Living with Mesothelioma-My Diary–My visit to a Hospice !!!

We got ready and took Louis for a walk early as he had to stay home alone today.

Ray went to the Bone cracker and the lovely lady on reception nattered away to me and her husband was there and told me he worked at Chatham Dockyard and he had lived in Chatham.

The next road down from my Mothers house and where I lived until i got married. What a small world !!!

Ray wasnt in there very long as he has done so well so it is now just top up care.

We were soon on our way to the Hospice in Canterbury.

I was down on a list so it took a time to find where I should be which was on the Home visiting system.

The lady that was trying to find what list I was on was very sweet and talked to me about the owrk of the Hospice and gave me a tour.

The care Pilgrims Hospices provide also extends to emotional support and practical advice to help you cope.

I was shown the day room which was all very nice.

They have a wonderful Garden with many plants in and they have just laid a path with the names of people who have died on each brick. Sad but so nice.

Gwen came and took Ray and I to a room and I answered all the questions on my health and how I felt. Didnt know that my ankles being swollen from fluid my kidneys cant cope with can infact become infected and leak –not nice. So I will be watching for that.

She told me That quality of Chemo not Quantity is very important and infact if I do have to stop it, I could live a bit longer than if I did have a Chemo that I was so badly allergic to that it makes me very ill.

I have come away with a lot of thought in my head.

Im very well at the moment so there is no treatment that they can offer me –until the tumours regrow and then I can see they will be able to sort all the painkillers etc etc.

I have stated I want to stay in my own home and she said thats what Im under the visiting nurses.

Another question she asked was about my being resuscitated –Oh dear !! my answer was Im sure Ray can be trusted with making that decision for me . He will know if I should or shouldnt  be resuscitated.

Im sure we can sort that out nearer the time.

Dont we have to talk about such awkward things.

I can see that Ray can find some help but I believe he can also help with the experience he has had as a Carer.

I have an appointment for a months time to discuss the results of my next scan and thats how we will go on.

I will sort out anything that is nice that they do. Yoga etc etc and if i can help on fun days I might join in but I dont feel ready for all this -but I might not have a choice if my scans say growing back.!!!!

Jubilee Weekend lays in front of me –I need some fun fun fun.

Rays Blog http://mesoandme.wordpress.com/2012/05/30/hospice-day/

I just have to put this on here —

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Living with Mesothelioma –My diary– A sad Anniversary today, so a thoughtful day.

Its been a weird day where I feel very quiet and thoughtful and the realised its the Anniversary of my Daughter Christine. She was killed in May 1978. Such a long time ago and yet I remember every detail so clear.

http://www.rayandmave.org.uk/html/christines_story.html

This is the painting Ray did of the photo she had taken on the day before her “Accident” It was the day she left school and had a job to go to with a Magazine Company on the Monday. She never went there but they bought a wreath for her funeral. A very nice thing to do.

Our lovely Daughter who s missed so much. xxx

So I just have not done much. Just a little housework and cooked the meals, walked Louis and just sat around —remembering —–

Tomorrow I go to the hospice so I think thats playing on my mind as well. I will be fine once I know what all thatis about and how I will fit it into my life.

Rays Blog http://mesoandme.wordpress.com/2012/05/29/tuesday-6/

Living with Mesothelioma -My Diary -Louis has a hair cut -I wasted visit to the GP for me.

I had to get up and have breakfast early and shower and dress as Louis had the hairdresser coming. Cut and blow dry and nails.

Ray took him to the mobile van when the lady rung to say she was in the car park.

After a few moments Ray came back as he couldnt bear to see the poor lad looking at him through the wire door, pleading eyes that begged to come home again.

We had a phone call when it was all over and Ray went to get him. I went to the gate and Louis bolted up to me and ran straight in doors.

The lady said he had been and angel which is amazing as he is so nervous but there you are she must have the knack. Thats why we like her cutting his hair.

whos a good looking boy xx

We have bought a training collar with a box that makes a noise when he barks 3 times. It is working and we have a much calmer dog now. The only thing is it goes off when the other dog barks so Louis is being trained for their barking –thats not fair ha ha !!

