My Diary of Mesothelioma– April Asbestos Awareness week starts tomorrow to the 7th April

Today has been a quiet day for us we have just taken life easy.

A lazy morning and a lazy breakfast We feel life is going to be so busy as April unfolds.

The London Appointment is April 4th for the London trip. The CD’s of my scan arrived but we cant cheat and look at them becuase we havent got the Hospital programe needed to download to read.

A friend had told me that Sainsbury’s were having a sale on all cleaning products so we went and gave the dog a walk on Tankerton slope where we gave him a game of football and then carried on to Sainsbury and had a great buy to stock the cupboards up for Im going back into Chemo and you have to keep everything so clean as it reduces the Immune system and you can catch virus’s so easy

I came home and had lunch and a coffee and then went to visit my friend to have a chat until her husband came in with the wonderful smell of fish and chips and it smelt divine.

I had an email and it was an Interview from a lovely lady in the USA  for the ADAO week of Awareness they really are going to use my story to close the week on Im really honoured that they think me so interesting.

Im playing a big part in this and I hope it all goes well for Linda Reinstein xx

http://www.asbestosdiseaseawareness.org/

Chemotherepy

Chemotherapy hurts your immune system by lowering the number of white blood cells produced in your body. White blood cells are important in preventing and fighting infections.

Chemotherapy tends to lower the number of white blood cells because it destroys any cells in your body that grow quickly. These include cancer cells, but also the rapidly growing healthy cells in your hair, digestive system, and bone marrow—where blood cells are produced.

It is important to remember that different types of chemotherapy affect the immune system differently and that individual responses to treatment can vary widely. You will have frequent blood tests during chemotherapy so that your doctor can monitor the levels of different blood cells in your body. Your white blood cell count may not go down significantly during chemotherapy. However, if it falls below a certain level, you will have a condition called neutropenia (pronounced: noo-tro-PEE-nee-ya). In this condition, your white blood cell level is extremely low and you are at a high risk for infection.

If your blood tests show that your white blood cell level is low, or that you have neutropenia, you will have to:

  • take special precautions to prevent infection
  • report any suspected infection to your doctor immediately
  • possibly receive injections of a substance that stimulates the growth of white blood cells

http://www.amoena.com/tbcs/InTreatment/Chemotherapy/ChemotherapyImmuneSystem.htm

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My Diary as a Mesothelioma Patient -MOT day worrying about 2nd Line Chemo

We have had a great day today as we had to get up very early and take the Motorhome for its MOT which is only about 2 miles away so I said we could drive there drop the van off and walk Louis back so giving him a good walk.

Thats what we did so off we set for Darget’s and the garage was just opening up as we arrived at 8am.

Ray parked the Motorhome in their yard and we had a lovely walk back but because it is very narrow country road and every one seemed to be going off to work it was really busy and we had to keep stepping in the hedgerow.

http://www.dargatemotcentre.co.uk/

We finally arrived back home to a well earned coffee and Im ashamed to say I fell asleep.

I awake and did some housework.

The postman came but there was no CD’s of my scan for St Barts nor a letter of referral I know I must give them time but its just Im so nervous now about what will happen to me from now on.

Ray phoned the Garage and the MOT had completed with flying colours as the motorhome is as good as the day it rolled out of the factory.

I know she is a lovely solid build and this confirms it

My great VW she passed her test

They carried on and did a service has we have a service light that comes on to remind you and ray said he set that again for next year so we have to have services–cant get out of that then.

They phoned at 3 to say it was already so we walked back but it was pouring with rain but we wasnt going to be beaten even though the dog wasnt finding it funny as he had his ears straight back and he walked so close to me which is something he does when he is worried.

We decide to walk under the A299 bridge and up the slip road to walk along the Thanet way but the traffic is so loud on the road and the rain was pouring down.

We got to the Petrol station and was glad to go up the side road to our MOT Centre –Peace reigned again.

I waited as Ray paid £180.00 which was good for a MOT and a Service (I tell this incase any of my Motohome Friends are interested as finding MOT Centers that have the room to take Motorhomes are very hard to find.)

