Even though its not good to have lots of new members, its really good that you all have someone to talk to about HCL . When i was first diagnosed in 1999 i didnt have a computor and it was only when HCL came back in 2001 that i could afford to buy one. All i want to say really is there is hell of a lot to be positive about. and us HCLER'S oldtimers are here to help you all.
regards to you all
Richard
Sheep are never far from a mention of Wales and i am surprised it went so long!
Please keep us informed how you get on with your treatment. It is more than likely that your consultant will not have treated anyone with HCL and if he/she has it won't be many.
I was diagnosed back in 1992 aged 28and between us on this site we proberbally know more than most doctors because of our experience.
Seems surprising that there are quite a few youngsters - under 35 - getting diagnosed with HCL these days. When I was diagnosed, back in 2003, I almost gave myself an ironic pat on the back as I was yer typical hairy case - male, 55 years old, stunning physique and great looks (only kidding about the last two...).
I wonder if there is a trend towards younger people getting HCL, or if it's just better diagnosis, as often rare illnesses can lie undiagnosed for a long time, especially ones like HCL that tend to develop slowly, with no obvious symptoms. Any thoughts?
Also, when I was treated with cladribine, I had a four-hour drip once-a-week for six weeks. Most people who have similar chemo seem to have it once-a-day-for-a-whole-week, I wonder if that can be too heavy for some? And there was also news of a self-administered home-injected cladribine treatment a year or so ago. The trouble with rare illnesses, even ones like HCL for which thankfully there are effective treatments, is perhaps that due to low numbers, it can be difficult establishing precisely what is the best option for administering chemo.
Like the youngsters themself's. I don't know about your neck of the woods Frank but when i was at school being 5' 11'' was considered tall and girls were never over 5' 6'' but when i am walking around the shops now days every boy and girl seem to tower over me and 6' is quite common in the girls walking about now. I think its all the stuff they put into the cornflakes now days .
Got a joke for you,
No matter what your political persuasion, you should get a kick out of
this!
>>> A little boy goes to his dad and asks, 'What is Politics ?'
>>>
>>> Dad says, 'Well son, let me try to explain it this way:
>>>
>>> I am the head of the family, so call me The President.
>>>
>>> Your mother is the administrator of the money, so! we call her the
>>> Government .
>>>
>>> We are here to take care of your needs, so we will call you
>>> the People.
>>>
>>>
>>> The nanny, we will consider her the
>>> Working Class.
>>>
>>> And your baby brother, we will call him the Future .
>>>
>>> Now think about that and see if it makes sense.'
>>>
>>> So the little boy! Goes off to bed thinking about what Dad has said.
>>>
>>> Later that night, he hears his baby brother crying, so he gets up to
>>> check on him.
>>>
>>> He finds that the baby has severely
>>> soiled his diaper.
>>>
>>> So the little boy goes to his parents' room and finds his mother asleep.
>>> Not wanting to wake her, he goes to the nanny's room. Finding the door
>>> locked, he peeks in the keyhole and sees his father in bed with the
>>> nanny.
>>> He gives up and goes back to bed.
>>>
>>> The next m orning, the little boy says to his father, 'Dad, I think I
>>> understand the concept of politics now.'
>>>
>>> The father says, 'Good, son, tell me in your own words what you think
>>> politics is all about.'
>>>
>>> The little boy replies,
>>> 'The President is screwing the Working Class while the Government is
>>> sound asleep.
>>> The People are being ignored and the
>>> Future is in deep shit.
>>
Wendy,
Glad to see you have managed to get together a good bunch of replies. I was diagnosed with HCL in 1994, had a splenectomy and then had 2CDA in 1999. Like so many it seems had a worse reaction to septrin than the chemo!
Been okay since and have check ups every 9 months.
I have found for me the best way to live with it is to accept it will come back at some time ..but it can be fixed..
Just know that there are a good lot of us out here.
Good to see so many of the old faces turning up on this site.
Great to hear from you and im glad that you are still keeping well, it seems so long ago [9 yrs] since i was first dianosed and you were the first Brit to contact me on the old site. Im keeping well apart from off sick from work at the moment as i turned my ankle badly on monday playing golf, still theres good sport on the telly at the moment.
great to hear from you
keep well
Richard
HI,
Glad to hear you are okay. Shame about the ankle, been so much rain up here that the course is really slippy at the moment.
Funny but it does not seem like 9 years in some ways. I a on 9 month reviews at the moment.. haven't made it up to a year yet... but still soldiering on.
Do you know what happened to thumper??
All the best for the festive season!!
Cheers
Duncan
Hi Duncan, Thumper, like me fell out with the american site after the way some of them treated Wanda,, but he still mails me 2 or 3 times a year. Im on yearly visits and only become a gibbering rec a few days before the test. Have a wonderful christmas, my wife and i are going on a caribian cruise over christmas and new year as a retirement present, cant wait even though it will be strange being away.
all the best
Richard
I can't believe i've found a site with so many active HCL'ers. I recognise all the usual suspects from the Leukaemia care site - hi jenny, Frank, Nicky, etc, - but I'm shocked to find people who were diagnosed at 28 years old - Dave and Dan.
I was diagnosed in 2004 at the age of 28. I thought I was the only young person.
I have to say I'm feeling much better about things these days compared to the early days of remission - as witnessed by my colleagues on the Leukamemia care site. But thats what times does to most troubles.
Happy to chat to people about mine or their experiences.
