Chest Infection

This week has been full of lows for many in our community, a close meso friend is sitting by the bedside of her husband not sure whether he will pull through an infection in his chest and to find that in two short weeks his meso has grown faster than in 3 years.  My heart is breaking for her and knowing all I and many others can do is send comforting words feels rather weak.

On top of that Mavis received bad news that the meso decided to stop responding to treatment and Steve is Oz thought his days were numbered but thankfully his oncologist has come up with an new plan, something different but still with chemo.  This disease can change from one day to the next and we keep forgetting that.  I more than many others have procrastinated my life, always believing there will be a tomorrow.  I have never known my own demise come so fast, weight is dropping even though I am drinking proteins drinks, eating crisps, milk, chocolate, rubbish as well as roast dinners, veg.

I had a phone call on Tuesday asking me to go in for chemo that afternoon, I had to turn it down as my dear friends from my meso circle were making a long journey North just to visit for a couple of hours.  They offered me then to go into hospital for the night and have the tablet Wednesday morning then came back and asked me to go in Thursday at 2 which was perfect.  They then rang this morning and asked me to go today but I told them I had cold and it was my final day on antibiotics so we agreed to leave it till tomorrow.

My wonderful Macmillan Nurse, Shirley, arrived and I was having a coughing fit.  I hadn't been worried about it being a full on chest infection because the phlegm was white and fluffy, no longer, heavy dark green that is obviously sitting low in my lungs.  Without any messing around she told me straight that having chemo could be detrimental to my health, leaving me in hospital fighting for my life.  As it was I was fighting to get this up, in fact had been since last night.

I rang the oncologists secretary for her to cancel as I have no idea who to contact at Freemans.  So am disappointed but then my Doc called and gave me a new prescription to attack the infection together with some tablets to make the mucus thinner and easier to expel.  He said it was the right decision, also when I got there  tomorrow they would probably send me home anyway.  So saved a journey for nothing.

I will post some pictures when I am on the computer of Barry and Heather, unfortunately Bear would not pose nicely for pics yesterday, and was quite unsocialable.

I had zero energy yesterday after going for the scan at the Rvi.  I was shocked how poor my breathing was just walking from the car to the XRay department, thoughts of wheelchairs are now in our minds, maybe just to help out until the chemo kills the meso.

Gary cooked a Full Sunday dinner for us yesterday, I hope that both Barry and Heather liked the soft veg, Gary and I are terrible for soft food.  The afternoon was delightful and boy did the time fly, at least they arrived home safely and it was great catching up, although I did feel guilty not playing a good hostess.

Today has been busy too, after the doc my best friend Lorraine called then Joyce came over, I have never talked so much as I have these last few days.  I had planned on going to healing but after having such a bad coughing fit this was ruled out, going from a warm house to a cold car then to a cold church would surely cause more.  I am disappointed that I missed it but hopefully next week I will attend it.

For a change Gary has made pork ribs in a salt and spice marinate , they smell delicious hopefully won't be too hot to handle.  On that note I am closing my blog.  I would ask that you all take a moment and ask for healing for everyone who is suffering, that one thought can help someone somewhere. And then also ask the angels to send to someone you care for.  My healing requests are for those above plus the rest of my meso circle.

My Meso Friend

Dear Friend

It has been a while since I wrote to you and told you what I thought it seems that you took no notice of the plea I made.

You still dominate my life and that of many, you changed our life to a normal that shouldn't be lived and everyday you seem to grow within the community of the human race.  You don't seem to hear that we don't want you within our circle of life, we hate the mention of your name and still fear the destruction you can do.

I have lost so many wonderful friends to the evil of your ways, even now your tentacles are reaching out and draining the life of many around, slyly sending your nasty cells out into our bodies, taking our life from within.

You have created death from a fibre of your being, you give no notice to those that you invade.  Your very existence was mined from the earth, a place where given the chance I would put you back, but deeper into the crust of the earth.

How do we destroy you Mesothelioma, I've been fighting you for years, my friends around the world have united in the war, we are Meso Warriors and each day we martyr another you have taken, but one day and one day soon you will be taken from the human body and shown for what you are.

Your killer cells will be starved from our bodies, your growth stumped in our lungs, your lumps stripped from our organs, one day we will be free but until then we have to hope we can last and keep taking each day with hope.

I end my letter to you, begging you to release us from your grip.  I don't want to lose my battle nor lose the friends that I have made.  Please let us find what makes you tick so we don't need to keep on fighting but can live our life in peace.  I don't want to die on the battlefield with my fellow warriors by my side, we want to have victory and be set free from your hold.

I have wrote this on behalf of those we have lost so far this year, to Ian who died this morning with his family by his side, to the Warriors who have had bad news that treatment hasn't worked, to those who have waited for trials only to find them closed.  We are united by a cancer that absorbs our lives, it takes courage from our loved ones to care for us and to know that all the efforts will still lead to them losing the person they love.  

Our lives and our families lives changed the day we were given our diagnosis, the many hours sat in hospitals, the stress of sitting outside operating theatres worrying in case we don't come through.  The trials that many try and face the unknown and sometimes an earlier death. The trauma of chemotherapy and the waiting for results.  Our loved ones may not suffer the physical pain but they suffer untold emotional pain.  They support us but who supports them?  Mesothelioma is a terrible cancer, one day we have hope then the next it is robbed.  We try to live for today but it isn't always possible, sometimes we forget we have this terrible cancer then it catches us unaware.  Always in our life, always in our thoughts.

Bloody Cold

When you have mesothelioma the worst thing you can have is cold or flu.  This can lead to so many other complications but the main one - breathing.

 

I started antibiotics the first morning I started and although day 3 and still feeling poorly I would hate to think I hadn't started a course.  From coughing my ribs hurt, I have a constant pain in my left lung, I can't cough up all the mucus in my chest which leads me to do a kind of chicken flapping wing dance standing still.

 

The regime also includes day nurse and night nurse capsules, anything to keep the cold at bay.  I have a rotten headache as well as sore throat and my tongue is even on fire.  Gosh I can't remember colds being like this, in fact I used to probably get one a year if that, and then would never be off work with it.  I guess the rampage of meso has taken its toll and now the smallest germ can set me back. 

 

I met a new consultant yesterday, she is a palliative care doctor who works with the MacMillan team 2 days a week.  What a lovely lady she was too.  She is going to try and sort my bile\stomach problem first then work up to other bits that are making my life miserable.  It would be great to get rid of the bile problem or at least help make it not feel so rotten.  Will still be using many of the tablets I have tried in the past but in different orders.  Fingers crossed this works, if I could just wake up better then the day would start earlier and I would have more enjoyment.  One of the things she did tell me, which I thought was sweet, if she had read the full report on my status before meeting me she would have expected to find me bedridden, instead she met someone sitting on a sofa with a clear mind and a good understanding of my own body.  She also thought the pain I have after passing water could be something to do with the meso in the membrane around the bladder.  I hope not.  I think I need a biology lesson again to work out where the bladder actually is.  After all this pain didn't start to recently, unless its the drain pressing on a nerve or the bladder.

 

My scan is booked for Monday at the RVI so hopefully that will show more information on what is happening around the body.  Although I can only hope we get a good explanation.  Not all doctors like to tell you everything that is happening.

 

The sad news about Mavis' 4th line chemo has rocked the meso society.  After having good results with the first 3 doses the meso decided it would fight back and has managed to carry on growing through the final 3.  This isn't the news any of us want to hear.  I remember reading how well Steve had done on a trial drug and managed 3 years of stability, yet his drug never came out into the market  Mavis was on gemcitabine this time, which is used in Australia, and has good results.  It seems Mr Nasty won't give up for Mavis and I just can't understand why.  In the older generation meso tends to co-operate a little better.  For Mavis she has never really had any Inactive Stable time, or nothing like a couple of years. 

