Mesothelioma My Diary-A lovely weekend at Wateringbury Maidstone Kent

We have had a lovely relaxing rally at Bowbridge Marina camp site at Wateringbury with the Kent Caravan and camping site.

I have been on tender hooks with tomorrow looming so quickly on me. Its not the bi-op but the worry of the journey to get there.

I have to get up so early to get ready for the 5am Fast Train to St Pancreas but we must not overlay so I expect I just will not be able to sleep tonight.

But it was so nice to have the weekend away in the wonderful sun.

Arriving Friday afternoon we all settled in one by one and sat around and greeting one another again.

As we walked up the river we saw all the little boats of all shape and sizes

A game of Boules was played on the Saturday morning.

Everyone Played or watched and encouraged the player's

We walked along the river bank and saw many Swans swimming along ducking down to find some food and then swim on.

I was able to let Louis off lead and have a good game with his ball he was shatered most of the weekend.

I was able to give him a lovely river walk early in the mornings before everyone got up and –so peaceful but I wash my feet in the morning dew and then brought all the grass in on the bottom of my shoes!!!!

The trains ran by so quietly

Our neighbour enjoying cooking a Barbie.

We had a great get together and chin wag Saturday afternoon with Pimms being served -very nice indeed. and a  good laugh was had.

My son and daughter-in-law have been to see us today as Nicky is so worried about me and came to give me a pep talk in the Motorhome.

We do get on so well and she is good for me and I have told he my thoughts that I dont usually let my guard down, as to just how worried I’m about it all.

She is so there for me and I count myself very lucky to have her and my Son and Grandson.

Terry doesn’t have to say anything, I know what he is saying to me when he looks me in the eyes and just a little half smile on the corner of his lips.

I so love them all xxx I will fight away for you and Ray xxx

Mesothelioma -My diary Met My Spanish Friends, Planned how to get to London by 8.30am! and Ray gave his little mate his train picture.

It has been a great day today as we got up took Louis for his walk and then got going to Canterbury to P&Ride into the city where as we got off the bus our friends from Spain had just alighted from their bus so it was lovely to see Jan and John and we walked on to Weatherspoons where we were able to sit down and really chat over a good coffee.

It was real nice to see you today xx

Johnny and I have a lot in common with Mesothelioma and we swapped stories of our treatment and I was surprised that he had simile to treatment to me and I wish him luck for his scan in September xx

We left them and came back on our bus as we wanted to shop in M&S Food store in Sturry but that’s when the fun began as we couldn’t get out of the Car Park as the ticket would not compute ha ha !! No one answered the phone when we pressed the button so we had to go to the office but that was unmanned, a driver gave Ray another ticket so back to the car, then back to the exit, and guess what, the ticket did not compute, so we went and bought another ticket hmmmm not happy and we will send the ticket in and complain.

I got to M&S and did my shopping and got home.

As we got home Rays little friend, Tyler, was visiting his Grandma so Ray got his painting and Tyler was thrilled with it

He sits on the floor to look

Look Mum

Thanks Ray

 

A message was on the phone for me to be in Homington Hospital at 8.30am monday  for my Bi-Op—where was Homerton Hospital??? we had no idea.

Googled and found it http://www.homerton.nhs.uk/

 

It appears to be in Hackney so we have planned the fast train Monday and Underground  so we are OK.

Well it looks a modern hospital

So with all that sorted we had dinner steak, veg and mash potatoes .

The weather came out really nice this afternoon so maybe the weekend will be lovely, so I can relax with my friends again.

Mesothelioma -My Diary. Chasing my appointment as there was no letter!!!

Oh what a day.

I waited for the postman, he doesnt come until 12 midday and there wasn’t a letter. So I tried phoneing St barts but kept being passed around and having to give my details every time.

Its my own fault I have lost The Oncologists nurses card. I decided to email My oncologist and within 2 hours Peter answered me to say that the Bi-Op been asked for and I should hear tomorrow ar friday so it will most likely be next week.

I was happy with that then tonight after 6pm I get a phone call to say from a Lady who says they have had a meeting and decided to do it by putting the camera up my throat and down my throat and there is only one doctor than can do a bronchoscopy. I said it sounds awful but she said, dont worry you will be sedated.

http://www.patient.co.uk/health/Bronchoscopy.htm

Who has a bronchoscopy?

