Living With Mesothelioma-My Diary- Rays Day for the Angiogram

We had to get up so early so I could walk the dog before we went to the hospital for Rays Angiogram. I didn’t take my tablets last night and today so as to be able to be there for Ray. And I have had terrible pains. My toes and hands and fingers I could cut them off. But Im also shocked at the pain in my rib cage -its amazing I didn’t know it was there as I have taken pills. The shoulder pain so I now know what Debbie has been going through. Ray keeps asking why Im so quiet I don’t want to worry him and the tablets will be taken and start masking this pain. Oh what a disease, its a night mare !!!  Everything is hurting and my thyroids in my neck has been giving me a dull ache and a choking feeling.

The Dr at St Barts was worried about the swollen ankles, but I have had them for over a year and Im waiting for the blood results to see how much damage has been done to my kidney.

I dont usually moan or mention pain so you know how shocked Iam to find I have so much and  I will get those tablets back on an even keel again.

Dave our next door neighbour knocked dead on 7.15am so off we went.

It was a lovely ride down to Margate  in the sun, we were soon there.

Ray has written about the day and it is his day so I will put the link on here for you to read. All the other men there  so sweet and we all had a laugh as one by one they changed into their gowns and dressing gowns.

He was asked lots of questions about past health.

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This is the state of him when he came back and was able to get up.  It was on back to front for goodness sake, He said they did it in there –yeh right!!

I have never seen him show so much of his body to so many people.

I thought he would come back like this

Well I can dream cant I!!

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Where has everyone gone

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He did soon recover after he came back.

He was soon through it all and we could come home. I did go out to tell Dave we would soon be ready but I go lost and was heading the wrong way so I cam back.

When Ray and I came out we went in the wrong lift and it went up but it wouldnt go down so we had to find another one which did get us right down. Dave was there waiting bless him and we came home where ray has been resting.

He has a blocked artery that they will fit a stent into. I stupidly said great not a serious op, meaning not a Zipper open heart surgery.  The surgeon said “I wouldn’t exactly say that , It s still serious. ” Silly me.

Rays Blog http://mesoandme.wordpress.com/2013/04/30/tuesday-48/

Living With Mesothelioma -My Diary- Chemo all sorted here in K&C Hospital –phew!!

I got up and waited until 9am and then phoned my CNS but the answerphone told me she was on holiday.

I hunted through and googled to find the phone number of my Oncologists Secretary, I got through and poured out the whole story of Friday to her.

It ended up a long story but we got there and she said to would talk to my Oncologist.

I hung around all day waiting and waiting, scared to go out as I didn’t want to miss a call.

Ray took Louis out and then later I did after we had lunch. no call.

I left it until 3 and phoned and had to leave a message as it said the secretary was away tomorrow. I thought that would be the end until Wednesday.

BUT the phone rang at 3.30pm  It was my Oncologist. So I explained again just what happened on Friday and she said yes I can have GemCarbo Chemotherapy but she didn’t realise it was being used on Mesothelioma.

That throws me but she did know it was used on Lung Cancer. She is willing to go for it and will send a consent form for me to sign and take back on Wednesday.

So Im in Chemo in 2 weeks time.

I have emailed Barts and thanked Peter for all he has done and asked if I can know what the results are of my kidney blood test.

So at last I can relaxed and see what happens now.

hugs 5

I do its been so stressful since last Monday and now we have to get through Rays Angogram tomorrow. Cant wait to get that out the way by this time tomorrow we will know the damage in his heart and what they will do.

Dave next door is running us to Margate so we are settled there.

Rays Blog http://mesoandme.wordpress.com/2013/04/29/monday-38/

Living With Mesothelioma -My Diary-A lazy Sunday and Blossom

A lovely lazy day. really lazy this morning as I got up late after a great sleep. My pain killers knock me out so I cant lay awake worrying about anything.

Lazy Breakfast, lazy  wash and then we went out with Louis in the car to Tankerton. We walked around for a while but Ray got tired and he sat on a wall to catch his breath.

