Travelling and genetic tests!

[Guest guest]

Hi everyone!

I'll be away for a week or so from to-day. We're just nipping down

to Cornwall for the week but may stay with son in London for a

couple of days on the way home. " Nipping " is a bit euphemistic! We

live in the north-west and Cornwall is the south-west so we'll spend

best part of the day on the road, especially as we're detouring to

pick up younger son and girlfriend on the way.

Cornwall has beautiful coastline and country so we're hoping for

some good weather. When I booked the hotel I wanted one with a

heated indoor pool, for obvious reasons. I spoke to one

receptionnist, I asked if they had a pool. " No madam, " he said, " we

have an ocean!! " I asked if it was heated and covered!!! It wasn't

so we didn't go there!!!

(Chrissy, packing is much worse than when going abroad because you

have to take clothes for all weathers, from rain and cold to warm

sunshine....just in case you get lucky! I'm taking more with me than

when I go to Provence for THREE weeks, our usual haunt! We didn't

book this year because we thought I might be recovering from

surgery. I'm really missing it....all that sun and lavender! Hope I

make it to go back there next year.)

Odd thing has happened. I've received info from Prof AND from the

surgeon co-ordinating the Europac project, that Dr Ellis,

geneticist, is no longer working for the project. Mr Vitone

(surgeons are called " Mr " in England, not " Dr " , physicians are

called " Dr " , as are general practitioners) said that he would be be

my first port of call genetics-wise now. This morning I've just

received a letter from Dr Ellis saying he'd like to see me in

clinic!! I'm about to phone him. Maybe he's just tying up loose

ends before moving on to wherever he's going. I always knew I was a

loose end!

Anyway, as I knew, they have found no known genetic mutation and my

tests are almost completed. Just one more test to go, apparently,

and unlikely to turn up anything. Prof Neoptolemos and Prof Sutton

say that simply means that I belong to the 20% of cases of HP for

which the genetic mutation(s) haven't yet been discovered....but

they are likely to be. I wish I did have one of the known ones

because my sons could then be tested for it. Prof says the pattern

of my illness, starting in early childhood, and its particular type

of development, over a lifetime really, to end-stage, is typical of

HP. Given that my mother died of AP after many years of CP, that

seems pretty conclusive. She didn't have gall bladder problems and

was teetotal. There seemed to be no obvious reason why she would

have developed pancreatitis so young.

With regard to the special risks of HP; they seem to be associated

particularly with the LENGTH of time one has had inflammation of the

pancreas (at least 53 years in my case!) rather than to the oncogene

itself.

Well, I must phone Dr Ellis and find out what is happening.

Chrissy, take care. I undertsand how you feel about the TP/ICT.

Obviously Dr had been hoping to buy some time for you with the

Beger's. I know you'll face the TP with courage and positive

thoughts. I've been reading so much about TPs again that I know I'll

face one much more positively than last year if the indications are

that I should go ahead. I think Dr Lombard, my gastroenterologist

was right when he said I was in turmoil about this and needed time

to adjust to the diagnosis before jumping straight to a TP. I only

hope the EUS doesn't show that I've left it too late.

I'll probably be able to get on the net from where we're going. The

last time I was in that part of the world, the only net was the

fishing one my kids used in the rock pools!! I may well be busy with

other things though.

See you all when I get back. Take care all, and I wish everyone pain-

free time.

With very good wishes,

Fliss (UK)