I was told I had E T in 2009
I was put on Hydroxycarbamide as my platlets were high
I had no support my mum didn’t recognise that I was I’ll and still dosent even now never asked how I am
My husband is great and helps me a lot
After a couple years the hospital I was at the time just left me to cope as I was stable and so just had a phone call every 4 months
The nurse just said every thing is fine upped my tablet if it was high and I could never ask questions as she was to busy
I felt like no one cared
When covid came along I was not put on the shielding list my dr or hospital would not put me on with ET so I shielded myself I managed to get shopping slots after a few months so that was good
Then when people were having there covid jabs agin my dr said no I was not on priority list
That is when I thought this is not right so I sent a text to my dr with information from this site and he then looked it up and I had my first jab much later than I should by several month but was glad I did He also actually put me on the shielding list but couple weeks later that finished
Every jab I had to fight for
But luckily we moved last year and my goodness what a differance
I now have a good hospital that actually cares and when I get the phone calls with my results she always asked me if there are any questions it’s lovely
Sorry think I’ve had a bit of a moan
Hello @Bella10 and welcome to this forum. Thank you for sharing your story. In no way are you moaning and even if you were, it would be fine! This is a place where we can share openly and honestly how it is and hopefully feel supported and heard. We may have different blood cancers but we experience a lot of the same emotions and frustrations. We look forward to hearing more from you. I am so glad you now have a supportive medical team around you. Your past experience sounds pretty awful! Warm wishes. Willow X
Hi @Bella10 yes, as @Willow says welcome you are now part of our forum family.
You certainly did not moan this is a place where you can say how it has been or is being you.
You also show so clearly how we often have to fight our corner and how the services we receive can be so very different in different medical facilities.
I am so glad to hear of your positive experiences now, your nurse now sounds so lovely and caring.
Late Friday afternoon I had a call to say a consultants appointment I had for Monday morning was cancelled - frazzle, razzle, razzle and buckets of tears, I did not realise how keyed up for it I was.
Anyway the Blood Cancer UK support line is also there for you and I look forward to hearing more about you.
Look after yourself
Thank you Willow and Erica
I know how you feel, nobody asks me how i am. I have ET and just gets a phonecall every 3 or 4 months. My tablets are highered or lowered depending on my blood tests. My last phonecall last week i told my haemotologist my legs were very swollen and painfull, she just said tell your own doctor. I did and was sent for a dvt scan but that was clear, so now i just have to get on with very painfull ,swollen and itchy legs. I hope you have better luck than me.
Hi @Ruthiebabe1 I will copy your post to @GemmaBloodCancerUK for you.
Yes, your legs do sound very painful, have you been back to your GP to ask what else they can suggest to help you?
We are complex beings aren’t we?
What else is happening in your life?
Look after yourself
I think when no one listens when you try and ask questions you get so used to it you just don’t ask any more and put up with it I did and still do When I was diagnosed with ET I had been poorly for a long time headache aches and pains feeling faint all sorts it took a long time to be diagnosed my platlets were high I then had another blood test which told me I was jak2 positive and a bone marrow biopsy then I was diagnosed with ET
They tried other things and then I was put on the Hydroxycarbamide which worked then like I said after about a year or less I was left with just phone calls for years
It would be nice if your own mum cared and not told you that you are lazy when you go to bed because you are so tired when I went on holiday with her
Ruthie babe hope your legs are feeling better soon
That is the joy of our forum @Bella10 usually some people will have gone through similar challenges to us, especially with family and the medical profession issues.
I tell you what I have got a lot more ‘pleasantly assertive’ with the medical profession over the years.
A medical consultation is a two way process.
I also try to look at my behaviours and not others, on a good day that is !!!
I grew up with a father who always told me I was lazy even if I was reading a book.
He died many years ago, but I still feel he is sitting on my shoulder if I sit down to read a book. My sister thinks that I was swapped at birth as my sleep pattern is completely different to the rest of my family !!!
