Mesothelioma-My Diary –Week 3 day 5 of the Chemo and Drug Trial. –camping shop and tyre workshop visit.

I got up 1 hour to early as I haven’t put the clock back in the bedroom -silly me.

I had breakfast and a shower when Rod Skyped so Ray took the call and the two men had a long chat.

We went out in the car and wished we hadn’t as Ray found a screw in the side wall of the Tyre, a very weird place to find one.

Lucky we were going to the camping shop at Whitstable and there is a Tyre workshop next door.

We went into the camping shop and bought a fire bucket for the C&Camping Club rallies as they like you to have one out.

Also bought a new water carrier as i love fresh water for making tea and coffee, the water from a tank always has a taste to it although this is always a topic of conversation with Motor Homers, some say they cant taste or smell it but I always can.

From there we took the car to the tyre workshop and the man took the screw out and there was a shhhhhhhhhhh as the air escaped.

He couldn’t patch that up so a new tyre it was.

Ray, Louis and I walked through the high street while we waited, we called in at what we thought was a new art shop and lessons were being held ha ha !! so embarrassed as we disturbed the budding artist’s.

shhhhhh!!!

We walked on and called in at the bank and the butchers and also the pet shop, with shopping down we went back and collected our car.

The car is up in the air

Back home for lunch and a nod off as I was tired out by then.

I woke up and then my son phoned to see how I was, he cant come to terms with the fact Im on the trial and asked “But will this take it all away”  How can I keep saying that this is still palative care as there is no cure, how can I keep breaking his heart, bless him he wants me cured and back to normal. Life can be so cruel.

I have pushed the boundaries now to over 3 years so I have been very lucky with the treatment I have had so far.

Ray has been painting away so he is back into his art again which I love to see.  He needs to have his hobbies to take his mind off things.

http://mesoandme.wordpress.com/2011/10/31/a-screw-loose/  Rays Blog same story different way of telling it ha ha !!!

Mesothelioma-My Diary Week 3 Day 4- All the fun of Halloween, witches and broomsticks.

I have had a super weekend if totally tiring weekend, but hey you just have to “go for it” sometimes.

We spent Halloween at the sweetest little Infant and Junior School, well they call it Primary School nowadays at Cliftonville

Saturday we had a nice walk around Cliftonville and it was so mild.

A little Activity Centre fills the play Ground up

The playground is full of Little play things

The sea view from the school

The Boat was all lit up at night and it looked like a Liner at sea but was infact a dredger

In the evening we had a Halloween party with music, dancing and lots to eat

Us with our friend Lorraine --who won the Competition-My goodness I wish I had recorded he wicked laugh it was enough to frighten anybody.

This is a Photo as Lorraine gradually painted her face

How Lorraine looks in real life, it was so difficult to see that when she had the paint on

All the witches flew on saturday Night

We put the hour back last night so I had a good lie in.

The weather was still so mild as we had another walk around today and played with Louis on the green in front of the school aver looking the sea.

We went into coffee morning where we talked about all the new rallies of the C&CC for 2012 and so next year is full of more fun for us and  my friends.

We got home and I zonked out again after dinner I was worn out, it must be all the laughing and talking We do but it was a good weekend

 

http://mesoandme.wordpress.com/2011/10/30/home-again/  rays blog xxxx

 

Mesothelioma, My Diary. Day 2&3 of Week 3 Drug and Chemo trial, camping weekend

We are rallying at a lovely little school at Cliftonville, right on the seafront, and the view is so nice.
All so peaceful and quiet and the weather is very mild, if a little cloudy.
when we got to the Motorhome yesterday to drive down here, I had left a carton of milk in the fridge and it had blown in all the heat we have had since September and I hadn’t been down as I have been wrapped up in Medical visits.
Gosh it was a mess and we had to have a fridge cleaning exercise before we could drive off. I won’t be doing that again that’s for sure.
The drive down was very good as it was gone 5pm so we arrived in a great mood raring to have a great time with our friends here.
We had a long chat and a laugh last night in the hall and all went to bed so late that I slept in this morning, which was lovely.
We took Louis for a long walk and found a shop to buy snacks for tonight’s Kentish Supper and Halloween party.
I’m doing very well today as today is a good day.

