Living With Mesothelioma- My Diary – Going to St Barts for second opinion !!!


Well things start changing day to day now.

I was so down in the dumps now Im just very apprehensive. When you have Mesothelioma its like no other illness we are ahead of the Medical people. They dont see to have caught up with us or its that there is very little to offer a terminal Patient.

Well we dont sit back and wait to die, that isn’t in our planes. We fight and here I go again.

I sent a email to St Barts and  never thought I would hear today.

Dear Jeremy and Peter
I know Doctor C is going to contact St Barts but I wanted to as well.
I have growth again after 3rd line Chemo that finished in march 2012 and so Im in a bad position.
What do you do for 4th line. Dr C  has treated 4th line before so only can offer the same chemo to me that I have already had.
I cant just sit back and say no more treatment as i feel well (I cleared all my garden back and cleared everything away to a skip. Im still doing great.
Here is my report  I feel the Kidney is where they operated on when I was 45 for the same reason so wondered if thats what they saw in the scan -the scars of the op.
Right here is the report CT Chest abdomen and Pelvis With Contrast.
There has been a definite  increase in the size of the previously noted left side pleural mass lesions when comparison is made with the previous study 03/12/12 A marker nodule in the right upper zone region in the line of the oblique fissure now measures 15mm in depth when previously about 7mm no new right sided abnormality is identified. no significant lymphadenopathy is seen. the enlarged left lobe of the thyroid gland is noted. no significant hepatic abnormality is identified and no lymphadenopathy below the diaphragm is seen. the dilated pelicalyceal collecting system of the kidney is noted but no ureteric dialation is seen and features may well reflect an element of PLJ obstrucytion on that side the right kidney appears atrophic.
Comment
There has been significant increase in the size of the nodular mass lessions in the line of the pleura on the left hand when compared with the study of 03/12/12 featuresNo definaite evedence of the deseas activity below the diaphram was seen
2 Doctors Verified this all
I will leave it to you to tell me if there is anything that I can have, I hear you do a 2 and 3 Chemo what ever that might be.
Kindest Regards
Mavis Nye

By return comes an answer

Dear Mavis,

We’re sorry to hear that the meso is on the move again.

There are 1-2 possible options at the moment:-

1) we may have 1 slot left on the ADAM trial. I say ‘may’ because there is a patient who may take this slot who is currently ASS1 negative. If this patient does not proceed to randomisation then this slot may be available for you but you would need a re biopsy as your last test was ASS1 positive (needs to be negative),

2) consider three drug chemo  with IPM (I think you have already had vinorelbine?).

We have other trials in set up but I’m afraid they exclude 4th line treatment.

I will know more about the availability of option 1 by Friday.

We’d be happy to see you this Friday in clinic to discuss further.

Kind regards,

Now this means another Bi-Op if I can have a go at the Adams Trial I will try for the Chemo if I haven’t a successful Bi-Op.

So I have an appointment to discuss it all Friday.

All options will be discussed.

I had a surprise fro the Mesowarrior Flower Club bless them all.

I now know how important the club is to us all, it lets me know they are with me fighting the battle with me.

flowers

We have lost warriors overnight but Heather in the USA has had wonderful news that sh has no sign of Cancer. This can happen if found early enough and the Lung is taken out so all the disease is cut out Sadly only a few are in the position as mainly its to late when diagnosed.

Linda Wride dedicated her blog to me as she has been to Spain and I love Spain http://doingsomethingpositive.blogspot.co.uk/2013/04/valencia-and-dedication-to-very-special.html

So much love and kindness when you are down so low, what a community, we all work together.

We have had a lovely day as the sun is still beaming at us and ray took the Motor Home round for the MOT and it has passed.

I did walk Louis round with out a coat on at last. I have been wrapped up in scarves and gloves for so long that you feel almost naked today with no coat on.

I have missed any neighbours as I cant talk I dont want to say it to myself let alone to neighbours -that its all growing again.

I will begin to open up but I feel I have let everyone down as everyone has been egging me on to beat MR Nasty and the bugger has won. Im looking him in the face again.

I made a loaf of bread and it has come out wrong -, I think the day is not the day to try fancy recipes Im not concentrating.

We tried to eat it with homemade jam and it was stodgy so its all in the dustbin and I will try tomorrow.

I did make a Pasta in a tomato sauce that was ok and Ray had a chicken in a Lemon sauce i did manage to do that right. Louis had Lamb Chops as now his teeth are out he has the hugest apatite, he is going to get so fat.

Rays Blog https://www.facebook.com/raymond.nye.37?fref=ts

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2 thoughts on “Living With Mesothelioma- My Diary – Going to St Barts for second opinion !!!

  1. Keeping my fingers crossed for Friday and wishing you and Ray well – and Mavis believe me you haven’t let anyone down, completely the reverse, although sounds as though you won’t be on the great British Bake off any time soon.
    love Amanda

  2. Mavis wrote, “I feel I have let everyone down”

    We know that you must be feeling low and despondent Mavis, but you are being too hard on yourself. You haven’t let anyone down at all. Fingers crossed for encouraging news at Friday’s appointment, eh?

    Jock & Rita. xx

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