Mesothelioma Diary –Day 2 from the bad news. So went shopping in Canterbury

I had a on off sleep last night but at least I managed to calm down and sleep a bit.

So I was up real early again and Ray said he had to go to collect his new Specs so the dog walk was done but only around the park as I felt so low and it was so cold that breathing is difficult.

We got back to put Louis away and off we went in the car to the Park and Ride and although there was a strike on it wasnt packed at that point, there was more children around than usually.

We arrived in Canterbury High Street and I waited while Ray was fitted with the glasses, they looked good.

We looked at the Christmas Market again

The German market

Then we walked all down the High Street To the Westgate

Westgate

I managed to buy a lovely Pink Jacket for Christmas do’s so I was well pleased and we had a look at the new Marlow Theatre

http://www.marlowetheatre.com/page/3132/Television-stars-having-ball-in-The-Marlowe-panto/41

Two of television’s biggest, brightest and most talented stars will be appearing in this year’s Marlowe Theatre pantomime.

John Partridge (best known for playing Christian in EastEnders) and Stephen Mulhern (entertainer and presenter of Magic Numbers and Britain’s Got More Talent) will appear in a brand new production of Cinderella, the first pantomime in our new theatre.

John will be taking on the role of Prince Charming, while Stephen – who was hugely popular when he appeared in two pantomimes at the old Marlowe – will be playing Buttons.

We went to Wlkinsons and had a little spend up then it was back on the Park and Ride to the car.

Called in at Halfords to buy a bike rack for our sons car

Halfords Rear High Mount 3 Cycle Carrier Strap Fitting

and also Marks and Sparks to finish off a hamper that Im doing for the pair of them.

By the time we got home i felt satisfied that we had had a good days shopping.

Must admit I fell asleep and felt so washed out but coming round now and cooked a dinner of Steak Pie

Relaxing now !!!

http://mesoandme.wordpress.com/2011/11/30/a-rollercoaster/  Rays Blog xxx

Mesothelioma My Diary Well no more week 7 day 6 of the drug trial the news is not so good today

I couldn’t sleep last night, tossing and turning that at 1.15am I gave up and got up.

Played games on the computer until 3.15am and took Paracetamol and went back where ray was snoring his head off and Louis was laying flat out on his mat.

I crept in and laid down and managed 3 hours but my head was so thick that nothing seemed real. nature must have taken over and filled my head with cotton wool so that I couldnt think any more thoughts.

We got up and showered took Louis for a walk in the wind and the very grey morning.

It was no good we set off even if it meant being early for the appointment but we were both on edge.

We managed toget a parking space –only about 3 left though as its so busy in the mornings.

Booked in but Karen soon came to see me and told me that the Oncologist from Canterbury had been in and was very interested in having me back in K&Canterbury. So then I knew My Mesothelioma was defiantly growing back.

Would I be going back to St Barts , no I said as I have given trials a go now it is down to serious chemo.

Ray and I sat and had a coffee and waited to be called in, Karen soon did that so off to the room to be greeted by my Doctor.

I said I can see on your faces things are going wrong, it is showing so just go for it, tell me what it is.

Well my Mesothelioma has all grown back and I was shown on 2 scans each tumour and how big they had individually grown, but there was no new tumours and it hadn’t broken into my tummy   through the diaphragm.

So it has gone rampant yet so we still have time to zap Mr Nasty (only its a lot of Mr Nasties )

The Oncologist from K&Canterbury has agreed to have me back and we will proceed  with Alimta/Cisplatin chemotherapy regimen which is the first Food and Drug Administration (FDA) approved treatment specifically for malignant pleural mesothelioma. This is currently considered the most effective first-line treatment for mesothelioma patients who are not surgical candidates. A multi-targeted antifolate drug, Alimta works by blocking the enzymes necessary for DNA copying and cell division. During the clinical trial process, Alimta/Cisplatin improved median survival for pleural mesothelioma patients by approximately three months over treatment with Cisplatin as a single agent.

It worked before Please let it work again.

We said our goodbyes and Karen gave me a cuddle as we have become such friends, everyone has been wonderful and I cannot fault the NHS with the way I have been treated.

Ray and I were so numb we went to the staff cafe for a lovely pork roast dinner. Some people when worried don’t eat –I do ha ha !!!

We didnt really start talking until we got into the car and was traveling home again –the last time from Maidstone hospital.

