Living With Mesothelioma- My Diary- Saturday 4th Line Chemo 3rd session– So Tired !!

Yesterday was so very nice and sunny from early morning. Very early as I took the dog for his walk it was so nice. The birds were singing and the Cuckoo was well -Cockooing.

The salt marsh look so nice with the horses waking up and strolling around.

I had a great day but I have a nasty taste in my mouth from the chemo and what ever I do it doesnt go away. I have a good mouth wash but it only last for a while and the taste is back.

Ray took Louis out and he was gone a long time but I neednt have worried as he did well and the dog had a long sleep when he came back.

I did lunch of tomato soup and homemade bread then I feel asleep.  Im very tired with this Chemo it is a side effect so Im doubly tired as Mesothelioma makes you tired where it is hitting the lungs capacity of breathing in air and circulating the oxygen around the body.

When I woke up there was Louis looking at me again for another walk so off we went and Ray seemed back to normal and could do the circuit with ease. I think I can breath again and he can safely help me with the housework. He love to make the bed and wash up breakfast things so I will let him.

I called in the shop and bought things I was short of and we met every dog in town. It was amazing and I had a great time training Louis. No Bark ! No Bark! he didnt bark at any except 2 little balls of fluff that we tide onto a electric scooter outside the shop, barking their heads off. I allowed that one bark as even I want to shout shut up to then, one was enough but two was just to much.

We walked home and had a coffee then watch a film together. A weird film that we neither really knew what was going on it was on Film 4 dont you just hate that when it finished we both looked at one another blank.

I decided to make a fruit cake it is the weirdest one I have baked. No fat no sugar and no eggs. Just dry fruit and flour.

You warmed the dates up in water and then mashed that up. Put all the other fruit, currants, sultanas, mixed peel, flour,almonds all in a bowl then poured the date mix in and mixed all together

I baked it in my bread oven but it did say in a loaf tin.

It was divine and we ate a slice in the evening after a steak dinner and stewed apples and yogurt.

We felt so naughty and yet it was all healthy -a Saturday treat.

I had a message from a friend who’s Mother is very ill. So sad when its to late for Chemo when only diagnosed three months ago but when its found it is spreading into other organs, no pains are felt as it is growing. I wonder how that can be. It is eating into the body and you dont feel it, I know thats true as you hear me say that enough on here. I just didnt have a sign until my lungs filled up with fluid—my heart goes out to the family and I can only give words of comfort.

I was so tired by 8.30 that I went to bed and watched telly. I dont want to keep doing that as one of the signs the disease is getting a hold is that you spend more and more days in bed. I really think its the Chemo making me so tired and the fact going to be early means Im awake at 5.30 and then Louis wants a wee. As the fence is down between us and the new neighbour as she is going to have a new one built. But as its summer I dont mind slipping the lead on and taking Louis out to the nearest grass verge.

Rays Blog http://mesoandme.wordpress.com/2013/06/29/saturday-56/

Find rays Puzzles on here http://www.onestopmesothelioma.co.uk/

Fruit Cake Recipe

8oz dates stoned

half a pint water

6oz seedless raisins

4oz sultanas

4oz currants

2 oz mixed peel

6oz plain flour wholemeal

3 teaspoons baking powder

1teasp mixed spice

grated rind of a lemon and orange then the juice also

1oz ground almonds

and a few flaked almonds to decorate.

grease a 1lb loaf tin place the dates in the water and heat and mash when soft with a fork.

put all the ingredient in a bowl together and add the date puree.

put in the tin when mixed add the flakes on top and bake 160 or gas mark 3 for 1.50 hors but I put in the bread oven and it only took an hour.

 

Living With Mesothelioma -My Diary – 4th Line Chemo Chemo no 4 A long wait today Chemo was full to capacity

Yesterday  was a silly day as it was wet and nasty for a summers day.

I had to go to Chemo so we had a snack early and then our next door neighbour pulled up to take us and he had insisted that Ray shouldnt drive into Canterbury.

We got to the hospital early with half an hour to spare but it was full. Every Chemo chair was full and every seat in the waiting room was full.

I thought perhaps something had happened making the chemo’s up. But no the nurse said to many patients had been booked in and there wasnt enough nurses to attend everyone.