2 Neighbours saw him and asked if we were OK  he he !!! old age thats all.

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Lovely blue skies and blue sea.

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This tree was in full bloom

A blossom

There was no real smell to it so I think it is a cherry blossom

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So pretty.

We drove home and had lunch.

This afternoon we watched 3  films that we both enjoyed on Channel 5 so now I have to cook our steaks for dinner. It has been a great lazy relaxed Sunday.

Rays Blog  http://mesoandme.wordpress.com/2013/04/28/sunday-45/

Living With Mesothelioma-My Diary- Letters from the Oncologist

Really had a thousand things run around my head today. The thought of Chemo is not a good one and we know that I will be in a bad place as I take the poisen into my veins. They say that to much knowledge is bad and thats true as Im becoming an expert in Mesothelioma from a patients point of view.

I have received letters from My Oncologist. Well copies of letters she has been sending. I didn’t think she would have worked that quick. I should have had more faith really. Bsrts will see I haven’t been telling them anything but the truth though so They now have in writing everything that I have reported to them.

One was an appointment to see her in June.

One was reporting to my GP the results of the scan and that she is writing to Dr Steele, only she calls him Professor Steele,? She wants to know if there ar any new trials.

The other letter is to Professor Steel giving all the details of my  scan and treatment. and asking if there were any trials.

She also says if not she will proceed with Pemetrexed this time with Carboplatin orVinorelbine.

It just means Im ahead now and I have all the answers for her and please can she get permission to use GemCarbo. I have emailed this request to my CRN so by Monday I can chase some answers.

My Australian friend Rod gave a great report of what they use in Australia  Rod Smith By what i know our first line attacks these days are:
(1) Cisplatin & Alimta [normally six rounds, but could be more – depending on how a sufferer handles it]
CT ot PET scan after about 3 or 4 rounds.
(2) Carboplatin & Alimta
(3) Maybe more Carbo & Alimta
(4) Alimta by itself
(5) Gemcitabine
Some oncologists will go Cisplatin & Gemcitabin instead of Alimta.
Lou started of with Cisplatin & Gemcitabine.
Alimta was not on the free list until 2007, so Gemcitabine was the chemo of choice to mix with Cisplatin.
Julie had 3 x Cisplatiin & Alimta; 6 x Carbo & Alimta; 6 x Garbo & Alimta and 4x Alimta by itself. The one last Alimta.

So much drugs its a wonder we don’t glow in the dark.

So we have had a very quiet day.  I keep finding my self drifting into thought of past and present.  Im so pleased i have done all the garden as I wont be allowed to touch the soil incase of infection. I have been collecting up all my wipes and spray, I thought I had finished with them.

I have phoned family and had a chat. Trying to keep their spirits up and not to worry to much, they know I will fight  again.

I went to take Louis out but he didn’t want to walk up the road so I cant false him.  It has turned so cold so I was happy to come back home.

IATP have announced their Action Mesothelioma  UK Day Friday 5th July where they will be releasing Balloons as a way to build Funds for the charity

ball

Should be great fun in Birmingham that day. More details to come.

Rays Blog http://mesoandme.wordpress.com/2013/04/27/saturday-47/

Tea, a tonic for high blood pressure: Three cups a day to help counteract cardiovascular disease

Living With Mesothelioma – My Diary- A trip to London -More Chemo I Can Have More Chemo !!!

What a day of emotional up and downs.

Set off by train from Whitstable changed at Bromley South and caught the City Thames Link Well thank you Tess for this great idea, it saved us all the horrible journey on the underground and long walks for Ray.

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And then when you get off your at the back of Barts right where we needed to go to out patients.

Thanks Tess xx

We booked in at reception and it was ok I was on the list only I couldn’t produce a letter as it had all be arranged in email.

I sat down and then it was my turn to be weighed. Sat down and then I saw Dr Steel Jeremy is Co-Director of Bart’s Mesothelioma Research. He is a Consultant in Medical Oncology at St Bartholomew’s Hospital, the Royal London Hospital and the London Chest Hospital. He qualified in medicine at St George’s Hospital, London in 1989. After training in general medicine and intensive care, he moved to the Royal Marsden Hospital where he treated his first mesothelioma patient.

