[eveParticipant]

Hi Helen

I just remember when you were diagnosed,with a simple blood test,as a nurse you never saw it coming,you questioned yourself ,no matter who you are aches and pains are a part of life,it is looking back and thinking as a nurse,I should have seen that coming,or as Sue says hindsight .

I do think sometimes the patient can be to close ,I have to rely on Slim to manage his own pain as only he can do it,it,s his pain,but I never stop watching.He also does not explain himself ,it amazes me a doctor always says how are you,what's the answer?????
May be if they asked were is your pain???
I know I am rambling but this is what I feel as a carer someone who has to watch. Love Eve no offence .

[HelenParticipant]

Dear Eve
I know you aren't rambling and yes I never suspected myeloma seriously, it crossed my mind only but it is rare and I'm the wrong profile. I'm still surprised to find myself a patient! Even with hindsight I'm glad I didn't know sooner though .. I did a lot in those last 2 years which I would never be able to do now. And I didn't have that every waking hour thought that never goes away.
Speaking as a patient though, which is what I do on here, it takes a while sometimes to realise that things have moved on. You don't notice to start with, then you think you are being hypochondriacal and hysterical. Then you mention it at the clinic and they sit up and take notice, then you feel a fool for not noticing sooner. So maybe observant carers do see things sooner, I don't know. In the scheme of the disease some people have very quick changes, some change very slowly, it's just luck. I'm trying not to worry about it and get on with things again, I know I'm relapsing, but I'm not on new treatment yet. The big question is 'has the Revlimid slowed it down?'
Love Helen

[Author]

Posts