Just a bad day.

So we sat and waited and waited. I got embarrased as we had Dave sitting there but he enjoyed the Tennis on the TV and had his kindle but I bet he was wishing there were better places to be sitting than in a hospital,

At last I was called in and set up for Chemo. It all went very well as mine was only a 1 hour one today but the PICC Line had to be cleaned I had to take a sickness tablet and then there is the flush.

The lady in the next chair said she heard where I lived and she was in the mobile homes at Blean then told me her whole life story. But not say my son mt daughter my sister but Bert, Linda, chris, why do people do that, talk as if you know all their family. I just end up saying yes and no and hope that Im saying it in the correct place. I realised she was actually a very lonely lady and she needed to talk to someone so I let her.

Her mother had just died at 94 so I suppose she was grieving as well.

The time soon passed and I was freed from the chair and we did get home about 5pm it was a long day and after cooking dinner while Ray walked the dog I was infact very uncomfortable. Sharp pains and a sick feeling, I thought oh no this is going to be a difficult Chemo. I was so so tired to went to bed at 8.30and

I slept through to 8.30 this morning. I must have needed that. I have woken up with no pains and I feel fine thank goodness for that.

Rays Blog http://mesoandme.wordpress.com/2013/06/28/friday-56/

 

Living With Mesothelioma -My Diary- 4 th Line Chemo –A lovely walk in the country

We woke up to a lovely sunny day it makes you feel so different with the sun beaming -that good to be alive feeling, they ought to bottle it for the grey days.

Just a bit of housework so I went out and did some weeding and tidying the garden. I get lost in a world of my own out there and it looks better now.

I kept sitting down on chairs to rest but I did manage to do all round.

Made lunch but fell asleep for a nap.

Ray and I took Louise round to the park and Louis jumps out of the car and is such a happy dog running around off lead. Then I saw all the sheep so I put him on lead, I told Ray I wanted to see what his reaction would be close up. We walked him right in among them. He really did well and just looked at them and carried on walking through.

These were right on the path, they didnt care so neither did Louis

Look Mum!!

Lamb Chops for tea ??

We really did get near and he just didnt make one move I was amazed –Good Boy Louis xx

I really enjoyed the walk and Ray managed it as well and said he felt so much better than last week, our life is getting back on track and we must have some fun again.

I received a very pretty dragonfly necklace arrived with a thank you note from a Mesowarrior Andrea. The Mesowarriors had all worn the same necklace to Debbies funeral. What a lovely touch to include me in that. I couldnt go because of Rays heart op and my chemo but I was there in  spirit and thoughts.

I have hung all my necklaces up in the window so that sun shines on them and I have a brooch Deb’s gave me that hangs there as well.

Got home and had a coffee and we were both napping again but so was the dog, he was flat out.

I made a great dinner of fish cakes, using cod from the freezer and breadcrumbs with lemon in them. very tangy very nice. I coated the cakes with egg and breadcrumbs and fried them in olive oil. Ray loved them so they are a hit.

Tomorrow is Chemo day again —brilliant !!

http://mesoandme.wordpress.com/2013/06/27/thursday-47/  Rays blog xx

Living With Mesothelioma -MY Diary- 4th line Chemo —Bloods Day

Louis woke me up at 5 so early he wanted grass little devil so I took him for a walk and then picked some grass and threw on the floor for him I went back to bed.

I got up again at 7am but it was good we did as there was a beeping at 8.20am and i said they were emptying the skip. No!! they were delivering the bed settee. I had said use a small van no! they used a large van.

They had off loaded it down the bottom of our road and wheeled it up to our home.  Whoops it looked to large but by the time they got it in and it was in place it looked made for the room. very pleased.

We had to go out just after that as i had an early appointment for my bloods.

Dave next door wanted to drive us as Ray really shouldnt drive until the weekend so we set off.

Arriving at the hospital i couldnt believe we went straight into a parking space so I went to the Chemo ward and the men went to the restaurant for a coffee.

I was called in and I had my blood pressure and weight  taken. I asked about Chemo causing kidney stones so we discussed all the pain of the previous evening and showed them the tiny bit of gravel I had passed. Chemo and medicines can cause stones so as I have no pain today the nurse said she would note it but as my blood is checked for kidney function I will be covered.

