Mesothelioma -My Diary– Exciting Conference in USA

The ADAO Conference is underway in the USA and I could have attended this if I wasnt so unwell.

I have just had IATP Christine Winter, tell me she is mentioning me in her Presentation which is an honour.

A lot of my Facebook friends are there so well done to them

Debbie has met Heather Von St James She made this Video of her story http://www.brighamandwomens.org/Departments_and_Services/surgery/services/thoracicsurgery/services/mesothelioma/Heather_Von_St_James.aspx

Good Luck everybody xx

I have had a good day today even if the sun hasn’t shone and I managed to go for a longer walk with Ray and Louis. We took it very slow but that’s the first so I must be on the up.

We have been having problems in the UK with fuel and the garages running out but now we have another problem as neighbourhood watch have notified Ray –THEFT FROM MOTOR VEHICLE
This took place at Allan Road, Seasalter, Whitstable between 00:01 and 01:30 on 28 March.
Diesel was syphoned from a white Vauxhall Insignia saloon, which was parked on the driveway of a residential dwelling.—

I bet this will escalate around the country until the fuel crises is over.

http://mesoandme.wordpress.com/2012/03/31/saturday-7/  Rays Blog for saturday

 

Mesothelioma –My Diary -A wasted day

Im not happy.

I waited all day for a call from my Oncologist. I have felt exhausted today and have to keep taking Piroton as my nose pours and my eyes are so sore from the  effects of last weeks Chemo.

She didnt phone so Ray contacted my Macmillan Nurse at 4pm and she said she would go in and chase her.

The phone rang and she said the Radiologist didn’t come this Wednesday and she wants a meeting to discuss my case.

So she will still see him and have a meeting with in the next 2 weeks.

I know they are busy and Im not the only patient she has to worry about but Im important to my family and we want to know IF there is anything that can be done.

So another wait and I have wasted a whole day –the days are important to me to.

http://mesoandme.wordpress.com/2012/03/30/almost-sucked-in/  Rays blog today

 

 

Mesothelioma My Diary A very Country outing.

We are hanging on to the good weather -how long for we do not know.

I woke early so came into the den and was able to say goodbye to Debbie and Christine who is speaking for IAPT- as they were flying to the ADAO Conference  in the USA. -I wish them luck.

http://www.asbestosdiseaseawareness.org/adao-conference Good Luck to Linda Rheinstein and thanks for all you do to raise Awareness in Asbestos.

Debbie Brewer, a mesothelioma patient, will be recognized with The Alan Reinstein Award for her commitment to education, advocacy, and support to countless patients and families.

Larry Davis, a mesothelioma patient, will be recognized with The Alan Reinstein Award for his commitment to education, advocacy, and support to countless patients and families.

So proud of these two xx

Ray and I worked together with the housework -ray doing the bigger portion Bless!!!

I had a shower and dressed and said we could try and go to the Country Park as Louis really has been shut up for so long on my bed and it was time to give him a well deserved run.

We drove round in the car and it was lovely in the sunshine.

I took a walking stick to keep my balance and did manage a walk round the field throwing the ball for LOuis so he had a great run free of the lead and me.

Looking like Charlie Chaplin

Louis getting in the picture

The helicopter was on the pad today

Horses were being exercised -all a lovely country scene.

We came back to lunch and a rest and then I walked Louis down for his 5pm wee.

My younger son phoned as he was back from Cypress and his Villa there where he has been holidaying so I broke the news of my, No more Chemo, which has greatly upset him. I hated telling him as I dont want him to give up on me  I need my family behind me still willing me on to fight.

I have said the Oncologist is phoning tomorrow to tell me the results of the scan –I pray she does and doesnt forget.

Dinner done and the sun is going down on a brilliant day but they still say tomorrow is going to be great again.

http://mesoandme.wordpress.com/2012/03/29/mavis-on-her-feet/  Rays Blog

 

Mesothelioma My Diary –A wonderful day in the hot sun and its only March !!!!

Oh my the weather has been so good today.

I woke and it was still very dark but I had to get ready for the District Nurse to come and clean my PICC Line as I dont know when it will be removed so I must chase that.

The nurse was shocked at my news about the Chemo and told me not to give up but to keep fighting. She has had patients that give up and die fast as they cant cope with such new’s.

I told her not to worry Im still fighting Meso hard.

Another nurse called in to see how I was getting on, as she had been to another patient on our Park.

I told her the story of my Chemo session and thats it I cant have anymore. They were both nearly crying bless them !!!

They both said –“But you look so well!! ” Everyone says that and I feel so bad and lifeless. Why do I give that impression? I always have, even when a child and so my Mother used to say “Oh go to school and come home if you still feel ill”

They finished and went off as i said goodbye to them.

I managed breakfast and Ray did the house work and took Louis for a walk, but it was so nice out I suggested we went to Tesco.

I took a sick pill and we set off. I had escaped hooray!!!

It was good to see people again.

