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/

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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

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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

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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.
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  • 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.

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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.

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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/