Then I saw my Hero

Picture

Dr Peter Szlosarek MD, PhD Centre: Molecular Oncology Fellowships: Clinical Research Fellowship (CRUK)Clinician Scientist Fellowship (CRUK) Job Title: Clinical Senior Lecturer Email: p.w.szlosarek@qmul.ac.uk QMUL DirectoryResearch Interests Dr Peter Szlosarek’s main research themes are in Lung Cancer/MesotheliomaOvarian Cancer,Senior Researcher and Skin Cancer/Melanoma
We sat and talked through everything, why I was there and he read the Scan report.

I have been given an appointment to have chemo but I have to ask my Onc if I can have Gemcitabine and Carboplatin here at Canterbury, if not to carry on and have it at Barts. He has done a blood test as he says Cisplatin has done damage to my kidney Peter didnt like my swollen ankles and the dry skin o my shin. These 2 chemos wont harm the kidney but they do work on the bone marrow hard so infection is a worry.
So I have a future again.
Yes another reprieve — there is time for me to have chemo and  when Im really desperate to back to a trial , He said not many have got to 4 chemos and he has only 1 that has got to 5 years he wants me to get there –he is so sweet.

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/GemCarbo.aspx

GemCarbo chemotherapy is usually given to you as a day patient. Before you start treatment, you’ll need to have a blood test on the same day or a few days beforehand. You’ll be seen by a doctor, specialist nurse or pharmacist. You’ll also have tests to check how well your kidneys are working as the chemotherapy can affect them. These may include collecting your urine for 24 hours, or having a specific blood test known as an EDTA test. If the results of your tests are normal, the pharmacy will prepare your chemotherapy drugs. All of this may take several hours.

The nurse will put a thin, flexible tube (cannula) into a vein in your arm or hand. You may find this uncomfortable or a little painful, but it shouldn’t take long. Some people have their chemotherapy given through a thin, plastic tube that is inserted under the skin and into a vein near the collarbone (central line), or through a vein in the crook of their arm (PICC line). Your doctor or nurse will explain more about this to you.

Before the chemotherapy, you’ll be given some anti-sickness (anti-emetic) drugs. These are usually given by injection through the cannula, which is connected to a drip (infusion), but some anti-sickness drugs can also be taken as tablets.

The chemotherapy drugs are then given separately:

  • Gemcitabine (a colourless fluid) is given as an infusion that lasts for about half an hour.
  • Carboplatin (a colourless fluid) is given as an infusion, lasting for about 30-60 minutes.
  • So we have  left it at that and shook hands and said bye and now its for me to sort out K&C to get them to see there are more Chemos they can us on us Mesowarriors, I just hope My Oncologist can use them as it will save me having to get to London, twice in first week and then again on the 4th week for 6 months. Traveling after Chemo could be hard but I will do it if I have to.
  • It was a good journey home so I suggested going to Weatherspoons in Whitstable at the Peter Cushing and had a very nice roast dinner.
  • It was very busy which is great to see people enjoying the place.
  • A young girl that look about 10 was celebrating 18th birthday, she really didnt look old enough.
  • As we drove home the sun was just going down, our beautiful Whitstable Sunsets and Im going to see more of them. I was so down last night and now I have been lifted up a real roller coaster.
  • IMG_0089
  • Home at last we put the heating on as it is getting very cold again
  • What a day !!!!!

http://mesoandme.wordpress.com/2013/04/26/friday-47/  Rays Blog  x

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Living with Mesothelioma -My Diary- Hunting for Trials Is Like Hunting for a Needle In Haystack.

http://search.cancerresearchuk.org/search/results.jsp?siteid=1&query=mesothelioma&searchsubmit.x=27&searchsubmit.y=14&searchsubmit=Go

http://www.clinicaltrials.gov/ct2/results?term=mesothelioma&Search=Search

All day I have been researching trials but they are mainly for 1 or second line it is so disappointing. We are so way ahead of them and surviving more than they thought possible a few years ago.

