Living With Mesothelioma-My Diary -4th Line Chemo 2nd week day 1 I was so pleased the young Nurses were so curious about Mesothelioma.

What a lovely day its turned out to be. The sun has come out again and it is hot hot hot!!

I sat around this morning so that I was all calm for the Chemo this afternoon. Ray walked Louis, I made lunch and we were ready to go.

My mouth has been so sore through the Chemo so I remembered when we arrived to ask for the mouth wash that they do. It was already on my notes anyway to issue.

They have a good result on my Kidneys through my blood sample but it is on the border line. I also have to much of something in my Liver but Im having a kidney function test next week where they will look at the liver as well.

I don’t want anything wrong I don’t want to have to stop chemo.

They were running very late making the chemo so all the afternoon patients were having to sit and wait. My PICC line had to cleaned so they did that  They gave me my sickness fluid to prevent sickness and a steroid. Then we waited and waited.

Finally the bags of poison came  down. I was all set up and underway. I think every nurse at my end came and spoke to me about Meso. I was really pleased that the younger nurses are really taking an interest.

My Macmillan nurse popped by as well so the time went very quickly.

So that was it we came away and drove home in rush hour traffic.

I was pleased and very tired when I got home but I made the dinner and now relaxing before an early night.

Rays Blog  http://mesoandme.wordpress.com/2013/05/31/friday-52/

 

 

 

 

Living With Mesothelioma -My Diary – Chemo 4th line week one day 7 Rays Stent Op date is here at last.

I woke up to a very damp morning and sneaked in the garden with Louis and just stood and listened to the birds singing and the plants all covered in rain drops and just thought !Its so good to still be here and still surviving.

I put two fingers up to the 3 month diagnosis given to me 4 years ago.

Mind you it probably was true then, before all that Chemo, its been the way I have allowed it and trusted it to enter my veins.

I made my Breakfast and coffee and just took my time.

We had a phone call from Ashford Hospital with a date for Rays Stent Operation, it will be 20th June so thats all settled at last.

We had lunch and then off to see his Cardiac Nurse. She is adorable and so thorough. She spent an hour with us and she knows all about Mesothelioma as she has said that although she changed Rays Tablets to get his breathing and his Angina under control she had also to worry about Rays Asbestos Damage and she has written a mild complaint to the GP to say he didnt take that in account when he prescribed the Tablets.

We talked about Asbestos and she was amazed that it is still in homes today. Artex and DIY are causing a second wave. I told her about schools and she is going to look into her little girls school and talk to other parents, as I said that 820% of schools have it.

She gave Ray lots of Blood Pressure tests in  the mean time. Sitting Standing and she has change a tablet taken one out and put another back. She said she is trying to stop Ray having another attack before the op. He has a main Artery almost blocked on the right and the left one has slight scaling. She drew lots of pictures and made sure we both understood the problem.

We came out and walked Louis around the grounds of the Surgery which is nicely done. A walled garden effect.

Rays Blog  http://mesoandme.wordpress.com/2013/05/30/thursday-49/

 

Living With Mesothelioma-My Diary- 4th Line Chemo Day 6 Picc Line Fitted

We had to go to the hospital so we went off early as I thought I had 2 appointments at the same time.

The roads were empty as we had forgotten the children were off school, what a difference, we sailed through at 8.15am and got there far to early.

But we were seen earlier for my bloods to be taken. My blood pressure was up so the nurse took it again as she said I had walked in after being weighed and maybe I needed a rest .

So yes she was right it was normal next time around.

We went back into the waiting room and waited ages and ages for the 11am PICC Line appointment. There were some wonderful characters in the waiting room. A young girl who looked so thin Bless!! A young man with a scar from the eye right down the cheek and under his chin and up the other side to the other eye. OH so painful but he was talking very well with just a little lisp. A woman about my age but so out going and she had no hair and was proud to show a bald head. I think she was catching me looking at her but I was because I was so admiring her courage and her bold earrings.

Then the poor man by the side of me so I was reading his paper. He caught me at it and I said Oh sorry he said there’s plenty of paper to read I dont mind and we carried on talking about the baby caught in the drain pipe in China.

I was finally called in and a lovely lady took me into a room and I laid on the couch for her to fit me up with little pads for an ECG to guide her.

Me having the PICC Line fitted.

So there it is all fitted. It goes right up my arm to my heart. It didn’t hurt just the pressure of her pushing it in.

I then had to wait while they rang up for a Home visit of a district nurse to keep it clean and unblocked.

The worry is it can cause blood clots and infection so it has to be cared for.

Now they will get the Chemo into my veins well on Friday.

I was amazed how all the nurses remember me and by name, all asking how I’m getting on and was this Chemo better. Well I sure can say it is better, Im really coping well. I said how I have no pain today were yesterday I had pains like a heart attack so I really do know Mr Nasty is getting hit –this will work.

