journey my body went through from October 2000 until August 2004.

 

This morning I woke up with a headache from hell, my vision is blurry, chest tight but no stitch on my right side when I breathe. 

 

Its funny really as this is the first time I have flown and not had any aches in my left calf!  Maybe that was an omen.  Usually you have aches when you have a PE, me I get them after every flight!

 

This means for the future I will never be able to fly and visit new found friends in Australia.  It is a country I would really love to see but living longer is more important I guess.  It always worries me when I hear Lou (Lou Williams - Meso Warrior) is flying somewhere.  I think the meso plays up rather than an embolism. 

 

To finish I am posting a picture of new friends met on the boat who come from the UK but now live in Brisbane and who knew Lou's name and follow her articles in the newspapers.



Ann, Ashley, Hubby & I, our last night
 

Morning nightmare!

I was hot yesterday, the last few days on the cruise I started having really bad sweats during the night, I blamed the aircon as I was also starting with a stuffy nose etc.  Yesterday was a long day at work and I came home exhausted.

 

Sitting at the desk hasn't done my back much good, the pain has moved down and to the left, although still putting pressure on the bladder etc.  My nose didn't stop running and by 8 last night I had the feeling I was no longer free of a cold.

 

At 5.30 this morning I woke up with that terrible pain in my chest region, either its fluid on the pericardium or my hernia is pumping bile right up and causing pain, but even worse my legs ached, I was covered in sweat and had a temperature.  I managed to cough up quite a lot off my chest (I could never had done that a couple of years ago).  For the chest pain I took some morphine as it wasn't easing and I couldn't get back to sleep.  The morphine seemed to make my stomach burn, I felt like all the symptoms of flu were starting.

 

Hubby got up at 6 as the sun wasn't allowing him to sleep, I tried to settle but the fight or flight adrenalin was starting up too.  I didn't want to get up because I felt so tired but in order to fight the fear and hopefully get the pain to move I too came down stairs.  Bear rushed to greet me then sat by my side and gave me those big brown eyes.  I had a mouthful of coffee, which didn't help, then hubby stood and gently rubbed my back, the movement alone wanted me to make me sleep.  After pacing around I knew I needed bed so climbed the stairs, blew my nose of the umpteenth time and climbed back under the sheet.  I heard hubby come up too and he laid down next to me, he knew I would start a breathing problem as I was going downhill fast.  He gently rubbed my back until I fell back asleep.

 

8.30 am and I feel a lot better, although my head is thick, my breathing is ok, my chest still hurts but nowhere as bad as it was.  I have booked an emergency appointment with the doctor, will also see about my extended swollen tummy while there too.  I can hear my own chest rattling when I am breathing so fear I have the start of a chest infection.  I think I will also ask him to listen to the right lung too as I feel I have something going on in their too, hope it isn't fluid as its sore at the bottom. The sooner I get something for it am sure I will feel much better.

 

Another long day ahead too at the office, then tonight I have an appointment with the back man Jason, lets hope this is the last one that I need and then my lower parts will work again without pressure pains and my back is back to normal.

 

Will keep you posted on the chest infection. I love life but when you wake feeling like this I start to worry about what it will be like when things get worse.  The fear of not being able to cope with the condition and the additional pain makes me want to give up sometimes.  I don't think I can go through everything I went through before, I'm not strong enough to cope with the pain, the constant fluid in my back, the sweats etc.  I was 42 when thing started getting really bad, I'm nearly 53.  I remember when I thought it was endo and told hubby I didn't think I would be able to stand the pain in my 60's if this was going to keep happening every 3 months, now I don't think I could take it in my 50's.

 

Meanwhile I hope everyone is enjoying the sun, even though it is hard to do anything in such heat.  We aren't use to working in such temperatures and everything becomes hard work!

 

Home Is Where The Heart Is

I have been giving quick updates along the cruise of where we went and how I felt.  It is the first time we have come home to nice weather and am I grateful, even though I am full of cold.

 

Unfortunately while away the news of new people being diagnosed is still happening, of course I still logged onto face book when I could, not that our signal was great.  If in a hotel you are fine, when on a floating hotel - well its just unstable.