 

I did an interview for BLF in That's Life magazine, it is due out 4th November, I just hope they covered mesothelioma well and let it be known the dangers of working with or around asbestos.  The campaign is starting in earnest for Take 5 to Stay Alive.  No it isn't vitamins its about where asbestos could be and what to watch out for.

 

Finally we are changing our large Silver radiator in the kitchen, it has never worked since we had the new extension built, and as the room is virtually a glass house in the winter it is freezing cold.  Gary is thinking about turning it into a water feature for the Garden.  Yeah I think that will be a long time coming!

But hopefully today we will have a plain and simple one that does the job.  Heat is more important than looks!

Time to get moving, the day I think will be spent feeling sorry for myself but maybe I might read, try and keep my mind off mesothelioma.

 

 

 

I've Got Cold

I had a sore throat a couple of nights but thought I had managed to dodge it becoming anything else.  How wrong was I, yesterday I started sniffing and then during the night I was coughing, ears aching and itchy, throat razor sharp.  I can't believe it, I have stayed away from work, meeting people etc.  My poor District Nurse is to blame for my bugs, coming last week with a sore throat on Monday then poor thing was full of cold on Thursday.  I didn't spend any time near her, well breathing close to her, she obviously was in my space as she had to clean the drain hole.

 

I emailed the doctors to ask if I should start some Amoxicillin (handy I have some in the cupboard) and I got the go ahead.  I will also be starting steroids to help with my breathing. 

 

My Macmillan nurse came today to and we spoke in length about the problems I am having breathing when I climb the stairs.  Hard to believe in August I could do these without a problem, now I have to stop and start 3 times before reaching the top then am still breathing hard.  Oramorph apparently works well for this, so will try tonight.  We finally got an Oxygen register to work, it took several attempts for it to register, my fingers must have been cold, but while I was sitting my stats were at 95.  They were 98 in September when I had my drain fitted, we both wonder if I still have fluid in my lungs, and then this cold isn't going to help either.  Although 95 isn't bad, I have been a lot lower, I am usually around the 98 or 99.

Have taken a quick snap shot of my new fashion accessory, my patch that will be with me forever.

I am pleased I am starting to get a little flabby as the skin doesn't have to keep stretching when the fluid is present.

 

Bear was desperate for me to tickle his tummy and I couldn't resist, it was worth being breathless for, just that bonding time you have when you tickle him and his tail wags constantly.  Although I had stopped to take this picture.  He is such a darling, all the nurses love him.

 

Lexi in the meantime was sitting pining for her dad to come back, he had gone into my work to pick up some more paperwork.  I have plenty to do tomorrow, I have done a little today but not enough due to visitors.  Now as time is ticking on my energy is zapped.

The blue sky was certainly a welcome today, looking out onto the garden and seeing sun certainly lifted my mood.  The doors and windows have been open letting in lots of fresh air, only problem is the flies are still around and always manage to find their way inside!

 

I was asked a couple of weeks ago to write an article for Mesotheliomahelp on cyber friendship amongst the meso circle.  I have many friends who I have never met, many are carers but quite a few are other meso sufferers.  Lou has travelled a similar journey to me and although we only became meso mates a couple of years ago I wrote about our friendship.  You can find the article here.

 

My appointment for the CT Scan requested by Dr Hughes has been organised for Monday at the RVI.  Gary is going to love this as we will be stuck in the middle of Newcastle at Rush Hour!  Dear Lord, I'll tell him tonight after he's eaten a nice meal!

 

We have been watching Tom's Pub Grub and decided to try his short ribs.  Gary ordered the ribs last week from the butcher.  Yesterday he picked them up and we covered them in the herbs required.  Today we mixed the BBQ sauce and at the moment they are cooking ever so slowly in the oven, I have a feeling they won't be ready for tonight's dinner but the smell is divine when you walk into the kitchen.  I will let you know how they taste!

 

Time to take a rest, we have a few hours of Outback Truckers to watch, an excellent program on wagons travelling the long roads in Australia.  This is certainly giving us a view of the scenery our friends across the ocean enjoy.  Australia is still on my bucket list, I wish now I hadn't procrastinated on so many things, this being one of them as the flight there is out of the question.  A bit too far to take a boat there and back!!

 

To my fellow meso mates keep your chins up, every one says you must stay positive but this isn't always possible but we do know that having a positive outlook can influence our health.  I know I have been down in the dumps these last few months, the changes my meso has gone through and the new normal I am becoming accustomed too has been hard but for me I think I may be over that hump, just hope the cold doesn't linger.  If you are feeling down think of tomorrow being a better day, one day it will be.

 

Thanks to everyone for the support you have given me and I hope in some small way I have helped you understand the difficulties we face, the longer we survive and fight the harder the battle sometimes, but in the end living is worth it.

 

 

History

Gosh this rain is making me depressed!  When will it ever end, shame it can't fall on Australia and help put those raging fires out that are eating up the landscape taking homes and killing animals and vegetation.

 

Nine years ago Gary and I were in Dubai, I had just finished radiotherapy and we were getting used to the idea that I may be dead by the next summer.  Remember Alimta still wasn't given out then.

 

We returned to Dubai the following October, and this is from then, how healthy I looked, a year on from radiotherapy and 6 months after chemo.

I wish I was that same weight right now, could do with the meat on my bones that's for sure.

 

I had an email yesterday from a lady in South Africa who has mesothelioma.  I have never thought of South Africa as a country to be affected by this terrible cancer but how wrong was I.  It seems many mines were opened in the Cape area.  I will have to start doing some research about SA as it took me by surprise to hear this.

 

We are all bonded together in a world fighting a killer cancer that governments insist is rare and will blow over.  I doubt mesothelioma will ever blow over until asbestos is removed and buried deep back where it came from, never to be unearthed again.

 

I recently judged a scholarship for Mesotheliomahelp.net.  Many of the essays were from students who had never heard of mesothelioma although several had heard of asbestos through lawyers advertising their services.

 

I hope that the new found knowledge they researched will help them avoid the substance and keep not only them but their families and friends safe.  I also noted only one lung doctor student submitted an essay, I was quite disappointed.  I was also saddened that many had copied websites word for word instead of learning about the disease themselves.  Oh well, as long as the word gets out that asbestos can cause lung disease it helps.

So many warriors seem to battle treatments over these winter months, two thoughts here, one is they will be healthy for summer, the other of course is winter is the darkest gloomiest months and does nothing to lift spirits, but to all those who are currently on treatment my heart goes out to you.  The battle is hard but the results are worth it.  Some of us may only be buying a short period of time as the effects of chemo the first time work the best and can last for years depending on when the cancer was caught, as we use more chemo the less effective it becomes.  This is why we need more treatments and a variety at that.  I hope that gene therapy will become the market leader in stopping those with the cancer and the vaccine can prevent the growth of cancer.  These are the miracles we are waiting for, please just happen soon.

On such a note I am going to close the blog as I need to drain.  I am also going back to see my physio today, hopefully he doesn't overwork my already aching back muscles! 

To my fellow bloggers thank you sharing your thoughts, dreams and journeys, between us all I think we give a rounded view of what mesothelioma is like to live with. 

Ever decreasing circle

When will it stop raining for goodness sake.  I am sure the grey sky does nothing to help us and of course it blackens our moods which in turn doesn't do anything for us.

 

My body is starting to worry me, I even asked Gary if I ever felt well this year because I feel like I am always crap.  I know if a blue sky appeared this would help lift my spirits but I doubt it would do much for the way my insides are working at present.

