Changing Consultants

Well my lovely bloglets.

I have been asked to write this for Leukaemia & Lymphoma Research as I don't think that many people change consultants, so here is my story.

Changing consultants.  I'm not going to lie, I didn't think or know this was possible.  Until it happened to me. 

I started seeing my old consultant, let’s call them consultant 1 at my hospital in London which is now my full time hospital by chance.  This is because I was diagnosed at Uni in Edinburgh but didn't live there full time, and my Consultant there, let’s call them Edinburgh Consultant, knew Consultant 1 and checked with me that I didn't mind travelling in from near Hungerford to London for check-ups during uni holidays which I didn't.  I would much rather travel and be at a centre of excellence than at Swindon, which was the alternative.  Because of this I actually go to a hospital that isn't the correct one for my post code, but never mind, this is straying from the point.

I was under the care or as I now see it ‘care’ from Consultant 1 from Spring 2007 until Spring (ish I think) 2013.  This is not a post to rant about how I now feel about Consultant 1, I have done that before in no doubt multiple blog posts, so don’t really need to do it again.  And also, the change between Edinburgh Consultant and Consultant 1 was such a relief that it took a few years for these feelings to emerge. 

I had felt for a while that Consultant 1 wasn't really listening to me and I felt a bit like I had my head patted at the end of each consultation and sent on my way with nothing actually being listened to.  I had for a while had the promise of a trial that could mean coming off treatment which is what I want.  Fatigue and depression were getting worse and worse no doubt linked to increased stress at uni with my insane degree (I have recently qualified as a Naturopathic Physician).  I went to my check up where I had been promised that I would be told about the trial and Consultant 1 wasn't there.  I was called in by a consultant I recognised but didn't know and said I would like to see Consultant 1 and was told they were not there.  I went into new consultant’s room, let’s call them Consultant 2 and went mental.  Screaming, crying, swearing, the works.  I'm sure the waiting room heard every single word.  My father happened to be with me for that consultation and got me to calm down. Basically I had had enough and Consultant 2 got the brunt of it.  Now, this is where it got interesting.  Consultant 2 LISTENED to me and changed my drug dosage.  Immediately. To see if things got better and told me to go back in 6 weeks.  I couldn't believe it.  I WAS FINALLY LISTENED TO AFTER 6 AND A HALF YEARS OF TREATMENT!!!  And from then on, when I went back to the hospital I booked in with reception with Consultant 2 and I essentially changed my consultant without asking.  I did it.  Patient power. 

Unfortunately since this change in consultants, Consultant 2 has left the hospital which I found rather upsetting as I had finally started to be listened to and positive changes made with my treatment, for me to try and conquer the fatigue and depression, which were side effects of the drugs.  Joy.  I asked Consultant 2 who I should see who was on the same page as them in terms of treating ME as a person and LISTENING and BELIEVING ME and not just prescribing me ant-depressants and they suggested Consultant 3.  Consultant 2 also took me off the drugs to see if it really was the drugs or me.  It was the drugs.

So Consultant 3.  I don’t actually have enough time to get across how much I love them.  They have WITH ME discussed treatment options and changed my drugs to see if another are any better.  They have also played about with the dosage to see if it’s any more manageable.  Consultant 1 did hijack me recently and wouldn't let me see Consultant 3.  I was livid.  Consultant 3 PHONED ME that evening to apologise and I now go to a clinic on a different day so this can’t happen again.  Consultant 3 listens and communicates and emails and listens.  By the way, they listen.  I can’t tell you how this feels.  I am no longer banging my head against a brick wall.  Oh, and another thing.  I am INVOLVED in my treatment decisions.  Amazing.

So, if you are unhappy with your consultant there may be options, maybe you don’t have to see them.  It took me 6 and a half years to realise this.  You have a choice.  It can be scary and you have to be brave, but you can do it.  Don’t leave it until you explode screaming and crying hysterically in your appointment.  Speak to your CNS (Clinical Nurse Specialist) if you have one or another nurse in the clinic.  They can help guide you.  There is choice available as far as I know.  Don’t be unhappy.  Remember YOU know what it’s like to have cancer and how YOU feel on the treatment.  The consultant probably doesn't.  And remember, if you need a bit of support to speak out, take someone with you. I don’t know if I would have been quite so explosive if my father hadn't been there.  And the change that has happened for the good since that appointment has been phenomenal.

With love and hope,

XXX