On the way home we called at Brogdale to buy ciders for Christmas and present for a friend

Article photo

Brogdale Farm at Faversham are very proud of their Ciders

“Cider has been a very important drink from the Norman Conquest –

at one time the main fruit growers were the monasteries and about 96

per cent of the apples were made

into cider because it was much safer

to drink than the water,”

“Up until the 1920s in Kent and Somerset, part of a farm labourer’s wage would be paid in cider and

at harvest time the daily

allowance was half a gallon.”

Apple trees are surprisingly quick

to establish, too: from planting a maiden tree you get your first fruits

in the third year and you’ll be in full production by the seventh. Definitely time to get home and start planning

a mini orchard…

We made for home when we have bought our wares and was so pleased to get the kettle on.

What a day.

After a coffee we took Louis out for a walk again down to the Harbour, the wind was so rough as we walked around so we were glad to get back to the car and get home again where I did cat nap for a while.

Tea done and relaxing –the end of a very nerve racking day so now I wait for appointments to come through the letterbox.

http://mesoandme.wordpress.com/2011/11/29/a-day-of-hope/  rays blog xx

Mesothelioma -My Diary Week 7 day 5 of Chemo and Drug Trial –Bad day!!!

I got up after a lovely nights sleep at 5am, I couldn’t believe it that was great and you get up and feel so much better for it.

Ray got up8.30 and we had breakfast together again and I got my shower. It was colder today and there was a very heavy frost on the roof’s but I thought it was going to be a good day. How wrong can you be.

The phone went early and it was a call I was waiting for from Maidstone Hospital. The result of my scan, Karen was saying Im really sorry Mavis you have to come to see the doctor tomorrow, I couldnt take it in and I just burst into tears, I haven’t done that to much but the moment was to much.

I agreed that I would come to the hospital for 11.30am and I will be seeing the Research Doctor who is going to talk to me. I fear the trial is working on me and everything is growing fast.

Oh well we have to wait until tomorrow there is nothing I could do so I put the phone down and went to the bedroom wardrobes and put all the clothes on the bed washing the wardrobes out, I was a bag of nerves so it did me good to a positive job that I could find satisfying.

How strange we behave when having to face such devastating news.

I gradually got out of my mood though although I feel so drained all day and very numb.

I have played on Facebook talking to friends not saying a word about myself. I cant tell my family I feel i have let them all down.

We took Louis out for a walk which is always a good thing for me to do and came back to a late lunch and had a rest then played again on my computer.

The afternoon has gone in a mist and I have cooked liver and bacon for dinner and washed up so the day has gone and I will be so pleased when Im on my way to Maidstone to get all this sorted.

A lovely bit of joy was the Grandson of Jan who Ray painted his photo for Jan’s secret Santa present, he loved it so much and has asked t take it to school to show all his friends and teacher. he was so pleased with it that Ray is over the moon and thought it was so great that he loved it so much. Bless!!!

Rhys with his painting !!

Ray hasn’t done his blog yet he is in shock to –love him maybe its not as bad as we think we can only wait and see.

Mesothelioma Week 7 Day 4 Chemo and Drug Trial — A day of Louis a pet day

Another early morning wake up even though I went to sleep late watching a film, still woke at 4.30am so up and that’s it awake for a while but did manage to sleep in the armchair for a catnap. I had a very sick feeling and so had to take my Steroids and Sickness Tablets as soon as I got up and they took a time to work. Is there a build up going on now Im in week 7, maybe. Ray got up 8.30am so we had breakfast together. We are having a pets day on Facebook warriors so I’m doing a day in the life of Louis.

Morning Louis

let me have some more sleep could you turn the telly down please!!

Come on get off the computer I need to go for a wee!

Thats it follow me --off for my walk

do you mind pointing the camera away please--Mum get the poo bag ready and get that kinky man away from me it makes me shy

A little sniff around

come on dad we are nearly home

Ok mum we are home so come on Brunch time

Ok that will do

A bit of training going on here "Leave " he says I'm to full up to eat it

Just let me sleep please I need to rest

Now your really showing off --afternoon tea !!!

Well that’s it just watching Telly and the bedtime —A day in Louis life tomorrow we will be out walking somewhere else.