 

Last night Gary woke me from another nightmare, in this one, which I don't normally remember, I was sleeping in a tent and I couldn't sit up, I wasn't able to breathe and Gary was holding me down so I couldn't move.  I was trying to shout out and realised he was prodding me to wake me up.  I woke up breathless, gasping for air.  Why such a dream I'll never know but in them I can't shout out, this is what worries me about towards the end, what if I am in a nightmare and he can't wake me up because I am so drugged?

 

Then at 4.30 I woke with a shooting pain in my shoulder, I had put my arm above my head and slept like that for an hour or more, the moment I moved it the pain had woken me.  Deep heat didn't work after the first application and I lay in pain, not breathing deeply as each inhale sent the pain through it, I had to take morphine to get on top of it and another application of deep heat.  The last I looked at the clock was 5.45 and the pain was just starting to ease. 

 

At 9.00 Gary came to wake me, I was so sound asleep, but the moment I opened my eyes and moved my stomach felt sick.  That heavy burning pain that is caused by the bile that had gathered and was sitting in my stomach and up my oesophagus.  Why can't something just be nice for a change and at least let me have a morning where I wake up feeling good.

 

Needless to say this threw my morning out, the nurse was due to change my dressing and by 11.00 she still hadn't arrived but even worse I still hadn't showered. 

 

My breathlessness is becoming more apparent too, what with that, being so thin and no appetite I do worry that my body isn't as fit as it was and maybe chemo will go against me instead of helping me combat this nasty cancer that is currently ruling my existence.  I have pains around the ribs, left pelvic area, right back, kidney areas and other that must all be associated with mesothelioma.  Last November when I had chemo I was fit, I knew the meso was growing but it was controllable, will chemo bring it back under control - but I need to be fitter for it to work.  Is it an ever decreasing circle that we get into and one that once half way in we can't get back up on top. 

 

Mavis is suffering new pains and I can understand her concerns too, so many warriors are out there fighting this cancer, a cancer that should not be ours to bear.  I keep apologising to Gary about being ill but I have nothing to be sorry for, I didn't do this to me, those who knew the dangers of asbestos did this to so many of us.

 

I need to have another CT Scan before I start Chemo, I had a phone call this morning from Dr Hughes secretary.  I hope I can do it without my arms above my head otherwise I will be suffering once again!

 

On Saturday night we had the most fantastic lightening show then yesterday rain that seemed to keep coming all day until we had a break and a beautiful rainbow fell across the garden.

 

One side through one window and the tail end through another window in the lounge. It was spectacular and I wish there was a pot of gold at the end of the it, but my wish would be a cure for mesothelioma.

I haven't been grooming Bear everyday as it takes so much out of me and I think he wanted to demonstrate the other day how tatty he is getting.

Wish he would stay like this and let me get at his undercoat!  As he has grown older he seems to spend more time in the house than outside these days.  We have started keeping the living room window open a little as well on a night so he gets a cool breeze, problem is we freeze!

 

I was planning on working today but its 3pm and I am just starting to feel human, another wasted day feeling crap. 

 

Tomorrow we are going to try a new routine, drain before I get out of bed and also take my omeprazole then before trying to get up and come down.  My morning coffee usually meant two to three cups to wake up, these days I can hardly manage half a cup.  I used to think it washed away the bile but now it makes me feel sick.  Maybe I sit too long whereas when I was going into the office I was more mobile.  I would give anything to be as healthy as I was in June and July, even in August although I was full of fluid I felt better than this.

 

I need to do a thousand things too, I must write the info for the back of The Vail of Darkness, I have the final 20 essays to put down to 10 and in my order before Wednesday and that's without doing the work I can access from home.  My eyes are playing up too, one minute I can read the computer screen perfectly well, the next I am squinting, pointless getting my eyes tested as they change from hour to hour, all down to the cancer or side effect of what the cancer is robbing my body of.

 

Guess I have spilt my thoughts out again, I just hope my fellow meso warriors aren't having such a grey time of things.  Treatments can be harsh on our bodies, recovery from surgery a long journey but it is worth it not to have to suffer the cancer.  I am concerned I have waited too long for chemo, maybe I have passed that point of no return but until I try fighting again I'll not know. 

 

My other concern is if I start chemo and I am ill with no benefit have I used up the last few months of what could have a little bit of quality to having no quality at all?  Questions we have no answers too unless we try.

 

It would be great if our individual cancer could be tested against the chemo drugs before we start to see what effect it did have but in a test tube is so different to in the body itself.  I know that progress is being made on the new virus treatments and gene therapies that are being studied but will they be out in time for people like us who are here at this moment in time.  The ever decreasing circle needs to expand to give us hope and time. 

 

We don't need to be told we are dying, we need to be told we can help maintain life, and as I have clocked up 9 years since diagnosis I still need to hear this.  How many times have I been told I should concentrate on quality rather than quantity but to have quality you need treatment, but we need hope too.  So many have died for no reason, so many turned away from oncologists who don't believe in prolonging someone's life.  I'm not ready to give up just hope my body isn't either.

 

Good luck to you all out there fighting, to those in remission I hope and pray it lasts for years, those debating over treatment, don't waste time, get it sorted- once meso is in control then you have joined the ever decreasing circle.

 

Chemotherapy the way forward

This day couldn't have come soon enough, up, showered, hair washed, dressed and looking good.  My  morning routine is coming back, albeit slowly as we drain now before I shower apart from District Nurse day.

We set off for the Bobby Robson Cancer Clinic at 10.45, giving us time for traffic hold ups on the a1m.  My 2nd grip out in gosh I can't remember when!  I was nervous, too many what ifs in my brain to settle.  Our appointment was noon, but we arrived a good 30. Minutes early, we just waited in the waiting area, no cup of tea just both of us in our own thoughts.  Running late Dr Hughes called my name and off we went to the consulting room.  I was quite surprised at the thickness of my file at Newcastle because I have only had radiotherapy here prior.

His sentiments were sincere when he said mI don't know whether it is nice to see you again, we both knew I wouldn't be there if the cancer had behaved itself.  We were straight down to business's, he doesn't need my history as I first met Dr Hughes when I was first diagnosed, he was running the trial for Alimta and Carbo back from 99 to 2004, my oncologist from James Cook, Dr Storey, had sent me to see him because I was so young and wanted him to recheck the histology of my tumours.  I didn't meet Dr Hughes again until 2007 when I had Alimta the second time and he stayed as my oncologist until he gave up his private practice in 2011.

We talked about the spread to my abdomen and he told me that I am still a rare person, always been different to other mesothelioma patients and with me to expect the unexpected at every turn.  He said that living this long it is difficult to determine what the cancer will do next, he also thinks due to the weak diaphragm my meso came from the left lung and is the same strain.

I answered his questions about how much fluid was drained daily, if I felt ill etc, although I didn't tell him everything that is going, the problems with my toilet issues or the fluid that has appeared in my left foot.  He talked about Vinerolbene and how back when Alimta was being trailed this Chemo was on trial in another study vs supportive care but not many people entered the trial due to the Alimta one taking place.  He also believes vinerolbene has a place for fighting mesothelioma.

The surprise was evident that such a low dose of alimta last November had done so much damage to the mesothelioma that he said we would go in low again.  After all I looked so healthy in 04 that the side effects experienced by Alimta had shocked him, he thought it would be a walk in the park for me, instead he told me I was the illest person he had ever had when put on chemo.  Then when he did it again in 07 and nearly killed me he thought never gain.

I was weighted, I prefer old money, so was 8.12, not bad as I look a lot thinner although my height has lost an inch and a half, I'm now 5'7".  Bloods taken and consent note done, I will receive an appointment for my first chemo in the post, he expects it to be the week after next.

