Many people are worried that being pushy will mean they will get treated badly.
If my experience is anything to go by it’s the complete opposite.
I don’t just mean my GP either.
I’ve had a couple of tussles in the Chemotherapy Clinic also.
I’m on 200mg/ml of Azacitidine 5 days in 28. Last year my at treatment I noticed that it had been reduced to 180mg/ml, I immediately went and saw the lead pharmacist who told me there is now a new method of working out drug dosage. It was previously measured by height and weight, now the method is Body Surface Area. I’ve read up about this and it has some criticism as it can lead to under or overdose.
I objected saying that I had been treated successfully for nearly 4 years with previous dose, why was I being put at risk with a reduction?
They returned me to 200mg/ml the next day.
I mentioned this to the Senior Chemotherapy Matron, who I am on very good terms with and she said it was new national guidelines. I suspect more about cost cutting as the drug is expensive.
Another rather minor occurrence also at the clinic.
My medication is made onsite and I’ve had a tour of the Aseptics Dept. I had a long conversation with the then manager and he told me that he aims to make this at midday. I know approximately when it arrives in the clinic so I check with them if it’s there. Now all Chemotherapy has to be logged in at the clinic when it arrives, but that hasn’t happened a few times so I do get pushy and ask them to check in the refrigerator, low and behold it’s been there all along!!
Like you I’ve done a lot of reading about my condition(some of it quite terrifying) and I do know exactly what the eventual outcome is when my chemotherapy ceases to hold back the onset of Acute Myeloid Leukaemia.
My acting in a pushy manner leads to better treatment in the clinic.
It does help my cause that I’m on first name terms with all the senior staff and clinic staff.
I’m a name not just a number.
I can recall an often quoted phrase from compulsory religious education at school “ the meek shall inherit the earth”
I believe that the meek will be ignored and trodden underfoot!! Cynical but true.
Best wishes and good luck
Anthony
I think your right that people will think you will be treated badly if they are push but I also think that some doctors listen more and respond better to treatment if they think we know what we are talking about so it’s a two way compromise I suppose. I know I have had better treatment in regards to things I have seen my go for when I go in armed with the information I know about my conditions or diagnosis but that hasn’t been the case so far with this so we will see how it goes in the future but I do know I will not be intimidated by my gp and will push for answers if I think something isn’t right. I’m not as far along the road as you are so to speak as I am only at the beginning of my journey and nothing has changed yet thankfully. I am only on an aspirin a day and blood pressure meds and watch and wait so I suppose I’m lucky in that I don’t need any treatment yet but my haematologist has told me if everything stays the same until I am 60 ( I’m 55 now) I will be started on hydroxurea then and will probably be on it for the rest of my life. I’m sorry you are having a hard time with your diagnosis and wish you well for the future 
You’re correct in your thinking, I’m not that bothered by my GP.
My Haematologist is totally open with me and answers any questions I might have.
I have complete confidence in her, she is a dedicated professional.
I start my 54th monthly cycle of Azacitidine on 4/2. Still working well too.
If I hadn’t been pushy right from the start I wouldn’t be alive to tell the tale.
I’m too bloody minded to give up.
“Never surrender” to quote Winston Churchill 
Best wishes
Anthony
Blakhat
I’m glad your treatment is still working well and long may it continue. It’s scary to think if you hadn’t pushed for a diagnosis you would be here now and there are probably hundreds of people who haven’t been as determined as us who haven’t been so lucky to be diagnosed or survived. I swear I think my go thinks I’m some sort of neurotic woman sometimes when I go into the surgery because I don’t let go when I get the bit between my teeth lol 
there’s one doctor in particular who I see the look of fear when I walk into the room but I don’t care as I won’t have my health messed about with I’ve seen to many people in my family been misdiagnosed or too late with dire consequences so it’s important to be aware of our own health
Listen I hate to lecture here, but once your membership to the C club has been confirmed your first port of call in the event of any complications must be your hospital NOT THE GP!
As has already been stated by others, you will know a load more about your condition than your GP in any case and I would suggest here that you only use him for the mundane things.
Indeed this was a very hard lesson for me to learn a while back that cost me week in our regional hospital, wasting everybody’s time including (more to the point) my own. .
For anything other than the mundane contact your Clinical Nursing Specialist (CNS) and ask them (firmly) to get your consultant to contact you.
If the situation is in your opinion more urgent then go straight to the day unit at your hospital.
PLEASE.
Thanks for your good wishes Nicola.
My GP detests me too, he no doubts regrets accepting me as a patient.
He’s very much aware that I complained vehemently about my previous GPs negligence.
It’s very important to keep your sense of humour.
When people ask me how I am I often reply that I’m on death row, or a dead man walking.
That shocks them. I don’t want to bore the pants off people talking about what’s wrong with me.
There are a few women friends who are genuine in their concern and I can talk to them.
I must admit when I was first diagnosed I was angry with everything and everybody.
I’m a lot older than you, 74. I’ve had loads of fun during my life and lots of tragic times.
When you are feeling low think of the good times you’ve had and dwell on them. That helps.
It’s all about acceptance of the s*** that life throws at one.
That takes time, it did for me. Believe me it will for you too.
All of us are travelling a lonely road, but it doesn’t mean it has to be an unhappy one.
Music and literature can take your mind off dark thoughts.
