I had a brain haemorrhage and CVST last year and doing really well. I was diagnosed with JAK2 mutation, but my blood levels have been normal and I’m now on 3 monthly blood tests. Must add that my GP does regular blood tests as well. Tests done by my GP were normal 4 weeks ago.
I always live in fear every visit to the Haematologist. My next appointment is 3 days before we go on holiday abroad, which we’ve really been looking forward to. I’ve taken about insurance which cost £500, which we don’t mind, making sure we have full cover in case the worst happens, god forbid.
When we last visited the haematologist, I was told they will discuss my mutation in more detail then. Three days before I attend, blood tests will need doing.
I’m now thinking about cancelling blood tests and appointment with haematologist till when we return from holiday.
I’m very worried that the consultations will have an effect on my insurance for my holiday. The insurance company have been informed that I have a JAK2 mutation ( plus numerous other conditions including my CVST and brain haemorrhage.) I’ve also formed the insurance company that I likely have a CHIP They aren’t interested in my CHIP and JAK2. Not sure whether to cancel my appointment for 2 weeks, till after my holiday. Worried it’ll ruin my holiday. Perhaps I’m wrong? Thanks.
Oh @Susiewest, what a dilemma for you.
I am glad that you are fully coved insurance wise for your longed for holiday.
I still get anxious before, during and after tests and appointments and I was diagnosed with another blood cancer 20 yrs ago.
You do sound anxious to me.
I think I would consider whether my anxiety on holiday is going to be more or less if I see the consultant before going on holiday or when I come back.
No answers, no right or wrong, just personal choice.
Please do let us know what you decide and how you get on.
Be very kind to yourself
I can understand your dilemma and it’s a really difficult to advise as it’s such a personal decision.
How long will you have to wait if you cancel? Is it important that the bloods are done at this time and how may it affect your health? A lot to consider I know. Please keep us updated on how you are doing 
I’m going ahead with my blood tests, next week, prior to our holiday. I’ve already told my insurance company that I have a JAK2 mutation and there’s a possibility I have a CHIP. They weren’t interested when I took out the insurance, the day I booked our holiday. I also told them I have regular blood tests and they’ve been normal. The insurance company informed me that this would be recorded on our records.
I now take the view that if there’s a change to my blood levels next week, ( they were normal done by my GP four weeks ago) then I’ll ring my insurance company to let them know.
Would a change in blood level automatically mean I have an Myeloproliferative neoplasms (MPN)? Or presume that BMB would be undertaken after my holiday, which we go on next week?
Isn’t life tricky these days! Anyway looking forward to our holiday and also have the GHIC as well.
Hi @Susiewest that sounds like a plan to me.
This post sounds a completely different tone to me.
I always feel so much better when I have made a plan.
Please do keep us posted how you are getting on and have an absolutely wonderful holiday.
Look after yourselves