I walked Louis round the Car Park very slowly so that I could know I could walk around Tesco’s which I did and gathered fresh fruit and vegetables into the trolley.

When we got to the checkout my strength was failing and there was the Cashier talking away to the lady in front–I wanted to scream at her to hurry up.

We finally got out and back in the car where we drove home.

Lunch was served and I had a lovely rest.

We then walked Louis round the park just before dinner.

So I have had a day of exercise and have gradually felt better as the day went on.

Tomorrow might be even better.

 

Louis has lost a little friend today as his Norfolk buddy has died -Ray had to break the news to him that Busta has gone to the Rainbow Bridge

Night Busta RIP. Louis had a wonderful time with you on the fells chasing rabbits xxxxx

 

http://mesoandme.wordpress.com/2012/03/28/its-a-broadband-day/  Rays Blog

Mesothelioma –My Diary The news has been so bad but now Lets have fun and celebrate life

Well I have been very quiet on my blog this week as it has been hard to come to terms with things that have gone on.

My Chemo was very bad and the reaction to my body was a bad reaction that has caused bad toxicity, I have been in bed and very unwell ever since last Wednesday. Im a little better tonight though.

My visit on Monday to the Oncologist wasnt what I wanted to hear but knew what she meant.

First my Chemo nurse saw me and said my reaction was rare and she hadnt seen it before so please talk to the Oncologist. Thats what I did and she said I have come to the end of Chemo as my body has had enough— remember last September I started the trial at Maidstone which didnt work  and then in Jan went into Chemo at K&Canterbury so my body has taken so much now and is full of Toxic’s.

My Macmillan Nurse was there as well and she said there comes a time when we talk about quality of life and to keep suffering, like I was now, is not quality.

I looked at Ray and realised how upset he was and so yes I have agreed to sit back now and enjoy my life.

I have a better chance at it anyway as I have stable now for awhile (I will know for definite on Friday when the Oncologist  phones me with a second opinion)

We came home in a daze and I have really had to think about how I will plan holidays etc etc.

I will carry on with this blog but it will be a diary of how I enjoy my life from now on and how I will fight to keep enjoying my life.

I have had so many best wishes from friends and Im so grateful for their concern and love

So lets not be sad and unhappy I will live everyday happy and having fun —promise.

 

Enjoying Life

Enjoying life before it all away goes
On to the winter’s playing penumbra field
What was of proceeding is now like glows
One at a time falling in oldness yield
The day becomes dark like evening light
With all its memories broken treasures
This is the extend of each morning bright
Nothing to behold of its going pleasures
In living a dream that once was of spring
Every hour coming is now on so dear
Onto the echoes of old occasions sing
This of the times when winter is near
Love songs of gray and blossoms falling white
When dreams of their sharing becomes night

Peter S. Quinn

 

http://mesoandme.wordpress.com/2012/03/27/tuesday-2/  Rays Blog

Mesothelioma My Diary Im up if not wide awake

Yesterday was a lovely warm day after the sea mist burnt off.

I did lay in bed up to dinnertime as I felt so lifeless and anyway Ray likes me out of the way as he does all the chores and takes Louis for a walk.

They both came back and Louis jumps straight on the bed to give me a look and then goes back to sleep, curled up by my legs.

Ray made me my cheese on toast and then I said I will get up, as he is getting lonely without my company.

He changed the sheets and did the washing and I walked into the garden as he hung it all on the line.

It was warm by then but I didnt have the strength to sit outside so we came in doors.

I managed to stay up all day even if I did drop off twice for a sleep.

The clocks went forward in the night so we feel we have been cheated of an hours sleep, but the sun is shining and the promise of a good day lies ahead.

The Forsythia is out again in the garden and more daffodils all beaming yellow with the tulips to follow, such a wonderful time of year and Im still here to see it.

I wandered lonely as a cloud
That floats on high o’er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced, but they
Out-did the sparkling leaves in glee;
A poet could not be but gay,
In such a jocund company!
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils

Wardsworth

 

http://mesoandme.wordpress.com/2012/03/24/saturday-6/  Rays blog

Mesothelioma My Diary On the up again slowly

We have the Internet on over night again but so slow.

Yesterday I stayed in bed all day as I was so tired and lifeless, I know when my body needs rest so I have given in, I havent been sick though which is a great thing as I hate that awful Chemo sickness.

I dont eat to much but did enjoy my baked cheese and pickle sandwich for lunch and  Pasta dinner Ray cooked today.

A letter has arrived with an appointment for Monday so they are working on this set back  fast which pleases me and builds my confidence up.

I hope they have re-looked at my scans and the Oncologist has got the second opinion she wanted, also my Chemotherapy plan so that I will be able to have good news this time.

Ray still injects everyday my blood thinners but my belly is begining to look like the kiddies join the dots, Im sure he is really drawing a picture, but Im not having any breathing difficulties so I hope the blood clots are dispersing OK

His eyes have recovered well and he was able to take Louis out for walks with no problem in the bright sunshine.

