Living With Mesothelioma -My Diary- Confusion on the way to the shops

I feel I have had a good day, The sun has shone all day, the washing is dried and every ones fed.

The morning was easy as I had made everything shine yesterday so it was easy today as Ray took Louis out.

After lunch we went shopping and I didn’t know I was making Ray loose his patience but I got the geography wrong, I had suggested Sainsbury but we were on the Blean road. I suggested Wincheap then, but then said Oh no we can go to Lidl –wrong road. Ray said Aldi’s so yes that would be great and as we went round the Wincheap Roundabout as it passes the Castle

The Castle

The Norman Castle was a royal Castle built after the Battle of Hastings, no doubt to pacify the locals. It was built a little further east of here on a large mound of earth now known as Dane John. The mound was roman in origin. The castle was shifted to this spot and was apparently in place by 1095. The castle was used as a prison for the County of Kent for many centuries but fell into disuse in the 18th Century. It’s now rather a battered ruin having been used as a coke store for the gas works. You cannot now enter the building because it’s dangerous, but you can walk round the outside. http://www.hillside.co.uk/tour/d167.html

And we found Aldi,s So Ray was happy I had stopped directing him all over the place.

 

I did enjoy going around the shop and bought different things from abroad. German sausages and cold meats and a lot of fresh vegetables and fruit

.

Got home and put things away and sat down in my chair and bang I fell asleep. I have got to get myself on the move but then winter is on its way so I will be snuggling in the warm.

We will be busy tomorrow as the top soil is coming.

Health wise I’m getting some pain in my kidney it goes off but must admit it was a bit naughty when I woke up. Whether another stone is going through again I don’t know but as I have had a scan last week I will be able to ask if anything  is there.

Legs are swollen as usual although I still get up with small ankles  Having a read  and the answer is plain as –Diseases of the lungs, liver, kidney and thyroid can all cause a buildup of fluid that leads to peripheral edema.. Well how right is that, I have a diseased Lung alright and I have a thyroid that has lesions in . This Chemo hits the Liver so I seem to have every reason for sore legs then.

A report today that they are trialing Chinese Medicine At Cardiff Universities is very interesting. This is a great route to go down  I do believe in Herbs

Combining traditional forms of Chinese and Western medicine could offer new hope for developing new treatments for some cancers, say experts from universities in Cardiff and Peking.

Prof Wen Jiang from Cardiff University said they have discovered how a formula of traditional Chinese medicine works to stop cancer spreading.

The universities have been collaborating for two years.

Prof Jiang described the breakthrough as “ancient medicine, modern thinking”.

Experts from the Cardiff School of Medicine joined forces with Peking University in 2012 to test the health benefits of the Chinese herbal medicine called Yangzheng Xiaoji.

Pathway

The formula, consisting of 14 herbs, has previously been shown to be beneficial to cancer patients but until this latest research, the way in which it works had remained unknown.

The joint research has investigated how the formula works and discovered that it blocks a pathway, stopping the spread of cancer cells in the body.

Prof Jiang, the director of the Cardiff University- Peking University Joint Cancer Institute at Cardiff, explained: “Traditional Chinese medicine where compounds are extracted from natural products or herbs have been practised for centuries in China, Korea, Japan and other countries in Asia.

“Although a few successes, most of the traditional remedies are short of scientific explanation which has inevitably led to scepticism – especially amongst traditionalists in the West.

“As a result, we set out to test the success of a Chinese medicine and then consider how combining it alongside traditional methods like chemotherapy could result in positive outcome for patients.”

The professor said the Chinese formula has been shown to be beneficial to patients with certain solid tumours, when used alone and in conventional therapies, such as chemotherapy.

He added: “It suggests that combining the formula with conventional as well as new therapies could hold the key to developing new treatments for cancer patients.