There are various reasons for having a bronchoscopy. A common reason is if you have suspected cancer of the bronchus (lung cancer). This may be because you have a ‘shadow’ on a chest X-ray. With a bronchoscopy a doctor can see a growth in a bronchus, and take a biopsy (small sample) to look at under the microscope. Other reasons include: if you have a persistent cough, or cough up blood, and the cause is not clear.

A rigid bronchoscope can be used to remove objects which have been inhaled, such as peanuts.

What happens during a bronchoscopy?

Bronchoscopy using a flexible bronchoscope

This is usually done as an outpatient or day case. The doctor will numb the inside of your nose and the back of your throat by spraying on some local anaesthetic. This may taste a bit unpleasant. Also, you will normally be given a sedative to help you to relax. This is usually given by an injection into a vein in the back of your hand. The sedative can make you drowsy, but it is not a general anaesthetic and does not ‘put you to sleep’. However, you are unlikely to remember anything about the bronchoscopy if you have a sedative.

You may be connected to a monitor to check your heart rate and blood pressure during the procedure. A device called a pulse oximeter may also be put on a finger. This does not hurt. It checks the oxygen content of the blood and will indicate if you need extra oxygen during the bronchoscopy. You may have a soft plastic tube placed just inside your nostril to give you oxygen during the procedure.

The doctor will insert the tip of the bronchoscope into a nostril and then gently guide it round the back of your throat into your trachea (windpipe). (It is sometimes passed via the mouth rather than via the nose if you have narrow nasal passages.) The doctor looks down the bronchoscope and inspects the lining of the trachea and main bronchi (the main airways). Also, modern bronchoscopes transmit pictures through a camera attachment on to a TV monitor for the doctor to look at. The bronchoscope may make you cough.

The doctor may take one or more biopsies of parts of the inside lining of the airways – depending on why the test is done and what they see. This is painless. The biopsy samples are sent to the lab for testing, and to look at under the microscope. The bronchoscope is then gently pulled out.

The bronchoscopy itself usually takes about 20-30 minutes. However, you should allow at least two hours for the whole appointment, to prepare, give time for the sedative to work, for the bronchoscopy itself, and to recover.

So thats it I have to wait for the appointment that will be made on the phone tomorrow or Friday.

We have been looking at the Royal Hospital 

Looks very Impressive.

Ray has painted a painting for his little friend and I cant wait for him to see it as I know he will love the fact ray has put his name on the train.

Hopefully he can pass it over tomorrow but his Granma has a bad cold and that awful cough that is going around again so we will have to wait and see.

Mesothelioma -My Diary. No letter today, and Bye to Amy Winehouse RIP

The postman came –no appointment –here we go again –waiting !!!!

My friend Bill is on his way home to Betty in Chepstow from the desert so I hope he gets back safe.

It has been very cloudy today and even a shower of rain but I was able to get out and finish the garden so its all tidy again.

I just work slower than I used to and pace my breathing but I have done a good job, but I get tired and soon go in for a coffee.

Amy Winehouse’s funeral was today I really loved her music but what a price she has paid for fame. addiction is a terrible thing.

My favourite of all her recordings was Valerie and Rehab RIP Amy.

Im also lighting a candle tonight for a young soldier, a friend of the son of a very dear friend, he was chased by thugs and really hit hard with metal bars, he is fighting for his life now.

A Soldier that has fought so bravely out in Afghanistan  comes home and is hurt so badly here, bless him and he was going to be the best man at my friends son’s wedding. Now the future is unknown. My love and prayers go to them all as they sit around his bedside xx

So all in all its been a sad week I wish the sun would shine and we have a good summer to cheer us all up.

Rod Skyped from Australia and we had a laugh as usual, I was out in the shed getting things in for dinner and when i got back Ray was trying to accept a call on Skype, he hasn’t done that before so he was really lost and hadn’t accepted with video-he he!!! proves he doesnt know everything xx.

I hope a letter arrives on the mat tomorrow or I will have to phone up and ask when I have to go in for the Bi-Op

 

 

 

Mesothelioma -My Diary -Whitstable Festival has started and so has the crowded roads.

