Prof Vogl to talk to Doctors in UK

Hot off the press so to speak but thank god one of our surgeons is fighting the cause and has managed to secure Prof Vogl to come and talk next month at the British Thoracic Oncology Group, its a three day event.   He is going to discuss the technique of chemo-embolisation, You don't know which surgeon has done this, well its John Edwards from Sheffield.  Who say's that surgeons are just interested in opening you up, its good to know that John looks at both sides of treatments, on a personal level I know of only one other surgeon who does that and that's Andy Owens.  We need more Doctors like this who are willing to go that extra distance for us.

I hope that Prof Vogl gives a good speech and that this technique can now be taken seriously over here.  I only hope that Dr Abtin will come over one day and do the same presentation.

Lets hope that the newly diagnosed in 2010 have the option of this treatment available - I can't believe John has managed to get this going and I hope Prof Vogl has good facts and figures to prove how well this treatment works.  He may not be that happy if we end up with it on the NHS as he will loose out financially of course, so that must show the Prof has good integrity if he is willing to share at a cost to himself.

On that note I will go.

Happy New Year to you All

Season's Feelings

It's strange but when you have something like mesothelioma, active or in remission, you still take life for granted.  I promised myself that after surgery I would start to live and do what I like but as always I have carried on doing the same old.  I met up with a friend over Christmas and I haven't seen much of her this year, I made the usual promise yes we will get more time together, but somehow I know I will not keep that promise.

I was toying with the idea of giving up work but as I am now only working mornings and I roll in the office when I'm ready rather than appearing at 8 or 8.30, sometimes its 10.  Obviously if it's that late I might not finish till 3 but I tend to do what I feel like so why give it up? 

The cold weather does nothing for me, even as a teenager I hated going out in the cold, so if I didn't work what would I do all day, staying in the house drives me stir crazy and everyone I know works.  It's not like I can go to the gym and do what I use to do .. which ends up making me feel frustrated, I have never been into shopping, so popping into Darlington or the Metro Centre isn't what I call enjoyment.  God help me I even hate spending time in the hairdressers!

So what will I do in 2010, hopefully if I can fly this year I would like a couple of holidays, but Dubai will certainly be out of the equation due to the MST and the laws changing out there!  Barbados might be worth a week but the standard of service is no way as good as Dubai.  I would love to go to Vagas again, we did that with hubby's work back in 97 and it was fun.  I would like to do a cruise round the Caribbean but hubby hated it when we got off the ship and people were hustling you all the time .. no fun or relaxation there then.

I do know what I want and that is to stay in remission, try and get fit, maybe take up Pilate's and if it doesn't work as well this time try and find a different instructor, I would like to try ballroom dancing as I know that would help hubby's stomach shrink .. now that would be nice!

A lot of people have died this year again with this disease, some we hear about and some we don't.  I don't go onto the websites much as I dread to read someone else has fallen to mesothelioma and although I may not know them it affects me badly. 

So to those of us who are still going I pray we keep strong and healthy and which ever treatments you are going for or have done, it is working and hopefully we will all still be here this time next year planning our next year ahead.

Post the Day

I hope you all managed to eat some Christmas Dinner and celebrate the day in reasonable style.  Our whole Christmas took a different turn.  We were having my mam Christmas Day and taking her home on Boxing Day, that went pear shaped and mam came early afternoon Christmas Eve.  We had arranged for a couple of friends to call over at 7 for a little nibble and drinks, they needed to be back at a reasonable time for children etc, but in between we had unexpected but welcome guests arrive at 5.  Since the arrival of mam and the puppy I was up and down every 5 minutes so by 7 I was on my knees.  Instead of our friends leaving at 10 I had to send them home at 8.30 as it takes forever to get my mam ready for bed.  I think we were in bed ourselves for 10, I was exhausted and aching.  With the help of a tesmezepam I had a good nights sleep but Christmas Day the whole up and down continued right through the day. 

To add insult the Pup decided not to have his usual nap and just kept on all day!  We finally got to open santa's gifts around 5 pm but that took forever because the pup was into everything!

I'm pleased there wasn't much on TV as we haven't seen any of it!  We bought a new game for the wii and thought that would be good fun on the night - its still in the packing unopened.

Last night we went up about 9.30 and I took another Tesmezepam before sleep.  This was another good night's sleep and waking up is quite a joy as the pain is so much less.  Obviously I can't take them everynight but I do believe I would have been on my last legs if I hadn't.  As it was by 7 on Christmas Day my Kidney was aching but they had managed to keep the worst pain away for most of the day.

We now have hubby's parents with us for 2 days but at least I'm only up and down for the pup and am sure will get some help with that.

He is a hungry nosed little thing, food is always on his mind or biting. 

It has been a better Christmas in many ways, I'm not thinking about it being my last (as I usually do) or wondering whether the Chemo will be as bad as the last dose (Two different Christmas's worrying over the needle) so I enjoyed it. 