 

Trying to email wasn't easy and my ipad isn't my favourite of typing tools, how people think we could go from computers or laptops to these little tablets is beyond me.

 

My stomach I am sure is not down to food intake, although I now weigh 10 stone, (140 lbs) I can't understand how.  I ate no sweets, little food, no bread or potato and still this stomach is increasing.  I half wonder whether the docs would be honest and say if  I was carrying fluid in my abdomen.  I even went to see a personal trainer for a session.  My God, he was tough, and I realised how unfit I have become.  I used to go to the gym regularly, in fact the summer I was diagnosed I was at the gym 3 mornings a week at least.  I have to say that I did need the weight on my whole body, which has filled back out nicely but my tummy could be the size of hubby's!

 

Which reminds me, he has agreed to try and lose that stomach too, although he doesn't stop eating until he is full!

 

We have seen some beautiful places on this cruise, Croatia is a place I would love to revisit.  Ok we weren't the tourists that go chasing around looking at museums or relics but each day we did get off the boat, apart from Igoumenitsa, we visited this before - so stayed on the boat.

 

The first couple of days I honestly was a bear with a bad head, those smoking tablets seemed to take ages to get out of my system, then with my back etc but we settled into the routine of getting up, showering, breakfast, a good walk, back to the boat and an afternoon on deck for some sun.  Some days we stayed out till 6 and ate late other times went down about 5.30.  We didn't clock watch once we got into the swing of things.

 

For us with meso I honestly think cruising is the way to go, we see different places without having to pack and unpack, food is plentiful and full of choice, plenty of help if needed and a doctor always on board.  Although our snags were air conditioning that we couldn't turn off.  My throat was dry every morning and I did have one breathing panic attack.

 

My ribs certainly felt the benefit of the heat, those bones were so well behaved but I fear the right side of my lung is starting to feel the growth of the meso or rather my brain has realised I have meso in the right side.  I did suffer some odd pains and some nipping sensations.  It made me worry about next year as I really want to do this again in 2014, not just for me but hopefully meet up with those we have cruised with before.  Its a great way to holiday with people who you don't know as you don't need to spend time with each other every day or night. 

 

We did meet some fab people again but also some that were quite rude.  Hubby and I always smile and say good morning to each and every person, some just looked right through you.  There were a couple on board that were always bragging about what they had and what they spent, I noticed this annoyed quite a few others.  When I was asked about them I just said if they need to brag then they are trying too hard.  This time we made friends with two ex pats, Ann and Ashley who both had heard of our Lou and thought Bernie Banton the best thing that could happen in the world of Asbestos and lawyers. 

It was so hot but couldn't dip my feet

Managed to dip my toes at this resort

A red hot day again
 



We also met a couple of Australians from Melbourne, it turns out one was an ex heavy weight boxer and now an attorney, Bernie the Attorney is his nick name.  What a wonderful story teller he was.  Each afternoon we would pop up to the top deck and chat with hubby and I about boxing and of course, being men, the cricket and rugby!

 

I am waiting to here back from the back guy, hopefully I will see him Tuesday night and finish off the treatment he started.  My leg still has some white noise and the pressure on my bladder and bowel still needs fixing.  So busy times ahead, can't believe it but in another 7 weeks we will be doing it all again.  I wish we could do a cruise once every 3 months but once September is over I guess the med isn't the place to cruise around and I can't fly any further.  Which reminds me, I have got that heaviness in my chest again on a morning, not nice but it was there throughout the holiday.

 

I know I shouldn't complain, I'm alive and able to do these things, on a different note my Mother In Law isn't getting anywhere with her diagnosis.  The hospital in Hull have totally screwed it up, sent her to see a dermatologist instead of an oncologist!!!  Her CT Scan results haven't been issued to the right person, she isn't sure whether she has a cyst on the ovary or cancer.  Fancy they called her in and told her she had cancer, she was on her own at the time, now they are messing her around.  I have told her to keep records of everything as I will be writing a letter of complaint.  I think I mentioned at someone asked about meso and hubby shut the conversation down, I truly wish he would wake up to cancer and talk about it.  If his mother does have it then things will change, she will talk to him about it everyday.  I find it difficult to have a conversation with him once every three months!