Its been a quiet and relaxing day today. I had a morning in the garden slowly tidying up and cutting back some of the growth that happened in the rain we have had.

It is always nice and quiet out there and in the sun it was very pleasant. It gave me time to think by myself and to get over Friday. I still do not feel morbid even though I know the seriousness  of  the situation but I believe my lovely Doctor that I have a bit of time before things get very bad and that the trial will be good (if I ever get in it). No news from the chest hospital but Im ready to just go when they say.

A chest x-ray or chest CT scan may be used to find the exact spot for the biopsy. If the biopsy is done using a CT scan, you may be lying down during the exam.

A needle biopsy of the lung may also be performed during bronchoscopy or mediastinoscopy.

You sit with your arms resting forward on a table. You should try to keep still and not cough during the biopsy. The doctor will ask you to hold your breath. The skin is scrubbed and a local pain-killing medicine (anesthetic) is injected.

The physician will make a small (about 1/8-inch) cut in the skin, and will insert the biopsy needle into the abnormal tissue, tumor, or lung tissue. A small piece of tissue is removed with the needle and sent to a laboratory for examination.

When the biopsy is done, pressure is placed over the site. Once bleeding has stopped, a bandage is applied.

A chest x-ray is taken immediately after the biopsy.

The procedure usually takes 30 – 60 minutes. Laboratory analysis usually takes a few days.

So that looks OK doesn’t it.

We did walk the dog around Tankerton so I could get some pate and cordial for me as I have to drink so much fluids, but that was a lovely walk in the sun and so many people have come to Whitstable as it is the Oyster festival this week.

The town of Whitstable has been associated with oysters for hundreds of years, with Festival roots that go back much further than even locals might think.

In Norman times, with Whitstable already an established fishing port, fishers and dredgers customarily held an annual ceremony of thanksgiving for their survival and harvest. As practical, hard-working people, Whitstable fishermen naturally held their festival celebration during the slack period and closed season for oysters.

As a  ’Holy Day’ the Festival would include a formal church ceremony, after which the townspeople would spend the rest of the day in feasting, dancing, playing games and contests. With the feast day of St James of Compostella (patron saint of oysters) falling conveniently on July 25 this date eventually became the accepted time to hold the  festival, which is why the Festival is still held in summer even today.

The exact form the original ceremony would have taken is unknown, but would have probably have centred around a formal blessing of the town, the sea, the fishing fleet, and indeed, the fishermen and dredgers themselves. Today we symbolically recreate the  ‘Landing of the Oysters’ ,  with Whitstable Sea Scouts bringing oysters ashore for a formal
Blessing by clergy before being presented to the Lord Mayor.  They are then passed to inns and restaurants as part of the vibrant Oyster Parade as it travels through the town centre.

The Blessing of the Waters service is still held at Reeves Beach on one of the Festival evenings, today organised by the Association of Men of Kent and Kentish Men, and  the local tradition of Grotter building (creating hollow mounds of sand or mud with an outside decoration of oyster shells) is still practised on  the same day. Originally built by children who would beg “a penny for the grotter” much as other children did for Guy Fawkes, today’s grotters are built purely for the fun of it and lit by candles to produce an intriguing night-time spectacle.

Today’s oyster festival was reintroduced when the  local oyster industry, almost wiped out in the 1920s by a combination of disease and overfishing, was revived in the 1980s.  It is best described as a modern evolution of the older ‘Holy Day’ festivals, being a mixture of arts, family events,  and food and drink, with some contests thrown in, but it does not include  any water-based games or contests. By the end of the 18th century these had evolved separately into a series of events that became known as the Whitstable Regatta. Originally composed of of yawl, rowing and swimming races, the Regatta is still continued in the town today. Like  the Oyster Festival this too has evolved and no longer includes ’walking the greasy pole’ or ‘millers and sweeps’, (where the occupants of two small boats fought each other with soot and flour! before blowing up a ship provided by the Whitstable Salvage Company) but it is still a great day out and a good reason to visit Whitstable again.