Don’t ever think of yourself as an invalid, that’s fatal.
Life is the biggest addiction of all, when it’s threatened we all have terrible withdrawal symptoms, don’t let them overcome you.
Believe in yourself, we have more inner strength than we are aware of.
Keep fighting✌️
I must agree with you Robin, when I was first diagnosed(privately because of the previous GPS incompetence)
I only use my present GP for minor items not related to blood cancer.
Anything else I contact the CPN, clinic manager or the Chief Chemotherapy Matron. Which I have done regarding any problems that have arisen about blood cancer.
There is also an after hours chemotherapy telephone line in case of emergency, I’ve used that too.
Regards
Anthony
I haven’t been back to see my gp once since I got diagnosed.
Good for you!! 
Anthony
Thanks for the lecture robin and I’m very aware that if I need to know anything about my condition that the best person to talk to is my haematologist but this isn’t always possible as I only see her every three months and I’ve only been diagnosed very recently and am finding out that gps are not all up to speed with this. However when you are ill and worried and feeling scared and lonely sometimes your gp is the first port of call to go to even just for reassurance that you are not silly for having these worries. I’m not sure why this comment was directed at me as I’m sure if you read everyone else’s comments they are all of a similar vein and I thought this was a support group for us who feel alone or afraid of the diagnosis we have received. So while I appreciate your comment and Totally understand what you are saying regarding getting our treatment and any advise from the experts I’m out field it is also reassuring to have your own gp to fall back on .
Alfie, like you I have only spoken to my go on a couple of occasions since being diagnosed and I have been paitiently waiting on my next haematology appointment next month to discuss my concerns about the recent symptoms I have been having . I have only mentioned once about my fears and worries for my future to my gp and was told this was a natural way to think which I agree with also I have asked my doctor if the recent infections I have been having and the inflammation that my blood test have been showing up could be because of my ET and he couldn’t tell me that so I won’t ask him again I will wait and see my haematologist for that. I’m sorry if you think this rant is aimed at you but honestly it isn’t it is just I thought I would mention it as I am incensed by another comment directed at me . Good luck with your journey
Thank you for your words of encouragement to me and you are so right we can not and should not get dragged down in negativity with our condition . I am normally a very go happy lucky person and I have a good support of family and three very close friends who are always there for me and I haven’t stopped doing the things I love . ie… spending time with my friends ( we are going on a Caribbean cruise in November for my friend 60th birthday) and we went on holiday abroad last year and also to Amsterdam. And I also went abroad with my family last year so I am by no means languishing in this illness but recently (since xmas) I haven’t been feeling at all well and so have been a bit more down than usual and letting it get to me but I’m hoping that this can be rectified at my next haemo appointment next month . Sorry for the long rant .
Don’t let Robins “lecture” upset you Nicola.
I realised you’d just been diagnosed and still in a state of shock, I’m not being patronising saying that because I ran the gamut of emotions when I was first told.
I think he was being unduly harsh, the last thing you want.
You need kindness and empathy, that’s what this site is all about.
Be strong and believe in yourself.
Best wishes
Anthony
Hi there, I hope I haven’t said anything to upset you
Alfie, whatever made you think you’ve upset me.
I use humour too, the same as you.
I know you’re going through a terrible time.
At my diagnosis in November 2014 I was horrified to learn from my Haematologist that my prognosis was so poor. I’m still here though after 4 years plus of treatment.
She provided me with loads of information and warnings of how much risk I was in, it all rather left me stunned.
As I left she said “ don’t do anything silly will you?”
It was only when I was sitting in my car outside trying to absorb the bad news I realised she meant being silly meaning committing suicide!!
I immediately thought I couldn’t do that, too many people would be pleased and laughed.
That’s the flippanist( not sure if that’s even a word)
There’s humour in everything even tragedies.
If you ever feel low or want a rant just get in touch, I’ll always offer support
Anthony:blush:
Thank you. I know your not being patronising but that’s exactly how he came across. You are right I am just at the begging of all of this and we all need to find out the hard way about how little our gps know about it and you have been nothing but kind to me . I don’t mind others giving me advise and examples of what they have been through but I do NOT appreciate being “lectured or patronised” by some . As you say we are all here for support and kindness to each other and I have always found everyone here friendly and helpful but another little quote for you . There’s always one
Sorry misunderstanding alert !!!
OMG Alfie. No you have totally done nothing to offend me and I am so sorry about your diagnosis. I know you were replying to robins comment and I was just explaining that I haven’t seen my doctor either about my condition since being diagnosed but have only mentioned it briefly while there for something else but then I went off on a rant as I was so incensed at the comment robin had made to me . I’m so sorry you thought it was you who had upset me but it honestly wasn’t you I shouldn’t have went off on one on my reply to you . Please forgive me. Take care of yourself and I hope we will chat more in the future you and Blackhat have been so nice to me and have gave me lots of potfeedback so thank you for that
I am glad to hear everything is ok
Thank you Alfie. I promise I won’t be leaving this forum because of one insensitive person and I am also glad we have cleared our misunderstanding up. You and Anthony have given me lots of good advise and also shared some things about yourselves and it’s good that we can all through in a bit of humour. I’m am just so sorry that you have both been given a poorer prognosis than me and feel like a bit of a fraud talking about my condition compared to you both. I wish you both well for the future and hope to hear loads more from you both soon