Mesothelioma Survivor My Diary My Rally at Hamble,Fun and raising money

Still at Hamble enjoying a great Rally.

We had another very entertaining evening with Bingo, Dancing and Singing and a Cheese and Wine Party so all in all a very good Evening which carried on outside my friend,s Chris and Clair,s RV. Until the early hours as it was still quiet warm last night as the wind had dropped.

Today we got up and Louis was socializing again with all the dogs around us and their owners standing in a circle as Dennis had said let him off the lead and allow him freedom. his I did and he had a great time playing. We then set off for a walk to the Royal Park through woods and to the waterside, where every dog louse passed without a fuss, I gave him a treat. this is really get fun bless him!
we walked back to the School only to find some of our friends getting ready to go home as the have to go to work tomorrow, the price to pay for being younger than me ha ha !!
Ray and I have had a nice snooze to catch our strength back and are now just relaxing as it is raining.
I have raised 252 pounds with the Raffle and donations this rally so the funds are growing for Mesothelioma UK my friends in MHFacts are really backing me on this Charity Year.
when I get home I will load photos on as I don’t know how to do that yet on this IPad but I will learn.

Mesothelioma Survivor My Diary Camping at Hamble.

We traveled down to Hamble yesterday and the journey was so fast as we had set off at 7am which meant the roads were clear all the way. When we arrived everyone was here already so we had a lot of welcomes, which was so nice.
everyone was so interested in how I was and in the trial so I spent a longtime chatting and explaining how it will work.
We had a good time with Louis as he meet all his friends again and had a ball chase with them so he was a happy bunny.
The evening was brilliant as we had an American Supper and a live singer, Kenny J, and everyone was singing and dancing so a great time was had by all.

Mesothelioma Survivor-My Diary My trip to London

It has been a brilliant tiring mad day so where do I start –at the beginning I think so dont you.

It started with taking Louis for a long walk as we knew he was going to be shut up for a long time but we give him loads of chews and water and he really is happy at home but i think he just site and waits.

So we set off to at 11.45 to catch a train. Parked the car in the Station car park and bought the tickets. This time it only cost £56.00 and we got the Victoria train this time so it seems to make a difference.

The train arrives let the journey begin

Arrived at Victoria 13.37

Underground to Mansion House

Then we arrived at St Barts as it was early we had a lovely Cappuccino.

Then I went and booked in a reception and sat done and waited. people were fidgeting and saying they had been waiting ages but I was called and the nurse weighed me.

Sat down again and then it wasnt long before i was called in by DrPeter Sziosarek  who was such a young handsome Doctor–I was happy and believed in him already ha ha !!!

We had a long chat about me, my treatment and the ADAMS Trial. I said Ray was worried about the fact that not all the people on the Trial get the ADI-PEG 20. 66 Recruits and only 44 will get the drug the ones that dont will get best supportive care only so they then compare the results and this will prove the trial works.

The Doctor looked at my scans and only the January scan is on the screen but the tumour measured 4cm so if it has grown that again he said even he wouldnt recommend  Chemo again at this point because each time you have it the less efficient it becomes so as Chemo has really worked before and the tumour is small  he would wait anyway.

The trial means I will have more Scans, and Pet scan’s, blood tests for Liver function than I do now so I feel I will be so well looked after.

I have signed for them to do a test on my Bi-Op taken in 2009 and a nurse has taken loads of blood and would I do a urine sample–well I tried and tried but I couldnt so I gave them the little bit I managed but she said she had 4 tubes to fill up. So I drunk 4 cups of water and finally i was able to do a bit more so they got their sample.

An appointment has been made for 22nd June and we said our goodbyes

We have really taled it over as we walked back to the tube station and traveled back to Victoria and our Margate train was  cancelled so we all squeezed on to a Rochester train where a fast train came in and we all squeezed on again. I dont know how people do this day in day out it is a mad world to be in.

We called at Tesco and bought a take away curry which was so easy to heat and must admit I love all the dishes they pack into the bag and so easy to heat in the Micro Wave.