So we drove back home and I had Louis all wrapped up in a towel as he was so muddy.

I made dinner and Im relaxing for the evening but its been a great day and we are now ready to go away and have fun in between hospital visits.

My lovely neighbour Dave is back from Italy tonight and I cant wait for him to see I have put my table and 2 chairs in his garden by his bench he he !! Im going to say its for me to come and have afternoon tea and a chat.

I have found this info today so I really must see it that I can still go on and on xxxx

Individuals who have been exposed to asbestos and contracted mesothelioma as a result may be helped by second line chemotherapy.

A new study has revealed that several rounds of the treatment which are given at intervals of a few months apart could combat malignant pleural mesothelioma, according to Surviving Mesothelioma. A single course of chemotherapy would not be as effective, it has been claimed.

My Diary of a Mesothelioma Survivor-Magpie’s, and Control of my Palliative Care

Another lovely sunny day to wake up to, this is going on at a wonderful pace, sunny everyday I love it ,as I just love it waking up to Magpie’s walking on the roof with army boots on and marching up and down.

We had breakfast and talked to our friend in Australia, I hoped we helped as we chatted away as this disease doesn’t have border’s it is in every country.

I had to cut him off though as the awaited call came from Dr Steel who so kindly phoned me at home to listen to what I wanted and why I was seeking trials so he has told me to go to St Barts next Friday and take a CD of my scans and he will discuss my case and what route I can take.

I didn’t know I had the right to ask for all my scans on CD, he has also told me to get a letter of referral from my Doctor.

So we hung up and I chased The Kent and Canterbury Radiology Dept and yes it is easy to acquire  a CD of the scans and I have phoned the Doctors Secretary and she is doing the letter of referral so everything looks good.

I feel I have to find the best and I have to be in control of finding out everything I can to help in my Palliative care It is my body and my Cancer and above all my Life.

http://www.bartsandthelondon.nhs.uk/our-services/cancer-centre/cancer-types/lung-cancer-and-mesothelioma/

Research and clinical trials

Barts has been at the forefront of medical discovery since it was founded nearly 900 years ago and today, our research continues to be recognised for its originality, significance and rigour. The results of the work we do here means we are constantly improving the treatments and care we can offer patients.

We participate in clinical trials for patients with malignant mesothelioma and lung cancer. We are active members of the London Lung Cancer Group Clinical Trials Network as well as the National Cancer Research Institute Clinical Trials Programme. We also offer state-of-the-art trials of new therapies for mesothelioma and lung cancer.

We also have a laboratory research programme centred on malignant mesothelioma and participate in clinical trials in new targeted anti-cancer agents for lung cancer, designed to kill the cancer while causing as few side effects as possible.

For more information about these trials, please speak to your consultant or nurse specialist.

——————————————————————————————————————————————————–

When I came of the phone I felt drained but happy and sorted I just know i have done the right thing.

We had a bit of lunch and Ray is very muddled about all this. I think its time for him to sit down and write in my blog what he feels as the career because Im out in front here on a crusade and i keep asking is he alright and can he cope but he really doesnt seem to understand or read my mind.

We have to be together on this and so he really should talk about it.

We went out with the dog to the country park and had him off lead and running like the wind a free animal, chasing a ball.

It was lovely in the fresh air and open space.

Life is wonderful and basically Im very happy, isn’t that a funny thing to say, but everything is wonderful and I want to enjoy this feeling for as long as I can.

Cultivation near bushy close

Tonight there was a power cut just as we were cooking dinner isnt it funny I was lost for the minute as electric runs everything, even the gas cooker needed electric for the igniter. Lucky I have a battery one that saved the day.

I could hear all the fire alarms and security systems ringing away on people houses,  as they were on the battery a right racket

It wasn’t for long  and life returned back to normal.

I have had a phone call from the Lawyers in America just as I’m writing this and they are taking my case up with the USA as Ray worked on ships in the Chatham Dockyard. The USA have created a fund for people from abroad that worked on their ships and have contacted Mesothelioma.

We will see if they win my case for me.

