Hi all
Just returned from my first visit to the consultant. Had bloods done again for him to look at.
He took details & we discussed options (i had said what i knew & had read about)...
He believes i've probably had CLL undiagnosed for a couple years.
As with most its watch and wait initially with a CT scan booked to check my lymph nodes in the next 2-3 weeks.
I have to return in 2 months (late October) for another bloodtest & chat with him & obviously discuss CT scan results.
He doesn't think at present anything will be done for a couple years but did ask about brothers/sisters for Bone Marrow matching.
I discussed the extreme tiredness & night sweats & how hot i often feel & said maybe i should listen to my body a bit more & refrain from work when i'm too exhausted. I've always put this down to the Crohn's disease i have (certain days i go into work & struggle to stay awake at my keyboard).
All i've to do now is tell my family still :( then i guess i can rest easy & learn to live with it like i've done with my Crohn's for 25 odd years.
Dave
FormerMember
Went to have a chat with GP Friday as i had many questions flying round in my head, plus i wanted to get the FP92A form signed for free prescriptions (i already buy a prepay which i can get refunded).
Had a real heart to heart with GP & told him how i'm coping both mentally & physically, he realised i was still trying to work with my lack of sleep & signed me off sick for a month to start with, waiting to see my CT scan results.
On the bright side our car passed its MOT yesterday (sailed straight through).
I dont seem to get any quality sleep, only snooze a bit then wake & cannot sleep again even though i feel absolutely shattered. My arms/legs feel like theyre lined with concrete, my Crohn's is playing up i suspect with the added stress recently.
Any ideas of how to cope with this...answers on a postcard please :)
My wife was diagnosed in 2002 and it'sstill watch and wait for her as well. She like so many others with CLL, especially in the early stages, get extremely tired and plenty of night sweats. However, many doctors discount this even though it does seem to be a side effect. The complaints about this on the CLL forum are endless!
From recent CT scans they didn't pick up on all of the lymph node issues but did show where the largest and most problematic nodes were. So the regular blood tests and the CT scan will help you, I'm sure, come to an informed view of how you are and what actions to take at a later stage.
My thoughts were with you on Tuesday as I was with my wife who had biopsy results. Nothing more than CLL!