All I really want is a good sleep, to be able to drift off in my chair when I want, I doubt that will happen for a long time to come, but the blame only lies with me as I was the one who pushed for the puppy, forgetting how much hard work they are.  His toilet training is really good, he goes to the door nearly all the time, only a few little accidents in the house - so that is impressive.  the problem is he can go all night without a pee but once he's up he seems to want to go every 10 minutes, think I'll by diapers!

I also scored brownie points as I have eaten extremely well these last couple of days and hopefully the scales will back me up on that.

Looking forward to the new year and wish a very healthy one to you All

Merry Christmas

Dear All

From our household to yours we wish you a Merry Christmas and hope that 2010 brings a miracle and another treatment for Mesothelioma.

I know that for a lot of us this year has been hard, the decisions we have had to make and the changes having this cancer has made not only to our lives but to that of our families.

Like everyone involved with mesothelioma I wish that a mircale cure was on its way and who knows what could happen in 2010.

While we wait for that mircale lets not forget the miracle of life itself. 

Thank you for the support I have received this year and I hope that in some way I have been able to help one of you.

Merry Christmas

Scan Results

It has been a long day and waiting for the clock to turn to your appointment time is like waiting for ice to thaw in the Antarctic but the time came and off we went.  The Doc was running 2 hours late but was worth waiting for as he said

NO CHANGE

the mass at the bottom (thickening and a funny looking nodule) haven't grown so we are over the moon. 

I was thinking this morning the last time we first had snow was December 5th when we went to Sheffield for the first time to see John Edwards about surgery and I came out, after a 2+ hour wait, feeling depressed with the only thing to look forward to was dying.  The snow was falling heavy today and I was hoping the news wasn't going to be the same, I would then hate snow for the rest of my life! 

I actually made the Doc's day as I am the first person he has ever met who has gone through this type of surgery ..

I have a few worries as it was a different radiologist to the normal who wrote the report and I still want confirmation from Sheffield that it is ok, but on the whole I am so happy.... All I need to do now is find a way to get my muscles to relax and uncurl so that the pain eases!

I am off to celebrate with a drink or two, although am shattered.  Why does it make you so tired when you are waiting for results all week, we don't think we are stressing that much but obviously we do.  I stayed at work longer today and even went in earlier, then came home and vacuumed anything to keep my mind off watching the clock.

Another good thing he said was that the air pockets are shrinking, this means flying might become a reality next year .. I can imagine the sun on my bones as I write this line!  Also means should any growth return I will be able to see Dr Abtin and have it cryo-ablated so fingers are staying crossed that it sorts it self out, but the flight to LA won't be needed for many long years to come.

Must go that B & C is looking awfully tempting to me, thankfully Bear has just fallen asleep so might even manage a few sips in peace.

I hope that everyone else who is waiting for results gets the same good news I have.

My chinaman has certainly ran for the hills!

Thank You

I would like to thank you for the emails of good wishes I have received over the last couple of days.  It is a nice to know that you can take the time out of your day to wish me well and I appreciate the thoughts.

I must say I am not worrying as much as I usually do and I am putting that down to I am due a break from worry and treatments.  It's nearly a year since anything was done to the meso, nearly a record in my history of this cancer, but I am hoping that I will be as good as Graham or Terry and have clear years ahead.

I have just had my hour massage which was wonderful and feeling quite relaxed and pampered.  My therapist has become a good friend, its nearly 5 years since we met, and is doing me an even bigger favour.  Two years ago I bought 2 pairs of trousers and each needed taking up.  I mentioned I'd never got around to doing them and before I could say boo to a ghost she had Gary dig them out of the wardrobe and has took them home to alter.  Spoilt am I not, I was surprised they still fit and because of today's fashion they can still be worn.  I haven't worn a skirt for over a year and seem to live in jeans so it will make a nice change to have some dress trousers on for a change.

Danny has sent his part two of his story, it is a good read as he manages to bring in a lot of humour along with the pain.  If we can't laugh at our situation sometimes then we don't stand a chance.

Any illness is awful to suffer and I always say to someone who is ill that their pain\anxiety is relevant to them and they should never be affraid to share how they feel.  The amount of people I meet at healing and they say Oh I have nothing to worry about compared to you and I always say that's not right.  Illness whether its the flu, back trouble, headaches can bring you down.  My brother has MS and I marvel at how well he deals with things, I worry about him all the time.  MS can get worse overnight and I have seen him go down hill many times, each time the affects of it get worse and yet he always manages to raise a smile.  He makes me feel guilty as I am only working on a morning yet he is still doing 10 hour days. 

On such a positive note I think I will leave it there, tomorrow is another day and either by 6pm tomorrow I will be popping a cork to celebrate or cry, and that's only if the scan results are in, if they aren't then I'll still have a drink anyway.

On that note of drinking does anyone else really enjoy having a drink anymore.  I think the MST has something to do with it, although I don't drink every much and over the last year every little, I don't seem to suffer from hangovers but I never get tidderly anymore either . if you get a chance please let me know how it affects you.

Thanks again for your well wishes and if you're waiting for results GOOD LUCK TO YOU TOO