This is just a rant borne out of frustration. Not all patients have the luxury of a cancer "team", nor a team that can be contactable by phone or email. Sometimes we get a consultant who attends an MDT (Multi-disciplinary Team) meeting to discuss you case (but your not invited. Sometimes the contact phone number is a general cancer helpline, who "vet" the call before they decide if yu need to see your cancer doc, GP or no-one. Sometimes cancer support websites (and MacMIllan is one of the best) only give REALLY basic information on common issues and average situations, and then always suggest you discuss further with your cancer team. Sometimes your cancer doc isn't so hot at talking and just doesn't have the time, or simply isn't specialist enough to know the answer, or get it right. Sometimes the NHS just doesn't apologise when they do you real harm cause they got it wrong. Sometimes USA/Australian/Canadian/German/European/YouTube websites have much much more information that UK websites - even specialist support websites. CLL is the most common adult leukaemia yet there isn't a single book on the subject anywhere. I know knowledge is power but the professional seem to want to keep all the power to themselves - I wonder why? GP's hate when a patient Googles a condition (because the patient can come up with all sorts of crazy answers) BUT we HAVE NO CHOICE because no one has the time, courage and integrity (or knowledge) to speak to us as human beings. This is our body, not yours. I am not a lump of meat to be acted-upon, whether or not you have good intentions. I am also so sick of the toxic happiness group who only ever see and present the wonderful side of life and how happy to have cancer we all are and how special we are and how wonderfully we are all capable of coping we are. The not-so-hidden message is clear - don't moan; don't say anything negative (ironic given this rant, lol); don't ask detailed specific questions; don't take any interest in your condition; don't ask about your prognosis and never never never talk about details of death or dying. Shut up and have the decentcy to shuffle off this mortal coil quietly.
I feel so much better now. I don't expect any reply (neither to agree, disagree, nor to correct me). Just let me have my moan. I'm so glad there is a space that I can do this without imposing my concerns on anyone else (no point really - that would be deemed too selfish).
Hi Crowmania so glad that you felt able to vent on here thats what the room is for. Hope it helped.
gail
