I have just received a comment on my Macmillan site that really pleases me and I love it when someone from out there tells me how they feel as I then don’t feel so alone
Thank you for writing this as I can relate to some of what you are saying. Whilst I am far luckier than you – diagnosed Stage 4 bowel cancer with liver mets, I am being treated with curative intent but it is still an unknown quantity.
I too have been told how well I look and am happy in one way that I don’t look ill, but I want to scream – but you don’t know how it feels.
Expressing our feelings is important both as a release of pent up emotions and so that others can understand that cancer not only interferes with our physical functions but our physogolocical ones too.
Sometimes I feel that people are being patronising – they are not intending to be but their ignorance of cancer and it’s ramifications leads them to come out with the same old cliches.
The one thing that should support you and hopefully, relieve you of some of your feelings of isolation is that plenty of people on this site can identify with your feelings and that in reality you are not on your own.
I pray that you manage to keep that “nasty” at bay and continue enjoying life for a long time to come and that the happiness that you come across manages to conceal the ‘menace’ that hangs over you so that you can truly enjoy your life.
Thankyou for your thoughts and wishing you a peaceful and Happy 2011.
Another night where I cant sleep its because I have been thinking and worrying why my neighbour has acted the way she has.
I was maybe in the wrong that I should have left Dave and Ray and gone to see her but we were on our dog walk and I have to muster all my energy to do that, as I get the shakes on a walk , as I have often talked about.
I then got to thinking that Im always so frightened about setting my nasty off and waking him up to carry on and do his worse.
I don’t talk about that side so much do I.
People keep saying how well I look and I do just want to look normal, be normal, as most of the time Iam normal, but then sometimes I feel so lonely as Im fighting a Cancer that there is no cure for.
I don’t give into the question “Why me” but always thinking how can I help people to understand, but then I don’t understand any of this myself.
I can only keep writing about how I feel and hope that will help others.
I get tired of the worry of how long have I got, all this “live for today” has made my world very artificial, as I strive to live a very selfish life where I do everything I want to do to make my life so exciting.
I have written a book, been in magazines and local papers and become almost a celebrity, how artificial is that and yet at the back of it all its because Im screaming “Bloody Asbestos please be aware how terrible it is and what a pretty name Mesothelioma for a dreadful disease” A word I never knew about until I heard it in the hospital 1.5 years ago.
I remember all my life as it plays in front of my eyes all the people I have met and all the places I have been to. The world is a wonderful place if you just live out your own life and stop worry about how others spoil it for you and yours.
If you are a caring person then you do try and speak up and say stop, so I’m saying stop, please stop and think of others and ban Asbestos Mines and also please find a cure for us.
We lost another warrior yesterday, so that’s 2 that we know of since Christmas and there must be so many more who are fighting tonight for a gasp of fresh air to fill their lungs.
So you see I feel set apart from the ordinary day to day that others around me in their Parkhomes are living.
They get up and do their housework and tidy their gardens go shopping and then sit around watching telly a lovely relaxing slow life while my life is flashing before me a rate of knots knowing that line 2 of Chemo is just round the corner.
Hey I have got very thoughtful haven’t I but maybe that’s how it goes that you have to let these thoughts out so that you relax and muster up the fight.
There are no set rules to this and its very rare that people sit down and write about how they feel but somehow I can and so I do and I hope that helps someone, somewhere to say, Yes that’s how I feel.
We are coming to a New Year again 2011 is here so my wish is that we all live the year to the best we know how and may it be a Healthy and Prosperous year for everybody.
I was going through some old Photos and found this one of Ray Presenting his Portrait painting of Lord Bath to the great man himself.
he was so pleased with it he has hung it in his Private apartments
I have taken all the decorations down how sad but we are away for New Year to a MCC Rally so I thought it a good idea to really tidy up but as I say how sad.
As I was packing them away I was wondering for a fleeting moment whether I would be hanging them out again next year, as I say a fleeting moment that passes over you brain and you have to shake that moment off.
I soon got my thoughts together again and had a good tidy through.
I answered all my emails and did a twitter and a chat on my Forum and Facebook and had some lunch.
Then a strange thing happened.
We took the dog for a walk and met our good neighbour Dave as he had been visiting a Parkhome down the road.
Another neighbour came into view and called out I will see you when you get back. I waved and carried on talking and took the dog for a walk.
Came back and had a drink and told Ray I will go and see if she was OK and what it was all about.
Her husband answered the door “Is everything OK only she wanted to see me” “No she didnt” “but she called out ” No she didnt” “is she OK ” Yes she is fine” Oh OK then” I came back in doors completely unnerved .