Funny enough my friend Rose put her Blue and Brown on Facebook so here they are Bless two Older Pets but much loved xxx

I have had a good day in the end so the fre

http://mesoandme.wordpress.com/2011/11/27/a-little-bit-of-frivolity/  rays Blog xx

Mesothelioma my diary –week 7 day 3 Drug and chemo trial –Busy day shopping again , walk on the beach at Herne Bay –then no phone

I woke up at 4.15 and felt so sick so I took my tablets even if it was early and felt better. It would seem the drugs and chemo are building up.

So I stayed up and drunk many coffee’s an then felt better and had porridge.

I was talking to my friend that has the brain tumour as there is always someone up with me early.

When Ray got up he had messages for the paintings he has completed for Xmas presents and so he is well pleased.

I had finished writing all my posted Xmas cards so that’s another job out of the way.

I wrapped some Pressies to, a job Im not good at really as I never cut the paper right, there must be a knack that I have never found.

Ray decieded we should go out and buy a new phone when a friend phoned and she to complained, as mt son has all week. that there is a terrible noise if they can get through, and as my friend had been trying all day yesterday, it would seem we had a problem.

The Internet was great and we have just changed over from BT to Talk Talk s all was OK, as we thought.

Off we went and parked in Maplins at Sturry and they had a really nice silver Binatone phone, so then I popped into Halfords to get another Christmas present for my brother as he has at the age of 79 sold his car and rides around Bassinstoke on his bike. so I was able to get a nice present for him. (he will kill me knowing I have said this ha ha !!!)

We went back to Hernebay to give Louis a walk along the beach

The tide was well high and it was blowing a colder wind.

We parked the car and came to the beach

the weather was very grey at this time but did get better as the day wore on

One lone fisherman oblivious to us taking his photo as he Catches Crab, Mullet and used a 2 hook flapper with 2/0 hooks and mackerel strips whipped on for whiting, it works a treat here

They look so sad and empty in the winter

We walked back to the car up a slope and onto the road again and Louis had sniffed every smell he could.

We got home to a late lunch of jacket potatoe and cream cheese

Then Ray set up the new phone but things went very wrong and after pulling the room to bits and every cable out he said it was the filter and we needed a new one so off to B&Q to get a new one.

I walked Louis again round the car park twice so I have had plenty of exercise today.

We got back and Ray had a lot of work to do but hey! we have our phone back, if we had called BT out it would have cost £120.00 –thanks Ray xxx

We think it has been broken for a long time as we have had trouble with our broadband and phone  for sometime, the exchange kept crashing so maybe it was spiked?

I made Spaghetti bolognese:  although Ray isnt a pasta man so I made his with rice

Fry Light, for spraying
2 shallots, finely chopped
2 garlic cloves, crushed
340g/12oz extra lean minced beef
227g/8oz button mushrooms, thinly sliced
1 x 397g/14oz can chopped tomatoes
284ml/10fl oz beef stock
1 level tbsp Worcestershire sauce
salt and freshly ground black pepper
283g/10oz spaghetti, dried

1. Spray a pan with Fry Light and cook the shallots and garlic for 2–3 minutes until just softened. Stir in the mince and cook for 2–3 minutes until browned.

2. Stir in the mushrooms and cook for 1 minute. Add the chopped tomatoes, stock and Worcestershire sauce. Season lightly and bring to the boil. Reduce the heat and simmer for about 15 minutes until reduced and thickened. Check the seasoning.

3. Meanwhile, cook the spaghetti in a large pan of salted boiling water, as per the packet instructions, until just tender. Drain and divide between 4 serving plates. Top with the Bolognese sauce and sprinkle with grated Parmesan cheese

We loved it and Rays sugars and blood pressure is back to normal now so we are happy and we are really eating healthier.

Having a lovely Saturday watching our Strictly and X Factor so all snuggled in tonight.

Enjoy a guilt-free cheese-fest with our double whammy theme!

http://mesoandme.wordpress.com/2011/11/26/what-to-do-today/  Rays blog today xx

Mesothelioma -My Diary of day 2 on week 7 of the drug and chemo trial–a very productive day.

who opened their pressie xxx

My friend Christina has received her Christmas Ray painted for her  and Mr W xx

But she has opened her present and didn’t put it under the tree, naughty naughty!!! ha ha !!

I had a fairly good nights sleep last night woke up twice but got back to sleep again and got up finally at 4.30am the wind was blowing outside and it did pour hard for awhile but by the time the sun woke up it was able to come out to play and has stayed out all day, very pleasant.