Clinical trials of the combined treatment for lung and other cancers have already begun and were providing positive results, Prof Jiang added.

http://www.bbc.co.uk/news/uk-wales-south-east-wales-24304154

Rays Blog http://mesoandme.wordpress.com/2013/09/30/monday-58/

Advertisements

Living With Mesothelioma -My Diary- Sunday again

breakfast

Its Sunday xx

Another weekend where I have been stuck in feeling so tired. I have another week to get through and then I should start to feel back again and free from Chemo.

I have really really had a good morning and polished the bedroom floor. Well not polish exactly I sprayed WD40 and polished that in with a mop. Did you know you could do that.

http://www.rd.com/slideshows/13-amazing-uses-for-wd-40/#slideshow=slide10

I even cleaned the stainless steel kettle and coffee pot

Once you start  you don’t stop ha ha !!

We had been up again with Louis in the night and he goes mad for grass. I walked him out at 11pm all around the park and hoped he would be OK but no Ray had to take him again at 4.15

Crazy we think its because he pinched a little bit of chocolate although we also found a plastic label in bits so it might have been that.

He is great now after sleeping most of the day and a lambs heart and liver freshly cooked for dinner tonight.

Ray has been tidying in the garden and making a better place for all these dustbins we now have. He did a great job as it involved tidying up his tool cupboard, not an easy job.

I cant wait to be able to do the garden but my bloods are still recuperating from being so low. I haven’t had the result to see if I’m anemic. I suppose I should chase that.

I have been eating all the purple and red vegetables.

So a very quiet weekend is nearly over.

I must get out more

Today might mark a real break through in a Cancer Cure It has given us so much hope

http://www.dailymail.co.uk/health/article-2436733/A-cure-skin-cancer-Doctors-announce-historic-breakthrough-spectacular-drugs-bring-hope-thousands.html

Scientists have developed breakthrough drugs that cure skin cancer.

The treatment is already having ‘spectacular’ effects in seriously ill melanoma patients – and could soon be used to defeat other types of cancer.

One scientist said it was ‘amazing’ that researchers could talk  of ‘using the C-word – cure’ for the first time, while another said trials among kidney and lung cancer patients are ‘very exciting’.

A warrior put the link  on Facebook —and Rod (my Aussie Friend ) said  ” It has hit the nightly TV news services in Australia ……. it ties in nicely with the clinical trials happening in Australia and else where. The genome factor is really what it all seems to be all about. Identifying what triggers reactions and hence how to counter act them within our bodies.
If this is fair dinkum, imagine the lives it will save in Australia – just on the skin cancer angle alone. It really is exciting …….. but most of all it is HOPE!”
Wow amazing it is going round the world so it really must be true.  We get so many false alarms but this does sound good.

Ray has emailed a Professor about another trail here in UK that he had been reading about and didn’t tell me until he had done it. He has really become desperate to help me to find treatment.  The trial is in Leicester but its going to be done local and as stem cells are involved it does sound good. He has poured his heart out so that will be good for Ray feel good.

Rays Blog http://mesoandme.wordpress.com/2013/09/29/sunday-61/

Living With Mesothelioma -My Diary – A lovely ride out, feeling better

Woke to a lovely day if a little chiller now. The hoping mornings from the past.

I did a little housework and pottered but I sat down and fell asleep. Im so bored with that, I want to be able to do so much but my body isnt listening.

I woke to do lunch and then I said to Ray we really should get out of the house and get Louis out as well. We traveled off  along the Faversham road and the signs said road ahead closed. I asked Ray to turn round. No! Mr Stubborn carried on and as 2 vans passed us he thought he was right, we all had to turn round at the next sign he! he!

Oh dear new plans quick –we decided on Tankerton Slopes, where we parked on the front looking over the sea. We got out ans walked but the wind had got up and it was hard to breath, oh no so nothing new this winter, a damaged lung isn’t going to make it easier.

We dropped through the next road out of the wind and down the high street of little shops. I called in the butchers for a sheep’s heart and liver for Louis and some Lamb Sausages and mint for us.