Louis was so pleased to see us bless!!

Mesothelioma Survivor My Diary –a crazy day when nothing went right.

Today has been a weird day it started when we got up and had to get ready to go out to take the car to its MOT.

Now that sounds easy but–I wasnt going to go with Ray but I changed my mind and said we could go around the market while we wait for the car.

We bundled Louis into the car and drove to Whitstable through a lovely empty High Street, apart from two huge lorries parked one in front of the other, one delivering to Iceland and one a dray delivering to a Pub, this created a jam as we tried to pass them in one go and people coming the other way would not slow down to let us do it in one hit.

We arrived at the Garage where I left Ray and just walked about looking at the cars for sale.

Ray came out and said it wont be ready for one and a half hours. We walked to a grass bank for Louis to have his sniff around and then walked to the market.

It isnt much these days as there were not a lot of stalls. Not like the old days when it was a really good bustling market.

We didnt stay here so went to catch a bus to HerneBay but we just missed one so I suggested going home and wait.

No Bus to Seasalter yet so I said lets walk home. Ray said will you make it and I said yes of coarse I will give it a try. As we walked through the High Street a bus came along so we got on it but the driver said it was to early to use our pass and guess what we had no small change on us.

So we got off and carried on walking, it started raining then on and off and the wind got up. it is only 2 miles to home from Whitstable, but I kept walking like I was drunk as I got more unsteady, Im sure I should take a stick for balance.

We got home at last and then guess what –Ray said- oh no Iv left the door key on the ring with the car keys, well you know what its like after a walk and you get home —help I need the bathroom.

I went to Dawn and asked to use hers, she thought I was mad until I explained myself. her son said I will sort it and dashed off.

Dawn and I went round to my house to see what was going on and nobody was there. The door was locked, no Ray or Darren or Louis in the garden. We went back to Dawns and then Darren came in and said he had taken Ray back to the garage and left him to carry on waiting as they still hadnt finished, but he gave me my house key.

I went home after thanking Dawn and Ray was coming in with Louis so annoyed as they had gone out on a test drive and taken it home to lunch. Anyway it had passed and Louis had enjoyed the extra outing, we got in doors and I made lunch but we vowed to always make sure I take my key every time we go out.

Rod Skyped me from Australia and wished me luck for tomorrow giving me loads of useful advice about what questions to ask.

We relaxed and then I went down and just washed the Motorhome over and then it tipped down and we had a thunderstorm.

What a day Im so pleased it has calmed down now.

Mesothelioma Survivor my Diary –Tomato plants, Pet Seagull and Chocolates

I do like days where you wake up and you just dont know how the day will pan out.

A phone call very early and the lady from Interflora telling me they will deliver the chocolates but as I have been messed about they will be a large box to say sorry–bless!!

Then a phone call from our friends to say they would bring some tomato plants around so I took Louis out for a walk to the Seasalter Cross and came back to tidy up.

Ray wanted to put a light up on the Patio, for lovely summer evenings and we have decided to take the security light down, as it keeps coming on, as the hedgehogs and Blackbirds turn it on in the  early hours. I dont like annoying neighbours and Im worried that it will wake people up.

So Ray started that and then our friends turned up opened up the boot and not only tomato plants, but grow bag and sticks so everything to grow the plants.

Lets hope they grow ha ha !!

Beryl the gardener!!

We tided up and had a coffee and biscuits on the Patio and told each other where we had been, so much to catch up on.

Beryl and Chris had been to Spalding where they have a great Flower Parade in April

A spectacular procession of tulip-decorated floats will make its way along the 3-mile route from Springfields Event Centre and wind its way through the town along the historic river.

When they went we tidied up again and then the Chocolates arrived a lovely box of very high calories. He asked me to pop them in the fridge –I wonder how long they will stay there  and when will they appear on the hips ha ha !!!

