[AliParticipant]

Hi Pauline and everyone

I have read through the comments and thought I would add my two penneth.

Every consultation my Mum attends we all troop in to the office. Mum, Dad and I. I call us "The Committee" At the begining of our journey I would sit, more in the corner, with the Myeloma UK diary, furiously taking notes and recording every detail, then when we got home I would write up the notes and check that all bloods were within range. If the next month things had changed slightly we would start to worry and we would pore over the results. Mum has always said she wanted only limited information, she rarely asks questions. Dad and I would chirp in occasionally.

After Mum had her SCT last year we were really disappointed that her PPs reached 0 and then went up to 2, we were told not to concentrate on the actual figures but that the figure remains stable. Mum also decided not to have a copy of the letter thats sent to the GP, again incase she reads something she doesnt want to see.

I now understand why she does this, its her way of coping. So now when we go to see the consultant we are just told "things are within normal range" and not given any specific data. This works for Mum and I feel easier about things too. We are not bogged down by the numbers, and if we dont know, we cant worry about them……can we?;-)

Thankyou for your comments Helen, its nice to hear it from the patients point of view. Im guessing this is kind of how Mum feels. All I want to do is support my lovely Mum and be there every step of the way.

Hope you all enjoy the lovely weekend ahead:-)

Love Ali x

[tomParticipant]

Hi Pauline and Marc

Firstly may I say you have posted your post with Humour (and you will need it ) and if you and marc can still smile after what you get from the Consultant and the Macmillan nurse then you both will crack this MM lark.

As for me I have a good relationship with My Consultant and also his (my) Cancer Nurse, I don't do Numbers/scores or any tech stuff am on the wave of "If he is Happy am Happy" and that is not for everyone but it works for me 🙂

BUT BUT I have to say My Young Bride (Elaine) had breast cancer in 2008 and I wanted to know everything all the points scores and even how big the scar will be, so am a Calmer patient than I am as a Carer 🙂
If you want the Info TELL the consultant when you first get into the room 🙂

Love Tom Onwards and Upwards x

[sandie58Participant]

Hi Pauline
So sorry to hear of your negative experiences with Consultant and nurse. My mum goes to Princess Alexandra Hospital in Harlow and sees a wonderful Consultant there. We have seen him for the past few years and as I always go with my mum he has got to know us both (I actually see him myself in a clinic in Bishops Stortford as my PP levels are a bit high too). Nothing is too much trouble, he is kind, polite, helpful and always gives us all the result information we need to know, and I can ask any questions and he will always patiently explain. In fact we bumped into him one day at out local supermarket and he made a point of saying hello and asking about how mum was doing. I don't think many Consultants would be so friendly. I can ring the nurse at any time for advice although I haven't really had to do that much. I consider ourselves very lucky to be under his clinic and just hope he doesn't ever leave. My mum knows what she needs to know about Myeloma, but doesn't really think about it. She goes for appointments, has her treatments and carries on with life. I want to know everything and am a great 'googler'. I am the one who researches everything and asks all the relevant questions, partly because mum is 87 and doesn't always hear so well. I always go with mum to any hospital appointments and that is what my mum wants as she knows she can rely on me to take care of her when needed.
I can understand your frustration but next time you go do ask questions like a/what are the Para Protein levels. Have they gone up or down b/Kidney function? c/Calcium level d/Haemaglobin etc., It may be that they don't tell you because they think you don't want to know. I have come across Consultants like that before. If you go with a list of questions (I always get out my pen and paper and jot down notes), they will get used to knowing that you want this information. If you still find them unfriendly are you able to ask for a referral to another hospital?
Good luck at your next appointment.
Sandiex

[Author]

Posts