Then we called at the greengrocers for lovely farm fresh Vegetables and  fruit. They have really turned the shop into a little gem. At the back was a cafe where they cook fresh food. I might give it a try soon. We walked back to the seafront but we were back in the wind. I walked for a while then sat on a bench, goodness i feel so old at times. I will pull myself back the real me.

Came home after calling in B&Q for a new rake (Ray broke ours on Monday ) the man is coming on Tuesday to finish the raised bed (it was the pond) I have to start planning how I want it and what plants to put in there.

So health wise Im feeling better, a little pain but Paracetamol takes care of that, tired but power naps take care of that.

Lou  in Australia is doing well between Chemos she is still traveling around on trains this time to see her family. Jan is resting today with her permanent drain in her tummy now. She has been having the rejection of the drain. The body doesn’t like things stuck in, like when I had my drain in for my renal failure at 48. The nurses couldn’t get to me to give me pain killers as they were to busy -I must have kept a ward awake as the pain was excruciating. Well it sounds like Jan has been through the same sort of pain .

Tess is doing very well and Steve is really doing well he is living a normal life in between scans. So proud of him xx

Rays blog —  http://mesoandme.wordpress.com/2013/09/27/friday-65/

Living With Mesothelioma -My Diary- CT Scan Day

The mornings are chilly and you can feel Autumn is just around the corner but as the day goes on the sun still has a lot of warmth in it.

It was a long day waiting for a 6pm appointment at the hospital for a scan.

First this morning I got up and had breakfast -Knock on the door and Louis barking Oh gosh it was the District Nurse to clean my PICC Line.

I quickly got dressed while she got everything ready but I had things waiting for washing up -Oh gosh she really had caught us on the hop. We settled down and she carried on cleaning the Line and putting new dressings on.

I have booked her for next Thursday so I will make sure Im ready.

We tidied up when she had gone. Ray took Louis for a walk, and tidied the garden and took rubbish to the skip.

After lunch I feel off to sleep. I feel so much better in myself but I do still get very tired.

So I rested until at 4pm it was time to go to Canterbury.

We got to the CT Scan waiting room and that’s when a party started. Everyone was talking and laughing and I assumed they all knew each other -I assumed wrongly.

Two women who it turned out they were just doing the 15min wait after the scan  just to make sure you wasn’t going to react to the contrast. They were having such a good time they didn’t want to rush off.

The couple that were there were very funny and the man had us in stitches as we all put the world to rights. Honest you don’t need a government we could do the job just fine.ha ha !!

It really made the waiting go so quickly as you have to spend  and hour drinking 1 Ltr  of water and I was called in.

They were able to use the PICC Line which pleased me although she couldn’t get the cap off so she put it through the cap ??

All my breath in and holds were done and I could go home.

My appointment to see my Oncologists is Oct 24th so I will wait until then for the results.

It is a worrying time. I laid there today and was talking to the machine –please find stable or even better shrinkage would be wonderful. Please please.

Rays Blog http://mesoandme.wordpress.com/2013/09/26/thursday-62/

 

 

Living With Mesothelioma-My Diary- Garden worked on -and Large Hadron Collider might be able to help us cancer Patients in the future

We had a terrible nights sleep. Louis wanted to eat grass and got so panic stricken I was really worried about him. I went out 1.15am and cut grass for him bringing it back inside for him.

He calmed down and then started again at 3.15 so Ray got dressed and took him out and I made a cup of coffee and turned the telly on for a while. Boring !!!!  Gave Louis his Metacam –We went to sleep and Louis calmed right down thank goodness. We went on the net when we got to see what we could do. Feeding him in 3 little meals is one thing so Im starting to that but the little rascal has slept all day long.

Its been a lovely sunny day today and Ray got out and worked in the back garden. It was good to watch him back to his old self and carrying out a project again.

I did go out and do a little bit of weeding but I was still weak so I came back in and made lunch for us. He was so grateful to come in and have a rest.

I pottered around and then sat down and fell asleep as Ray worked in the garden again. We were waiting for a delivery of topsoil -No delivery grrr.

