Living with Mesothelioma-My Diary- Chemo day 8th— 4th Line Its nearly over.

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Saturday morning and I feel Ok if a little washed out.  I had to go to the hospital for my chemo session and it turned out to be a long afternoon. The Chemo is made on the day in the morning and the Pharmacy seems to always be slower on a Friday. Patients in the morning are late so it make the afternoon sessions even longer.

They only work 5 days and 9-5 so they need to start early as patients come in from 8am so I can see the problem and will raise this at my next Lung Dog Meet.

It was the third visit this week for me, bloods, Oncologist and now chemo so I can see how this wore me down and I became very sorry for myself.

My appointment was for 2pm but I didn’t get my Chemo until way past 3 due to my pick line not giving blood. I thought I was going to have to have another xray to check where it was, but no as it was easy to get the saline in they went ahead.

It was delivered in half an hour but and everything went well.

I took a piriton tablet and the poor nurse panicked as to what I was taking as she is training., and here was a patient self medicating, I had been given a prescription by the Oncologist.

I also had a trainee to clean my PICC line and she was pulling it the wrong way. I thought she would pull it out.

A nurse asked if I would show mine to a new patient who was frightened to have one and I said it was so much easier than trying to find the vein. I also said I don’t wear my sleeve while showering, The nurse picked me up on that later as I was going home. ” Mavis you are naughty, cover the PICC line when showering as the cover we put on isn’t waterproof. Whoops!! It isn’t a sterile site if I don’t use my sleeve to protect.

My Macmillan Nurse did walk by  and said hello and I told her that after all these years I had a blip and felt so sorry for myself but would she tall my Oncologist  Im here having my Chemo and I feel better about things. I do owe it to her to finish the coarse so they can start using the Gem/Carbo Chemo on other patients. Paving the way is always on my mind and I hope I get a great result in the scan so this becomes  the norm for 4th line Meso sufferers.

I did eventually get out at 4.30 and we traveled to the supermarket to shop for the weekend treating Louis to steak to say sorry for leaving him such a long time.

He greeted us as usual and had obviously been asleep all the time.

I cooked the dinner although I all ready had a chicken in red wine prepared (thank goodness for microwaves) but I sat in a chair and fell fast asleep. I was shattered.

Today I feel Ok but we have cancelled going away to see friends as I must be careful about infections and colds and I dont feel 100%, I just need my own home where I can drop of to sleep when I want to. Just one more Chemo day Friday week and Im there.

Rays blog http://mesoandme.wordpress.com/2013/08/30/friday-62/  

Living With Mesothelioma-My Diary- Oncology Appointment Chemo is working.

flowers

A funny day today as i just could not wake up. I felt so grotty but then I have felt this way all week. I keep falling to sleep and that frightened me as that is a sign that the Meso is winning and I cant allow that.

As I had to go to see The oncologist today I waited but It old Ray i think I wont be going on with the next 3 Chemos, Tomorrow then a week off and then 2 weeks chemo.

I really thought the chemo was causing an allergic reaction. It started last Friday and I have been fighting it all week.

So we had a quick lunch and off we went to the Hospital, Kent and Canterbury.

We did find a parking space but it was 2pm and my appointment was 3 PM. Ray dropped me off and went and parked up. Lots of lovely patients were in the waiting room. Different nurses I have met over the years said hello. It is a happy friendly place.

Ray came in and we had a long wait as the Oncologist is always late but she allows the patient to ask every question, to take their time and make sure they understand everything.

It was my turn in the end and I said Im worried about Allergic reaction but she thinks it is just in the lining of my nose and eyes so she wrote a prescription for tablets to take when I get the feeling. She has said the Chemo is working  and it is beneficial to finish the coarse.

I realised as Im the first one she has had on the Gem/Carbo Chemo she needs to see the whole story so I will finish it.

I said I want to be able to receive 5th line ,that Im at 4 years and the percentages are going down now . She laughed and said you have just proved all the figures wrong Mavis, there is a trial coming out this year in Maidstone and there are trials also at The Royal Marsden so lets see as if you are stable and shrinkage, as they don’t have you on a trial until the Meso is growing again , so  there will be a trial waiting.

I cheered up and we said bye until the scan result at the end of September.

We came home and I was shattered but I have perked up after dinner and Im prepared for tomorrows Chemo.

Rays Blog  http://mesoandme.wordpress.com/2013/08/29/thursday-58/

Living With Mesothelioma -My Diary- Bloods taken and a surprise present came.

A very tiring day today. I had to go to the hospital  to give my bloods so it was all rush to get out early.

I just couldn’t wake up and felt like I was in a dream world. Ray got me to the P&R and we did get the hospital bus.  I sat in the waiting room like a zombie, just going through the motions.