When we came home it was raining hard, a very cold wet day –Its Summer????

Rays Blog Wednesday http://mesoandme.wordpress.com/2013/05/29/wednesday-45/

Living With Mesothelioma -My Diary – 4th Line Chemo Day 5- Rain Rain and more Rain today

Please sign have your say -let your voice be heard http://you.38degrees.org.uk/petitions/the-2013-mesothelioma-bill-needs-to-be-changed-1

TO: LORD FREUD

Dear Lord Freud 

We believe the 2013 Mesothelioma Bill needs to be changed. The Bill  should help all those suffering, not just those diagnosed after 25th July 2012. Above all it should ensure people get 100% of what they are  entitled to.

Please sign you have followed my story and we need the bill to cover  research as well 

We awoke to a very rainy day today after such a wonderful sunny  weekend.

It reminded me of the song.

Toodle – luma luma
Toodle – luma luma
Toodle – oh lay
Any umbrellas, any umbrellas
To mend today?
Bring your parasol, it may be small. It may be big
He will fix them all on what you call a thing-a-ma-jig
Pitter patter patter! Pitter patter patter!
It looks like rain.
Let it pitter patter. Let it pitter patter.
Who cares for rain?
He’ll mend your umbrellas, then go on his way
Singing toodle luma luma. Toodle luma luma.
Any umbrellas to mend today.
When there’s a lull
And things are dull
He’ll sharpen knives for all the wives
In the neighborhood
And he’s very good.
He’ll darn a sock
Or fix a clock
An apple cart
A broken heart —
He’ll mend anything but he’d much rather sing –
Toodle – luma luma
Toodle – luma luma
Toodle-oh-lay
Any umbrellas – any umbrellas
To mend today?
He’ll mend your umbrella
Then go on his way singing
Toodle luma luma
Toodle luma luma
Any umbrellas to mend today

My what an old old song to be thinking of,

Ray walked Louis while I did the housework and then I made a lunch of pork and bean soup.  It wasn’t raining so we went off to Tankerton slopes where we parked up and I played ball with Louis and Ray walked along with us but I could see the colour changing in his face. He gets white panda eyes as the colour is draining from there.

He used his puffer and I made him stay on the bank as I was taking Louis down to the beach. He is allowed on there as its summer and he wants to go and play with the waves.

Then Louis saw his mate well it was another black Labrador he loves them and doesn’t try to bully them like he does small dogs. Respect !!!

They stopped playing and I had to walk back up the hill –whoops not so easy as coming down, I needed a puffer by the time I got back to the car and Ray.

As we came home the sky got blacker and blacker and we got back just in time for the heavens to open .

So resting now and will cook dinner soon Ray and  Louis are shattered and are asleep on the settee together.

Louis

Ray

Tomorrow is a early morning to get my Pic Line fitted

PICC lines (peripherally inserted central catheters)

This information is about peripherally inserted central catheters, which are often called PICC lines. They are used to give chemotherapy treatment and/or other medicines.

We hope this information answers your questions. If you have any further questions, you can ask your doctor or nurse at the hospital where you are having your treatment.

PICC lines

A PICC line is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then threaded into the vein until the tip sits in a large vein just above the heart.

The space in the middle of the line is called the lumen. Sometimes there are two or three lumens, known as double or triple lumens. This allows different treatments to be given at the same time.

At the end of the tube outside the body, each lumen has a special cap or bung that can be attached to a drip or syringe. Sometimes there is a clamp to keep the line closed when it isn’t in use.

Illustration of a PICC lineWhat PICC lines are used for

The PICC line can be used to give you treatments such as chemotherapy, blood transfusions, antibiotics and intravenous (IV) fluids. It can also be used to take samples of your blood for testing. PICC lines can also be used to pass liquid food into the vein if your digestive system is not able to cope with food for any reason. This means that you won’t need to have needles put into veins in your arms every time you have treatment.

You can go home with a PICC line in place, and it can be left in for weeks or months.

A PICC line may be helpful if doctors and nurses find it difficult to get needles into your veins, or if the walls of your veins have been hardened by previous chemotherapy treatment. A PICC line is also helpful if you don’t like needles.

How the PICC line is put in

 in an outpatient department or on the ward. It will be put in using a local anaesthetic.

First the skin in the area is cleaned with antiseptic solution. Then this area is numbed with an anaesthetic cream or injection, so you don’t feel pain while the PICC line is being put in.

When the skin is completely numb, a needle will be inserted and then removed. While the needle is being removed, the PICC line will be threaded through it into a large vein that leads to your heart. This shouldn’t take long and is usually painless. The PICC line will be held securely in place by a transparent dressing.

You will then have a chest x-ray to check that the end of the tube is in the correct position.