I love living here !! http://www.whitstableoysterfestival.com/heritage-history/whitstable-oyster-festival/

We got home and had lunch and answered a load of emails one from Richard who has bought my book and passed the link around to his colleges. I love the idea of that as it has got to the right people in a Laboratory who are trying to find a cure, Its nice to know they will read what a patient fo Mesothelioma thinks and how I live with this death sentence.

My Incense sticks arrived in the post and they are lovely. http://www.incense-man.co.uk/ they really do smell wonderful and I have some Paljor Healing Incense as well, the house has a lovely aroma flowing through even when they have gone out.

Dinner done and we are relaxing so have a good evening too,

Mesothelioma-My Diary A lovely Rally at Challock and I have cheered right up again.

We did manage to find the Rally yesterday the gate had been hidden by Children that where piling out of a party in the memorial hall and it was dangerous driving a M/Home amongst all the cars so everyone had agreed that it would have been so difficult for us to see the field in which they were camping.

We parked the M/Home up and I took Louis off for a walk and in the playing field where he had a lovely run off lead and was a happy doggy again.

Ray in his Black washing gloves with handcuffs I bought him from the charity sale x

Our friend Kevin putting up a table for coffee

 

 

 

 

 

 

 

 

 

I whispered to my close friend about my day in London and I was soon Ok and happy to enjoy myself.

We walked down to the farm shop and bought plums, cherries and beetroot red and white so I will cook them tonight.

There was a lot of sitting around and talking and the a cat/nap as my brain was so tired of thinking and trying to get my head around it all.

What a lovely barn

Why do men like cooking on a Barbie

 

A wonderful sunset with the dust from the Desert

Even the dogs came to the evening do

 

In the evening we went into a magnificent barn, which would have done Midsummer Murders proud, here we had a Barbie, real beef burgers, and sausages all from Brogdale Farm , where I buy my meat.

This turned out to be a great night as we sat there being fed. Lovely cakes jelly and blancmange,and a messy eat which is a fav of mine, meringue, cream and strawberries all mashed up, mmmmmm!!

We talked the night away and went to bed very late after a coffee.

This morning another run for Louis and then a group meet to hear about future rallies and then another run for Louis and I was able to sit and chat all afternoon with friends until at 4pm we came home another weekend over and now I have a medical week in front of me.

Had a Skype from my dear friend Bill in the Desert and he has had a terrible Sand Storm so that’s where the Purple Sunset came from last night –a present from Bill ha ha !!!

Mesothelioma Patient-My Diary– the bad news was given to me today–Mr Nasty wants another fight!!!!

Oh dear its been a day.

I wont hold this up by saying I walked the dog, I made breakfast,  and we traveled to London by train, that part hasn’t changed from Monday … we did the same journey again, had a lovely meal in the restaurant, went to the Oncology room  for appointments, waited from 2pm until 3pm and at last I could get out of the crowded waiting room to see Dr Peter Szlosarek.

He had the results of my scan —bad!!! the tumours are all growing well,  he showed me and together we found each one as he moved down into my chest.

Oh dear I said can we go for the trial now. —Oh! he said “I thought you was going to say Chemo” No! now’s the time to have a go at the trial” I said.

So we had a long chat (they are so good and really let you ask all the questions you want to, until you understand what is going on)

Ray asked some more and then The Doctor said first any pain, when I explained the bottom of my lung hurt but I thought it was my Diaphragm as it was damaged when I had all that fluid.

He thinks it is the tumours and they have pushed my last rib out.

So I was offered a prescription for more pain killers  and I will see how I go with them.

My kidney is showing that it is dry!  in parts its on the red?  so I have to drink more fluids 2 ltrs a day, gosh I wee enough now!!! I will stuck in the loo from now on!!!.

An appointment was made for Aug 12th (the letter was printed there and then) where we will look at a a new bi-op that will be done next week? when? I don’t know yet.

I haven’t got to stay in for that so that’s good.

He asked me to have a blood test today so I took the  forms for that.

So that was that! we still had a laugh though (whats the use of crying it just doesn’t help does it, as he said, its still in the chest although the Lymph gland near my voice box has got bigger again. Thats why I sound like Orville on the phone (my son’s description that the Doctor has put in my notes )

We shook hands and left. I went down to Dracula’s room and had my blood taken, then it was back on the homeward journey.