“Was it me getting it wrong” “No” said Ray
Now that has really become a mystery to me and I hope it is explained to me soon or I will think Im going mad, and I dont really think that.
Lots of films on telly and now http://www.youtube.com/watch?v=HrnoR9cBP3o
Love all the music from Mary Poppins, so cheerful.
Well I have a shepherds Pie to make as we need a change from all the Roast Dinners and cold meat
I have felt tired today and my throat is gravelly and dry hope there is no cold coming I want to enjoy new Year
My friend Rod has found this and I have agreed with him it is the song for Mesothelioma xxxxx
At last the snow has gone and the rain has melted all the Ice so at last we have hope that new year will be snow free to enjoy all the celebrations. Remembering that 2 years ago we were preparing to travel to Spain with not a care in the world.
I had to have a good tidy up and I changed cupboards around as it is the only way to see what is hiding in the food cupboard that I have bought for Christmas and not eaten.
Oh dear all the chocolates and mince pies I have found– hmmm why do we buy so much and now feel we have to eat it up as we musnt waste the money spent on such things.
Mental note for next year Please do not buy so much.
My brother and his girlfriend are coming today as the snow had delayed our present exchange, so we had to make up for lost time.
I took Louis out for his walk so that was one job out of the way and they have just visited and we have each others presents I have a mug and so does Ray and a calender all very nice and they were pleased with ours so that is the end now of a successful Christmas.
We have had a great chat about everything and everybody and also they have bought a signed copy of my Book so that’s more money to my charity very exciting this.
I have been asked by many friends to write a cook book so that has become my project for 2011 and i will start with all the recipes that I tried out while on Chemo and i wanted food that looked pleasing to the eye that wetted my appetite and kept me eating.
Another of prof Vogl’s patient winning through
My lung cancer battle
BATTLE: Dave Jones and Ross Lynn
A FORMER electrician battling terminal asbestos-related lung cancer has travelled the world to receive treatments unavailable in the UK, writes Health Reporter Diana Prince.
Dave Jones was given around six months to live when he was diagnosed with mesothelioma in July 2008.
The 61-year-old said he is alive today because his wife Ross Lynn has tirelessly sought out pioneering treatment and clinical trials.
Her quest has taken them to the USA for radical lung surgery, and to Germany for experimental chemotherapy.
The couple, from Dousland, near Yelverton, face spending more than £20,000 of their savings to take part in the German research.
They told of their incredible fight for life to highlight support available and the importance of developing new treatments for the incurable disease.
Plymouth is a hotspot for asbestos-related deaths, many of them among former dockyard workers and tradesmen.
Dave, who has three children and eight grandchildren, said: “When I was told I had six months to go, I went into shock. I’ve had two and a half years and every week is a bonus.
“I’m sitting here now because of Ross, what she’s found and organised.
“I am lucky we have saved money. When some people are told they have six months, it is six months because they can’t afford to do anything.
“I just hope treatments can be found for others.”
Ross, aged 60, said the disease has “robbed” the couple of so much.
She said: “At the moment there’s no cure, all we are asking for is a bit more time.
“A foreman Dave knew was diagnosed with mesothelioma and lasted just three months – that’s what we thought was awaiting us.”
Dave believes he was first exposed to asbestos as an electrician in Portsmouth dockyard between the ages of 16 and 22. The deadly substance was used in construction and insulation.
He worked as an electrician across the country – including during the construction of the Channel Tunnel, the London Underground after the King’s Cross fire, and in Plymouth.
A month after Dave visited his GP due to a “burning sensation” under his right arm, consultants at Derriford Hospital discovered a patch of cancer the size of a golf ball on his lung.
It came after he had been diagnosed with the asbestos-related lung scarring pleural plaque in 2002.
Ross started researching clinical trials immediately after her husband was diagnosed with cancer. Doctors in Plymouth said chemotherapy might extend his life by around three months, but Ross said she was determined to find another way.
Her research led them to the National Cancer Institute near Washington DC in America.
Dave underwent a 10-hour operation to remove 40 per cent of his right lung and part of his diaphragm in September 2008. The treatment was free, although they had to pay for their travel.
American doctors recommended chemotherapy, which Dave received at Derriford Hospital on return to Plymouth.
The couple said his Derriford consultant has been “fantastic” and supportive.
Dave’s cancer returned in April 2009, which Derriford doctors have battled with several courses of chemotherapy and radiotherapy, as well as seeking out a ‘cordotomy’ procedure to lessen the pain which he underwent in Portsmouth.