That was it bloods taken and I could go so I met the men and we came home.

Then it was the Pilgram Hospice turn to turn up and they were really pleased with the Settee and a chair I donated. It also had 2 sets of covers from Plumbes and i really felt I was doing the right thing, raising money for a great cause and a way of saying thank you as I more and more come under the Hospice. Breathing exercises  etc etc . But I will come under them for pain control as I need it.

Ray found a great place to relax after Lunch

I then got the bug to change curtains so I washed them first and put them in the dryer and ironed them really a good days work. I felt like my old self.

Cooked dinner and really needed a rest tonight but –no phone call so bloods must be OK but so must my Kidney. Im drinking loads of water as the nurse told me to so that I flush everything through.

Maybe I need to keep that up and flush the Chemo through.

Rays Blog http://mesoandme.wordpress.com/2013/06/26/wednesday-49/

Living With Mesothelioma -My Diary- 4th Line Chemo Awake Early

I woke up at 2am and then 5pm and that was it I had to get up I just didnt want to lay there with my eyes open.

Making a coffee and working on the computer until ray got up. I was having to sort a project out so I was pleased to have the quiet of early morning.

Ray did get up and we had breakfast together and the day promised to be good.

It was a lazy day after that and Ray is looking great. He took the dog on a walk and came back looking good.

We had a lunch before taking Louis to the Park for a run but it was so warm he didnt want to run around. he is a stubborn dog when he wants to be.

The sheep were in the park anyway so I didnt like him off lead.

So he had a run in a section that was fenced off but he really doesn’t take any notice as his nose is looking rabbits.

There was so many buttercups out they were so pretty

We drove back home again and I watched some telly while Ray had a sleep. He is getting his strength back but he likes a nap. I was doing Ok but when I started to get the dinner  ready I had a bad pain in the kidney. Oh no! I got frightened that it would get worse so admitted  to Ray I had pain. He let me sit down and with my legs up the pain has passed. It might just be an infection or maybe not but things like that make you panic as infections can pull you right down and the Mesothelioma can get a real grip.

I have rested and I feel better just a bruising feeling. I have blood tests tomorrow so I will tell them what happened and they can investigate.

I feel so much better now anyway so it is just a little  hiccup. These things to frighten dont they.

I have got my settee and chair ready to dispose of and then Ray will see the new one in while I go the hospital for my Bloods.

Blood tests

In most cases, a blood test is carried out to assess the health of your liver and kidneys. This is important because chemotherapy medications will pass through your liver and kidneys, where they will be broken down. The medication can harm the liver. Therefore, if you have liver damage, it may not be suitable for you until your liver and kidneys have recovered.

Blood testing can also assess your blood count. This is a measurement of how many blood cells you have.

If you have a low blood count, treatment may be delayed until your blood count has returned to normal. In some cases, medication or a blood transfusionn may be required. Your blood count is important because chemotherapy reduces the number of cells in your blood.

Regular blood tests may also be carried out during your treatment so your liver, kidneys and blood count can be carefully monitored.

So it covers any of my fears.

Rays Blog http://mesoandme.wordpress.com/2013/06/25/tuesday-56/

Living With Mesothelioma -My Diary- 4the Line Chemo- Super Moon Last Night.

Had a better day today, when you go to the bottom the only way is up and I’m travelling up.

There was a super moon and we missed it here in the south east but many did see it.

http://www.bbc.co.uk/news/uk-23012909

Ray has been so much better today he got Louis Lead and set out for a little walk up the lane. He came back really happy that he had been able to walk without chest pain but he did sit done and relax. his colour  was good though not the ashen grey that I had seen over the past few weeks.

I had started the house work so I carried on but Ray found a long cobweb, so he is well !! I got my feather duster and went around the ceilings.

I made a lovely soup a fennel and Butter bean and peppers tomatoes etc etc Even Ray licked it. I had my grocers delivered this morning as ray isnt allowed to drive yet and walking round large supermarkets is tiring.