Ray writes.
Early his morning Mavis and Rod in Australia were on Skype. Rod was really upset as their visit to  the Oncologist yesterday was not  good news. I fear that Jules decision not to continue treatment is a hard thing to  take in. Her condition is not good. Rod was naturally upset and he was crying. Mavis tried to comfort him and she turned to me and said you talk to him and then she could see I was also crying. I can feel Rods Pain so much. The fear and pain he is now enduring will be my pain some time in the future. The road he treads now I have got to tread. I do not know at this point how or even if I will or want to cope. My son is grown up and has a life of his own. My only responsibility here is to my dog. Will that be enough for me. When you get to our age its natural to  look at the end  with ever increasing speed ,that doesnt make it any easier, only more frightening. I am not in too good a health ,but I must be strong for Mavis`s sake. She needs me to look after her. After that I will not care.

The Diary of a Mesothelioma Survivor-Sorting trial treatment for me at St Barts London

I slowly woke up today and thought life is good, then my mind remembers and always asbestos and mesothelioma are on my mind, it never goes away everyday for 2 years it has been  with me. I try to push all the thoughts down but somedays it s harder than others.

I got up and looked out on a grey cloudy day but it did slowly clear to a lovely sunny day again which really pleases me.

We did a little bit of work in the garden before going out and to Tankerton slopes ha!ha! where else. There was 2 motohomes parked on the slopes and they were sitting inside having a meal looking out to sea, such a nice thing to do, we really must get away soon and enjoy doing that.

A Tesco shop was then done and we got home and packed the shopping away.

Back home I had missed a call from Dr Jeremy Steele but how sweet was that a personal call  to my query of Trials at St Barts he is phoning me again tomorrow  so I will report here what he says.

I also had a email from my Macmillan nurse and she had spoken to Mesothelioma Uk and I know the contact there very well but I have had to leave my number so once again another phone call tomorrow so things will move tomorrow. Also a phone call has gone to a clinic about Mistletoe treatment in Maidstone so I have really gone mad and all irons are in the fire.

Im very nervous and worry about sorting and finding treatment for myself it isn’t something Im used to or didn’t expect but as everyone is being so kind I think I can sit back and listen to what everyone advises now as Dr Cominos my Oncologist will refer me to St Barts if that is what I choose.

So with all the emails and phone calls sorted I went into the garden and watched Ray finish putting up a gate to keep Louis back when the little dog next door is out as he goads Louis for a grappling through the fence.

Louis used to bark and spit but over 4 years he has calmed right down and he just makes a squeaky noise while the other dog goes mad but Louis plays with dogs now when he is off lead so he is very good. He is a barky one but then he is a terrier and we all know terrier’s bark.



Front Gate

backside Gate

It was lovely sitting in the sun having a coffee and a lovely cake and it was bliss relaxing and chatting as he worked but it does look so nice now and Im so pleased with it all it has been a lovely present for me.

My Diary of a Mesothelioma Survivor -F1-Royal Wedding -and Global Asbestos Awareness Week from the 1st April

I slept for a little while but was awake early so I turned telly on and saw the F1 what a brill race and was worth getting up so early in the end

http://www.formula1.com/news/headlines/2011/3/11870.html

It has been announced today that  Forna Cairnes are Making the Royal Wedding Cake I bet that will be lovely and I’m looking forward to the Wedding as I’m going to a street party so that should be real fun.

http://www.fionacairns.com/our-products/weddings.html

It has been another really sunny day I cant believe it goes on and on and Ray has now finished the garden so I bet it will rain from now on so that we cant sit and enjoy ha ha!

Ray worked all day again so i had to go on the dog walk on my own again but I came back and popped up to a neighbour for a nice chat,

She is going to Acupuncture for a bad back so I will be very interested in how she gets on and maybe see if I could have it for the pain  in my chest, I will have to google and see just what it is used for.

I came home and made Ray lunch and he went straight out in the garden again, but he has really enjoyed doing it, thats what has been so wonderful about this project that people have been so interested in making a dream garden for me to sit in as I get worse in this journey I’m on, a Mesothelioma journey, that I have writing this diary about.  A journal for my friends and family and everyone that has given me over 30,000 hits I hope you have all understood why I have written it.