We opened the post and a Coroner’s report has come after 33 years, this May 27th being an Anniversary,  For those that read Rays book will know how our Daughter was killed.

http://www.smashwords.com/books/view/43717

http://www.amazon.co.uk/gp/product/B004P8K2SI/ref=cm_cr_thx_view

So at last we have the report  and it is very hard to read as it really is a miscarriage of justice.

At last we were able to take the dog for a walk to get rid of some of Louis energy.

On the way back we saw the Seagull waiting for  Dawn to feed it. She gives it a tin of dog food everyday and it now flies in at the same time and waits. Dawn was out today but the seagull was waiting.

A new pet.

This evening I was able to wash my car because she is having a MOT tomorrow and I like to have it all clean dont know why it wont make it pass any easier. It was good to sort out all Louis balls and cushions on the back seat he is worse than a child at times.

He loves this when he is out off lead and they are so easy to use, although he just sits by the ball he wont bring it back he is a marker not a retriever.

Well thats my day and its been a very good day –one more day to go to London.

Mesothelioma Survivor My diary – the eruption of Grímsvötn and Ash, a quiet day here.

The Cloud of dust is back as the volcano erupts in Iceland again.

http://www.metoffice.gov.uk/news/releases/latest/volcano

The British Geological Survey (BGS) have described the eruption of Grímsvötn that began over the weekend as a ‘significant eruption’ and the Icelandic Met Office (IMO) have reported ash continuing to be ejected from the volcano.

As the Volcanic Ash Advisory Centre for the northwest Europe region, the Met Office is receiving information about the eruption from colleagues in the IMO and BGS. We use this to provide guidance on the movement of the ash plume.

The movement of the ash plume will depend on how long the volcano continues to erupt and how weather patterns develop. The Met Office London Volcanic Ash Advisory Centre (VAAC) continues to provide forecast guidance up to 24 hours ahead to support decision-making. This guidance is provided to the  Civil Aviation Authority as the lead agency, NATS, airports and airline operators in order to support their decisions on whether aircraft can fly safely.

I hope this doesnt disrupt for to long.

Today I have been exhausted again I hate this pattern of having a good day then a feeling of no energy the next day, its so frustrating I cant wait for treatment to be sorted and then maybe getting energy back again.

Had lots of phone calls today and one has been from the Interflora and they know they didnt send the Chocolates with my flowers but Bill is now on a plane home so I have emailed and he will pick this up when he lands. They are delivering them tomorrow so I will have one for you as I would like to share but they would melt in the post. ha ha !!

The usual walk with Louse was lovely as although still windy it was very sunny.

Ray did the shopping again 

I carried on and Played with Louis to wear him out

When we got home and had lunch Ray then went to help our friend to sort her computer out and they had a chat about things –I fell asleep.

Im sure on day they will find me like this

I went and sat in the garden in the sun and then cooked a Chinese dinner, sweet and sour rice and chicken kebabs and strawberries and icecream.

Another Mesowarrior is very unwell today, Oh how we hate this disease as we fall down one by one, when will they stop this suffering that we are not to blame for. It has nothing to do with what we ate, drunk, or smoked. It didn’t matter whether did or didn’t look after our body as for so many years it lay in our Lungs or Tummy and just festered until one day I couldn’t breath.

So cruel to us and our wonderful families. A candle will be lit tonight for our warriors

Tonights Sunset

Wow

The sunsets in Seasalter are always something to see and tonight it is perfect

Well today was a quiet day.

Just in case you miss this on the comments Wendy sent me http://www.ustream.tv/channel-popup/decorah-eagles life goes on !!!how sweet.

Mesothelioma Survivor-My Diary A day of making Memories and real Kentish strawberries,

We have had a wild day today as the wind has blown so hard all day although it was warm which was OK.

We got ready and went out early as I wanted to buy my Folic Acid and Turmeric and Holland and Barrett have a half price sale on so we went to the Gorral Tank to park and walk through the high street.

It was packed with German school children all trying to get into the Bakers to buy food, the Bakers have done a good trade today.