I had a phone call from the British Lung Foundation as they want Ray and I to do a interview for a Sunday Paper that will tell the story of a Carer and how we cope with Mesothelioma , I have agreed we would do it, I told Ray what was planned. That poor husband of mine just helps out wherever he can so he doesnt say no –bless!!

What an angel he is xxxx Never moans what i lead him into or all the running round he does xx

I did managed some gardening this morning which was lovely in the warm weather. My neighbour Dave was also out cutting the grass so it was nice to have a chat.

After lunch we took Louis for a walk as I had a Doctors appointment which we went to. My Oncologist said she had written to my GP to tell him I have to go on Warfarin .

The GP said it isnt that easy and I have to go under the hospital, watch a video and have checks each week until it settles down and runs smoothly.

I wasnt told this before so now I have to wait for appointment’s to be made. If I had known this earlier I would have got it sorted before!!!

So I have another prescription for more injections so that I dont run out.!!!

Dosing

Dosing of warfarin is complicated by the fact that it is known to interact with many commonly used medications and even with chemicals that may be present in certain foods.[1] These interactions may enhance or reduce warfarin’s anticoagulation effect. In order to optimize the therapeutic effect without risking dangerous side effects such as bleeding, close monitoring of the degree of anticoagulation is required by blood testing (INR). During the initial stage of treatment, checking may be required daily; intervals between tests can be lengthened if the patient manages stable therapeutic INR levels on an unchanged warfarin dose.

When initiating warfarin therapy (“warfarinization”), the doctor will decide how strong the anticoagulant therapy needs to be. The target INR level will vary from case to case depending on the clinical indicators, but tends to be 2–3 in most conditions. — So now i know.

We came back home as the skies from the west were very black as if we were going to have a storm but we seemed to have missed it and we have a lovely sunset.

RAYS BLOG http://mesoandme.wordpress.com/2012/05/28/monday-4/

Living with Mesothelioma My diary. A very crowded day in Whistable.

this is the very popular coast of East Kent

Basking in the sunshine today has been wonderful but so hot.

Even Louis seems to be to hot to do anything today so we decided to go to B&Q but wished we had stayed home. The Hill into Whitstable was bringing so much traffic into the town so we had to turn left as it would have been impossible to right and cross over the road to go right.

Whistable is so poplar for its fish Restaurants and the oysters that grow here.

http://www.whitstableoystercompany.com/

We got out of the flow as soon as we could and traveled to Tankerton but there wasnt a space to park anywhere,

We parked in B&Q and that was packed as there was a sale of plants on. Ray came back out and said the Queues to the till went right back down the isles so we left it and went for a walk all around the trading estate.

Louis was off lead and we played ball in an empty carpark.

Back to the car and Ray found  B &Q emptier so he went shopping and Louis and I sat with the car door open

Hurry up dad!!

We soon drove home and had a refreshing drink and lunch in the garden.

We lazed around and the Sleeping bags that I had washed earlier were bone dried so I folded them up and Ray took them back to the Motorhome.

I have had 2 letters to make an appointment -1 is for a breast cancer scan and one is for a 5 year health check.

Why arent my details up to date I wonder as I dont need anymore scanning as that area has been photographed so many times and a health check ??? come on I think my blood preasure etc etc has been checked to many times as well in the last 3 years.

I wish I was that healthy that I need the checks but I will phone up and tell them dont bother and put some other needy person in my place but please keep up with my notes??

Rays Blog  http://mesoandme.wordpress.com/2012/05/27/sunny-sunday/

 

 

Living with Mesothelioma –My Diary –A lovely hot day and we had a good day

Oh dear Im watching the Eurovision Contest –Hump gave me the Hump Im afraid and the rest arent any better.

http://www.youtube.com/watch?v=u7waUlb7FGk  Jedward are my Fav ha ha !!!

They remind me Life is fun and we should all play sometimes and not take life so serious.

Ray has pinched the telly in the lounge so Im here in the Den with my telly on and writing this blog as well.

It has been a wonderful sunny day and so hot. We went for a longer walk which I did very slowly taking my time but I got round and Louis is better for a extended walk.