Home for lunch, late lunch then off to see Jason.  He couldn't believe how much weight I have lost since he last saw me.  He manipulated my back then worked on my shoulder.

I peed without pain last night, so happy but will have to see how this goes.  My back is extremely sore this morning, one muscle is agony so need to be careful sitting back.

I am shattered today, I had planned on a baking day but so far I have only managed to drain, it's noon and I still haven't showered.  I feel like I want to curl up on the sofa and sleep, maybe that's a good thing as my body must be telling me something!

I am worried about starting treatment again, what if I am really ill and I do lose what little quality I do have for the chemo not to work?  I know this chemo didn't help my friend Danny, but I do know it is helping 2 others at the moment.  Our minds are never free of the worry which cancer brings.  Are we doing the right thing?  Should we just stop treatments?  How long is that piece of string?  My quality won't improve u til I get the cancer under control, will the chemo manage this, it is a risk, one that many take every day of their lives.

I need energy, that is one thing I can't seem to get.  I need weight on, which in turn will help stop the breathlessness, I need to eat but my body/brain seems to be anti food at the moment!  How do you force yourself to eat when you just can't eat much?  My friend Leslie became like this, it started 3 months before she died, I really don't want to die!

I know in my heart I have these days and they do pass but I always worry in case they don't.  I want to be brighter and energetic not a couch potato with the energy of a slug.  On this cheery note I will close here.  A day of gathering strength and relaxing seems on the agenda for me.

Steering Committee

We have heard of the guidelines to dealing with Mesothelioma and patients, yesterday Chris Knighton emailed over the following report and has asked us for comments.  I believe we can make the comments directly to the JLA themselves.

 

This is a non pharmaceutical funded research study bringing together information from Patients, Doctors, Carers, detailing up to date trials and adverse reaction.  I am aware that Prof Fennell, Graham Sherlock-Brown (Long Term Survivor), Liz Darlinson (Meso UK), Andrew Lawson (Doctor and Sufferer) and various other well known people are the steering group.  Indeed Graham mentioned this to me a while back and at last I am pleased it has finally got underway.  To find out more about what the organisation can do visit

 

http://www.jla.nihr.ac.uk/Introduction.asp   For information on how the Steering Groups Work

 

The document explaining the objective of the Mesothelioma Steering Group can be opened here:

 http://jansjourney.co.uk//JLASteering.pdf

 

There will also be a short survey coming out which again it is in all our interests to return, as soon as I hear anything I will let you know.

 

In the meantime yesterday was a busy day in our house.  What with gas oil deliveries for our winter heating then parcels for Gary, he has decided to bin his old, and boy do I mean old, clothes and buy new.  I can tell you I was singing from the roof top.  The district nurse arrived to clean and dress my wound and the Macmillan nurse arrived to discuss today and hopefully a good outcome.  On the afternoon Joyce popped over and gave me a beautiful foot massage.  I had noticed on the morning my left foot looked a little puffy, by the time Joyce got to my feet my left was truly swollen and my right starting to follow suit.  I hope I am not starting to get fluid in my feet, this will lead to other problems and also as I have had heart failure in the past I am slightly worried.  This is something I will be keeping an eye on, if they don't improve then maybe a call to the doctors on Monday.

 

I am nervous in case things don't go my way but all I can do is hope that treatment will be offered here.  I am also going to ask about the treatment Dr Faheez Mohamed does at Basingstoke.  He did a presentation of his work at the Conference in 2012.  Peritoneal mesothelioma is found in approx. 10-30% of meso patients, plueral is the highest and pericardium is the lowest.  Funny I have all three, not that it is funny in the laughing sense of the word.  I must have been among the nasty stuff and breathed it in wrongly on more than one occasion but then we do know that meso can travel, not that we were told this years ago.  Years ago they kept saying it never leaves its local area, they got that wrong in 07 when mine was beating down my heart!

Yesterday was Bear's birthday, what a birthday boy he was too.  Gary cooked them both steak for his birthday tea, we got pancakes! 

I am going to try and relax this morning so that when I get to Newcastle I am not looking tired and grey, we have to look healthy otherwise it goes against us having treatment.  Chemotherapy isn't something I really want to have if I had a choice but it is the only thing I can try right now to bring the mesothelioma under control.  I am hoping it is the same strain otherwise chemo may not be efficient on the tumours and then, well, I don't want to think about it.

 

Christmas is galloping towards us and I hope that between now and then we don't lose any more meso warriors, each day we seem to lose another person to this terrible cancer.  Something has to come soon to reduce the deaths and give us all a new hope.

 

Life is settling

The last few days have been up and down, mornings still feeling sickly and taking its time for me to feel human.  Even with domperidone tablets nothing has changed.  I wonder what causes the stomach to feel so awful.

 

Monday I had the dressing changed only as I had become flat for the first time in a long time, it didn't last long, Monday and Tuesday were both draining days and this morning will be no exception.

 

I didn't get in to work but yesterday I spent 3 hours on the computer dialled in so I was quite chuffed I had managed to sit in one place for so long.  Its times like these you really appreciate your colleagues, they have learnt their jobs well and can run the department with out you, together with doing some of my work, I don't need to stress as much as I used to.  If the industry was manic like several years ago things might be different but since 2009 the Construction industry took a heavy blow and more so in the North East where recovery is always last.

 

I received a copy of the letter that has gone missing to the oncologist, each time I read any thing now about my stomach my heart sinks.  Some describe it as extensive other as multiple masses, and to think my left lung is stable only my right is playing up but in the scheme of things this isn't the problem.  If my back had been great I would have had a wonderful summer, if the stomach hadn't been exposed to this cancer I would still be in remission, kind of, from last November!

 

I tried ironing on Monday but only managed 45 minutes, I thought it wouldn't be so bad but it did tire me quite quickly, this is so strange as ironing isn't really pushing the boat out is it.  I think I will need to teach Gary this art sooner rather than later!

 

Everyone in the office has come down with colds and flu, so even if I was fit I would not be exposing myself to the germs.  One thing we have all learnt is to stay away from bugs, regardless of being on chemotherapy, as if we get a bug in our lungs then this could lead to complications and even death.

 

My drain itself has finally settled down, it has been tough, but maybe with me being low with everything else then maybe it took longer to get over.  The district nurses now will only come Monday and Thursday to dress and I guess over the months this may drop, I can't see me forever having to have the nurse changing it.

 

My Macmillan nurse is marvellous, she rang yesterday to let me know things still weren't moving and has faxed Prof Fennell's letter off to the Oncologists as they haven't been received.  My last Macmillan nurse did nothing like this, she would come and tell me how to take pain control or see if I needed to speak to anyone regarding feelings.  She was never pro active in helping me get doctors appointments etc, she has brought a breath of fresh air into our circumstances.

 

I received the sad news that Don Smitley received his wings this morning.  His daughter, Jennifer, has been journaling his fight with mesotheliomahelp and her Dad also wrote a few entries.  Sad thing is we all thought he was doing so well.  No one really knows what mesothelioma will do.  My thoughts are with Jennifer and her family.

 

On that sad news I am closing the blog here today.

 

Sunday Blues

Yesterday I popped into the office and had a quick look through the post on my desk and filed a few things.  Gary dropped me off on the way to the fields so time was limited to his dog walking time.

I was tired after such little exercise it was stupid so I sat on my backside for the rest of the day.  I did try working on my writing but honestly my brain didn't want to get into action.  I was over the moon about one thing, my visits to the loo increased dramatically I went more yesterday than I had all week.

I think I am becoming allergic to tomatoes, a couple of times over the weeks my feet have gone crazy with itching, I blamed fleas the first time but had no bites.  Last night I had tomato ketchup with my potatoes as soon as I finished eating my feet went crazy!

