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

A Plea for Peer Review

I will be putting this blog post in as many places as possible in terms of social media, and I also ask, if you agree with what I say to send it to anyone and everyone who may be interested.  I rarely, if ever, ask for my blog posts to be re-tweeted/shared etc, but today, I ask that you do.

Not all you may know this.  I am in fact a cancer patient and have been for just over a quarter of my life.  I was diagnosed with a chronic form of leukaemia (Chronic Myeloid Leukaemia) on the 19^th January 2007 whilst studying at Edinburgh.  Not what I was expecting after a trip to the doctors and a subsequent blood test.  I have, since moving to London in January 2009 and discovering and getting involved with the Teenage Cancer Trust, become a very active patient voice.  I speak for Macmillan, blog for and generally get involved with Leukaemia & Lymphoma Research and also London Cancer.  Since coming into Contact with London Cancer I have sat as a patient voice on an expert chemotherapy reference group as well as a variety of other focus groups, and I am on the steering and scientific committee for a research trial that will hopefully start at the beginning of 2015 involving University College London Hospital, The Royal London Hospital For Integrated Medicine and Macmillan.  I have also been to parliament to talk to MPs about cancer care in the NHS and both blog with the written word and videos.  I’m not going to lie, some of this I do for me, but a lot I do for others.

Living in the NHS for so long and experiencing both how patient should never be treated as well as (now) having excellent care means I can talk about the good and the bad.  I have experienced what many never have at my age for example making decisions about my fertility at 22.  I live with old man’s cancer, an invisible disease that I carry around with no signs as I have always been treated with a pill form of chemotherapy that I take daily, so have always had my hair etc.  However, this is not about me and my story, you can access that in elsewhere.  This is about something that I woke up to this morning.

A few years ago I was invited by the Teenage Cancer Trust to train as a Peer Reviewer, and agreed immediately.  I am very proud to be a Peer Reviewer as it means that I have a direct impact in how others are treated.  I specifically Peer Review Teenage and Young Adult (TYA) cancer wards set up by the Teenage Cancer Trust because of my experience of being a TYA. This means that I read through documentation prior to the visit and when there, alongside other peer reviewers such as a nurse, oncologist etc. we would check that what the hospital we were reviewing said was the truth.  I also cannot Peer Review any hospital that is a part of my hospitals trust where I am treated so there is no conflict of interest.  This is what is so brilliant about Peer Review.  Trained patients as well as medical staff who understand how hospitals are run and the jobs they are meant to be done go in who have NO affiliation with the hospital under review at all.  This means the review is true.  After going through the documents sent prior to the review and checking against the documentation in the hospital, the staff on the ward come in and we would then go through the points and clear up any queries.  I then ask questions to make sure that care is appropriate and how they deal with potential issues such as patients who lived a long way from the Teenage Cancer Trust ward and how they would get access. (This is so important to me as I didn’t have access to a Teenage Cancer Trust ward and my experience was horrific).  This means that problems could be spotted before anything happened and if needs be, the hospital/ward put onto special measures until the problem was sorted.  THIS SAVES LIVES AND KEEPS PATIENTS SAFE.

I received an email this morning to say that the 2015 Cancer Peer Review has been suspended.  I do not know if NHS England is going to replace it with something else.  All I know is that without it there will possibly be no review of the hospitals that were meant to have it this coming year, or if they do it will be by people who may have a biased opinion which is problematic.  This is the point of Peer Review it is people with no bias who CARE about reviewing cancer services.  I was at a meeting recently and NHS England have stated that there will be an 8% rise in cancer patients going through hospital clinics, I believe starting next year.  An 8% rise.  Will there be an 8% rise in nursing staff and consultants? This 8% rise is going to cause a lot of strain and the fall out will no doubt be on the patient.  Peer Review is one way to try and prevent it.  I also feel that my right to protect and ensure correct care has been taken away.  The patient voice is so strong and so willing to make things better for others.  Especially for the Lost Tribe, the 16-24 year olds that ALWAYS have a rare cancer as it’s rare in this age range.  It’s never expected so often there is misdiagnosis of months or even years.  It is this age group that I am passionate about and want to be able to help and protect.  Peer Review gave me that and it was a joy to do it. 

I don’t know if writing this will do anything.  I just hope that the more who read it and realise the value and importance of Peer Review in cancer services might mean that someone somewhere will listen.  Don’t let another hospital disaster happen because we weren’t able to go in and check the paperwork, speak to the staff and make sure all was ok.  Don’t let cancer services be reviewed by other departments in the same hospitals – the review will never be 100% honest.  Don’t let NHS England take away this tool that can save lives.

Here is a link to a petition which links Peer Review and breast cancer
 http://action.breastcancercampaign.org/ea-action/action?ea.client.id=1777&ea.campaign.id=32111&ea.tracking.id=sianblog

So with a heavy heart, and it truly is, I thank you for reading this.

With hope for without it there is nothing,

Katie

Lower Drug Dose

So my lovely bloglets,

I had a check up last Tuesday and once again I left just a little bit in love with my consultant.  I can't tell you how amazing it is to be listened to.  It feels rather surreal.  She asks how I am, I tell her, she listens and then she implements change and checks with me that it's ok.  Seriously.  This is fucking amazing!  I don't know why I expect it to be different with her, I suppose it's because for the previous, well, 6 and a half years, I was asked how I was, I said and nothing was done.

So the change.  I have I think 4 days left of the current dose I'm on, then I drop down from 400mg a day to 300mg, which is the lowest clinically effective dose found in trials.  I shall see how that is for about 4 or 5 weeks and then I'm back again to see her to let her know how it is.  Depending on how the lower dose is and if it's still not great, I then have one option left.  If I decide to try it, which is MY decision and if it's not good I then choose the best out of a bad lot and stick with it, with possible breaks I think when it all gets a bit much.  But, hopefully the lower dose will be better or the last option will be.

I suppose it's appropriate to talk about fatigue at this point.  It's not great at the moment, I won't lie. Have done a few epic sleeps recently.  The best was the night before last - 13 hours!  And then yesterday tears at the frustration that when I try to have a normal life for a few days I then need at least two days of doing nothing and multiple 12 hour sleeps to recover.  I don't want to whinge, I just feel a bit 'it's not fair' at the moment.  However, lot's of good to focus on, like my gorgeous nice who smiles at me so much!  It's amazing.  I am looking after her this coming Friday as my sister is going back to yoga.  I can't wait!

I am getting ever aware that the 19th January is just around the corner.  8 years.....

Another good thing I found out is that my consultant is fairly sure that I will be able to extend my freezing agreement with the hospital and that I shouldn't have lost my fertility which is a relief.  Just need to find someone now....

I feel like this post is a bit meh, maybe because I feel a bit meh.  I think maybe because I might just have to accept that I might just be a little bit (or a lot) tired for the rest of my life.  A big thing to accept, I don't want to, but maybe I will be more at peace if I do.  I still have hope though, hope that my body will get there, get to the results that are needed to come off treatment.  I have come so far, it just sometimes feels like I'm a snail on the pavement desperate to get to the other side of the road and I'm still 3 paving slabs from the curb on this side of the road.

Maybe I just need to stop being so fucking whingy and be happy with everything I have.  Which is so much.  Don't get me wrong.  My life is so rich.  I have you, I have my family and friends, and twitter. I have my business and discovered at the weekend that I can call myself a Naturopathic Physician which is SO fucking exciting!!!  And I am involved with so many exciting things.  Sometimes it's hard to remember all that and easier to focus on the slightly shitty side of life.

As always, with so much hope and love,
XXX