Hello,
My Husband has Essential thrombocythemia ('ET'), diagnosed 5 years ago & controlled with Hydroxycarbamide.
He struggles with his symptoms:
Fatigue
Brain fog
Pain
Itching in his bones
Enlarged Spleen (ultrasound being arranged)
I could go on.
He had a review with his Consultant, earlier this week & tried to discuss his symptoms & what to do about them; the Consultant was very dismissive & told him it was his age (he’s 61). Very frustrating. Changing Consultant/Haematology Team is not an option.
He is becoming quite down & withdrawn.
Does anyone know of anyone/ organisation that would be able to help him?
We are in the UK.
Many thanks 
3 Likes
Good afternoon @Mel1967 I hope that you are both as well as can be. I was diagnosed with Essential thrombocythemia ('ET') back in March 2018, some six months after my, to date, 1st heart attack. I am of a very similar age to your husband (61 in just over 3 weeks time), and suffer from most of the same symptoms, with fatigue being far and away the most severe of them, followed by itching. I too have an enlarged spleen and I am on first name terms with Mr Paracetamol these days. My Essential thrombocythemia ('ET') treatment is currently 2 hydroxycarbamide capsules per week and 1 Pegasys injection every two weeks, plus all of my heart medication.
It is easy to be “overwhelmed/feel ignored” by some consultants; I’m lucky in that I tend to see one of the same team each time I am at Leicester Royal Infirmary, and have a good working relationship with the main Receptionist who “marks” my notes with the Consultant I’d prefer to see.
As regards organisations etc, I find this forum to be absolutely and incredibly vital to my own mental health and well being as I get to “vent” my feelings on here, without fear of upsetting any of my daughters (4 of them!), and as I live alone…I think it is important to be able to do just that. As far as I know, none of my daughters follow me on this site, so I can get away with it! 
As a side note, it is important that you yourself make, and take, time for yourself to be able to unwind, vent, or simply put yourself first for a while.
Get your husband to set himself up on here in his own right and he will find plenty of like minded and symptomed (don’t think that is a real word, but it should be!) people who will respond to any questions he may have. Hope this helps.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
5 Likes
Hello @Mel1967, I’m sorry to hear about the difficulties your husband is experiencing, and how dismissed he felt at that appointment.
We have a piece on our website from someone who’s been through a similar experience of needing to push to be taken seriously, and it includes some practical tips that might be useful ahead of future appointments. And although you’re both no doubt very experienced at it, our page on talking to your medical team is worth a look.
There’s also our Looking after yourself with ET page too, which I hope might be helpful.
Our Support Line is there for both of you - and I really do mean you too, not just your husband. Caring for someone whose symptoms aren’t being taken seriously is exhausting and demoralising in its own right. As the line is staffed by BloodCancer UK nurses, they’ll also be able to advise you on how to help alleviate or mitigate some symptoms, and prepare for appointments - what questions to ask, and how to push for symptoms to be properly addressed rather than written off. You can reach them on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Do keep us updated,
Ceri - Blood Cancer UK Support Services
4 Likes