I then went to the Greengrocer and bought local Strawberries for Dinner, very ripe and plump as it has been a good year for the farmers.

Then a walk back to the harbour to buy my fish and I was happy.

They have built a boat shaped construction where visitors can sit down, it is really well made.

You can have a sail on the Greta

The ‘GRETA’ Thames Sailing Barge was built in 1892 at Brightlingsea, Essex by Stones.

Length 80ft, beam 20ft, draft 3ft, displacement 49 tons

‘GRETA’ was built for a barge sailmaker called Hibbs. He sold her to Owen Perry who owned a fine fleet of working boats noted for their smart turnout and racing success.

We walked around to the Yacht Club all the boats were on the beech but at the weekend it is lovely to them sailing in races.

Waiting for the sailors to come at the Weekend

Ray making out to be a diver

We had a slow walk back after buying our fish

The fish huts

A lovely fisherman --he doesnt argue ha ha !!!

So then we returned home in the car and had lunch and I watched 60 minute makeover and cringed as they painted over Artex with not a mention of the fact it could contain Asbestos as the house was older. At least they didnt remove it so it was probably OK but I wish these programs would mention Asbestos more. i have sent many emails to them but dont get any answer.

I cooked a lovely simple dinner of Fresh Tuna, new potatoes and broccoli with fresh strawberries and icecream  so feel very healthy now ha ha !!

So we have had a good day. they do mount up dont they.

Mesothelioma Survivor-My diary- A windy day rain at last, Thinking of my dad today and an old friend calls.

It rained at last night at last and a couple of showers through the day.

I have been in a very reflecting mood today, thinking about where I have got to since diagnosis. Thinking about when I first couldn’t breath and my arms going funny, my left shoulder has got smaller as well and all my tops slip of my shoulder now.

Knowing that my Dad also had these problems but they put it down to Emphysema but I do often wonder as he worked in the Dockyard on the Submarines if he didnt have an Asbestos related disease.

http://www.emedicinehealth.com/emphysema/article_em.htm

Mum and Dads wedding photo 1921

Today has been so windy and we went for a walk with Louis but I cant go far in that sort of wind, so just a small round walk and we came back indoors and I have had no strength every since then I realised I have been gardening the last two days so that wasn’t pacing myself was it? When will I learn?

I have been reading today about meditating and of Buddhist’s and their belief

How To Meditate: Part 1

This is a three part video podcast on how to meditate. Words are from Sri Chinmoy, a widely known spiritual teacher; the video part shows him in a silent meditation. Part 1 shows the first step of meditation: “Concentration”. Published bywww.srichinmoy.tv for VideoJug.

1. Step 1: Block Out External Influences

   When we concentrate, we do not allow any thought to enter our minds, whether it is divine or undivine, earthly or heavenly, good or bad.

2. Step 2: Focus The Mind

   The mind, the entire mind, has to be focused on a particular object or subject.

3. Step 3: See Only The Object

   If you are concentrating on the petal of a flower, try to feel that only you and the petal exist, that nothing else exists in the entire world but you and the petal.

4. Step 4: Focus Your Look

   You will look neither forward nor backward, upward or inward.

5. Step 5: Concentrate On The Object

   You will just try to pierce the object that you are focusing on with your one-pointed concentration.

6. Step 6: Concentrate From The Soul

   But this concentration is not an aggressive way of looking into a thing or entering into an object. Far from it! This concentration comes directly from the heart, or more precisely, from the soul.

   We call it the soul’s indomitable Will, or Willpower.

http://www.videojug.com/film/how-to-meditate-part-1

I will have a try !!! but I find it so hard to empty my head of thoughts.

Ray has just had a call from his friend Harry who at last has bought a laptop and is taken lessons so we can keep in touch more. Im so pleased for Ray as they were friends in the army in 1958 -60 so they go back along way. If you have read Rays book he is the one that came in the room in Germany and said to Ray Im a rat and I have just eat poison. That was their first meeting and lead to this wonderful friendship.

Ray in his youth before he was called up to the army.

