Hope this is ok! Hy husband had his diagnosis by telephone 1 week before Christmas. Then a letter with information about Essential thrombocythemia (ET). Included was a prescription for aspirin to be taken once a day. The consultant all my husband remembered her saying was, just carry on your life as normal. Another letter came introducing his care nurse to help him on his cancer journey at the GP surgery. And she would call.
3 weeks later no call and his next hospital appointment in April.
He is 57 early 58. Works full time in a very physical job ( tree work) he has been struggling for 8 months with tiredness and other symptoms which we had just put down to other things until now, which explains a lot. Just feel he is getting no support. My hushand isn’t good at talking about things. Although he has given full permission for me to be involved with any medical treatment. Does this all seem normal with the journey. Thank you.
Hi @Sandy63 I am so glad that you have found us and welcome.
Firstly I have copied the Blood Cancer UK website link for Essential thrombocythemia (ET).
Essential thrombocythaemia (ET) - what is it, symptoms, tests and treatment | Blood Cancer UK
Unfortunately sometimes medical people do not realise the impact that their words can have. I had a similar, but different, poor experience.
I was in such shock that a lot of what was said to me was probably a blur.
Co-incidentally I was diagnosed a week before Christmas too and went though the festive period as if I was in a bubble with the world going on around me.
My GP said that I was more likely to die with my condition, than of it.
I also had the tiredness or fatigue and I couldn’t explain to work what I did not understand myself and I copy the Blood Cancer UK details on money and work, I don’t know if your husband is employed or self employed.
Blood cancer: money and work | Blood Cancer UK
Please do both contact your care nurse, they are there to answer your fears and questions. However they are busy people so it is worth taking the initiative.
You will both probably deal with things differently, there is no right or wrong.
Perhaps it is worth you both writing down your fears, questions and practicalities to ask…
If your appointment is in April then your husband might well go onto a system called ‘watch and wait’ or ‘active monitoring’. I have been on it for 20 yrs, I was diagnosed when I was 53yrs old, it monitors the progression, or not, of the condition.
It is an emotional rollercoaster and there is a lot of waiting around and not knowing.
The best thing you can do is to be kind to and look after yourselves and keep posting.
@Erica i am so grateful for your reply .
Yes a few questions to ask, things like flying. Family live in the US we love to go and see our grandchildren. As he was told he was a risk of blood clotting, what changes if any does he have to take? He very much just wants to get on with his life as much as he can. He is employed, although its a small firm…so working adjustments aren’t really an option. We will deal with that as it changes. Thank you so much for the links. And i have mentioned he needs make the first move to call the GP’S. I have learnt a lot doing my own research. The wait and see is mentioned. Again really grateful for finding this safe space to talk.
I too had my diagnosis over the phone, very bluntly I might add, and I quote "You have Chronic Leukaemia, you’ll need Chemotherapy and if you want any more information contact McMillan!!
I seriously thought my life was over if I’m honest.
So, I have Essential thrombocythemia (ET) (JAK2 gene), has your husband been told his faulty gene? By the way it isn’t genetic .I went on to have a bone marrow biopsy and I’m now on a daily Chemotherapy tablet, along with aspirin and other non related medication.
Regarding flying to America, I have flown there twice since my diagnosis and several times before knowing about it, I do wear the support socks on every flight and do foot and ankle exercises during the flights.
Just on the tiredness side of things, fatigue is a symptom I’m afraid, however, I also found out I had a Vitamin D deficiency and after taking it on a daily basis I certainly feel a bit better.
Can I suggest you reach out to the support nurses here on 0808 2080 888,I have a couple of times and they were amazing, informative and empathetic.
Sorry if that’s long winded but there are lighter days ahead.
Hi thank for your reply. No not mentioned he has the gene. I did mention flight socks and stretching his legs. Not sure about insurance will check that out. Thank you again and take care.
Thank you for the nudge! Husband called today abd has a meeting with his care Co next tuesday. List of questions will be ready.
Just wanted to update you. My husband met with a care coordinator through the GP few weeks ago. Very helpful. She will coordinate all his appointments with GP’S and anything else he needs. Last week we met with the clinical team. They were all so lovely and explained what is happening and what to look out for if things are changing. Seems my husband has CALR gene. Also they think he has had Essential thrombocythemia (ET) for some years and not known, due to the fact he never bruises. He is to carry on with the asprin for now. They took some bloods and he is going back in April. Holiday insurance i get through work and said he wont be covered! So when we need it will shop around. They did say at the hospital to talk to them before he does take a flight. Positive experience with hospital, all lovely.
Glad you joined this great group for support and advice. It’s been great for me.
First of all I would say I was diagnosed with Essential thrombocythemia (ET) about 12 years ago but probably had it a lot longer. When you are diagnosed with it the consultants tend to do more tests to establish if indeed it’s just that or one of the other myelomas. I had no symptoms just a high platelet count so that was my diagnosis. However my consultant wanted to make sure by doing a bone marrow biopsy and from that it was diagnosed as actually Myelofibrois.
Initially I was given clopidogrel not aspirin for the Essential thrombocythemia (ET) and exactly as your husbands consultant said carry on as normal. Apart from 4 monthly appts for blood tests I did just that. I had no symptoms wasn’t tired nothing. I think being allocated a “ cancer” nurse is just a point of contact if he gets other symptoms or has questions to ask but my consultant certainly would not class Essential thrombocythemia (ET) exactly a cancer. So yes it’s obviously a shock to
Your husband but try and put it to the back of your mind and get on with your life.
Hi @Sandy63 thanks so much for the update on your husband
@Sandy63 has given you a great response.
As for holiday insurance I attach details of one company that are used to insuring people with blood cancers.
Blood cancer travel insurance with Staysure | Blood Cancer UK
Other companies are available so please shop around.
Glad you had a positive experience at hospital and all is lovely, however please do keep posting.
Really look after yourselves
Thank you so much for the advice. He is very postive and is getting on with life. He gets very tierd after work, but not ready to change his life. Fishing trips an Riding his motorbike
Thank you so much. I did see this travel insurance on face book. I will definitely be updating and reading the posts. You are all so kind.