Today has been a nothing day, I didn't feel great when I got up, certainly not looking forward to the prospect of showering either.  But 2 hours up and I knew I needed to get clean, thankfully I did it then as the nurse arrived not long after I emerged from the bathroom.  After draining solo yesterday we thought we would let the nurse come today, although for the first time in a while we got off 250ml only.  My stomach is quite flat, hence I think pressure has been released from my bladder - something has gone right.

I feel like I need some one to give my lungs a good blow out, shame we can't just get an airline down into the lung and give it a good blow.  I feel like the left lung just isn't opening up enough and getting air in.  I hate this feeling because it makes everything an effort.

I have watched a Colombo movie and then Vanilla Sky, what a lot of tosh but it past a few hours!  Now it's dinner time, I have no idea what I want to eat.  We are doing Sunday Roast tomorrow but my taste for food today is not there.  Hubby reeled off a few ideas to a blank face from me, it is so hard for him trying to cook or suggest things tempting to eat.  I have drank a bottle of protein today, some body builder milk shake that is full of every thing to build the body up, can't see me on Mr Strongman anytime soon.

Many meso friends found themselves at Linda Thomas' leaving party, her new life will begin in Australia, so I wish her well and know that those who attended will miss her dearly.

I am feeling at a loss, hubby has decided it's the loss of protein in my body and I truly want to believe that, but we all know cancer can give us days like this, I hope I can shrug it off and feel brighter tomorrow.  I always wish I could go back to bed and wake up the next day feeling better.

So that is me for tonight, here's hoping tomorrow brings a better day not just to me but to everyone else who could be feeling this way.  I also hope the weather improves, it's been terrible here, gale force winds and lots of rain.

Surprise MRI Scan

Friday turned out to be a very busy day.  I got showered reasonably early, well after I did the blog then Gary took the dogs, while he was out a delivery arrived with a present for him for Christmas.  As one door closed another opened as the Heather arrived, our District Nurse, to change the dressing and watch me go solo.  I couldn't do the dressing and the wound looks yak!  I handed over my meagre water sample, I could only just meet the requirement and that was my morning flow!

 

Gary came in part way through the draining so he helped plunge the drain and we were off, another litre gushed out but I capped again.  When Heather left Gary wanted me in the kitchen and together we started to prepared Carrot and potato soup.  It smelt divine but would be an hour before we could eat it so I had a protein drink.  The phone rang to say I was going for a scan, I queried this as I didn't know one had been booked but yes it was my details and I was there that evening.

 

The door bell went, I was expecting Hilary from my school days but no it was my GP, he had come to say he had booked me a scan on my spine to ensure nothing was pressing on the nerves making me not pee.  He stayed for a cuppa and we talked about plans for the future and what we were waiting for, then we talked about cooking, he has promised me a nice Indian Curry recipe that he cooks, can't wait.  He discussed eating and told me I need to be eating as much fat and protein as possible, I told him food didn't hold much of an appeal so he said eat lots of puddings etc as well.  Ok, will try that, I love treacle sponge!

 

We had a sneak taste of the soup, delicious, then the door bell again, Hilary had managed to find the house.  I was shocked, she hadn't changed since the last time I saw her at my nephews 6th birthday.  Why do some of us age and others don't.  She looked nearly the same as school too, I must ask next time how she has managed to stay so youthful.  We sat for a couple of hours, in fact I have no idea where the time went, and chatted as if it was yesterday.  Although Hilary spoilt me and the dogs.  She brought over a beautiful top that will float over my stomach and hide my drain - how does she know I hate shopping I wonder?  Along with some creams to help my skin with the stretching from the fluid.  The dogs got spoilt too, and boy could they smell them, poor Hilary didn't stand a chance with either of them sitting on top of her and pawing her waiting for the meaty strips to be given.

 

It was then time to go through the works traffic and get to hospital for 4.45.  It was done at the BMI Woodlands, on the NHS!  John, the head of radiology was sitting in reception and gave me a warm greeting, guess I have been there too many times now!  He told me that Dr D sent his regards, which was nice to hear.

 

The MRI is a large machine which can cause claustrophobia, the first time I had one was 2003 when I was sure I had endometriosis on my lung - if only!  The girl gave me a heart attack when she said it would be 55 minutes inside, I thought it was a quick picture.  I tried to get as comfy as possible, the ear plugs didn't sit very well in my ears and didn't really block the noise.  I tried not to think about my surroundings but you can't nod off because you will move.  Trying to stay perfectly still and stay awake is difficult.  At one point I had moved so the picture needed doing again. 

 

I counted to myself, I counted the machine clicking several times and I thought about meso quite a lot.  Probably that is why no one who is ill likes to be alone in these things, we can't get away from our thoughts and we can't go to sleep because it's easy to move.  I am sure I tightened up more as my shoulder started to ache, even though my hands were by my side.

 

I was sure my drain was pulling forward as the waves of the machine washed over my body and I wondered whether the cancer mass would be broken down then put back together again.  Strange what you think inside the tomb isn't it.

 

To be honest I was shattered when I came out of it, we got home and I settled for - wait for it - fish finger sandwich.  Gary had fish and both of us felt sick from the grease.  We collapsed for the night in front of the TV.  Thankfully we tape plenty so we had two scandals to watch, an excellent drama about the White House.

 

So today we went totally solo and drained another litre before I showered, I think it made showering easy.  I noticed again the odd shape I am, I am losing upper body weight faster than I can eat.  I am popping into work this morning while no one is around but my brother Nev.  At least I can sort my mail out and try and get a head a little.

 

I just read that Ray is starting Chemo again, Amanda I wish you both well on this journey you once again have to undertake, to all of you under treatment it is hard going but the results have to be worth it.  To Steve in Oz, he has just had a drain and is off on a cruise, hope he and Gail have a great time.  Tess has had excellent news, Stable at last! 

 

I wish that magic tablet was here now today but I have waited for this long, I'm sure next year it will come and we will all be saved.

Is it really Friday?

Last Monday seems a life time away and here we are and its Friday again, which doesn't seem right.  The week has flown in one way and gone slow in another.

 

I have had company nearly every afternoon and today is no exception, an old school friend is calling round.  After my book was up for sale in a local village shop she recognised my photo that the shop had used to publicise the book.  It should be an interesting and wonderful catch up.

 

I had Joyce over yesterday afternoon, no aromatherapy though, just a nice chat.  She brought my favourite's, her home made ginger snaps!

 

I have also discovered that bending down makes me breathless, up until last year I didn't really suffer breathlessness.  I was a pain only girl, but now I suffer both and I hate this, I don't like the breathlessness, it actually does hurt but not straight forward pain.  Something else to ask the Macmillan nurse, breathing classes.

 

The breathlessness will be one thing to go if the chemo, when I finally get it, will help and I will know if it is retreating and dying off.  At least we do get signs that things are working.  Gary said I should buy an oxygen thing for when I am breathless but then that will make my lungs extremely weak.  Not a good idea at this stage.

 

I am hoping to return to the office next week, maybe 11 till 2, but how do I stop myself from bending over and picking up files etc?  It is habit and one that I have done for as long as I was able to walk.  I can't keep asking my colleague next door to leave his desk and come into my office to lift a file from the drawer or the shelf behind me! 

 

I have woken up with that rotten feeling in my stomach again, I stopped taking the metroclop at 6 am, as I didn't think they worked but they helped me from feeling rotten for so long, so tomorrow I will be back on them.