So we have to wait until  tomorrow and see if there are any answers out there.

It has been so hot, I promised not to moan as we have been cold for so long but it was way over 100 indoors today.

I didnt want to take Louis, I have no energy as Im to worried about tomorrow and Im letting this get to me.

I will be bouncing back tomorrow as I will be able to come to a decision.  Whether treatment in London or back in Canterbury, all will be revealed.

Image 18

Louis la Roche Painted from a Glass Table that had a painting of Louis on

 

 

 

 

 

 

 

 

 

 

 

 

 

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

I look back at my past relative’s  My GGGreat Grandad and his Aunt and I love the stories I have found doing the family tree and I wonder if they are standing behind me If they  are its a bit crowded behind me with my Mum and Dad my Daughter and all my relatives that are Angels now.

Im so pleased I found the stories of the past as I have no real future now. I dont care if i have gone wrong in places so what the story is so romantic.

I have loved my life so lets see if I can squeeze just a bit more out of all this.

http://mesoandme.wordpress.com/2013/04/25/thursday-42/ Rays Blog

Living With Mesothelioma –My Diary– A walk in the sun and and 2 Mesowarriors have good news.

A very very warm day today but they say it isnt going to last, Oh Dear back to the cold then.

We went out as we just wanted to be in the warm sun and take our mind off of things. We are good at that though and we had a chat to a neighbour about using salt as a weed killer, did you know you could do that. I feel an experiment coming up as I get a little daisy plant that travels all over the gravel each year.

Off then to the Railway Station and bought the tickets for for Friday’s travel.

Louis came in with us and thought we were going on the trains today.

It was so nice so off to Tankerton Slopes and had a great walk along the bank looking over the sea.

It was packed with visitors and all the cars parked and yet the car park was nearly empty.

It was pleasant with the breeze blowing gentle. At the chip shop we bought a bag of chips between us but there was to many.

chipshop

Look happy don’t I but I don’t like my photo taken as I eat (fattening chips )

Came home and Ray was so tired I didn’t seen him for the rest of the afternoon. He laid on the settee and he and the dog had a long snooze.

Tess and Lou have both had great results it is so good to have good news in our little circle. Debbie went to the Doctor for her TOF and had a scan so she will be on the worry  train for a week. We hate that xx

Tess has had 25% shrinkage now that’s so brilliant that’s where I was last March and she is going on for more treatment. I couldn’t do that as I became Allergic so that is my fear again I need to be able to finish treatment this time even if it is 4th line.

Ray has had an interview with a solicitor I wont say anything as he was giving Info to help someone else, It was evidence of what it was like to work in the Dockyard .

I will leave you to read Rays Blog when he has done it as it is very interesting at how solicitors of the younger generation know nothing at all  about life in our working life.

Rays Blog it really is interesting about the conditions in The Dockyard http://mesoandme.wordpress.com/2013/04/24/wednesday-40/

Living With Mesothelioma- My Diary – Going to St Barts for second opinion !!!

Well things start changing day to day now.

I was so down in the dumps now Im just very apprehensive. When you have Mesothelioma its like no other illness we are ahead of the Medical people. They dont see to have caught up with us or its that there is very little to offer a terminal Patient.

Well we dont sit back and wait to die, that isn’t in our planes. We fight and here I go again.

I sent a email to St Barts and  never thought I would hear today.