We got washed up and I asked Ray if he would like to go for a short round walk. He agreed but I could see it was tiring him. There are different benches he could sit on but he refused and he did get round but he dropped off to sleep on the settee.

We had a phone call to say we can have the new 3 seater Sofa bed, they will deliver it on Wednesday so we had to make phone calls to charity shops to take our settee and chair. I have 3 sets of  plumb Made to measure covers to go with it so someone will have a bargain and the money will go to my Hospice. Im happy with that.

I still have my lovely recliner so we have plenty of seating room when friends and family visit.

Good Night to our Wonder woman as she was laid to rest today another Warrior Angel xxxx

I dont want to scare people but I had heard that asbestos was in Talc Powder and we have all used it but today I found the link to it through a Australian Mesowarrior Lou and a web page http://www.fibreaware.org.nz/asbestosdiseases.htm

The Link Between Ovarian Cancer and Asbestos Exposure

Since the 1970s scientific studies have been evaluating the link between asbestos exposure and ovarian cancer. Some of these studies have involved the use of talcum powder on the genital area.
Talc has a long history of asbestos contamination since the minerals can naturally occur together and develop under similar conditions. For example, a study published in 1982 reported that women with ovarian cancer were three times more likely to have used talcum powder (also widely known as baby powder) on the genital area.
A 1999 study involving more than 1,000 women found the participants who used talc powder on the genitals had a sixty percent overall increased relative risk of developing ovarian cancer.

More recently, the International Agency for Research on Cancer confirmed that sufficient evidence has been gathered to prove that asbestos exposure can cause ovarian cancer.

In March 2009 the IARC announced, “Sufficient evidence is now available to show that asbestos also causes cancer of the larynx and of the ovary”

Cohort studies of women who were heavily exposed to asbestos in the workplace consistently report increased risks of ovarian cancer, as in a study of women in the UK who manufactured gas masks during World War II.
Studies suggest that asbestos can accumulate in the ovaries of women who are exposed to it. “Although it may have taken decades” worth of studies to prove the connection, it has been medically established that asbestos exposure can cause ovarian cancer. Additional research will continue to reveal the biological underpinnings of this causal relationship and will hopefully also help lead to a cure for this asbestos-related cancer.

I just think Women should be very aware that it could be the cause and that maybe the Chemo they use for this could infact be good for all Mesothelioma treatment. never know !!!

Rays Blog http://mesoandme.wordpress.com/2013/06/24/monday-45/

Living With Mesothelioma -My Diary- A quiet Sunday?

It has been a quiet Sunday really nice chilling out and trying to get Ray to rest. Bless him he so wants to do things because he feels so much better that he cant understand why he is tired and falls asleep. But it is the first day he  has been taking all his tablets and they are working to keep blood pressure and diabetes in check. They are working as everything is reading good and his heart beat it faster now as it has been so slow.

 

 

 

 

 

 

Things are getting good but he has to give it time to get over the op the heart is bruised. But he does look like his old self again with lovely colour in his cheeks.

 

 

 

 

 

 

 

 

 

 

When we look back and see this photo he can see he is better.

Im doing Ok still no sickness so Im happy and stronger to do the housework and walk the dog and Im cooking really healthy meals –we are both on track.

Had a lovely phone call from a friend who is being so kind and yet she lost her husband to Meso. She hadn’t realised there was a fast grower or a slow grower that I have. Her husband must have had the faster grower as he didnt have long once he was diagnosed.

I knew Debbie’s Death would rock our Community and some of the people that have lost their partners had stayed on to back Debbie with her work on Face Book ans all that she did to start our community when she found out about Prof Vogl. The treatment had worked for her and she was so grateful for that and she spread the word. It was Private and as such it did cost but some had a Pay out so that meant they could afford the expense or they raised it from somewhere as you would do anything for a trailed treatment if it was on offer.

I knew I could but I have to much disease and so I stayed with the NHS and they have worked hard for me so Im happy but a lot were not especially those that were told they should go away and accept that they should go and do all they want to and just enjoy life.

How can you do that, so of coarse they contacted Debbie and she would help them by giving all the info to go to Germany. They then had someone who would treat them and that’s what we all ask for –Treatment. They wouldn’t know how much longer they would have had if the did nothing but pain treatment but they know they did the best for their Mother, Father, sister, or brother.  But the fight took the strength from them and so they were so devastated when the went and became Angels.