Now he is hobbling with his back bad –Oh dear I knew we should get Garden Squirrels to come and do the work.

cancer

This is great news today I hope they get this into production soon

http://www.telegraph.co.uk/finance/newsbysector/pharmaceuticalsandchemicals/10333903/British-firm-brings-God-particle-technology-to-cancer-patients.html

The collaboration has slashed the cost of proton beam therapy, a type of cancer treatment that fires high-precision beams of particles at tumours, minimising damage to surrounding body tissue.

While the Large Hadron Collider is the world’s biggest physics experiment, its technological advances have made it possible to shrink the size of equipment needed to accelerate protons to the speeds needed for blasting tumours.

Im pleased something really good is coming out of this.

Jan is happy today as they are putting her on chemo, Vinorelbine, and a trial plan into action and its good to see her happy again. Lou is going on with chemo but Gem/Carbo .-Jimmy is going back to Barts for Chemo next week

vinca

 

 

 

 

 

 

 

 

 

We have lost a US Warrior which is so very sad to hear and other UK Mesowarriors are in pain and have their Daughters so unhappy I hope all those suffering with Meso have a better nights sleep My love and heart goes out to all of them xx

430100_332997680078961_1243685156_n

Living With Mesothelioma -My Diary- MY CT Scan Appointment was Phoned to me –Wonderful!!

The day started with me having a great lie in. I felt a little better and during the day I got stronger and found I could walk around better. Ray had to take the car for its MOT so I saw him off and tidied through put some washing on. The day was grey and the sun didnt come out until the Afternoon.

Ray came home elated that the car had got through. Its like going to the dentist you never know what the bill will be. But all was good.

It was rubbish day and they took the bins so Ray got it right except for 2 little bits they gave us back –oh goodness rubbish is rubbish but it has taken over our life’s ??

A phone call from the hospital and I couldn’t believe it the lady was asking me if Thursday at 5pm would be OK  for my Scan. I was going to phone them?? and here she was asking me. It will be at K& Canterbury but I must not eat 2 hours before or drink fizzy drinks. Thats a new one but I had read jan and Tess saying that so I wasnt shocked.

Just shocked that I had a phone call and that the letter will go in the post. The new system must be working better.

I cooked a lunch and rested although I didnt drop of to sleep like normal afterwards. I realised I was really beginning to feel better and Ray said I looked so much better. Phew !! Im getting out of the clutches of Chemo.

I was messaging poor Jan as her Tummy is so full of fluid and as she revealed her story to me I began to see just what rubbish treatment she was receiving in the North East.

(but this is how I ended up paying: I came home from hols on July 6 with a large tummy and trouble breathing. My gp sent me to get an X-ray at bishop. The radiologist came out and told me he thought I had a pe and needed to go to Darlington, my gp was ringing ahead. I went to the admissions ward where they did some tests. I mentioned my tummy being extended as well. A ct scan was organised for my chest as they thought I had a pulmonary emb the next day and gave me a blood thinning shot, sent me home.)

Then she wrote

(A different doctor then tried, he missed completely but left the drain insitu with the hope that me moving around would swish the fluid down to the drain. It didn’t so after 4 hours of pain he came back and removed it. He told me an appointment would be sent out to me to have another attempt. That was July 29 and I’ve heard nothing else from the Nhs.)

If Jan hand’nt of been able to go Private she would still be waiting for an appointment and her tummy would be a horrendous. Size. What we as meso patients dread is that we will get to a point of no return where the Mesothelioma will win. Patients then go down so fast.

I have told Jan she not only has good grounds for a complaint to go through but she should write this journal into a book form.

I public Opologies  For thinking her so negative with her Hospital and so she gives negative answers to Warriors always downing her hospital and treatment -no wonder as she just hasn’t had the great treatment we get from East Kent Hospitals. Maybe she should  move here to the South.

Im collecting up the stories of Patients so I can map out where the bad treatment is and I will talk in my Lung Dog meet in November.