I was called in finally and I explained how I felt and that I was convinced my bloods must be out.

My blood pressure was good my temperature was great, so what was I worrying about. It is the feeling of my being allergic again, it does feel that way. The sister said to discuss it with My Oncologist tomorrow and thats what I will do.

No Phone call so my bloods have to be OK. Just a bit of panic from me.

We got home and I made lunch for us and then I pottered in the garden as it was so nice and with heavy gloves on I have done a little bit of tidying up.

Back inside I fell asleep for a while and felt a little better.

I had a lovely present from my dear friends Christine and Mark and I loved it.

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So pretty and great for my candle lights –Thanks xx

Ray has been washing up the rubbish and sorting the dustbins, I cant believe we are so wrapped up in the quest to get our rubbish taken away, this has to stop!!

Rays Blog   http://mesoandme.wordpress.com/2013/08/28/wednesday-57/

Living With Mesothelioma-My Diary- A happy Birthday was had today

Spread Your Wings And Fly!

A target day today was reached -My Birthday Im here after another year. Still on Chemo but Im here for a Very Happy Day and loads of cards and lovely messages on Facebook and all my forums.

Thank you so much.

Mind you I spent the day asleep around Dinnertime as I was shattered. This time this chemo has been very tiring and so I believe my bloods will be out tomorrow but we shall see.

I did sleep on to 4pm so we took Louise for a walk to see if I could wake up to go out for a birthday meal.

It did wake me up and I got changed and off we went to the restaurant.

It was early so there were families and children seated and I was amazed at how the little tots order like grown ups and eat lots of spicy food. But they were all so well behaved.

We ate to much and were bloated IMG_0040

I still made room for a lemon cream sundae–Just!!!

We drove back home and I had phone calls from family and friends and a special friend wants us to go camping in Robertsbridge so we are trying to work that in with my Chemo. We need a catch up as they have just got back from the States after 6 months and we have missed them so much.

There was a note on the door step to say flowers had been left in the shed. Curious we went to the shed and yes there was a wonderful large bouquet of lovely flowers .

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They were from Chris and Sylvia Ward

Sensible health & safety advice Hampshire · awardhealthandsafety.co.uk
They were the lovely couple at the IATP Dinner and Dance and they sponsored my lovely award. Thanks so much you two it was a lovely surprise.
All in all it was a wonderful birthday and the sun shone.

Living With Mesothelioma -My Diary- Bank Holiday Monday and the fun My Mesowarrior Sisters Tracey and Angela are having

boxing gloves
If everyone went through the experience of cancer and survived it this world would a much better place,cause then we would know what is more important in our lives.like love,kindness and caring for our fellow man and family.not greed and selfishness,cause that’s the only time you really realise what really matters.

It feels so sad all that is going on in the world of politics and we are going into Syria now, where will all that lead to but it is so sad.

I feel I do know what is important in my life, Family Friends and neighbours and to live in peace and tranquility even to say sorry for past wrongs and try not to make future cock ups. I have a wonderful family around me and a wonderful DIL who I love as a daughter now. We have so much to admire in each other.

Im like this today as my Chemo does seem to want to react to my body now. I feel today that I have become allergic again so I will defo talk to the Oncologist about not having the 6th one or if I do that I have the proper Antihistamine injections again.

I have got up early as Louis wanted the grass in the garden at 4pm that boy does have a weak tummy thats for sure.

We came back in and slept till 6am and got up again. It was warm but so cloudy and yet the sun has peeped out again and is lovely and hot.

We had sorted all the rubbish and Ray stayed out there as the Lorry came to collect. I young boy ois doing all the work and he was taking things out of peoples bins he said this week but next week they wont take it.

Ray asked for him to explain what we were doing wrong. He said the plastic container was Ok but the cellophane cover was land fill so he would have marked it contaminated. I thought the idea was to recycle everything and help land fill space?? Soo we have another weeks reprieve.

We went out for a ride after Lunch and bought the dog the Meaty strips he loves from the range and then I popped into M&S and enjoyed picking up some nice things to cook for dinners.

I did get the washing machine on and the washing is almost dry already.

Angela and her sister Tracey are having a great day raising money for the Hospice in which their father died.

She is in a cage all day dressed as a Canary

Hard to believe she is in there

Photo: Are you ok banjo?

She has worked so hard as they all have bless them xx

They have my book for the Raffle or as it has been signed by Liver footballers Philippa Countonia, Colo Tura and Hosa Rekia she is really hoping to Auction it if there is time. Hope it does well. In fact just had the message—– Brill pics xx ur book is being auctioned tonight mave n very much appreciated!!! Thank you xx

Now Im excited to see what it goes for xx

http://www.justgiving.com/angela-caulfield0

Rays Blog http://mesoandme.wordpress.com/2013/08/26/monday-53/

 
 

Living With Mesothelioma -My Diary- A very wet day was had by all and flooding in many places on the East Coast.