Close-up of a PICC line

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Linesports/PICCline.aspx#DynamicJumpMenuManager_6_Anchor_3

Living With Mesothelioma – My Diary- 4th Line Chemo Day 4 week 1 Wonderful Sunny Day Again

Spending the Bank Holiday at home has been very nice and has made a change but it means all our friends are away and I have missed them even if they have kept in touch via Facebook and Twitter, do you ever have a break from your phones xx Only joking it has cheered me up to know you have all had a great time.

There was room for us up there this year xxx

I got up late while Ray gets up early now but it means I have a cup of coffee in bed, its been a long time since Ray did that as he doesn’t get a chance as Im always up first.

I did get up when Ray took Louis out for his usual walk.

I Tidied up and then decided to go out in the car. Ray had to keep using his puffer though. It might be the warmth in the car or we both did to much in the back garden yesterday. You never know when to say right ring the hospital. But he did ease it with the puffer and is comfortable now at home.

He bought me a new keyboard and mouse, as know I have been moaning about this one sticking so now I have a new one.

I tried to  walk Louis while Ray was in the shop but I can only creep about and I feel so woozy, but I must say the side effects are going well.  One thing we have both noticed is my ankles are right skinny again. Does that mean my kidney is tip top condition now. I will have to ask what the readings were as no one has said, but as I started chemo it must be.

I bought long skirts to cover up my swollen ankles and now it seems I didn’t need to, but I will wear them, I should have worn them now but Im not in the mood to dress up.

Debbie Is back in Hospital and needs Oxygen when she goes home, Ian from Dubai is doing very well and has walked in London today after just having the Pleurodesis The op for sticking  Lung Lining to the chest wall and take a Bi_Op while there .  http://www.cuh.org.uk/resources/pdf/patient_information_leaflets/PIN2495_pleurodesis.pdf

So the sun is going down on a lovely day and I hope everyone is Ok for work tomorrow.

Rays Blog http://mesoandme.wordpress.com/2013/05/27/monday-41/  Monday

Living With Mesothelioma -My Diary- Chemo 4th Line Day 3 -Neighbour At last cuts his hedge right down so that is a good thing.

I swore I wouldn’t say this BUT!! Its so hot today. Iv taken my temperature and Im normal, But the house isnt.

Windows and doors are open its 8pm and it is still hot.

 My chocolates are even in the fridge

 

We have tidied up together and Louis Has had a lovely play at the park.

Ray had taken him for his usual walk this morning but after lunch of a low fat cheese salad we took Louis.

When I got back the bushes in between us and the neighbor at the back were all shaking and a man appeared over the hedge he was on a chair and cutting his hedge back. Brill so I went and spoke to him and we chattered and I put on a gardening  glove and got my Cutters out and dived in on this side so we have a tidy hedge at last.

So pleased I took my solar lights off the tree first or this man would have cut right through.

A very good job done and we got rid of some of the cuttings that were all on my side.

So all that hedge is down to the fence top now.

We have finished off watching Les Mis it wasn’t so miserable this time as we have seen it so much .

I feel fairly well on this Chemo. I go through times when I feel drunk, whoosie, But that goes off.

I have had a lovely pork chop rice and vegetables with a sweet and sour poured over it instead of a gravy and a maderin orange and yogurt with a  meringue nest.

So that was my day, soon be off to bed so just relaxing.

Rays Blog http://mesoandme.wordpress.com/2013/05/26/sunday-48/

Living With Mesothelioma -My Diary- Day2 Chemo 4 A sunny day thank goodness.

Yea the sun is shining for a bank holiday I do hope everyone enjoys it.

We Had to cancel going to Hamble which is such a shame as that is my Favourit Rally where I meet up with so many Camping Friends.

I woke up feeling well today but as the day wears on I get so tired so  have little snoozes.

I was able to sort lunch out and then Ray and I just popped around to the Park to let Louis have a great run around with his ball. I did through it and what looked like nice grass in a little mus turned out to be very boggy from yesterdays.

Back home I dropped off again and then decided to go out in the garden.

The little feller is all ways very curious

He watches a bee with great concentration.

The plants in the Pond have gone mad this year and really gron up tall. The fish are safe from the Heron this way. We have lost the whole lot to a Heron who nests out on the Salt Marsh One year so I found this was a great way to protect the new batch and it has worked so far.

We have the DVD to watch tonight of Les Mis So We will settle down after dinner to watch that and end up in tears again, boo hoo!!

Rays Blog http://mesoandme.wordpress.com/2013/05/25/saturday-51/

Living With Mesothelioma –My Diary– Chemo Day 1 Week 1 Oh yes! we are back in the fight again!!

Chemo Day Oh dear I hate it and I was so nervous about what I was doing but I neednt have worried.