– Posted using BlogPress from my iPad

Mesothelioma My Diary- Week 3 day 1 drug only trial– what a wait.

Drug day today so had to make sure the dog was walked early and I was (according to Ray to my friend ) in a bad mood. I hadn’t realised I was but I think I might be.

I feel so wound up for some reason. I didnt mean to sound awful to Ray but I said ” I have cancer which Im trying so hard to find a treatment that can work and Im taking all these crap drugs into me. Of coarse Im in a bad mood. I cant be an Angel 24 hours a day every day. Im so fearful sometimes.

My friend had come to see me to make sure Im ok and she gets a domestic –you can tell she is a good firend and she made me sit down and tell her what is really getting me worked up.

I said I just want to walk away from all this illness, to be able to cope again and run my house like I used to.

She being wonderful soon had me laughing again and I walked down to the car and saw her off and we traveled to Maidstone, with me feeling like a naughty girl that had thrown a strop.

By the time we arrived at Maidstone Hospital with me in a better mood.

I booked in and then waited an hour before being called in. I was welcomed by the nurses’s and sat in the chair—I had forgotten to take my Paracetamol on the way to hospital so I had to be given those.

The drug was put up and the connection put in my wrist.

Like last week the syringe wouldn’t fit into the machine or it wouldn’t be accepted by the machine.

It took and hour of trying and then they realised that the syringe was to small and not made by the same company that the machine needed, so as to fit.

The other man down stairs in Charles Dickens ward (he is on the trial with me) had the right Syringe so thats when the penny dropped so the very clever nurse wrapped gauze around mine and low and behold it worked.

Poor Ray it would mean I would be leaving him for 2 hours so the nurse contacted the front desk to get Ray with me, we didn’t realise they would say why i wanted him and scare him.

So with Ray knowing and me settled down, an hour went by as the drug dripped into my vein.

The lovely garden where it will be nice to sit on a warm day.

So that was it I was disconnected and ready for home but it was 4.30pm –such a long time tired but feeling so much better.

We got to the carpark and off to home  and Dinner.

No Chemo tablet this week I have a week free– thank goodness maybe I wont be so tired –yawn ahhhhhh!!

 

Rays blog http://mesoandme.wordpress.com/2011/10/27/computer-happy/ I keep saying sorry and he says now stop that xxx

Mesothelioma My Diary –Day 7 Week 2 of trial Chemo –I got wet and angry and my shoes squeaked

Rays Blog http://mesoandme.wordpress.com/2011/10/26/you-have-reached-3000/ bless he has to be so patient with me xxx

Wednesday —

It rained all night on and off so the morning came as a nice surprise as the sun shone.

Ray’s computer was ready for collection so I decided to  do some washing and then we could go to collect it and take the dog for his walk.

Now i have been wearing flip flops all summer so my toes get soft and I hate wearing shoes as they make my toes very sore and they have to harden off.

So i put the washing out on the line and said. Oh the weather is lovely lets go now and I wont need a coat or shoes. The traffic was horrendous as we drove into Whitstable and so it was taking so long to get to the shop where they have a private car park at the back, that Ray drove round to a car park by the harbour.  That doesn’t matter, I said, we can walk back from here —then the heavens opened. It poured down and I looked so stupid walking along in flip flop’s and no coat.

I swear I will never do that again, as my sense of humour went down the drain with the rain. I just hoped nobody was looking at my feet.

we got o the shop and ray picked up his computer and we quickly walked back to the car. Although it stopped raining my feet squeaked in my crock flip flops.

http://vimeo.com/77396

We got back home and had some lunch and then i slept so much again. I hate this sleeping. It didnt matter on Chemo 1 as I was being so sick and so it was great to sleep but this time this constant tiredness is not nice.

We took the dog for a walk late afternoon and the weather was good again but the clouds were rolling in again

We did manage to get round this time without getting wet and thank goodness.

 

http://www.politics.co.uk/opinion-formers/voice-the-union-for-education-professionals/article/voice-juac-calls-for-a-national-audit-of-asbestos-in-school

A very interesting article was published today covering Asbestos in Schools which is a subject Im very interested in.