It was a long noisy journey home on the train lots of noisy children and I just couldn’t think.

We got home and let Louis out, had some tea ad then set off for a C&CC Rally but the Sat/Nav took us to a church hall and we couldn’t  find any Motor Homes so we came home as I hadnt taken any phone numbers.

It seems the sat/nav took us to the Church hall instead of the Village hall, so we will get up early tomorrow and go to Challock and hope we find them this time.

Than the phone went and Judy, who’s husbandKeth has Meso, phoned to ask was I at St Barts today–yes I said– Oh no I thought it might be but we had to go into see the Doctor.

I wish I had seen her, but I really didn’t as I was watching the fact that whole families came in with 2 Patients and they took up so many seats that patients needed. I know eveyone does it different but I just like Ray coming as it is so hard when you hear bad news.

Well thats it after a high yesterday I have come to a very low. I have to start my fight all over again.

I have had to declare war on Mr Nasty!!!!!!

Mesothelioma Survivor -My Diary- Meridian News Tonight -My very short interview but its about a Vaccine so that’s Important

http://www.itv.com/meridian-east/  Ray video it so the quality isnt very good but at least I have something to keep http://www.youtube.com/user/ramondos70

Well at last we have a link but It wont stay on here as the news changes daily.

It showed me making a cup of tea for the cameraman.

I think I look like a scared rabbit

Richard did a good Interview

It was more about me making a drink and just a very small piece of my interview but then its not about me but about a vaccine that they have produced which is very important.

I have now been invited to give a talk to the scientist’s at Oxford which I have of coarse agreed to.

I said anything to raise awareness of Mesothelioma  Richard said -Absolutely…it’s very much under reported. It would be nice if you could meet Jason Lester one day as well…he’s such a great guy AND walked up Mt Kilimanjaro to help support this trial.

What a man and I will try and contact Jason.

So thats been the excitement of an otherwise very dull day as it has looked like rain all day and no it didnt rain.

We had a short walk with Louis because I have been working on the computer all day.

Skypeing,  phone calls, emailing, this is becoming a full time job raising awareness.

Im ready to go to London tomorrow for my results and I will make decisions when I know what Mr Nasty is getting up to, he hides inside my lung planning and plotting its like a chest! game ha ha !!!

Mesothelioma Survivor-My diary. A busy day, Paula Clinic for Ray today.

In my comment’s there is a lovely comment from Richard who works at The company that makes Trovax  He also has been interviewed for the same item on Meridian ITV and so as his interview was today it wont be shown until tomorrow.

TroVax^® is a therapeutic vaccine that stimulates the immune system to destroy cancerous cells expressing the 5T4 tumour antigen which is present on most solid tumours.  The product is based on an attenuated modified vaccinia virus Ankara (MVA), engineered to deliver the 5T4 antigen.  Vaccinia viruses are commonly used as delivery systems for the development of antigen-specific vaccines.  MVA is the vaccinia strain of choice because of its excellent safety profile and its effectiveness in stimulating an immune response against ‘self’ antigens, such as 5T4.

http://www.oxfordbiomedica.co.uk/page.asp?pageid=35

This is all looking good and I have found a lovely new friend, he asked if I was interested in going to Oxford to give a talk as they are always interested in talking to the patient so of coarse I jumped at the offer.

So lets hope its on tomorrow at 6.30pm and 10.30pm I cant wait see it.

Today Ray had to go to the Diabetic eye clinic http://www.paulacarrdiabetestrust.co.uk/ they come round in a special adapted Van and park outside the Doctors.

Silly Digital camera--ray was just going in but by the time i took the photo he was gone

 

I walked the dog while Ray had the drops  put in.

How are my eyes screened?

You should report to the Retinal Screener on the Mobile Van who will check your details and perform a vision test. Your pupils will then be dilated using eye drops.

Once your eyes are fully dilated and no longer reacting to light, a photograph will be taken of the back of your eye (the retina).