I do hope this wonderful weather lasts so that I to can walk in the sunshine soon, although Chemo patients are told to stay out of the hot sun but who would think it would be so sunny and hot in March.

It did mean I could have the windows open and the warmth yesterday, hearing the neighbours outside sitting in the gardens talking to one another.

You do feel like you are missing out.

http://mesoandme.wordpress.com/2012/03/23/friday-7/ Rays blog he has been dreaming Bless!

 

Mesothelioma My Diary — I stayed in bed today all day !!!

I Have to write my blog so early in the morning as we keep loosing the Internet –they are working on it all dayso we do have it in the night.

I stayed in bed all day yesterday to give my body a good rest so the fluids drained off well and I had normal ankles showing again. Louis stayed on the bed all day and didn’t move until Ray got back.

I didn’t eat a lot but did have a Ham Salad for dinner which I enjoyed. Of coarse no salt  was in that.

Ray had to go to the hospital to have his eyes Lasered to make holes so that pressure does not build up so causing Glaucoma which being a Diabetic this can happen.

His best mate Des –our neighbour took him for us so I didnt have to drag myself out of bed. Thanks Des as I know you are going through a bad patch and we were very grateful xxxx

Ray did come back looking like something out of the Blues Brothers –with his shades on

He soon recovered and was able to take the glasses off and has drops to put in.

It seems the Optician has found it very early so just goes to show how valuable early detection is.

So at the moment I feel OK with just pain in my lung at a level I can tolerate Just waiting for the hospital to sort everything out and a little frightened of what lays ahead as I know how cruel this disease is.

I do feel myself bouncing back and my will power and determination is there still—-honest xx

http://mesoandme.wordpress.com/2012/03/22/laser-day/ Rays blog –what Im finding he isnt writing about me does that mean he cant come to terms with what is happening –I think I will have to talk to him today.xxxx

 

 

 

Mesothelioma diary–Another bad day !

Im up early and cannot sleep so I will try to recall the day for you.

We got to the Day ward early and they got me set up but the nurses were woriied about my swelling ankles.

A doctor was called and he popped in at 12 miday. By then I was being sick.

I had a antihistamine injection and a Vitamin B jab and things calmed down but the Doctor when he saw my ankles and asked me for the history of my kidney said that I have only 75%filtration in it and 95%   Creatinine – Some of the energy for your muscles is derived from burning a substance called creatine. Creatinine is the waste product left after the breakdown of creatine. The kidneys are normally able to filter out large amounts of creatinine on a daily basis. However, when your kidneys are not functioning properly, your creatinine levels will increase.

So he wants me to have a blood test next week and go on a salt free diet. Where he would make a decision about the chemo, whether to give me a milder dosage.

I carried on receiving Chemo but I became sore eyes and face and blowing my nose again by the time Ray came in and the nurses gave me more drugs but said, thats it I will have to have a chemo reassessment meeting, that will be arranged by her today.

I felt so drugged up by the time I came home, we had dinner and I went to bed straight away.

Things are going a bit down hill now and so I will wait while they sort out what to do with me.

You can never say I didnt give my shot at all this.

Ray goes into the hospital today for his eye Op to take the pressure of his eyes –what a pair we are.

http://mesoandme.wordpress.com/2012/03/21/im-a-winner/  rays blog he had a bad day with Internet so he was kept busy

Mesothelioma My Diary written by Ray today

Im going to cheat tonight as Ray has described the day so well.

Im still a bit confused by all that went on yesterday. I dont talk to Ray much as I cant get my head around the Scan results:-

Ray says

Its Tuesday

March 20, 2012 by Raymond

Life’s a bit brighter today. No hospital apps. We had the plumber  come to change the stat on  the boiler. So that’s sorted. I’ve had  loads of calls to the broadband team. it was off at 10.30  and on at 10 to 1 and off at 10 past 1  off on again at 20 to 3  then in and out   in and out again but after some harsh words  it’s on again and its a lot faster than it was not great but  I’ll settle for a connection at the moment.

We went shopping spent a fortune on groceries. got little to show for it.

I am  ready for the early  morning trip  for maves chemo  tomorrow.

My lovely  neighbour Des has offered to  take me  on the 40 odd mile journey to Margate  for my  laser  treatment on thursday. What a Star.

Maves a bit  better settled today after the confusing  results yesterday.

So now we know who killed Frank. It was MUMMY! surprise surprise. Next we got poor ole heather with her brains bashed in by that horrible nasty piece of moronic excuse for a human being Phils son. Shame it wasnt  his mummy what did him in. I cant stand him. Bring back  sneaky Frank.

***

Well I have given Mavis  my first Injection. I made a cockup of the first one. I pulled the wrong end and had the dose  spill over me. I dumped it. I couldn’t risk only giving half a dose. But now I know how it works I will be ok tomorrow for Number 2.

my web is still on after about an hour. I have no faith init  so its fingers crossed .Get things done while its still on.

LOL until tomorrow

http://mesoandme.wordpress.com/2012/03/20/its-tuesday-2/