I had a phone call from another Warrior who is loosing her Dad anytime now It is so sad there isnt any cancer like ours for the backing from other patients and carers. Our Cancer is man made and we can prove that as there is so much evidence.

America needs a kick to get it to Ban Asbestos and the work that Linda Rienstein does is going to bring that change.

Watch this Video I have to say its the best plea I have ever heard. A brilliant speech, This is Linda at her best.

http://www.youtube.com/watch?v=Yy6WDZai7ms&feature=youtu.be

British Lung Foundation Issued there updated Take Five to Stay Alive

british

http://www.take5andstayalive.com/

All in all I feel Im back in the driving seat again, In control of my disease and today I got up my ankles where so tiny and the fluid gone so I weighed myself to find I was a stone less in weight,proving the fluid weighs very heavy no wonder my legs dont want to walk and carry all that  Sitting here they are swelling a little but hey!! how can I sit with them up allthe time. Its impossible. Even if I had one of the invalid scooters can you imagine the sight of me going down the road with legs in the air—No nor can I. he he !!!

A man at Malvern tried to sell one like this.

That would be good fun.

Im going to get my breakfast before you think Im really nutty.  Bye

Rays Blog http://mesoandme.wordpress.com/2013/09/23/monday-57/

Living With Mesothelioma –My Diary– The pond has gone

Photo: <3

I didnt write a blog yesterday as the chemo has been very unkind this time. It must be building up and building up and I feel like when you have had a very bad bout of flu when you feel weak and ache.

Ray has been so good and is doing the basic things but I still want to cook the dinner. Yesterday just went with me in my chair all day.

Early to bed though and I slept right around to 9am.

I have taken today very slowly as the Nerve problem in my feet is in my ankles now and up my calf’s.

The man came yesterday to empty my pond and take it away, he is coming back in the week to fill it with top soil. I want to plan it as I can see it from my bedroom window so when the day comes that I take to my bed I will see this little corner of Fairy Tales. pretty plants and the strings of Solar fairy lights as well as solar lights that Ray put there and my lemon tree that was a birthday present from dear friends.

I will enjoy planning this.

I have had a bad day again. The pains are all over my chest even the right hand side but we always say we can feel these pains as the tumours shrink and it has always been true. They have never hurt me as they grow. Thats always been pain free all the years I have had it. So it really could be there is a lot of shrinkage going on. Lifting off the nerves that get trapped for so long.

I will try and go out after dark with Ray and walk the dog around the park , The neighbours wont see me limping around ha ha !!!

Im chasing my appointment tomorrow for my scan I have to get back on track now.

My life is boring at the moment I have to lift my spirits and smile again.

The weather never came that they promised. Anything but a sunny one it has been so cloudy all weekend.

Rays Saturday blog was better than mine

Saturday

September 21, 2013 by Raymond

There we were this afternoon both  fast asleep . Mavis in her recliner me on the sofa Louis on the mat. Telly on no one watching. When ring ring   Louis up barking  doorbell going. Who is it. I open the door and its the man who was going to clear my pond last week. As the weathers good today  he has come straight from another job. I showed them what  we wanted. It took them about  20 mins to  empty my overgrown pond and dispose of the contents. By the time I  next looked there was about a foot of water left but no plants. There were several frogs and even a little tiny light  grey mouse.who scuttled away under a big stone and continued to watch  his home being destroyed. Same with the frogs. I did feel  bad about that but I am sure they will find there way up the road a bit where there is a nice pond for them to move to. By the time they had finished  the walled area where my pond was ,is now  a leveled off dirt filled area ready for some nice top soil which they are going to  do on Wednesday  for me. Then  we can or rather mavis will plant it up. Thats another area sorted. Fortunately there were no longer any fish in it.IMG_0001This is what the overgrown pond was like this morning.IMG_0142This is after the pond was cleared just  a bit of water to drain. So  watch this space.

http://mesoandme.wordpress.com/2013/09/21/saturday-63/