Thursday, 23 July 2009


I have just received this email from Dr Abtin and I thought it may interest a few of you out there. Also it shows what a wonderful person Dr Abtin is.

Dear Jan,
Hope you are doing fine. Radiation after surgery is the way to go to decrease the incidence of recurrence.

I am planning to respond to the email from Harefield hospital. I have been short handed in the past few months. We have fewer fellows this year and one of our radiologists have left, so 3 of us have to do the work of 4. Mesothelioma management has really picked up and its finding a major role in management of recurrence following the surgery or chemotherapy. I have been invited to present at the STR ( society of thoracic radiology) 2010 on cryo and its implications. I hope I could come to UK and train few interventionists there, so they could provide additional care for patients when needed.

Meanwhile, I am eagerly waiting for you CT scan. Its like getting a postcard.

I feel awkward knowing that you have gone through so much pain and suffering. But I still feel that the surgery has prolonged your survival and your presence makes it more pleasant for people who know you.

Regards, Fereidoun

I have been away for a few days with my best friends, we ended up back at Carnforth but the lodge we rented this time was terrible. It smelt, had cobwebs and spiders webs everywhere and the carpets had only be hoovered where you walk. We had to clean it before we brought in our cases. The outside veranda had been ripped apart and most of the balusters removed from the railings. I ended up standing on a piece of wood with a rusty nail in it and that was the last straw. We phoned the owner to tell her what was going on, ie maybe she was paying her cleaner for doing nothing etc, but she was so standoffish on the phone and I guess because she had her money she wasn't bothered, what could we do complaining got us know where. So do not rent No 77 Pine Lodge at Carnforth. I have posted it on the Watchdog site so hopefully no other person will have to suffer it.

I tried swimming but found that was extremely painful and I felt like I had pulled my heart apart, but at least had a decent shower in the leisure centre.

Overall I feel a lot better, the rib cage still feels like my ribs are wrapped up a plaster cast and the bones are tender but I'm still breathing and getting around

I had a lovely phone call from one of our friends in Dubai yesterday, it was my birthday, and she never forgets! Her last email she sent some pictures her boyfriend had taken and honestly they should be on the front of Vogue. So here's to you Benet, get them sent to a modelling agency.

My CT Scan should be coming through soon, so hopefully I will make my final decision about drain Sites or the whole lung with Tomopathy. I think I have already decided on the Drain sites and should there be any regrowth in the future I'll go and see Fereidoun and get blasted, unless he's here and could use me as a Demo! But that sounds negative as there will not be any regrowth to worry about.

Its true though, I remember everytime I had to get a CT or Xray on the 3 month check up hubby would be quiet for the week before then lap up only the good bits the oncologist said, whereas in the later days when I knew it was growing he was convinced it wasn't as the oncologist was God and knew better than me. I think he's learnt his lesson now! But I am nervous about this one, what if the microscopic cells have grown, would they be big enough to spot or under the size for the scan to see. What would I do if it has come back so soon! I know I can get further treatment but its not that, its like your running a race but the finish line keeps moving. No matter how you feel there is always that bit in the back of your mind wondering if this friend is back and out for your total destruction.

I am so looking forward to having a painfree existence. I am going to reduce the duloxatine down to 30 tomorrow, half the dose, and see how it feels. If its unbearable then i'll either take 30 morning and night or just go back to 60. The swelling under my left boob has gone right down but just hurts when I touch it, but at least its a move in the right direction

I should count my blessings, and I do, that I am still here to moan about the pain!!

Have nothing new to tell you on new treatments out there or what anyone else is trying out.

Keep positive and keep up the fight.

1 comment:

Anonymous said...

really appreciate YOU -- thanks a lot!