The Joint Union Asbestos Committee (JUAC) calls for a national audit of asbestos in school buildings after figures from the Health and Safety Executive (HSE) showed that of the small number of academies inspected approximately 60% had enforcement action taken against them for failing to adequately manage the asbestos in their buildings. Government estimates are that 75% of all UK schools have buildings that comprise asbestos containing materials.

JUAC Chair, Julie Winn, today said:

“Figures from the HSE suggest that there is a significant problem of asbestos management in schools. Of the relatively small sample of non-local authority schools inspected by HSE approximately 60% of the academies, 32% of the independent fee paying schools and 22% of the non-local authority schools had enforcement action taken against them. We simply do not know the true extent of the problem; this could just be the tip of the iceberg.

“The Government accepts the recommendation from the James Review of Capital Spending for there to be a national collection of data on the condition of all school buildings in the UK. JUAC believes it is vital that this includes an audit of the extent and type and condition of the asbestos in UK school buildings.

“JUAC agrees with the HSE’s recent conclusion that raising awareness around asbestos produces benefits to dutyholders and workers is in fact a key component in the AiS* and JUAC campaign. Raising awareness and improved training in the management of asbestos is fundamental to health and safety in UK schools containing asbestos.

However for the HSE to suggest that most schools have adequate arrangements in place for managing asbestos in the absence of a national collection of data on the condition of all school buildings which includes an audit of the extent, type and condition of the asbestos within them, is like saying what you don’t know can’t hurt you.”

Further information:
HSE press release of 14 October 2011 and summary of findings
Contacts:
Voice Press Office
Email: pressoffice@voicetheunion.org.uk
Voice Solicitor David Brierley
Email: davidbrierley@voicetheunion.org.uk
Tel: 01332 372 337
www.voicetheunion.org.uk/asbestos
JUAC Chair Julie Winn:
Email: julie.winn@morrishsolicitors.com
Tel: 0113 245 0733
*Asbestos in Schools (AiS):
www.asbestosexposureschools.co.uk / www.schoolasbestosaction.co.uk

Mesothelioma Diary– Day 6 Week 2 of Chemo and Drug trial —Bloods taken today and a wild time getting to the hospital.

I had a lovely nights sleep last night and I thought I wouldn’t after sleeping all day. I must have needed to catch up.

We took Louis for an early walk so that we could shut him up as we went to Canterbury.

I had to go to the Vampire session at the hospital and I said to Ray we can go up to Bridge and Park up at the New Dover Road park and ride. Well we came off the A2 at bridge and I turned Ray to the left and it should have been to the right, so we ended up  going past the Howletts  Zoo

It was packed and of coarse it was half term

October Half Term Fiendish Fun!

This October half term Howletts Wild Animal Park will come alive with special Halloween events and educational activities. Join the Pumpkin Trail as you search for clues around the park and find out some scary facts about our animals. Take part in our Animal Enrichment programmes as you get the chance to prepare animal feeds with a Halloween twist and more fun activities!

Pumpkin Trail – Search for clues around the park and find out some scary facts about our animals

Animal Enrichment – Prepare animal feeds with a Halloween twist*

Creepy Crawlies – Get up close and learn about some of our bugs*

 

Looks good but we had to get to the hospital and ended up doing a 20 mile trip as we traveled along to the Deal Road and back into Canterbury to the Wincheap Park and Ride to park up and get to the hospital, I said to Ray are you still talking to me xxx

We finally made it and had my bloods done in 5 mins –so quick after all that time we spent getting there. I have looked on global earth and can see where we went wrong.

Well we went out side and caught the Bus back to the Carpark and went shopping in Morrisons and boy was that packed. So many Mothers and children so packed and noisy it was hard as I dont know the shop well and as I didn’t know where everything was I was getting lost here as well.

I did what I could and siad to Ray I have had enough lets go so we paid for the goods and got out fast.

So many children and so many little hands touching things I get worried about germs while my resistance is low with the Chemo, thank goodness I have had the flu jab.