 

I have to give a water sample too, this is day 3 since I was given the sample pot, so this morning I remembered, I only peed out enough to fill the thin tube, I am starting to worry as at most I am probably visiting the toilet 3 to 4 times and not going very much.  I just hope the body is working properly down there and hasn't been damaged due to the excessive weight that was crushing my organs.  The sample is to see if I have an infection, which I doubt very much, but I hope I do.

 

I have lots of new twinges in my body, my left side now has a stitch, another new area of discomfort, I feel like I have a small sheet of hardness just along from my naval and down slightly to the left along with this strange sensation in my left pelvic area.  It will be interesting to see if the Oncologist actually goes through my scan with me when I see him and see if these areas are now meso or just nerves being disgruntled.

 

I was in trouble last night as I hardly ate, I had a sausage roll for lunch, had a craving but it wasn't nice, then we had dinner last night but I just couldn't eat a lot.  Hopefully my appetite will pick back up but I need to be eating much more.  The body is loosing vital vits and muscle due to the protein being stolen from my blood etc. 

 

I can't deny I am frightened still but at least I can now get on top of that fear and do something to put it back into my memory.  The worst thoughts come when I am lying in bed waiting to drop off to sleep.

 

Have just had a phone call, my doctor requested an MRI of my spine yesterday, I have no idea why unless it is to see if the nerve is still trapped in my L4-L5 and hence I can't visit the loo.  How efficient is that as I am going tonight for it.  It is even on the NHS!

 

So shower time is looming, I think today I will be using the stool as I need to wash my hair.  It is also dressing changing day and Gary has asked to be excused.  I don't blame him because actually seeing the drain reminds me life will never be the same again.  I have drawn a litre a day apart from one day when it was only 400.  That is a lot of fluid and there is still plenty left in the stomach as I won't let it go empty!

 

I received an email this morning telling me another warrior has lost his fight and gained those wings to heaven.  Peter Gallolgy was diagnosed in 2009, his first choice was no treatment and he did that for approx. 2 years, enjoying his life.  The meso started to grow faster so Peter then went on to Chemo, I haven't been in contact with him since Christmas when things were going well.  My thoughts go to his wife and children. 

 

On that note I hope a cure is found sooner rather than later, every day some one some where is diagnosed with this death sentence.  This is not our fault, its a man made killer that should have been researched before used in everyone's homes and workplaces. 

 

Being a Judge

I have been asked to be a judge for a essay competition on Mesothelioma, if anyone is still wanting to apply for a school scholarship in the USA you can reach it here.

 

So yesterday I sat and read through the essays that have been submitted to date, better start now before the competition finishes.  This will give me an idea of what to look for and if I have to re-read the ones I have already read it doesn't matter as with my memory I will think I am reading them again for the first time.

 

Yesterday I had a really bright day, what with Gary and I flying solo with the draining then Liz came over on the afternoon and we finally, yes finally, finished editing The Vial of Darkness.  I just need Lauren to do the final art work for the cover and hey I will publish book 2.  I am not sure whether to bother with Kindle as I only sold 16 and am still waiting for the USA funds to be paid.

 

I must get sorted and send a cheque to Chris for the sale of the books my friends and I have sold out and about, I wonder whether I should have just written Chris a cheque for the costs and forgotten about the book but I did enjoy writing it and from some of the feed back I have had many people have really enjoyed the story line and of course the book.

 

The weather changed drastically here, the Northerly winds are full on, last night I couldn't sleep and although Gary was sound asleep I just couldn't nod off.  I got up at 12.00 and made some hot chocolate, this didn't do the trick either but I made my way back upstairs about 12.45, I stayed awake for a while listening to the wind chimes outside and feeling sorry for the wild life that have gone from hot evenings to freezing cold nights in 24 days.

I didn't get up at 8 because of such a bad night, I also had severe sweats and still haven't managed to buy those clothes I have been told about.  I did, however, wear PJ's and they took the brunt of the dampness.  Gary arrived with a cup of Tea at 9.30 and said "Sweetheart you had better get up"  What I thought! 

No sooner had I showered this morning the District Nurse was here, Heather is the head of the nurses and it was her turn to visit.  She asked how our arms were off yesterday's flu jab, now I remembered why lying on my left arm hurt!  She told me she was so happy to see such a change in me, and again what a difference a week can make.  We flew solo again but  tomorrow is dressing day so Gary has already excused himself from helping.  Another litre was wanting to gush out but I slowed the flow again.  I capped at a litre, its enough so that the tube doesn't poke my inner organs.

My Macmillan nurse also told me yesterday that the letters regarding treatment have still not been sent out to the oncologist, so hence I am still in the waiting place.  Hopefully they will go this week, its nearly 2 weeks or more since I saw Prof F and in this day and age you would have thought the post would have gone.  Although he is a busy man, with waiting lists, new patients and of course trials.

So hubby has gone out with the dogs, which brings me to Lexi.  She is drinking water during the night then peeing on the carpet.  Towels have been put down but somehow she always manages to choose a place where they aren't.  We have wooden floors too, but oh no she chooses the living room.  It stinks of ammonia, I know she is failing and you can't really do anything.  Closing the living room door would mean she would start somewhere else and then another floor is ruined.  Thing is Gary isn't as good at carpet cleaning as I am, he thinks one rub and its done.  Me I would soak it with water and then wash before sucking it up with the carpet cleaner.  I can't teach him though, as he won't listen nor I can do it as scrubbing makes me so breathless.  My house will become smelly and I can't stand that.

On that note the blog is done for today.  Its onwards and upwards here and I hope the same around the world for everyone battling through this journey of uncertainty.  My heart aches with each new name that appears on face book or who contact me directly.  Why so many needless deaths and so many of us suffering with such a terrible cancer and yet we are still pretty much ignored world wide.  Will asbestos ever be banned completely and who will pay to clean up all the asbestos out there waiting to kill the next victim?  You can bet the millionaire companies who profited from it won't be putting their hands in their pockets will they,
 

Drainage - Trying it Solo

I haven't blogged for a few days as I have had nothing interesting to write about and honest I think I have moaned for the USA let alone the UK over the last few weeks.

 

It has been tough going, its an adjustment to a new life and getting my head around it has been one of the most difficult periods I have ever gone through.  Dealing with the meso coming out of remission is bad enough but finding it has moved to a totally new area is mind blowing evil.  Then of course having a constant reminder every time you rest your hands on your stomach, no fun.

 

My tummy seems to empty a litre a day at the moment but yesterday it was stubborn and although it was in there it only came out at 400.  I tried turning this way and that but I didn't touch my stomach.  I did the day before and I must of pressed on the cancer area because I hurt for hours.

 

I want to fly solo, so to speak, Gary has trouble getting the tight gloves on, which did make me laugh but yesterday he managed.  Unfortunately it was dressing change day.  Big mistake for me to think Gary could handle working with me for the draining procedure.  The wound was leaking lots of fluid and him this directly coming out threw him side ways.  Considering he watched the thing be put in I was quite shocked.

 

I managed to clean the wound, the drain and Gary managed to get the bottle seal open but he had to leave the room.  The nurse and I ended up having to finish the procedure.  There is nothing to it really but I need him to help as dressing the area is quite hard.  I cut the padding right down, you have a large square foam thing that covers the hole, so I cut this by half an inch right round, what a difference. 

 

My Macmillan nurse called in yesterday too.  I told her my appointment with my local oncologist had arrived, it is the 28th October.  I said if he says 'no' then by the time Liz has sorted another appointment with Prof Fennell we are into middle of November, then the trust will have to apply for money from our local trust, so that's December, Chemo may not start till 2014.  And we all know how fast Mesothelioma can change.  It came back big in July, was it here in May?  So it will have had at least 5 to 6 months growing before I have started anything to knock it back.  I have to take my hat off to her, she said she would contact Dr P's secretary and see if an earlier appointment could be made and if he had received any communication from Prof Fennell or Dr Hughes. 