Whoops realised I didn’t do my diary for Saturday, I chilled right out and just spent the day on the computer answering lots of messages.

I also took a phone call from a delightful man who is suffering with Mesothelioma and struggling with the fact Chemo isnt working so is on his way to see Jeremy Steel at Barts.

I hope he is able to have my Chemo as it is so much kinder than Cisplatin. and Alimita. It was a lovely chat and we both enjoyed talking as he is such a positive man. I always say be positive but deep done know the fears that we have. His daughter told me he liked talking and will do so again as we travel through the journey together.

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Yesterday It rained all day it just didn’t stop well maybe for a few minutes but mostly it rained and rained so making it very bad for the people away at the coast.

Photo: Holy crap, this rain is way too much look at Southend seafront  shit this is scary.

This was Southend which has seen the worse of the rain and this is just opposite where we live. we can see Southend on a good day from our beach. I expect there will be lots of pictures today as the rain was so heavy in the night.

I did feel so much better yesterday though as the rain held me in doors so I had to rest. As I feel better I think I will go for the 6th session of Chemo but I have to get Fridays out of the way first so hope my bloods have picked up.

The good news of the day (and we do love romantic stories ) The Duke and Duchess of York have rekindled their love (I don’t believe they have ever lost it as we have seen them together so much with their two lovely daughters) Good Luck to them xxx

The most tragic news yesterday was the death of a very young woman with Mesothelioma that only had it diagnosed 17 days before death and at 29 year old.

http://www.chroniclelive.co.uk/news/north-east-news/northumberland-woman-rachel-dodds-loses-5775498

Bubbly Rachel Dodds lost her fight with cancer – just 17 days after being diagnosed with the disease.

The 29-year-old had been complaining of a bloated tummy when she was given the devastating news that she had a rare type of cancer.

Rachel, of Ellington, near Ashington, Northumberland, was diagnosed with peritoneal mesothelioma.

The condition only affects around 2,000 people in the UK every year and attacks the lining of the stomach.

This is frightening as it doeskin say how she was in contact with Asbestos so it leaves you wondering if it was in school or DIY in the home. The second wave we talk about so often as to many people dont know of the danger in the home and I think B&Q and stores like that should have notices telling people to be aware of where Asbestos can still be in the home and although safe until disturbed or is crumbling.

RIP Rachel xx

Rays Blog http://mesoandme.wordpress.com/2013/08/24/saturday-60/

Today we have my Brother visiting so a tidy up and dog walk is first and as it isn’t raining at the moment (fingers crossed) we will have another relaxing day.

Just had to show you this –the day Southend flooded http://www.youtube.com/watch?v=jN2zYzxzLio

Living with Mesothelioma -My Diary-Oh dear Chemo is playing up now so I have to be sensible now.

A lovely hot day weather wise Thanks to my Facebook friend Jackie this really cheered me up today xx

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We went to the hospital for 1.30pm chemo and they called me on time.

The Picc Line behaved its self so the saline went in then the sickness magic fluid went in.

I took my steroids and the Chemo came down so I got off to a great start.

I thought I was getting a bit stuffy again though, just a bit and Ray said I was going a bit red across the nose. It wasnt as bad as last time on the Cisplatin,

I was right near the end so I haven’t said anything but I have an appointment with the Onc next week so I will have a chat.

Then Little Katie came in and was pleased to see me. She told me they had a great talk with my Onc as my blood count was done to 98 and they like it to be above 100 and 200 was the norm.

DR Cominos said as it was on the border line I could go ahead with chemo but I was to watch out for any bruising or bleeding from the nose,  if I did i was to go to tha Cancer A&E and ask for my bloods to be done there and then.

Of coarse I will that’s a promise.

I can see me having to cancel chemo 6 as I have come home very tired and I know that things are changing and I dont want to push myself as I have to keep everything A1 in case i need 5th Line Chemo.

We do go through things don’t we.

I wont go camping that’s for sure as i might have overdone it last week and I will rest my body. Thank goodness I have an appointment next week i can get all this sorted.

Promise i will have an early night honest and i will feel better.

One thing that was very nice some of the Nurses came to me to talk about my book that I donated to the ward, They wanted to know different things about Mesothelioma and How i came to write the book. So pleased I have had them interested and Raised more Awareness among the young Nurses and they have said would I do Book 2 -we have it halfway done but still a lot more time needed but made me so proud  and I have raised another £1000.00 so far this year, great news.

Rays Blog http://mesoandme.wordpress.com/2013/08/23/friday-61/