 

My heart at the moment is with Lou in Oz, her results haven't come back great and chances of further treatment don't look good.  Lou and I are in a similar position, although Lou had peritoneal meso first. 

 

I have been out of touch with Action Day but I do hope plenty of people attended the get togethers and found information given helpful in their own fight against mesothelioma.  I was slightly hurt that only 12 books were purchased from Gateshead's Day, as I was told not many people like vampires, maybe I should have described the book in a different way and the vampire side of things is just a organisation hunting down naughty people!  Anyway I guess it still puts something into the research box, just not a lot. 

 

I promised Michael and Margaret, a couple of Brits who were friends with Bernie and crowd, that I would take the 911 out as soon as I got home.  So if you read this you two,  I took it for a spin today then came back and washed it, it is now a gleaming red again instead of white\black and hints of red.  Yes the birds around our drive are naughty!  Bear came to investigate so ended up under the hosepipe too, he usually enjoys being soaked but today we just stood and looked at me with those big eyes and asked why are you doing this?

 

On that note, time to end this extremely long blog.  I guess I have missed writing my thoughts.  Its back to work tomorrow, something I am not relishing the thought of.  I haven't sat for a long period in a chair so hopefully my back doesn't go back over.  Michael has had surgery on his, I doubt I would want to go through that.

 

One last note, I have a friend in the meso circle who's father has Sarcomatoid type, if anyone reading this has experience with this type of meso can you please email me at jan@jansjourney.co.uk and let me know whatever you can so I can forward the info.  Thank you on her behalf.

 

 

 

 

Venice Our last day

Hard to believe the Cruise has pulled into the last port of call, tonight we will be packing and having our last meal aboard Spirit.

After such strange weather yesterday we had an early night, clear skies when we left the deck and came to our balcony for a nightcap.  At 12.30 am we hit the most beautiful storm out to sea, it seemed we sailed into it for some 2 hours.  The swell of the sea churning against the ship, the sky flashing white every few seconds.  We laid I. Bed and watched the sea Gods do battle outside our portholes.

This morning I have woke with a raging sore throat, maybe I shouldn't have watched those magical events happen during the early hours.

We are going to explore Venice today then pack, seems strange to have to think about leaving or even packing.  I most admit can't wait to see the dogs, missing them.

Thursday -Ravenna

It's nearly 8 am and have pulled up to Ravenna.  Last night we had dinner with a lovely couple of ex pats who now live in Brisbane.  As we were chatting over dinner Ann asked if the reason I didn't dive into freezing water, ie the pool, was because I has a lung problem.  When I told her what it was both of them started telling me how wonderful Bernie had worked to get meso out there in Australia.  Ann asked if she could ask a question on meso and hubby said no, I looked at him with those narrowed eyes and said yes, then explained he won't hold any conversation regarding it.  So her husband and I discussed meso while Ann kept hubby occupied!

But this shows how hard it is for both parties, without my blog to have poured my ups and downs too for the last 5 years and my meso circle because of it, I would have gone mad.  Now
I have Facebook too, but still sometimes it's good to open up with some one else who knows about the cancer or asbestos.

I was also a little unfair on hubby last night too, I did mention his midrift more than a few times, but it is a focus of my anger.  He wasn't too good either, after dinner he felt like something was stuck in his throat and had to come to the room, only to be sick.  Of all the nights as it was desserts under the sky and dance music.  Then he does his martyr thing 'you don't need to come with me' what else does he expect me to do?  Although I have known him go back out when I've come back to the room.

I have watched some characters on this boat, mainly the Brits if they think they have more than you they are bragging if they think you may have more than them they blank you.  Have never known this on a cruise before but maybe because there are less Americans on this one.

Yesterday at Opatija was a beautiful place.  I think we walked a good two hours along the promenade , lidos were dotted here and there.  The resort has some of the oldest hotels but they looked really nice.  It was so hot then about 3 pm we had a thunderstorm, it was lovely to watch it out at sea.