 

I discussed writing to Mr Faheez Mohamed at Basingstoke hospital.  He is the only UK surgeon I can find who works with peritoneal mesothelioma, he also studied under Paul Sugarbaker from the USA, who is the number one out there for this surgery.  I also found he works privately too, so any problems and I could always pay for treatment.  Although in the UK they aren't as up for taking your money for dealing with mesothelioma. 

 

I heard back from Dr Breen, he said something like my lung is of no consequence at the moment and that I should be concentrating on my peritoneal mesothelioma.  I, of course, disagree.  If I could get the lung growths killed then they can't spread.  In the States this would just happen, but oh no not in the UK!  This has also made me wonder whether the stomach is much worse than I anticipate.  I did try and ask the Radiologist how much cancer was in there but he managed to duck the question several times.  I can't read the scan for my lower body, I can understand the top bit on the lungs, to some degree, but I wouldn't have a clue about anything else.   I wish right now I was in the USA, I would have those right tumours frozen to death, at least I would feel I was getting somewhere.

 

Overall finally I am picking up.  Although more breathless than I have ever been, I now shower downstairs every day, I only climb the stairs at night to save my breath.  The wound site has stopped hurting, as long as I don't touch it, and its itching, that means the stitches must be dissolving at long last.  I didn't realise I had three cuts from this procedure either!

 

On some really good news, Tess on of my fellow bloggers and superstar's has been told her drain may be removed from her lung.  It has been insitu for some 15 months and it will probably need to be removed under a surgical procedure.  This is big step, and one that Tess has waited for for a long time.  To be stable is such wonderful news.

 

Fighting Mesothelioma is hard, there are so many more cases being diagnosed every day, people who have never come up against this cancer are suddenly finding a loved one or friend has been diagnosed and of course the outlook is grim.  Doctors take away hope before the patient has even left their offices in most cases.  For those just diagnosed it isn't always the case that you will die within 4 to 12 months.  Many are being diagnosed at early staging, this is when surgery should be considered.  I know mine has spread to my abdomen but I lost my diaphragm, that is what made the difference I believe.  Thinking back to 2006 when I went to an Action Day a young girl was telling us that her father and brother both had surgery and both died because it spread to their stomachs.  I remember saying to Gary how pleased I was that I hadn't opted for surgery in 2004.  But the fact is I didn't know how far along their cancer was.  That's the problem when you read or hear things.  Position of the cancer and what it is doing dictates the action you need to follow.

 

Prof Fennell said to us, Always follow the Evidence.  Liz will tell you the same. 

 

I heard from the lady who has had her first vaccination, she had a bad skin reaction to the first one, she has one more before she starts Chemo then an injection every week I think.  I said really they should try this on people who have had chemo and it came back.  If the vaccination works that is where it would prove itself early, because if the meso didn't come back within a year then they have a product that potentially works.  The first challenge of chemotherapy can keep the mesothelioma at bay for anything from 4 months to several years.  When its a second rechallenge the length of time is a lot shorter because our meso cells know the poison we are using.

 

Afternoon Out

Mornings are starting bad but I guess that is also down to the cancer and being immobile all night, but yesterday I actually picked up earlier than I had the day before, even though I had insomnia the night before.

 

I couldn't even read as my Kindle was flat!  The iPad would have kept pinging so that would have woken Gary so for 4 hours I laid there, my mind going all over while my body tried to rest.  Finally a knock out pill after 2 pm and I slept.

 

The DN's didn't come yesterday, they did ring around 4 but I was ok with the fluid that was building up, heavens if I can deal with 5 litres I doubt 500ml to 1 litre will make much difference. 

 

Although cloudy it was warm outside and hubby did that "Don't take my head off but how about" and I was up, a walk with the dogs, ok a very short walk but out in the fresh air and a change of scenery.

 

It was fun and of course I love the sound of leaves under foot, Autumn is here and that is the sound that I associate with it.  So he taped me, unbeknown to me!  We also went conker collecting, it is good fun and of course when you put them in the house they are supposed to stop spiders!  They have worked in the old lounge and office, but the conkers could do with being refreshed in there now.

http://youtu.be/oOOylfGuqc4

100%

Chris also called round for a natter, although a quick one it was good to see her, how fast a week can pass without seeing your friends but when you are under the weather you really can't be that bothered either.

 

The dogs enjoyed me being out with them too, so all in all it was a good day.

 

       

I am noticing one thing, on a morning I am really breathless, whether this is the fluid from the night building up or the cancer itself I am unsure.  This is one thing the chemo will help if it starts to work, whenever I manage to start it of course.

Yesterday was conference day, I know that Linda (Doing something positive) will update us on the points raised which are so important to us all.  I hope they all had a marvellous day though, nothing like meeting up with others in the community.

Conference Day

It's hard to believe its a year since the last conference day.  How much has happened in the last year. So many brave friends lost their battle to this cancer.  Today will make the loss of Debbie raw to many, she went to everyone I believe and was there to meet and hug all new sufferers to the journey.  Then we lost Helen, and countless others.  All robbed of their lives.

Mesothelioma brings together a world of strangers with one aim to help and support as well as share news on treatments and awareness of asbestos.  Because we are classed as a rare cancer no two trusts treat patients alike.  Some oncologists know little about treatments and can't help the patient, that's why support is important.  Knowledge on treatments around the country are aired in the hope they will help some one else.

I still receive emails from newly diagnosed people or their families asking for help, the oncologist has said to them that chemo takes away quality for very little quantity. How wrong is that, especially in this day and age.

My recovery is slow, the mornings are hard but by lunch time I am on the up.  My district nurses organised a shower stool and air cushion.  The shower stool worked great this morning but I am noticing the breathlessness more, just hope the right lung isn't getting a hold but am looking forward to the chemo taking this out.

I need to get a grip mentally and get those negative worries out of my head.  I want to be in a better place with my health and do things again next year, like meeting Lou in Europe, if we both get through our on going battles.  I want to meet up with the lovely friends we met last April and hopefully have a cruise together again.  I want to be around for another birthday, anniversary and most of all survive the 13 year stigma.  It's 13 years this month since we moved in, 13 years since I collapsed at work for the first time on 17th of this month.  I'm not suspicious but Gary is.

Last night I spent 4 hours trying to get to sleep but in the end I had to take a tablet, 2 am had been and gone and I just couldn't sleep!  I didn't sweat much last night either and if I was on the computer I would paste some advice I was given but on this IPad I don't know how to.

I drained 500ml yesterday, I'm not expecting the nurse today but they will come tomorrow and I will probably do another 500, it didn't make my stomach ache as much just that strange feeling in my left pelvic side.

Hoping this is now the turning point and life will get better, my girls from work came yesterday at lunch time, it was great actually seeing them outside of the office.  The chat was good and although we talked about me we also managed to chat about other things, the time flew by.  Good job we weren't clock watching as Claire was at least an hour late back for work and Ann had eaten into her half day off.  Claire offered to go and shop for me a new wardrobe, she is a shop aholic so who knows I may take her up on it.

That brings me to the end of the posting, I wish I was at the conference but know the information given will be published for us all to read from various sources.

My Mind keeps Saying Things

Progress is slow, I just seem to be feeling comfortable and its bed time apart from last night when my skinny bottom feels like bed sores are working their way to the surface.  Sitting all day is not me, I have to recline otherwise the pipe digs in, how will I sit at a desk all day?

 

This lack of energy and sitting around all day doesn't do your brain much good either.  My mind keeps telling me I am on that slippery slope and that I will not get better, this is the start of the end.  You know, the drain is in but the cancer is growing and I can't build up strength, therefore the cancer is taking control and its gone from slow growing to aggressive.  Haven't we seen it time and again and lost many friends who were fine one month and gone the next.