A scan in June this year revealed the cancer had grown into a new area in Dave’s chest. The progression lead Ross to look into ‘chemoembolisation’ treatment, which Professor Thomas Vogl is researching at the University Clinic, Frankfurt.
Dave has received two sessions, at 4,000 Euros each, and is travelling to Germany again on Monday for the third. Prof Vogl has told them the results so far are “very positive”.
Dave is one of several mesothelioma patients from Devon who have received the chemotherapy treatment, which is not approved in the UK.
Plymouth mum Debbie Brewer, who was given months to live when she was diagnosed with the disease in 2006, puts her survival down to the specialist.
Debbie, aged 51, of Eggbuckland, is considering applying for the NHS to fund her therapy when she returns to Frankfurt in the New Year.
Ron Bonfield, aged 71, of Torrington, has also received chemoembolisation in Germany. Earlier this year, NHS Devon agreed to fund his final session, saying it had proved beneficial in his case.
Ross thanked everyone who has supported them so for, including charity Clydeside Action on Asbestos which has helped with the “maze of benefits and support”, as well as assisting them in getting a five-figure payout through the government’s Workers’ Compensation Unit.
Ross and Dave anticipate he will receive up to six sessions of chemoembolisation, which they hope will be as successful for him as it appears to have been for other patients.
We woke up on Boxing day and I was feeling fine again crazy really that I can be so bad and yet recover so quickly.
It was nice to take the dog out in the fresh air and in the sun but I was very wobbly still so couldn’t walk far but enough for the dog to have a good exercise running around and sniffing what ever dogs sniff.
The roads were very quiet and not a lot of people around so I suppose they were all staying in doors with full bellies after Christmas dinners well mine was down the toilet and I hate that waste of money that it has caused me ha!ha! wished I had been ill before my eating not after.
I came back and we watched Toy Story 3 but to be honest although it does wrap up the story as Andy gives his toys away it wasn’t as good as the first 2 films.
I love Bus Lightyear and his cry of “to infinity and beyond” and all the antics they got up to. Great films.
We have lots of videos to work our way through now and must find time to watch 2010 and 2012 just 2 of the six i bought Ray.
Terry Nicky and Amy turned up in the afternoon and we had a great time opening presents again they bought me a fantastic pair of boots so warm with fur inside that there is hardly room for my feet so roll on the next load of snow I have a great boot to walk in and not slip over.
When terry came in there was a lot of talk going on between them and whispers and Terry looking at the Electronic Photo frame I had bought Ray that that’s what they had bought him to, Oh dear how was we to get around that, but when Ray opened it he was pleased as it meant he could have one in the Den as well and put different Photos in to watch so all was well.
Terry and I have done this before –Great minds think alike.
They loved all the presents we bought them, all the smelly’s went down well and the clothes so its a year when we have bought well, don’t you just feel good when that happens.
Nicky had bought Terry a Ukulele and he bought it to show us and have a play and he plays over the Rainbow so well I love that song.
Terry had bought Nicky a beautiful present it was a necklace and earrings made from a real orchid dipped in gold that he had bought from abroad, so pretty.
Amy had all the usual things a Twelve year old has so everyone has had a great Christmas and in the end the snow hasn’t spoilt our Christmas.
We will make up for Canceling our visit by going to see them in the New Year.
We had a meal of cold meats, cheeses and pickles and it was soon time for them to be off on the long journey home to Marlow so we packed the car with all the parcels and waved them on their way.
Ray published his Poems on e-reader which is a great achievement i think I have shown that everything is possible you just have to make it happen.
I then watched a repeat on my computer of a Program Terry had told me about as he knows I love the Royal family.
It was a shocking Documentary of Charles’s three loves and I couldn’t sleep, it has had that much effect, silly as that sounds.
I leave you to make your own mind up.
I had a great Christmas day and lovely presents Ray had got it so right and even the underwear fitted so I have nothing to return back to the shops ha!ha!
We had a walk with the dog and it was bitter cold and said Merry Chrimbo to people but wished Dave next door a special one.
Cooked a wonderful Christmas dinner and had a sleep as you do.
Well I was going along really enjoying Christmas day talking even to my friends In Australia and just having a whale of a time and then struck down with a wonderful bout of sickness about 4.30pm that was horrendous.
I thought I might have to go to hospital as it was so bad and that something was very wrong.
I went to bed and and it didnt stop and was just like when I was on Chemo.
I had no pains and it didnt feel like a bug.
Anyway Im fine today and will go careful and not eat very much.
11.30am Its down to my Thyroid problems apparently so I will have to sort it out in the New Year as this is the 2nd time I have had this.