When it seems like the world hates you...

Thanks everyone....

Graeme - i'm a relapse patient, and HL is [apparently] quite resistant to chemo the more you have :(

In 2002 I had CHIVPP/EA, and last year I had GDCVP.

In 2003 I also had 15 sessions of radiotherapy.

But my tumours seem to have become chemo resistant :(

I've phoned my Lymphoma nurse about getting an appointment at the hospital. The hospital i'm under is 35 miles away, so not so easy to just go and turn up at!

They are hoping to do BEAM and a SCT after this treatment i'm currenrly waiting for. But they said they need to get my tumours to shrink first (as so far they've grown, even whilst on chemo).

My boyfriend is hopefully going to speak to the Lymphoma Nurse from the Royal Free tonight, as he's better at asking questions than me, and he's going to ask what kind of info is missing, why is it missing, whats the time scale for the next PCT meeting etc!

I had quite an emotional night last night :(

ooo im about 5 mins from the local chemo unit...and about 45 miles from the cancer unit nr hull [ castle hill ] i hope they can get things sorted out for you soon, the sooner they get things to shrink the better....from all accounts that beam chemo can work well....they wanted to give me the beam after the r-dhap but they also told me i was in remission so i told them i dodnt want the beam....they can use that when my nhl raises its head next....with a bit of luck i hear hodgkins can be cured...il be hoping everything will go as good as possible for you...

dont let those specialists mess you about.....

all the best  xx

Hi He sounds like your boyfriend is sorted so hope he got some answers yesterday or at least knows when you will get an answer.

Is your hospital and PCT a good performing one or not? if not sometimes the local press can shake them up but the counter to this it can p** some people off.

If you do choose to contact your MP he or she will write to the chief ex asking the same questions you mention above. If you don't have the strength to write consider attending the next surgery they will hold and they should follow it up that way.

keep us updated

john

so sorry to hear your being messed about heather i thought things would have well been sorted for you by now ,its just not good enough,infact its a total disgrace.

tell your bf to write everything down that you need to know before he phones the hospital ,it always helps as you tend to forget something or other when you have so many questions swirling around in your head......i personally would demand to know exactly what is happening and when ,its your life they are messing with.

lets hope your treatment starts very soon ...

keep in touch

love n hugs trudy xxx