We are now going into Asbestos Awareness week 1st – 7th April

http://www.asbestosdiseaseawareness.org/ my story is to be featured by Linda Rienstein and I’m very honoured to be appearing and to be helping Awareness. it will be an interesting week and it is backed by Billy Ray Cirus

“My dad was everything to me and most of all he was my best friend. His
character, trustworthiness and dedication made him a wonderful role
model. If only money could bring better health, he would be with us
today,” stated Billy Ray Cyrus. ”I support ADAO and their efforts to ban
asbestos. We all must work together in this fight. ADAO has my continued
support in making everyone aware of this deadly disease.”

So yes we have to work together and we will fight with Linda and ADAO

My diary of a Mesothelioma survivor and red sunrise Seasalter Cross and The arch is up

The day started really sunny so Ray got underway putting in one arch today so i had a good time doing the housework but we know we must now finish and get away in the Motorhome more but gradually as the day wore on it rained and got colder reminding us it was only spring and the weather can be so changeable.

The sun rose this morning behind a covering of cloud so it was a orange ball hanging in the sky.

I took the dog on his walk on my own and it was a pleasant walk but he went to the loo on the Seasalter Cross just as loads of cars came and were turning in and out of the roads. Talk about doing it in public ha!ha!

Ray had to come in as it rained but when it stopped he went out again to finish it off.

Tomorrow is the other one on the other side garden and then I will take photos of them in Situ as that means the garden is at last finished.

My neighbour at the back of me passed over a plant in a lovely pot as a present for my new garden as she is so pleased we have finished and everyone is enjoying my pleasure as it was a dream garden for me a special to cheer me up and it sure has done that.

Clocks go forward tonight so tomorrow is the first day of spring and the evenings will me lighter so lots of summer to look forward to.

My Son and his partner are going on an unusual Sunday out that I have never thought about so Im really looking forward to how they enjoy this.

http://www.toptable.com/venue/?id=15316

The renowned Ignite Brunch at the Café Consort, inside London’s iconic Royal Albert Hall, is a popular Sunday meeting place for jazz fans and artsy gourmands. Host to exceptional young talent from the capital’s jazz and world music scene, the live entertainment and stylish crowd provide a vibrant atmosphere at this restaurant for special celebrations, weekend dates and family days out. Eggs benedict, cheesecake, kir royales and bloody Mary’s are all part of the Ignite Brunch experience at Café Consort, and the plush décor – with its theatrical red banquettes, modern lighting and potted palms – adds to the grandeur of the occasion. Doors open at 11:30am every Sunday, and the musicians play from 12-2pm.

Traditional English breakfast served with Cumberland sausages, bacon, eggs of your choice, mushrooms, grilled tomatoes, black pudding and toast.

Sample dishes

  • Scrambled eggs and Scottish smoked salmon, served with toasted bagel
  • Chocolate brownie with pistachio mascarpone

 

Mesothelioma Diary A day of emails, Rabies Jabs and sorting my life out.

We have had a super day with the sun beaming and we have been so busy.

It started with my emailing to St Barts to Dr Jeremy Steel who I met in October at the Novatel Hotel where I did my famous talk.

I had looked up all the info as I printed earlier today and I have asked for help.

He has emailed me back for my phone number so hopefully things are moving and he can advise me what to do.

Then My Macmillan nurse has emailed me to say she is back from maternity leave and so I was able to pour my heart out, I feel things are happening all round and maybe I will get my treatment sorted.

http://community.macmillan.org.uk/whatsnew/default.aspx

The Arches came really early so at last we have them.

We had to take Louis to the vets for his booster jabs including his Rabies booster so his passport is right up todate, he behaved himself so well and the vet was able to stroke him and listen to his heart, which was great to see and the vet said he is a very healthy dog.

It was lovely walking with just our light jackets on as it was so warm and everywhere was packed with visitors that had escaped work and come down to the seaside.

Whitstable is so popular which is great for our local traders.

We called in at the bank and just had a very nice walk through town to the castle.

I have finally told my son on the phone about my tumour and he is adamant I go back into Chemo now and I know he is right so I will have a great weekend and Monday is is the day I sort my life out.