Dear Jeremy and Peter
I know Doctor C is going to contact St Barts but I wanted to as well.
I have growth again after 3rd line Chemo that finished in march 2012 and so Im in a bad position.
What do you do for 4th line. Dr C  has treated 4th line before so only can offer the same chemo to me that I have already had.
I cant just sit back and say no more treatment as i feel well (I cleared all my garden back and cleared everything away to a skip. Im still doing great.
Here is my report  I feel the Kidney is where they operated on when I was 45 for the same reason so wondered if thats what they saw in the scan -the scars of the op.
Right here is the report CT Chest abdomen and Pelvis With Contrast.
There has been a definite  increase in the size of the previously noted left side pleural mass lesions when comparison is made with the previous study 03/12/12 A marker nodule in the right upper zone region in the line of the oblique fissure now measures 15mm in depth when previously about 7mm no new right sided abnormality is identified. no significant lymphadenopathy is seen. the enlarged left lobe of the thyroid gland is noted. no significant hepatic abnormality is identified and no lymphadenopathy below the diaphragm is seen. the dilated pelicalyceal collecting system of the kidney is noted but no ureteric dialation is seen and features may well reflect an element of PLJ obstrucytion on that side the right kidney appears atrophic.
Comment
There has been significant increase in the size of the nodular mass lessions in the line of the pleura on the left hand when compared with the study of 03/12/12 featuresNo definaite evedence of the deseas activity below the diaphram was seen
2 Doctors Verified this all
I will leave it to you to tell me if there is anything that I can have, I hear you do a 2 and 3 Chemo what ever that might be.
Kindest Regards
Mavis Nye

By return comes an answer

Dear Mavis,

We’re sorry to hear that the meso is on the move again.

There are 1-2 possible options at the moment:-

1) we may have 1 slot left on the ADAM trial. I say ‘may’ because there is a patient who may take this slot who is currently ASS1 negative. If this patient does not proceed to randomisation then this slot may be available for you but you would need a re biopsy as your last test was ASS1 positive (needs to be negative),

2) consider three drug chemo  with IPM (I think you have already had vinorelbine?).

We have other trials in set up but I’m afraid they exclude 4th line treatment.

I will know more about the availability of option 1 by Friday.

We’d be happy to see you this Friday in clinic to discuss further.

Kind regards,

Now this means another Bi-Op if I can have a go at the Adams Trial I will try for the Chemo if I haven’t a successful Bi-Op.

So I have an appointment to discuss it all Friday.

All options will be discussed.

I had a surprise fro the Mesowarrior Flower Club bless them all.

I now know how important the club is to us all, it lets me know they are with me fighting the battle with me.

flowers

We have lost warriors overnight but Heather in the USA has had wonderful news that sh has no sign of Cancer. This can happen if found early enough and the Lung is taken out so all the disease is cut out Sadly only a few are in the position as mainly its to late when diagnosed.

Linda Wride dedicated her blog to me as she has been to Spain and I love Spain http://doingsomethingpositive.blogspot.co.uk/2013/04/valencia-and-dedication-to-very-special.html

So much love and kindness when you are down so low, what a community, we all work together.

We have had a lovely day as the sun is still beaming at us and ray took the Motor Home round for the MOT and it has passed.

I did walk Louis round with out a coat on at last. I have been wrapped up in scarves and gloves for so long that you feel almost naked today with no coat on.

I have missed any neighbours as I cant talk I dont want to say it to myself let alone to neighbours -that its all growing again.

I will begin to open up but I feel I have let everyone down as everyone has been egging me on to beat MR Nasty and the bugger has won. Im looking him in the face again.

I made a loaf of bread and it has come out wrong -, I think the day is not the day to try fancy recipes Im not concentrating.

We tried to eat it with homemade jam and it was stodgy so its all in the dustbin and I will try tomorrow.

I did make a Pasta in a tomato sauce that was ok and Ray had a chicken in a Lemon sauce i did manage to do that right. Louis had Lamb Chops as now his teeth are out he has the hugest apatite, he is going to get so fat.

Rays Blog https://www.facebook.com/raymond.nye.37?fref=ts

Living with Mesothelioma- My Diary- The big shock -here we go again

Ray walked Louis as I got ready to go to the hospital for my results.

I took my awards to show Dr Cominos and we arrived in good time.

Three nurses went in first to get things signed and from the conversation They had just  passed to be able to be fully fledged nurses.

I went in and asked if I could take her photo as well as show my Awards.Why she said you won then–Not without you help you have kept me fighting x

mave-matilda

Meet my Oncologist we have come a long way together and she love the awards and the IATP had Mesowarrior etched on it which she found amusing.

All smiling then five seconds later the smiles went.

I said so it stable and she said “well no not really”

My heart dropped out of my body.

Right here is the report CT Chest abdomen and Pelvis With Contrast.

