I had my appointment last week with my consultant and raised a few concerns regarding what i was led to believe in the beginning that treatment would only be for 5 years and then all would be back to normal. As usual I felt rushed and didn't feel there was enough time to ask questions even though I've read that your consultant should discuss this illness with you every 1 to 3 months. The only thing i ever have is about 5 minutes with them to discuss my level which on this occasion was 0.49 so I need to have some blood out as per usual. I did ask about medication and he said that I wasn't at that stage "yet".
I did raise the fact I was told this was a condition that would last around 5 years and he confirmed what I already knew in that it is lifelong condition and had already been reiterated by the helpful comments and advice on this forum.
I told him that I am now getting tired a lot more and seem to want to sleep a lot especially when I am relaxed. he had no answers for this and did not offer any advice about what to do other than exercise.
I told him that my skin is itchy now and more so around my sides, arms and elbows. He looked at my elbows and said it was nothing to do with my Polycythemia so am I thinking i should have red patches or something physical ie. a rash? I am aware this one of the side effects so makes me even more confused as to why he said it isnt.
I told him that my joints are aching now and never did before as well as lower back pain which is annoying after standing for a while. I said mainly my fingers and knees ache the most. He did not say anything and did not offer any examinations or medication.
I asked him if Polycythemia was also known as a blood cancer and he told me yes but not if you are Jak2 Negative which I am. He didn't explain why that would be the case or even tell me the difference. After my appointment I did ask the nurse if I could book a further appointment with him to discuss my condition in more detail but was advised that he will only speak to me over the phone.
I feel I have now no choice but to seek medical advice from a specialist haematologist - does anyone have any recommendations? I have done a bit of research and found a Donal McLornan who carries out private practice as well as NHS.