Re: Don't really know how to start this........Zena

[Guest guest]

Zena sorry to hear that you are having a tough time.

I believe that everything happens with the lords wish.

I have IPF and I was on the transplant list in Toronto for about 3 years. I had

three calls from the transplant team as well, but for whatever reason they were

not able to match. All of a sudden the team decided that due to me being stable

at the time they did not want to put me through the risk of transplant. Now that

I have deteriorated

they have decided that due to various complications I would not survive the

operation. I was very upset but as time has gone by now over 10 months I have

come to the conclusion that it was the path for me.A lot of people who were with

me in this journey have not made it either during surgery or after transplant I

am still around and able to do a lot of things with a little help with Pulmonary

Rehab and learning new techniques to deal with my limited resources. I spend a

lot of time with my lovely and caring wife. My daughter and the two grand

children, my son when he visits from Washington and above all my 13 year old

pomeranion dog. I am sorry to write such a long note but I am trying to make a

point that you should enjoy every moment of your life regardless of the

difficulty. Please have faith and God Bless. Regards Pravin

>

>

> So I shall dive right in.

>

> I have cancer of the vulva.

>

> I've only known for a few weeks. I've seen my oncologist today and was

> hoping for some definite answers, but unfortunately because of all my

> other conditions it's taking longer for them to decide what my best

> treatment would be.

>

> Originally I thought I was looking at further surgery followed by

> radiotherapy, but they're thinking of chemo/radiotherapy to either

> reduce the size of the tumours or possibly to remove them altogether.

> However the chemotherapy may interract with my current meds.

>

> What has been a blow is that I have been suspended from the tx list.

> They wouldn't normally accept someone on the list for 6 years after

> cancer treatment, but this isn't written in stone. They may make

> exceptions, but they are rare.

>

> I should know more of what's happening a fortnight today.

>

> Whether I have developed this as a direct result of being immune

> suppressed or whether I would have developed it anyway is of course

> something that I'll never get an answer to.

>

> Love Ze xx

>