Traveled home, talked to my friend Sue about her Mum and how she isnt getting on at the hospital as they are always mucking up her appointments, bless then we came in doors and put the shopping away.

the weather had been lovely, such a warm day as the sun has so much heat in it still.

I cooked a dinner and watched telly and then took Louis for a nice 5pm walk which he appreciated but now at 6.30pm there is a thunder storm and very heavy rain crashing on our roof.

Snuggle down now and have a lovely evening

Rays blog –gosh he tells the truth xxxhttp://mesoandme.wordpress.com/2011/10/25/frightened/

Mesothelioma Diary Week 2 day 5 of Chemo Trial — ZZZZZZZZZZZZZZ slept all day.

Well I haven’t much to report today as I got up at 4.55 am stayed up and did try to have a sleep in the armchair but couldnt.

Answered all my emails had breakfast and that was it all I have done all day is sleep.

I have finished my Steroids so whether my body has made up for the hype  they cause I just dont know.

I woke up for a shower and we did take the dog for a walk, came back had a lunch and then Zonk zzzzzzzzzzzzzzzzz

Woke up now and again then zzzzzzzzzzzzzzzzzz all afternoon.

I think my body is making up for all the sleep lost since I started the Trial.

I finally came around at 4.30pm and cooked a great dinner of Pork Chop, onions, jacket potatoe, corn and green beans and apple sauce.

So I still have a good appetite and I have come round this evening and more awake now. Hope I can sleep tonight now.

I have got to have my bloods done tomorrow at the Kent and Canterbury Hospital so I should be more awake then –we will see.

http://mesoandme.wordpress.com/2011/10/24/day-off/   Rays Blog for today

PS

Just had a funny time with a very bad pain in the Lung –sweat and put a cold flannel round my neck. When it died off i told Ray to make me a coffee— Ray made me a coffee and I took pain killer –oooo is this the drugs and Chemo working. Feel very much better but have been told off by Ray as i didn’t tell him as i didn’t want to worry him. xxxxxx

Mesothelioma Diary — Day 4 week 2 of second Line chemo and Drug trial –a visit to the Apple Festival.

http://www.brogdalecollect

http://mesoandme.wordpress.com/2011/10/23/brogdale-today/ions.co.uk/ rays blog as well xxx

http://www.brogdalecollections.co.uk/seasonal-recipes.html

It was Brogdales Apple Festival today so we had a breakfast and went out early to have a wander around.

We had taken Louis so gave him a good walk around the very large fields of Car Parking first but it wasnt until I got back home they don’t like dogs there, but we had only gone into the Car parking and onto a track that went off site so we were sensible anyway.

So many different apples on show and we were able to buy lots of apples.

So much to choose from

We carried away our shopping and it had made a nice change and a very interesting place but so many people as it was very popular.

We had Lunch and then I caught up on a lovely 2 hours sleep as Im waking up so early 4am this morning but I have finished the Dexamethasone -Steroids so hopefully I will sleep better at night now.

I had just dropped off when a neighbour came to call to see ray to Copy a Solicitors letter for him, 11 pages so Ray could then email it to his Daughter. When it comes to Computers everyone seeks Rays help –bless.

Pain isnt to bad in fact its more sore now with a darting sharp pain now and again. All tolerable though as you pray its the Chemo giving doing its work.

Made dinner of steak in red wine and now settled to watch the results of Strictly Come Dancing and X factor then Downton Abbey so another week gone by.

Mesothelioma Diary Day 3 Week 2 Chemo and Drug Trial –MCC Kent AGM all done and dusted, a visit to a garden centre

Didn’t sleep at all last night as I was having Chemo burn I think the sweet was pouring off me and yet my temperature was normal.

Poor ray couldnt sleep as I was making him hot as well so got up at 2.30am and made a coffee and took 2 more painkillers–begin to see how people over dose as it is easy when you are desperate to sleep.

Went back to bed with windows wide open and did get 2 hours sleep so got up and chatted to Kat in Aussie land.

She has never seen snow so I sent photos of ours last year.

We the had breakfast took Louis for a walk and went off to the Kent MCC AGM where it was lovely to meet our old friends that i havent seen for some time now.