Well I said I was in a reflective mood but I have had a good day today.

Buying a badge for Debbies Treatment in Germany

http://anddontcomeback.blogspot.com/Please buy a badge to raise money for Debbies Treatment

Buy from here

http://www.mesothelioma-and-me.com/buttons.html

Mesothelioma Survivor My diary- Helping Debbie, Asbestos Awareness, Drought in my Park and dinner in the garden

My friend Debbie is now in trouble like me and her Theo is growing (we give our tumour names as it is easier to talk about them)

Debbie is under Prof Vogl and so she has to find the funds to get to Germany. We are raising money for her

Her daughter writes

~Fundraising for Debbie~

Hello!
Siobhan (Debbie’s daughter) here. A lot of you will have read already that my mum has been told that her cancer is growing again. Our oncologist, Dr Daniel, in the UK and Professor Vogl who performs the treatment my mum has in Germany both agree that her best chance at fighting it would be to perform the same kind of chemoembolization treatment that worked in the past but with a different drug (Alimta).

Chemoembolization is a procedure where “anticancer drugs are administered directly into a tumor through its feeding blood supply” (wikipedia) and is used in the UK to treat liver cancer. Pemetrexed, better known by the brand name Alimta, is also approved and used in the UK for the treatment of mesothelioma. But because professor Vogl’s use of chemoembolization to treat mesothelioma is still in research stages, we cannot get PCT funding to help pay for it despite that it was very effective for her before. So what this means is that my family (that’s my mum, me and my two younger brothers) have to find around £4000 to pay for it ourselves – no easy task.

I know my mum feels awful about accepting ‘charity’ from people and would not normally ask even our friends and so I don’t want to just beg for money. I’m selling these buttons for £1 each, which isn’t a huge amount but if everybody who sees this just bought one, I’m sure we could take a big dent out of that £4000 total already. If you would like to buy a badge and show your support, we’d really appreciate it! 🙂

Thank you,
Siobhan

http://mesotheliomaandme.blogspot.com/

I wish Debbie all the luck in the world and wished we wasnt fighting this disease together.

http://www.youtube.com/watch?v=PVuml-mfl18    This is also a video that is so Good and Informative that IATP are going to use it to cascade to  bring Awareness to our plight.

Rod has told me the history behind it he said — The song itself is an Australian Classic by Midnight Oil, it was written about the town of Whittenoom in WA, a town built by CSR (Colonial Sugar Refinery) to mine and mill Blue Asbestos. It has been described as Australia’s greatest industrial disaster.

I keep missing Rod on Skype as today I was out in the sunshine and had the sound down on my computer, I hate missing a call from him as we have a good laugh together and he and Ray chat as carers and it does them good to talk.

I have had a good day in the garden still tiding up and just loving all the hardwork Darren did for me.

I had a chat to Joan and Gerald, who has had a Hernia Op and is very sore as he walks about.  They have to keep going OOP!! North to Gerald’s sister who has got very confused and they had a phone call from the airport to say she was there and had no ticket but was going to Cyprus, errr she is but in June not now. So they had to rush up and sort her out and Joan asked “how did you get to the airport” she said “I dont know I must have got a taxi” Oh dear its such a shame and so sad that a person that just a few years was very in control of her life and now has got so confused.

We took Louis to the Country Park for a really good run off lead and the ground is really cracking up. Huge cracks as if there had been an earthquake. we have London clay here and it dries out but we havent had rain for so long I dread when we do because it might not know how to stop and if it cant soak through then we will have flooding.

They have been planting new trees how are they growing with no water around?

We returned home and I sat in the garden reading a book, I have listen to the advice and put a chair in different places so that I can relax when gardening and sit and read in a place to hide when I want to or sit in the open when I want to talk.

We had dinner (a fab Curry) in the sunshine tonight and lit the log burner which is going to be a real success in summer evenings when it gets dark earlier.

Im amazed at how I dont feel depressed now and feel very happy inside. I’m not feeling morbid at all so its onwards and upwards from now.