 

Yesterday I watched nearly a series worth of Housewives of Vancouver, that is becoming a sad person.  I wonder what they have to bitch about when so much is going wrong in the world and boy do 2 bitch.  Then my bum hurt and trying to find a new way to sit, lying down on my left side wasn't comfortable and right is now a total write off.  I wonder how my friends with chest drains lie down?  I know its a little different but it can't be much.

 

I also read that Steve in Oz is being knocked out for his procedure, how lucky is he, yet in the UK we are kept awake for the stomach one, so I've been told.  Are we really a caring profession over here.

 

The District Nurse asked me yesterday who was reviewing me after the drain has been in for a few weeks, good question?  I guess no one.  As I had to go private and the radiologist isn't the one who reviews then I guess again I am out in the cold.

 

I am having severe sweats still, not just during the night but on and off all day.  These too are taking their toll.  Together with the thought of food, at times I am just not wanting to eat.  Last night I ate 3 mouthfuls of what I call comfort food, braising steak, rich gravy and mash.  I am worried, my stomach isn't taking much in either. 

 

I will need to drain today as the stomach has swollen up during the night, yesterday I thought things had settled but guess I am wrong.  So another drain, then another day of it hurting follows.  It is an ever decreasing circle that seems to be taking away my life right now.

 

On that cheery note I sign off, I need to decide if I have the energy to shower or just have a wash.  I forgot to order a stool yesterday which would help showering, not having to stand maybe helpful.

Thursday Morning - Hoping for a better day

Another night of terrible sweats and trying to find a clean patch between the sheets!  I woke up with terrible pain in my side around 7.30, I didn't want to get up so snuggled down on Gary's dry side till 9.30.  The night had been quite disturbed and it seemed I slept the best for this 90 minutes.

 

I came down and sat in the office, a coffee placed in front of me and a rich tea biscuit. I looked grey and felt it.   I couldn't drink the coffee, left the office and crawled onto the sofa in the lounge, pulling the knitted blanket over me.  I hurt badly even though my stomach hadn't swollen very much it was extremely painful.

 

The nurses were nearly due but I just couldn't muster the energy or will to shower, instead I had a wash then got dressed and crawled back to the comfort of the sofa.  I didn't think it worth draining my stomach as I would think only 400 to 500 ml was in there, this is good, it means the body is getting used to the cancer.  The pain wasn't easing so I took some morphine and wished I could be swallowed up.

 

It didn't seem long before they had gone and the new MacMillan Nurse arrived.  Gary said I gave her a rough five minutes to make sure she knew her stuff, I didn't think I had but there again we never watch ourselves in motion do we.  She stayed for nearly 2 hours, we went through the problems I had gone through with the NHS, not just recently but prior.  She asked why I didn't complain so I told her it only makes things worse and I found that out after I had made an observation which would benefit patients.  Her first task for me:

 

Find out who I am now under and if Dr P is acting as oncologist

 

We did talk about pain management and I said I want someone to work with me and advise not take control and tell me what I will and won't do.  Its my body and I should have a say, she agreed, so I guess it sounds like the start of a good relationship.

 

I spent all day on the sofa and all evening, my drain site is one problem and my other hip the other.  Whether I have some nerve damage or the pipe is tickling them I don't know. 

 

Another night of sweats last night but again this morning my stomach hasn't changed from yesterday, I'm still sore and still feel off. 

 

I am frightened that I wouldn't get back to how I was before the drain was inserted.  I am low on energy and this could be trauma to the body as well as fighting cancer.  But I didn't feel ill physically from the cancer even when the stomach was swollen. 

 

I seem to be going two steps forward then one step back.  Emotionally I can't accept this drain that sticks out of my tummy or the odd shape that I am.  I know I am glad to be alive and this will help me with the symptoms of this crap cancer but after everything I have been through this has knocked me the most.

 

Again I have risen late and already 10 am is looming, I need to shower before the nurses arrive, I'm still not sure why they come in two's, but I guess for the next week my life will be this routine, up, shower, nurse.  I hope I can get back to the routine prior to this and find myself back at work by 9.30 but I just can't see that happening at the moment and that does upset me too.

 

So as another day starts I see all I can do is sit on the sofa.  I wish I could pull some energy from somewhere but I just have nothing. 

 

 

A much better day

I had a much better night last night, I rubbed in deep heat to the shoulder and settled into bed.  I only woke up 3 times which was great and even slept a little late.

My morning coffee stayed down although I couldn't drink it all, I tried to catch up on face book but time was moving on.  Instead of taking those stairs back upstairs, I know it's 3 stops, then a landing, 5  then another landing then 5 so what's the problem but my shoulder and side hurt each step I take.  So Bear was ousted out of his home, he loves the shower room and often curls up on the shower tray or on the black tiles.

Surprisingly it was so simple getting showered down stairs, I had re-designed the house in 2010 just in case I end up in a wheelchair or we need to live downstairs.  Poor Bear, he has used this room since it was finished, I know a very expensive bedroom for him.

It wasn't long till the District Nurses arrived and another litre was drained off, this time it started coming out fast again but I decided to slow the rate down as I didn't want it to hurt.  All done and before I knew it one of my brothers arrived.  It was great to see Nev and we spent an hour together then it was lunch time.

Just after lunch another old friend turned up, Dawn owns a Beauty Spa with her sister at Ferryhill, called Broom Mill Spa.  I used to go every week prior to surgery in 09 then with one thing and another our time together has been very little.  It was great we had 2 hours of time together and she was all mine.  usually if I go to the Spa, Dawn is running here and there so being here meant no interruptions.  My wedding invite was from Dan, Dawns son, so we had even more to chat about, wedding talk!

I can report that finally my shoulder is feeling more normal but the spare place in the pain receptors  of my brain have now allowed the full pain of my drain pain to take over.  If I sit upright for more than 30 minutes I get the worst stitch, so sitting at the desk in the office is still not ideal.  Gary banned me from the office today as I had been in there too long, problem is my bum is getting sore sitting all day with my legs up and my back slightly reclined.  I have to admit I am certainly on the mend, at last I can feel progress where the operation is concerned.

I don't know where the day goes, tomorrow is Wednesday and I meet my new MacMillan nurse, I just hope she has some idea about Mesothelioma.

Apart from settling in pain and pain I haven't really suffered and have took no breakthrough pain killer today.  I can see Gary is starting to relax now and hopefully tomorrow things will still be on the up.

Gary is making Roast Beef and Roast Pots for dinner again, I must admit I am looking forward to the rich gravy I can smell.  I have a taste of egg mayo sandwiches at the moment too and something else I don't normally eat, crisps.

As I sit here with the iPad on my lap I can feel the drain, if my hand or wrist catches the area I get a sharp pain, must be near lots of nerves in that area.  My entire posture will need to change to accommodate this contraption.

So another day down towards another future, life is so important and I can't wait to heal so I am no longer wasting my days sitting as a couch potato.  Tomorrow Lou takes another dose of chemo, along with quite a few other fighters, we think of chemo as a life giver but it can also be a life taker.  The toxicity alone can kill the person sometimes or build up in the body.  It kills every soft tissue inside of us, this is why we hope a new form of treatment will be found that doesn't have to kill all our cells but only a part of new cells which develop every 21 days in our bodies.  This would be gentle on the body but a killer to cancer if they could find,the right key.  We are getting close but it is still a long way in some respects.  Our DNA built up has so many sequences that to get the wrong one could end up with our new cell development bringing further damage to the body.

That's me for today or should I say tonight.