You are here

Newly diagnosed any advice/support please

Hi All

Am I glad I came across this site - first time I have had nerve to google as am totally petrified of what I may find out.

Only just diagnosed about 2 weeks ago and I can't tell you where the weeks have gone. I have a toddler and supportive family to keep me from moping but I can't help the tears and despair. I suppose that's just part of the process as it all came as a shock and out of the blue ( despite feeling tired, losing a bit of weight - put that down to baby and then finding my spleen which sent me to the doc).... felt like being in a film when the docs told me.

Its funny what people tell you - I heard that this was most common in over 65's but reading through the forum there's people my age or there about ( I've not long turned 40 by the way). I really don't know how to go about telling people ( most of the family know) but I'm already getting strange comments such as "expected you to be looking gaunt etc ".

Anyway I start on the SPIRIT Trial tommorrow so hopefully this is the way to start life again and feel better about myself.

Any advice/positive news please send my way - I really need it at the minute. 

Good you found us early on because as you say- the best people to talk to are the one's who have the same experience and therefore understand what you are feeling and understand what you need to hear..... 
Regarding age- the average age of diagnosis is around 57--- but that is an average, so there will be people younger and people older.
In asia/pacific region average age at diagnosis is much younger (I think around 35-40)- I am not yet clear why this might be but probably because older people just do not go to the doctor- due to lack of resources - lack of healthcare infrastructure etc.
CML is rare 1.5 per 100,000 per polulation..... and since the advent of imatinib (Glivec) it is no longer a life-threatening condition. 
In my opinion- it is good that you have agreed to be enroled in a trial. This means you will be very closely monitored by an centre that is expert in CML (I assume Liverpool Royal?) and you will have access to the best possible therapies without worrying about whether the government will agree to pay for your treatment through the NHS. So, I assume that is why Prof Clark has suggested the Spirit 2 trial.
Take things slowly and read about the disease at your own pace. You don't need to tell anyone outside of your family if you don't feel comfortable. There is plenty of time and you don't need to deal with other peoples terror!
We have all experienced that kind of situation and although it is hurtful, eventually you will find a way to deal with it.
If you need advice then please ask here. Although I would encourage you to use a new comment rather than join exisiting discussion threads that might be months or even years old.
Best wishes,
Sandy