Very efficient, everything all laid out in a 2 drawers and there was my tablet to bring home, Steroids and sick tablets. The chemo was delivered as they make it on site and so I settled into my chair and then the fun began.

They couldnt find a vein. They tried and tried and finally one behaved and gave up trying to play hide and seek.

So that means I have to have a PIC Line. I didn’t want that as it means a visit from the District Nurses to keep it clean.

So I have had Gemcitabine that took an hour and Carboplatin That took 1/2 hour a blessing after Cisplatine and Alimata taking 10 hours plus

They did give me antihistamine’s to make sure there was no reaction to  Carboplatin as they are both Platinums and they do cause a reaction in some people.

The day has gone well but I did get home and fell fast asleep.

I did feel a bit sick but I have taken more sickness tablets and 2 more steroid as they have to be taken before 4.30pm or you wont be able to sleep at night if taken later.

So thats it I have had a nice dinner of Steak pie and vegetables.

My next app is bloods on May 29th and PIC Line fitted at the same time.As Im back in Chemo , Carboplatin on Friday 31st –this is a hard going big hit

Rays Blog http://mesoandme.wordpress.com/2013/05/24/friday-51/

Living With Mesothelioma-My Diary- An afternoon at the Hospice to start a Research Trial for Breathlessness

It was a funny day weather wise as we had sun showers and hailstones, and it is so cold. Might as well everything in one day.

I have had a busy day today as I wanted to get everything all its it place and things like defrosting and cleaning the fridge, when your in chemo and feeling yukky its difficult to feel like any cleaning.

Then it was of to go to the Hospice today. I was approached to help with a Project for Breathlessness and I didn’t really know what to expect.

We sat with a family to wait and a nurse said to then that they would get the patient ready for them. I realised when the went to the chapel that that meant their relation had died and was there in the chapel of rest. That was a bit sad.

I was glad when the lady that had phoned me appeared and we went to a side room where she explained everything.

I was so pleased she could tell  me she had obtained info from my GP and so she knew I had Mesothelioma and all the problems that meant but I still seemed to be the right person for the research study.

At the moment patients go for Breathlessness classes i evry week for 3 weeks and they want to know if people can infact have one lesson and take home a DVD or have 3 lessons with a DVD.

I was Thinking ist was a bit weird but was ok to give it a go as I would like to know how to do breathing exercises with a broken Diaphragm.

We carried on and answered so questions about my life now and then the Nurse said they will phone me after each lesson and ask the same questions to see if there were any changes.

Then I was asked a load of questions about my life and how I felt about my illness. Then it was explained that these answers on each different set would be looked at by different teams of people and experts that were interested in the answers for different studies.

Another way for Asbestos Awareness  and the disease it causes so I was very happy to take part.

So I will have a Physio therapist for three visits. When I got home the Therapist phoned so I start the first one on June 4th so I will be able to  tell you more when she has been. In the meantime tomorrow is my Chemo day. So an early night and I will be ready to start the next fight.

Mr Nasty Go away again please so I can live my life.

Rays Blog http://mesoandme.wordpress.com/2013/05/23/thursday-48/

 

 

Living With Mesothelioma -My Diary- RIP Grahame a Wonderfully Brave Mesowarrior

Thanks for the cards and presents, Facebook friends and  phone calls wishing me luck for Friday  they do cheer me up as Im getting nervous as I have also had a letter from St Barts. well a copy of a letter sent to Dr Comonos that I thought she already had received and its say that I should only have Gemcitabine as I may still be Platinum sensitive so platinum desensitization is possible.

I have still got a chance at the ADAM trial as there is now I place left.

Now to go to the ADAM trial I need another Bi-Op  and by the time that result came back and could still be negative I will miss this place in Chemo. I truly believe I reacted badly because I came off the trial at Maidstone straight into Chemo therefore to much Toxic in my body. That also was the feeling of my Oncologist at the time.

Now I have to wait until Friday to see what will happen. I say go for the two and if I get any reaction carry on with Gemcitabine on its own. As I have been calling the shots on this round of treatment I will get my own way.—I think.

I have also had a call to go tomorrow to the Hospice and enter into a breathing trial. It is whether having lessons. for exercises is beneficial to us Meso Patients. I was happy to into the trial as It will help me as my breathing gets worse.

So That was my day. Ray has a great puffer now and when he used it he came back from a walk looking so well. that’s a great help.

We did dog walk when we went to Halfords  for new window wipers for the car.

We say goodnight to a Graham a lovely Mesowarrior, It was on the 14th Febuary that Lisa contacted me through my blog. She had found it as she was googling for  info on Mesothelioma and now in that short time he has gone. Bless him but he did manage to get to a Family wedding .

Our love goes to Jeanette  and Lisa and all the family at this sad time

RIP Grahame a true warrior xx

Rays Blog http://mesoandme.wordpress.com/2013/05/22/wednesday-44/