Some have children and have had to bring them up on their own all because of a Man Made illness.

No wonder a lady of 6 years has said “really don’t think i can cope with losing any more ” friends”, Oh how my heart went out to her last night as she has tried to stay and has been a great help to so many and I thank her so much for always being there for me. As has others that feel they cant keep looking backwards they must look forward and enjoy the time they have on earth. Daughters must bring up their own families etc etc .

Life is for living is a very true saying.

I know how Ray has been through so much with me. The good and the bad times to such an extent he has had a 3 heart attacks and a Stent op to clear 4 blockages. The worry is all to much. My family have put their life on hold to be there for me and get me through these last 4 years.

We know all my treatment isn’t going to cure me they know Im holding on with my nails. Silly that I know I need new glasses but I have said “Its a waste of money” Crazy!!

Then we still have  a many new people getting the diagnosis next week and the weeks to follow that will find us through our blogs and Facebook when the google Mesothelioma and thatnks to Debbie and all the warriors we give hope when they read we have survived  1/2/3 and now with me and others through the world , 4th line they will be able to see beyond 3 months to a year Diagnosis and join us warriors you can feel the hurt in all our blogs we have been knock so badly so we have to dust ourselves off and start all over again people out there need our understanding and help as the fall ill this week and beyond and google Mesothelioma They need hope from us that you can fight this disease with every positive attitude xxx

 

 

 

 

 

 

 

 

 

 

 

 

Goodnight Our Debbie you have left footprints in the sand. as you did in the  Picture that Christine took of you  with Linda xxx

Rays Blog  http://mesoandme.wordpress.com/2013/06/23/sunday-51/

Living With Mesothelioma -My Diary- Ray is recovering really well and my Chemo is behaving.

It rained all night very heavy showers  waking me up now and again and yet I slept very well and woke up at 7 and realised Ray was sleeping so well by my side all safe and out of  hospital and safe at home.

It was only one night but I did miss him and so did Louis.

I have pottered about just doing little bits but lucky that in a Mobile Home it is easy to keep clean and tidy. I even took Louis on a longer walk as my Hospice Nurse told me to increase the footsteps and were trainers and not my beloved flip flops.

I came back and made a pea and mint soup with my home made brown bread, I sort of feel so good baking everything. Rustic and homely,

We watched a film on telly and then our neighbour Dave came to see how Ray was doing.

He wants to take me to have my bloods done Wednesday and then Chemo on Friday as he said Ray can then have a clear week to driving again in heavier traffic.

Ray can take me and Louis to his favorite Park for a run off  lead about Wednesday as that is about 2 miles . I took Louis out for a quick walk at 12.30pm and he sits by the car and digs his heels in and wont move. I dragged him to the grass but no he wants Ray. So we came back and tried at 4pm and that was a good walk. He really is a stubborn dog.

So you can see this Chemo is going through my veins and Im really tolerating it. Im so pleased. I truly believe I will get through 6 sessions and finish in September now I Know its working as my voice has come back again to normal as it goes very hoarse when the Mesothelioma grows back and the pain in the shoulder starts. So fingers are crossed.

I wont write anymore chit chat as I want you all to read Rays Blog he has done a great write up of his stent Operation and I made him send it to British Heart Foundation as he didnt have it through the groin so it would be great if all hospitals did it that way as his recovery is so good. He had the Angiogram through the groin and he was 2 weeks before the pain and bruising went down

http://mesoandme.wordpress.com/2013/06/22/saturday-55/ Rays Blog

Living with Mesothelioma- My Diary- Ray came home from Hospital and I have had 4th Line Chemo Day I- 2nd double session

Gosh Its been a run around day today. We had a plan and that was for our son to come down and take me to Chemo for 12.30pm appointment.

Ray phoned and said the man in the next bed came from the next road and will bring him home at 10.30am Ok Phoned our son to tell him but he was already on the road and in streams of traffic on the M25 so he said he will still come down to take me to Chemo and fetch me home.

Phoned Ray back to tell but thought of asking where did the man live –Broadstairs??? thats not in the next road.