It was a nice friendly few hours and we were soon able to leave to go to Knot Cutts Garden Center to have a look around and also found it was opposite the Crematorium where I have to  go for Ronnies Funeral 3rd Nov.

http://www.notcutts.co.uk/Plants/S/C

The Garden centre was packed and we could not get a table for lunch so we carried on to the Services at Junction 8 of the M20.

Then it was back home for a nice Coffee and I fell asleep for half an hour.

Took Louis for another walk and I feel human again.

My Lung is very very sore today though a real ache but a little funny at the AGM a woman saw Ray and didn’t see me and she was so embarrassed to ask where I was in case I had died so she was so pleased when she could see I was there –good job she didn’t say anything bad about me ha ha !!!  bless. Everyone was pleased to see me there and to know my Trial is going so well.

Rays Blog xxx http://mesoandme.wordpress.com/ my carer

A mesothelioma Diary –Day 2 Of chemo trial –A lovely sunny day again and a peaceful day

I had a great sleep even if I did wake at 2.30am and went and looked at the world all quiet. I miss my next door neighbour that died just recently, as he would be out there in there sitting in the garden where he was having trouble breathing in the heat of his bedroom.

I would tell him to damp his face with water  and fan his face.

We used to have a little whisper then go indoors again where we both carried on sleeping.

So now Im on my own in these little trips to the garden and came back in and slept till 5.45 am so I stayed up and had a chat to Australia to Kat  we had a laugh until I got my breakfast.

Colin the Aussie friend that visited us put this lovely message on Kats F/B when i said she should smuggle over here to see me.

 

I managed to do it, therefore it is easy, just hop on a plane! Thanks again for the wonderful tour, insight & fellowship.
Mavis & Ray are a rare partnership of two people sharing the journey together, each is there for the other both taking turns in sufferer & carer roles as needed. Thus they have a deeper appreciation of each other’s needs & feelings. A level of understanding that comes from seeing each other’s viewpoint from a personal perspective as well as an observer’s. This depth of understanding is not possible in a normal carer/sufferer partnership, although Rod & Julie came exceptionally close. ♥♥♥ ((((HUGS)))) XXX No arguments/confusion/mis-understandings when you are both on the same page, just PURE PEACE, COMPASSION & LOVE!

What a lovely thing to say xx

A Beating Heart --thanks so much xx

My other lovely Dave came in to see how i was doing on the Chemo  and to borrow my Argos Brochure as he was going on a shopping spree , we always have a great laugh together and we always take the mickey out of each other, he is a great neighbour.

Then we had a light lunch, another homemade soup, and then off with the dog, first we had to collect a parcel that had been special delivery and they couldn’t as I was out yesterday.

It was a belated Birthday pressie from the desert, from Bill, as if the flowers were not enough. This was a 1Tera Byte external hard drive, full of films he has been downloading for weeks. That man is piling me up with pressie’s but dont worry I will think of something Nice for Betty and Bill for Xmas.

And

Betty has a birthday coming up he! he!

We carried on and walked Tankerton Slopes and it was lovely and sunny and yet the day had started off 1 degree under and very frosty. I couldn’t walk very far as I got tired and achey  in the back and arm, but Louis had a real good run around.

Hmm I used a dog bag and then through Louis ball in the dog bin instead of the bin. I stood there and couldn’t believe I had done that,  Yes!!!! for one moment I thought of putting my mind in and getting it, then I thought differently and left it in there and threw the bag in. (but I suppose Ray has told you already hasn’t he) snitch!!!

Back home we had a coffee and a piece of Walnut Cake, then sat and had a lovely rest watching telly doing as I was told by everybody–not to overdo it.

We made dinner of Special Cumberland sausages  mashed potato, mushrooms and baked beans and gravy, real comforting

So a good day if a tired at times and this ache feeling but the Chemo is working again I feel so sure of that. I seem to be doing OK

http://mesoandme.wordpress.com/2011/10/21/just-a-normal-friday/  Rays Blog he he !!! he didnt miss my little trip to the garden at 2.30am

he! he!