Camera shy

Lovely not to be in a coat.

He came back indoors and we didnt see him all day as he was shattered. I also had a snooze after my lunch. Always the best sleep, 40 winks after lunch really refreshes.

My Son and daughter in law phoned and we realized we hadnt let them know the result of Rays Scan–how cruel can we be. I think the hospice phoning me to make the appointment next week has over ridden everything.

Any way they forgave us and they are visiting us at Hamble next weekend which is very exciting as they know all my friends that will be there.

I getting lots of pain in my back and in the bottom of my Lung so I think there is more shrinkage going on –I hope Im right.

Im very stiff legged and know I have over done the walking but I want to build the strength up as what with the sun building me up with its warmth I should be in good condition to get through another winter.

Debbie and I want to get to 5 years as only 5 -10% do and we want to be in that percentage and have a party then head for 10 years

 

http://mesoandme.wordpress.com/2012/05/26/sunny-saturday/  Rays blog

Living with mesothelioma -my diary -Bunting buying for the Queens Jubilee Party.

Wow it has been a very warm day right from the start today and we have been shut in decorating. How silly is that.

We always have chosen to do things on the hottest day of the year as I always remember Ray putting a greenhouse up when Princess Di married Charles and it was a hot day that day.

But we have worked together all day and I have managed to do some painting.

We also went shopping for Red White and Blue for the Jubilee party next week. I have Bunting now to drape all over the motorhome and flags to put around.

I have to sort something out to wear now in red white and blue.

I do remember the Coronation as I was sat in a friends house with my Mum and Dad and younger brother. We were all sat around a 9″ black and white Telly. I thought it was a magical day and I was enthralled with all the slender of the day But that was 1953 and we are celebrating the day the young Princess became a Queen in 1952. I do remember the queen coming down the steps of the plane it seemed such a sad day as her Father had died while she was away.

01/04/1944 of King George VI with his daughter Princess Elizabeth

Now we will celebrate the long reign of this dedicated woman who has spent her life serving her country.

http://mesoandme.wordpress.com/2012/05/25/friday-again/  Rays Blog

 

 

Living with Mesothelioma –My Diary– A hot day, a dead Spider, and a call from the GP

Today when I got out of bed and came in the Den to open the Computer. I went out in the passage ans saw a huge black blob–Louis had killed a spider in the night.

It must have been huge when alive as it was very large dead.

It is next to a 10pence piece here ekkk!!

Louis is my hero today.

I did the washing after we changed the bed as it was a lovely day already so knew the sheet would dry very quickly.

I had a call from my GP who said he has had a note  from the hospital to pass me over to the Hospice Nurses now and they will guide me through from now as Im listed as no more treatment, I did know that as my kidney will not take anymore chemo let alone the rest of my body as I have been so allergic to it.

I thanked him but it does make you think that they are giving up on you.

I went to Lidl’s for some shopping therapy.

It was so nice out and we enjoyed Tankerton for Louis walk and then took his for a walk at Lidle’s as they have a lovely walled grass walk for him. We parked the car in the shade 

Back at home we had lunch and then the phone rang and it was the Hospice so I have made an appointment for nest Tuesday to see their facilities and have a long chat about how they will do my pain management as Im listed as no more treatment —-oh dear. 

Ray phoned for the results of his X Ray and he has a very clear lung. Isnt that amazing as he worked and played with Asbestos so it really is down to a Cancer Gene as I have been told so many times, we have now proved that I think.

It is wonderful news that he is free of it as I didnt know how we would cope with any more bad news. Now he can carry on and be my carer and enjoy life with me. And keep driving the Mortorhome wherever I wish to go ha ha !!

My second home and my salvation as I can go away when the going gets tough xxx

We sat out in the back garden but it was to hot so came in doors. We wait ages for this weather and then its to hot –reminds me of a poem my Dad kept saying.

As a rule a man’s a fool

When its hot he wants it cool 

When its cool he wants it hot

Always wanting what is not 

As a rule a mans a fool —-

http://mesoandme.wordpress.com/2012/05/24/xray-results/ RAYS BLOG