Guess that's me and my writing today, leg is still funny although my back no longer has acute pain, the heart area first thing is extremely heavy and pressure still on my bladder etc, but otherwise fighting fit!

I was so pleased to read that Tess has had good news on chemo, so many people are receiving bad news, it's nice to read some good.

Hope the sun and heat is still in the Uk

Monday Day 7 -At Sea

My body has given me a run for its money this last few days, we always say what a difference 24 hours makes and it does.  I must admit my mood of Friday has lifted and am getting back up from that well of darkness that sometimes consumes us.  Funny how those days can also make us just pick out the things our partners do that annoy us.

For my sins today I am going to see the fitness guy, I made the appointment when I was angry with hubby for allowing his stomach to beat any 9month pregnant woman, hoping he would get the hint and join me.  He has since told me he is going to try the rowing machine and hope he loses weight.  I still hoped he would come, he needs more than 20 minutes a day on that if he wants to make a dent in his big belly!

My back or my chest are vying for the number one spot of spoiling my holiday again, if one stops aching the other starts, it is an uphill battle with pain, no wonder we get so low.

On a bright note Ian had surgery 4 weeks ago and is out and about playing football with his step sons.  To me that is amazing as at 4 weeks I had just had the last drain removed.

I had an interlude and having spent an hour with the fitness guy who put me through stretches then managed to sell me some muscle relax bath salts making my bill some $330 spent the day on the deck.  Yes I still ache and have probably found new places for my poor body to suffer.  The time is now late afternoon and I fear I also have a touch of sunburn.  The weather on deck has been quite overcast, although warm, and of course we are moving, making you not notice how hot your skin is getting.  We were both out without full sunscreen on, only covering my scar and radiated spots.  My frost bitten skin mark looks whiter than ever against the rest of my body.

Tomorrow we arrive at Hvar, hopefully here we will finally go to a beach and feel the sand beneath our feet and paddle in the sea.  I hear the weather has finally broke and the UK has finally felt the heat of the sun.

With meso I find mornings are the worst and it takes me a while to feel human, I often think I feel better when I am away but these last few days have shattered that dream.  I feel just as ill here as I do waking up at home.

On that note I had better rest this aching body, but I leave you with a question how do we make the most of our life?

On the boat day 4

I can't decide what my body is up to at the moment, if my back isn't causing some problem then my meso is.  After a lovely evening having dinner at the Captains table, we hit rocky waters.  Coming back to the room was a real laugh, although totally sober my heels made it near impossible to stay upright along the passageways.  I had the night sweats and woke this morning with crushing heart pains, instead of waiting to see if they would go I thought I'd take some morphine but as I sat up the taste of bile rose.  Not sure if the pain is my hernia or the meso on the pericardium so I didn't take any.  Will see how the day goes.

The heat has been great, and after asking around prior to leaving, for the first time in years I actually went in the jacuzzi with the bubbles on, wow did it make my legs feel good as well as my back.  Am still concerned about the size of my tummy, shame I couldn't blast that away!

Not sure either whether those smoking tablets are out of my system, have felt really low and wishing I had my own space well away from hubby.  Nothing he is doing is right in my eyes at the moment.  His oversized belly seems to have doubled in size, the way he stands and pushes it out makes me cringe and then when eating its like he's shovelling food down his throat.  Why do tablets take so long to get out of the system or is this how I feel!

On a good note Mavis together with Debbie's daughter spoke about living with meso at the Houses of Parliament on the 2nd, I was honoured to be asked too but the holiday was already booked.  Although I maybe one of the longest survivors on British Soil, my input wouldn't have been much different to theirs, we just have to hope the people receiving the presentation can truly understand how difficult living with this cancer is.  The fact that we not only fight meso but have to fight the system to for treatments.

We have docked today at Brindisi, a commercial port in Italy.  Last time I docked here was when I was travelling home from Rhodes back in my 20's.  Yesterday we spent in Dubrovnik, my imagine ran wild in this perfect medieval city, if I closed my eyes I could just see the White Queen type life style running through the streets.

So it's time for breakfast if we can get ourselves pulled around.  I think it will be a walk around the town then on the deck to sunbathe.