The Retina

The retina is the part of the eye that acts like the film of a camera. When the photograph is taken you will experience a bright flash of light. This should not be uncomfortable. I went to meet Ray after taking Louis for a walk and when I got there other people that we knew were all sitting in the garden chairs and we all had a natter.Ray wore sun glasses as the light hurts the eyes and we came home.I caught up on the housework and felt good so we pulled all the furniture away from the walls in the Lounge and  I washed the  walls and skirting board and we  put the furniture back, dusted all the other rooms and hoovered.

Lunchtime then and a sit down before we then took Louis for another walk.

So that my day gone again.

Talked to Rod in Australia, facebook chatted my Grandson and then phoned my son so its been a busy evening.

Ray has had a bad day with these shingles, gosh will this never get better, he makes me laugh as we walks he holds the T shirt off his body it looks really funny.

Rod has told me I should be more sympathetic,  I’am really honest Rod xx

Mesothelioma Survivor-My Diary- My Interview with Meridien ITV News has been completed for the News programs Thursday tomorrow.

To day has been a good day as we were up early to tidy up and get breakfast out of the way for The Interview for Meridian ITV.

Took Louis for a quick walk and good job we did as the Cameraman arrived at 9.30am, so we opened the door to him and said hello while Ray took Louis down to the Motorhome as I said we dont want a dog barking in the back ground.

He was very apologetic, the Interviewer was off sick, so he was going to video and interview it all, that was OK by me.

He did a white test and set the camera up, then was soon ready for the off.

The question were easy to answer about the treatment I have had and what is available to me now, what was chemo like?  What would a Vaccine mean to me.

I made a couple of mistakes so we had to redo that part but he thought I was good and said I must have done this before. Well Im an expert and talking about Mesothelioma  if that’s what he meant.

Lights Camera !!! the interview begins

After all the interview was over he filmed me reading notes as a set up (as he called it) then asked me to make a cup of tea “Oh yes you want a cup of Tea” but he meant so he could film me playing housewife ha ha !!

I got the cups out and then the coffee and tea and placed that in the cups “Now pour the water out ” “I haven’t boiled the water” “Break” “Boil the water ” “Ok boiled” “Pour the water” this was great fun.

Poured the milk and the shooting was all done.

I chatted about how my Meso has come back and explained what happened in the beginning, The Fluid drain and the tumour seeding all over my chest wall. He was very interested and the said Oh! I have left the camera running all through that sorry. ha ha !! So he has lots of footage now.

Off he went as he had to Video a Military March in Gravesend  so that was it all over.

I will be glued to the news Thursday all day as its on at 1.30pm 6pm and 10.30pm but I don’t know how much will be televised.

We went straight out as the weather was lovely and at Tankerton slopes the Sea was blue and the skies were bluer although the clouds were bubbling up on the horizon, wonderful clouds that look like a steam train has just gone by.

One of the intriguing features of Tankerton’s beach is the shingle bank known as The Street. It used to be assumed this was the remains of a Roman road built on land that has since surrendered to the sea. However, a more credible suggestion is that it is all that remains of a medieval town called Graystone. Certainly, the shingle all the way along the beach contains fragments of tile and other bits of building debris.

The Street, the Clouds and the sea what more do we need

It was uncovered by the low tide and I don’t usually see it so it was a surprise to us.

We had a lovely walk right along to to the cafe where people were eating in the sun and then we walked back again to the car.

Shopping at Tesco then was the chore of the day and to get Ray’s painkillers where the Pharmacist said he didn’t think any cream would help it nothing would work and you just have to put up with it –how bad is that.

We met our lovely neighbour there, she has a bad back and is waiting for an operation, she really has been suffering with the pain and finds walking so hard.

Its such a shame as she was so active when she was 80 and this has been so spoiling her life. I wish her luck for the op and as her daughter said it will take a time for recovery but once she recovers it should be so much better.

Her Daughter has been over from South Africa (Goes back tonight) and she said I looked well and she has been reading my blog and we chatted about my condition and my London visit yesterday.

I sit here every night completing my diary and I don’t think  always of the people that read my words.

Its nice to know so many people are interested in my ramblings so I would like to say a thank you to those that do Im very pleased honest.

We had a lovely chat and then off we went to continue shopping.

When we got home and we had a lunch and Ray was sleepy so I went to my friends for a lovely chat and that was it Dinner was the next thing which means another day over.

It really has been a good day.