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

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.

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.

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

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

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 .

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.

http://mesoandme.wordpress.com/2013/08/27/tuesday-64/ Rays Blog

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

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

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.

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.

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

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/

Living With Mesothelioma -My Diary- Sorting the trash- and some of my thoughts

A very wet day today from early morning right through so a day to stay in. Out came all the dusters, polish, and bleach. I blitzed the place as its chemo day tomorrow and I have to be germ free. it becomes more so as the more chemo I have the more infection can get in.

I had fun anyway as I used elbow grease.

Ray took the dog out so I asked if he would help me and sort the recycling out as they wouldnt take it last week. I wanted to know whatI had done wrong.

He was gone for ages and it started pouring with rain bless him!! He came in for lunch and then went out again.

The job is done now lets see if they take it on Monday. It might be a bank holiday but living at the coast we still have a collection.

I agree with the recycling but to have to stand there washing it before it goes in a bin is making me laugh. I have a rack for the dishes and one for the rubbish ??/

I snoozed in the afternoon and now Im wide awake at bedtime now.

My friend phoned me and she has been up to see a Harley Street Doctor who has said that the UK has the best treatment for Mesothelioma so stay with the NHS but he also said that it is impossible to say how long a patient will live. You cant beat the fact that the will to live is very strong so a positive attitude is the way to go. he also said to go for a trial if offered as people have been so brave in the past to have a trial and that’s why we have Cisplatin and Alimata today. ………

I have always remembered the brave people who have gone before me and because of them I have survived for over 4 years now and enjoying my life.

I light a candle to say a big thank you to the Angels tonight as So many warriors have become angels. When will all this nightmare finish, when will the Governments listen to us and Ban Asbestos and remove the danger from our buildings and Schools and save our future children from the danger of Asbestos.

Rays Blog http://mesoandme.wordpress.com/2013/08/22/thursday-57/

Living With Mesothelioma -My Diary- Bloods Day

A very nice day today.

Off we went to hospital for bloods but we went early so I could see my friend Tess as she was seeing Miss King today so as I was going I wanted to meet up.

We got the P&R bus but he went past the wrong turning, a lady rung the bell and said she had got on the wrong bus. The driver assured her she hadnt its just that they were digging up the road at the back of the hospital. Gee why didnt he tell us as I had thought the same thing.

We arrived at the hospital and I went to the clinic where I knew miss King would be.

We could see shadows under the door so I knew someone was in there, Im a true detective he he !!  yes as the door opened I was right. Tess was n there and we smiled, so she knew I was there.

Out they came and we cuddled hello it was so nice to see her and Alan again we get wrapped up in our own loves and dont see each other but we have Facebook to keep track of how we are going.

Miss King came out as well, now where else do you get a Thoracic Consultant say ” me too I want a cuddle where is my cuddle” I squeezed her tight as I always remember how great she was when she did my Talc Operation and video assisted Bi-op. She always sends messages that she has asked how Im doing and she looked through my Scan to give me the result. Nothing is to much trouble –I adore the woman.

 

We had to say goodbye as I had to get to Cathedral Ward for my appointment, I got there early though and they had a busy waiting room, we were told that they were running late as they had 2 patients that were very unwell. I said dont worry and I was sitting by the side of the lady that was ill and she did look so bad, A heat pad on her tummy, I felt so sorry for her.

I was at last called in and weighed –oops to heavy in my eyes and I said I dont like my wait. Katie said WHAT!! we wont you to eat and its a lovely weight. I asked how it could be. She said it means you are coping with the Chemo and your appetite is great. So carry on eating. Ok I can do that he! he!

Bloods taken we left and returned to the car where we traveled to Aldi.s for a few things as it is Bank holiday this weekend so the shops will be like Christmas –Mad and packed.

Home again I put things away and made lunch.

I rested in the afternoon as Im shattered from the weekend.