We decided to pop out after tidying up and get some more Xmas presents so we traveled to Home Base but there was much there for 2 special people (cant say who as he is always on here.)

We went onto the garden Centre at Herne and they had a great array of things not only garden present,s so we found a brill present for her and now we have come up with a great one for her and my Daughter in Law. Dont you just love it when you get the right present that fits people.

So we have to go out over the weekend again to finish off.

Came back and went to Tesco to buy a liquidizer as my poor thing has been used and killed off.

So now I can make my home made soups for our lunch again.

I bought a stock of meat for the freezer and mince to make a swede topped shepherds pie for dinner tonight.

Louis had walks where ever we stopped so he was happy and he had a dinner of beef mince raw that satisfies him to with all his biscuits.

Cottage pie

  1. In a non-stick saucepan, brown 450g/1lb extra-lean minced beef, add 2 chopped onions, 4 chopped carrots and cook for 5-6 minutes until they start to soften.
  2. Add 2 tablespoons of Worcester sauce (optional), 2 level tablespoons of tomato purée and 430ml/¾ pint of stock made with Beef Bovril, bring to the boil, cover and simmer for 25 minutes, stirring occasionally until the stock has reduced.
  3. While the meat is simmering, cook 900g/2lb chopped swede and 450g/1lb of chopped celeriac in boiling water until tender, drain, add a tablespoon of chopped parsley and lashings of black pepper, and then mash.
  4. Pour the meat mixture into an ovenproof dish, spread the mash on top and bake at 200°C for 30 minutes.

Makes 4 servings.

Tip: Swap swede for potato if you prefer.

I have used the other 2 portions to freeze to take away next weekend camping.

So all in all a lovely day where I feel I have achieved so much –a good day.

http://mesoandme.wordpress.com/2011/11/25/new-broadband/  rays blog for today xx

Mesothelioma –My Diary Week 7 day 1 Drug and chemo Trial –Scan day and trying to find my veins !!!!

What a long painful day.

We got up early as I couldnt sleep again -must have been wound up about having to spend a long day out.

I took Louis for a walk and felt so sorry for him being locked up but he is a good dog and just su=its and waits for me to return.

We arrive at Maidstone Hospital by 10 and I was asked to change into a hospital garment a very pretty blue that does nothing for me, so no photo ha ha!!

I had to sit and wait until they fitted the cannula –well three times the male nurse tried and was pinging the vein and not getting in properly ouch.

A Female nurse came in and she set it up just like that, gosh I was relieved.

We were having to wait before going to the scan room as a patient was having a bi-op done camera assisted, there was a lot of patients from A&E so they were very busy.

I finally went in and my scan went well.

I had some non-contrast images taken before the contrast was administered. The techologist  then came into the CT scan room and to the back of the table to fit the tube. The tubing is connected to an injector. The IV will remains in my vein for the rest of the test.  I was asked to place my arms above my head. The technologist then leaves the room. The scanner will start and the injection began. I felt a warm rush of fluid into my arm, chest and abdomen. Some people describe the feeling as “rushing heat” or a “sun burst” that is a good discription After the test, the IV is removed after I had sat and waited for the nurse and I was able to get dressed again.

We went to the restaurant and had a Gammon Steak and mashed potato with green beans which was very nice.

With this all finished we went to the Oncology Dept waiting room and booked in knowing it was far to early as it was only 12.30 and my appointment was 2.30 but I told the Oncology Pharmaceutics I was there .

It was a good move as I was called down at 1.30pm to the Charles Dickens Ward where I was fitted up to my drug machine by 2pm.

I shivered and shook when the machine had been on for three quarters of an hour and the drug was flowing through my veins. I didnt stop until the machine stopped.

Ray had put his coat around me and a nurse asked if I wanted a blanket but as I said I did stop shivering when the drug stop flowing.

We left the Chemo room and saw my friend Tess as she was getting ready to come down for her treatment.

It was nearly dark as we pulled up at home and I took my Chemo tablets then and had a soup for tea.

Now I have to wait until Monday to see what the results are –that awful wait that we Meso patients are always scared about.

http://mesoandme.wordpress.com/2011/11/24/scan-day-today/  Rays blog he has been so patient with me today and been a real support xxx