Another post singing the praises of Guys Hospital and Prof H

[Fjdjdjdjd]

Hi All- I posted last week asking for help with what questions I should ask at my first appointment at Guys. This is just a follow-up firstly to say thank you and secondly to say everything people say on here about how good the team is true.

It is the first time in the year since I was diagnosed that I have truly felt listened to and actually cared for. The stark comparison to how I have been cared for prior to this team is shocking in infuriating. I'm currently furious at how I have been treated and relieved about my future prospects all in the same breath. All in the journey of dealing with this diagnosis, right?

I've spent the past 3 months worrying that I was told I had grade 1 fibrosis (5 months after they did the BMB I might add) which changed my diagnosis, yet nothing was being done about it. Yesterday, I was told there was no fibrosis, which is a weight off my mind, and I'm back to the ET diagnosis again.

I would really encourage anyone who hasn't been referred to an MPN specialist to really push for this with your GP/current haematologist. It is a different world.

[hunter5582]

Seeing a compassionate and competent MPN Specialist makes a huge difference! Very glad to hear that you have experience this. kudos for making it happen.

[Aldebaran25]

They are indeed very competent and caring. I am very lucky as I was diagnosed directly at Guy's and have been their patient right from the start. I will never forget how I was told soon after diagnosis by the department's clinical nurse "don't worry, we've got you". Gave me peace of mind and that is priceless.

[Wyebird]

Thrilled for you. Will you stay under Guy’s now or are you doing shared care?

[Fjdjdjdjd in reply to Wyebird]

It’s not completely clear yet. The specialist nurse said it’s best to keep my local one for emergencies, although they are impossible to contact so they aren’t really there for emergencies. When I said that it took 5 months to get my BMB results Guy’s asked if I wanted to be cared for by them, so I’m going to clarify at the next appointment.

[Wyebird]

I’d jump at the chance and stay under them. My nurse promptly answers my emails. She’s amazing. It doesn’t bother me if I see her and not a doctor or consultant.

[Threelions]

I love being under the Guys team. They’re absolutely fantastic. 👍