I did take Louis for a little walk about and wow he walked passed 3 dogs that were  here with neighbours, have I really got a good dog at last.

Made dinner and thats me done.

No phone call so Bloods are good to go for Fridays Chemo no 5 brilliant Im getting through it all.

My Candle is lit again for Rose Piper  yes We have lost another warrior today Dennis Piper; passed at 4:30 am Alaska time 8/21/13. RIP and goodnight to a Mesowarrior xxx

 

 

 

 

 

 

 

 

 

It is so sad as one by one the Warriors pass on it really brings home to us that there is no cure that chemo does not bring many years relief from Mr Nasty. I hate Asbestos and I hate mesothelioma, a man made substance is killing such lovely friends.

Quoting my lovely friend Christine of CMN Training Solutions —

I often think that some people just do not get it. Raising asbestos awareness isnt about news or stats or facts.. It should be about banning global asbestos mining, production, export and use of.. Maybe it is me that is off course? Heart tells me not.. walk a mile in a victim of asbestos exposures shoes #Mesothelioma

Rays Blog http://mesoandme.wordpress.com/2013/08/21/wednesday-56/

Living With Mesothelioma My Diary- A Week Away at our Sons and Malvern

I have just got back from a great time away camping. I took advantage of my week free of Chemo and we have been to Malvern to the Motor home Show.

First though we traveled to Slough where we stayed on my Sons drive, I love doing this and we sleep in the Motor home so we say goodnight and leave their house to sleep in the Van.

They had made some great meals, Last Tuesday it was minute steaks and they were just so nice as my DIL has changed my mind on rare steak. It melted in our mouths. Wednesday we had a great curry.

We said goodbye on Thursday and traveled onto Malvern for the show.

Its easier to do it in pictures I think. But health wise I have done so well. Very tired but did manage to walk round the show and look in some Motor Homes. I did use my walking stick which meant I got round slowly and a bit breathless uphills but I did it and have had a super holiday with lovely people,

A good meal to send us on our journey

All the great bunch of friends we camped with so many dogs as well. Louis was so good and he walked around the show on the friday where everyone seemed to own a dog and Louis just walk around with his nose straight in front and didnt bark at one of them. He sure did win our praise for being so good. He even visited my friend Vivs van and sat with her until she bought him back.

So many people stopped by to see us and they all popped in and Louis was so good.

Seems we have turned a corner this holiday.

This little dog won our hearts as well So well behaved I wish Louis had been with us as a puppy and he would have been as calm as this.

We had our own band as well we didnt need to go to the Entertainment and pay when we had our own members playing. Well done we did enjoy this.

We had a smile on our faces all the weekend. Motorhome fun is just that fun !!!!!

Our own Rose dressed up with her husband and went off to the western night.

Sunday morning we had a bacon bun breakfast which was great fun and really tasty.

Jim, who runs Motorhome Fun was the chief and they cooked 770 rashes bless them so they worked very hard.

On Monday our last night we had the musical members each taking a turn on their instruments and a Barbie as well a perfect night Under such a lovely sunset.

So saying our goodbyes we traveled to our  Sons again where we had another steak meal and they gave me their birthday present and card as we wont see them before my birthday.

This morning we had breakfast in their lovely garden and said our goodbyes to travel on the dreaded M25. Yes there was an accident between a lorry and a car which was badly squashed with Fire engines and ambulances trying to sort the poor driver out.

We stopped at Clackets Lane for a rest and then got to our home really tired out.

I  turned on my computer dreading if there was any bad news and yes we have lost a Warrior. Goodnight Barbara Whitehead. Julies Mum we messaged through her illness.

I read the message –Dear Mavis, just to let you know that mesothelioma finally got the better of my mum as she passed away in the early hours of today, 13th August. Naturally we are devastated.–

So sad as she has gone so quickly bless her

So My candles is lit for her xx

Rays Blog http://mesoandme.wordpress.com/2013/08/20/tuesday-63/