There has been a definite  increase in the size of the previously noted left side pleural mass lesions when comparison is made with the previous study 03/12/12 A marker nodule in the right upper zone region in the line of the oblique fissure now measures 15mm in depth when previously about 7mm no new right sided abnormality is identified. no significant lymphadenopathy is seen. the enlarged left lobe of the thyroid gland is noted. no significant hepatic abnormality is identified and no lymphadenopathy below the diaphragm is seen. the dilated pelicalyceal collecting system of the kidney is noted but no ureteric dialation is seen and features may well reflect an element of PLJ obstrucytion on that side the right kidney appears atrophic.

Comment

There has been significant increase in the size of the nodular mass lessions in the line of the pleura on the left hand when compared with the study of 03/12/12 featuresNo definaite evedence of the deseas activity below the diaphram was seen

2 Doctors Verified this all

Well thats it in all its glory.

We have left it as an appointment in 6 weeks for her to sort out with St Barts what can be offered in the way of trials or treatment.

Also to let Ray get sorted out and back on the road to recovery.

Thats how we have left it all.

Ray was in tears and Dr Cominos was so sympathetic as we have been so strong through all this.

We are in shock tonight so I will start researching tomorrow where we can go from here where my options lay.

We have bought some Chocolate to comfort ourselves tonight we needed cheering up .

What a mess.

 

rays Blog http://mesoandme.wordpress.com/2013/04/22/monday-37/

Living With Mesothelioma-My Diary- Watched the moon travel over the night sky

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The moon was very weird last night it was very bright but just a sliver at the bottom was showing none of these pictures fit what I saw last night  as the silver silver was at the bottom. It wassnt cloudy so I dont know why it looked like that.

I couldn’t sleep and I watch as it traveled over the sky and down to the Horizon. Then I found I found I did finally drop off into a wonderful sleep.

We got up to a blue sky and sunshine and yet there had been a hard frost and the Garden table was covered in it.

I put my fingers in to the cool ice and melted the shape of my hand.

Louis ran back indoors before me.

Ray took him off for a walk and I did my usual housework. I watched for my boys to come home and then made a tea for Ray

I wanted to finish off i the garden so that’s what we did as Ray helped and supervise me doing the shredding. I had cut back my Rosemary bush so when shredding  the smell was divine.

That was soon completed and we made lunch.

I popped out after a nap and finished cutting more bushes and now the job ia all done and although I ache I also feel very well. Im sure exercise makes the lung so much stronger.

I have my results tomorrow so just a bit wonky about what the news will be -. Its a worry that is always there so lets get it over with I will know by 11.30am

I read an article about Mold and they are saying there is a link between mold and cancer. So get the bleach out and zap any mold in the bathroom.

lung cancer and mold

The Link Between Mold and Cancer
Aflatoxins are a type of mycotoxin produced by the Aspergillus species of mold. This common mold tends to grow on crops: primarily corn, peanuts, and grains. When we eat enough of these moldy foods, or eat animals that eat them, we can get liver cancer. For this reason, the FDA has established a maximum allowable level of total aflatoxin in food commodities of 20 parts per billion (ppb) and 0.5 ppb in milk products.
There are other cancers associated with mold as well, including testicular, breast, and lung cancer.
Perhaps the greatest attention towards mold has been on the issue of Sick Building Syndrome (SBS) which is typically a product of breathing indoor-air contaminated by mold and/or chemical toxins. Things such as flooding, or poor building contruction, design, or ventilation, can bring on the problem.
The worst problems have been caused by mold and particularly ‘toxic black mold’, Stachybotrys. A headline in Sweden read “The Mold in the School is Cancer Causing.” At this particular school, 40% of the staff that worked there for five years or more were diagnosed with cancer. These statistics are hard to ignore.
Bottom line, mold is bad for health and long term exposure can have a debilitating effect.
If you have mold in your home or business, take action and get a professional assessment.

Rays blog http://mesoandme.wordpress.com/2013/04/21/sunday-44/ he has been back to his old self I think its the sun it makes everyone feels better