Terry arrived and I told him we both agreed that was silly so I phoned Ray to tell him that as he had got here early we will pick him up and then he can stay in the car and deliver me to Chemo –BUT Ray didnt have his phone on. We had to phone the ward and he was still there so we took Louis for a wee and shut him in and drove off to Ashford.

We got there at 11 but Ray was waiting  for the Pharmacist to deliver tablets –OH NO!!! we all know how long that can be.

Ray spoke to the Ward Sister and told her we were taking me to chemo so she pushed his order and the man next bed said “Where is mine have a long wait! the nurse said she had got his as well so he was happy.

We said our good byes but the man said Im buying you book ray has told me about you and I so admire you. How sweet but above all Ray had been talking which is a great therapy.

So I was on my way up the A28 to Canterbury and arrived in plenty of time. I saw them off and went in.

They soon sorted out the pre chemo drugs Sickness drug washes and Antihistamine drugs and Steroids. Then they informed me My Chemo hadnt come down it was  1.00pm The chemo was coming down at 2pm so I just sat there.

When it came down from the Pharmacist at 2pm we got started and I finished at 4.00pm They keep saying sorry and I keep saying “Its so much better that Cisplatin regime that took 10.12hours.

I had phoned terry to picjk me up and when i came out I phoned to ask where he is ” Im over on the side” I looked to my Left and he said I was looking the wrong side. He he !!!I said you can see me cant you Oh ok I see you now.

We didn’t take long to get home even though we called in for some Fuel as he was on the red.

It was great to see Ray when we got in he still looked very good and I got on with a dinner as I had made the shepherds pie and put it in the fridge all ready for us.

Then a knock at the door and the District Nurse ask me if I wanted my PICC Line cleaned. Oh Dear I had it cleaned at the hospital but she wanted to come and look at my notes.

We had a long talk about Ray and myself and she asked if I wanted a Home Help. Oh no please I cope and its not for long and Ray will be back and we will work together on the housework It really is no good I would have to  do it before a home help came –you cant have it untidy.

Funny enough My brother has just told me his partner has had a knee op cancelled because she had an Appointment for a MRI Scan after the date of the op so the surgeon cant do the Op until he hasa clearer picture of the ligaments. My pet hate why do they give the appoint for the op or for my Oncologist first Why not give the date for a scan first. I know the Surgeons and Oncologist complain about it why dont they listen .

Well thats my Day, Our son has got home and the traffic was good –amazing on a Friday night that the M25, M3, M4 was good.

 

http://mesoandme.wordpress.com/2013/06/21/friday-55/ Rays Blog

 

Living With Mesothelioma-My Diary-Ray is in Hospital and we have lost our wonder Woman Janelle xx

Sorry I didnt write a blog yesterday but life was very busy as we prepared for Ray to go into Hospital. The William Harvey

Our Neighbour has taken him in as it is at Ashford but he was amazed I didnt go and now says he would have picked me up  later. I have really be listening to people as I have been in a world of my own. So much has happened that I go very quiet and have to back up my brain and get thoughts into place.

Anyway he is there and the Op will be sometime today although I have tried to ring him and got voice mail so was wondering if he is in theatre already.

He will be going through all the checks they do a thousend times –date of birth, address, have you had this and that . So many questions and yet its on the system or in the notes.

So I have thrown myself into housework after I took Louis for the same walk Ray does with him. Goodness knows how as so many cars use the small road that time of the morning on their way to the M2 or the  A2 gosh it is awful. So I wont do that again I will go on a walk that I know and is a whole lot safer.

So I will now relax and wait for when the op is over and then we all can relax.

Thanks for all the good wishes.

This is the day of Debbies Funeral and Helens.

Two lovely angels in heaven together.

So many people have traveled to Plymouth to be with Debbies family. It will so hard for them as those attending are warriors that have Meso or their family have had it or family that have died it begins to show just how many are loosing the battle.

The Janelle our little wonder woman has lost her fight and so it goes on and on.

Goodnight or little Angel you fought a great battle now rest in peace xx

Ray didnt blog only did a puzzle that everyone has grown to love

Thursday puzzzle : http://www.onestopmesothelioma.co.uk/