Reflection on Change

The last few weeks have been quite tough. Processing that my consultant is going and the change that will bring. I struggle with change yet life throws it at me quite a lot. It's funny how life has a canny way of giving you often what you don't want because you don't like it. Forcing you to face up to it and change yourself and therefore become more flexible and adaptable.

Unfortunately the lower dose of drug is still having an impact on my energy levels. I'm adjusting to it and wish I was as I was for those few weeks that I had my life back. But maybe it's also so I prioritise and look after myself. I have however found doing anything I'm meant to do lately very difficult. I don't know if it's because I'm fucking knackered again or because winter is showing its face and I want to retreat inside and hibernate and rest rather than plan for patients, go to lectures and do the crazy amounts of work I have to do. So I don't. And then I make it worse for myself.

Yesterday one of my patients was booked in, they had changed their appointment and for some reason I didn't get the email letting me know. I therefore hadn't really done any preparation work and was completely thrown by it. There have been complications with this case and I had a bit of a strop saying I was fed up about the way it has all been a managed etc and it's not fair on me or the patient. By the time they came in I was in a better mood, possibly because the caffeine had kicked in and because I had adjusted to the change in the day. More change.

After the consultation I was given really amazing feedback and it has once again confirmed that I am doing the right thing. All this change is meant to be because without it I wouldn't be where I am. And I am meant to be here doing what I do. 

I can't believe it. He's LEAVING ME!

Yesterday was Thursday and my clinic, so back to the Hammersmith I went.  With my lovely army friend who thankfully has returned once again from the lands of death with all his limbs intact.

Check-up was fine – haven’t put on any weight, thank fuck, because let’s face it, that is probably my biggest concern.  And yes I know that probably isn’t very healthy etc etc etc blah blah blah, BUT I think it’s probably a better thing to worry about than if the cancer gets worse or my bone marrow kicks in again or the million and one things I could worry about.

As it seems to be the trend over the last few check-ups the nurse calls me for my bloods who completely destroyed me in July so I don’t let her touch me.  And funnily enough, she remembers that I won’t let her do my bloods.  The clinic was pretty busy yesterday and when she called me I went and as I got on the scales I asked for someone else to do my bloods.  She said that it was ok   today, but as I could see the clinic is very busy as two other hospitals have merged with the Hammersmith so I can’t always chose who does my bloods.   She also made it sound like they had merged that day, it had in fact happened last year.   Basically I was being a difficult patient.  The nurse who was doing my bloods said not to worry as I apologised and explained that I am very nervous of the other one touching me as she really damaged me before.  I had bruises for 3 weeks after the other nurse attempted to do my bloods and for that day I couldn’t have my hand below my waist and my hand hurt so much where she had inserted the needle for attempt number two….anyway.  The point if this is that she is NEVER going to do my bloods again, and I have the right as a patient to request this and she can fuck off.

I did have some bad news.  My amazing and lovely and hilarious consultant is moving to America.  FOR FUCKS SAKE!!!!!! I CAN’T BELIEVE IT!!!!!!!!!!!!!!!!!  He said I could carry on seeing him so I asked him to pay for my flights.  Funnily enough he said no.  He has referred me on to another consultant and he said, I shit you not, ‘they are a much better doctor than me.  If I had CML I would want them as my consultant.’  So we shall see….I’m back in February.  I did ask him if the new one has the same approach as he does and he said that they should.  He also told me that in France people who get taken off the drugs do have slight fluctuations but as long as it says below 0.01% (or 0.1% can't remember now) they are left off treatment, so maybe that is something that my new consultant will be open to….  He also said that ideally he would like me to stay on treatment for another 9 months to really stabilise things, so we shall see.  I feel positive about this but a bit upset that he is leaving as I finally feel like I’m actually being listened to.

Nothing much new to write about this time, feeling quite tired today, and have so much work to do.  Fun. Oh, I was going to rant about movember and for some reason it’s really pissing me off this year.  I’m not sure why.  Maybe I’m just allowing more feelings and being more honest about them.  I know it’s important that people are aware of the various types of cancer and that people (men) talk about them and go to the doctor and get checked out.  But, asking for money for growing a tash.  Really?? REALLY??????  Go and do something a little bit more impressive than something you have the innate ability to do so.  Run a marathon or climb a mountain or something.  Maybe it’s just because I’m really fucked off that I live with a chronic disease that has a monumental impact on my life and there is no visible sign of it. I was on the tube and exhausted and really needed to sit down but didn’t say anything because I have nothing to show to prove it and no one offered me their seat because I am a ‘healthy young(ish) woman’ not pregnant or have a walking stick etc.  And then on the flip side, of course I am pleased that this is the case.  It’s very difficult and I’m just a bit fed up at the moment.  And on that note, need to eat and think about bed as I have had to cancel on a friend again because I can’t be arsed to go out because I am, for a change, knackered.

XXX