You really have had a frustrating time trying to get your diagnosis, please do keep posting as I look forward to hearing more about you.
Look after and be kind to yourself
Hello @Ruthiebabe1, so sorry to hear that you are suffering with your swollen and painful legs. Are you able to contact your Haematology Clinical Nurse Specialist about this? I would suggest this as you have been to the GP and ruled out one reason but in fact you need more support with this. Itching and leg pains can be a symptom of ET so very much worth mentioning, symptoms are mentioned here: https://www.mpnvoice.org.uk/about-mpns/questions/essential-thrombocythaemia-et/
If you do need to talk this thorugh please do call the team How to contact Blood Cancer UK | Blood Cancer UK
Hi Ruthiebabe1 i know the feeling as regards your legs i have the same best advice i was given was to go for a 30 minute walk every day it certainly helped no help from GP as he just says speak to your consultant i have phone number for my nurse and she is always helpful hope this helps you
Hi @Elamy and @Ruthiebabe1 a great big welcome to our forum @Elamy and you have shown the value of it already, thanks for sharing your experiences.
Yes, I think the current advice for so many conditions now is to take appropriate exercise and often load bearing, i.e. walking.
I have fractured so many vertebrae between 2011 and 2014 and they thought I was going to be wheelchair bound, hence us moving to our flat.
At first I could only walk a short distance, but now I am averaging out at 5 miles a day.
I was brought up to the saying of ‘use it or lose it’ and I think it is very true.
I must stress always take medical advice before undertaking any exercise though.
Look after yourselves and I look forward to hearing more about you @Elamy
I am so sorry that you have had a bad start with your ET diagnosis. I was diagnosed two years ago also . My platelets started at around 700 but I was put on Asprin once a day and have been on it ever since.
My platelets have gone down slightly now around 640 . If you don’t mind me asking how high are your platelets ?
I’m doing okay and I keep up my exercise and walking.
I’m pleased you now have a good hofpitsl looking after you. This site helped me tremendously so I’m pleased you have joined us,
Thankyou Erica, I walk into town every day, im scared if i dont i would be house bound if i didnt. Im glad ive got this forum to talk to, i havent a nurse to ask questions, i must ask the consultant on my next phonecall if she has time.thanks again. X
Hello @Ruthiebabe1 , I’m sorry to hear you continue to struggle with your legs. In your response to @GemmaBloodCancerUK, you mentioned that you don’t have a nurse to speak to. Your haematology team should include a key worker (usually a Clinical Nurse Specialist), who acts as your main point of contact for everything to do with your medical care and wellbeing. I’d encourage you to go back to your team and ask for a key worker/Clinical Nurse Specialist if you have not been allocated one already. As has been mentioned by others, please don’t hesitate to give us a call on our support line if you’d like to talk anything through. Best wishes, Tanya.
I have been diagnosed this week. It’s feeling strange. I went alone as I’d googled it and thought nothing about it - just get used to it as it’s a managed condition and I’m now taking a tablet a day (not aspirin as I can’t) and that’s it but I’m becoming more worried as it sinks in and find myself thinking about it all the time- I’m 49 with 2 young children and realising there’s a long road ahead is starting to worry me (family members have have numerous strokes and tias) starting to think I need to stop and let it all sink in ? Any advice?
Hi @TinaD a great big welcome to our forum and you must be in such shock.
You mention that you have 2 young children, but you do not say if you have any support.
You are now part of our forum family for support. No matter our diagnosis we often share similar fears, thoughts, questions and practicalities
I was diagnosed 18 yrs ago at the age 53 yrs and I am still here and my life is good and I manage my condition.
I think as you say you just need to let your shock settle a bit and sink in, it is completely natural.
Obviously easier said than done with 2 your children.
The advice I would give you is to really look after yourself and be kind to yourself and to realise that your feelings, thoughts and fears are so natural.
Please keep posting and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Welcome to the forum . We’re all here to help each other and I have found this forum a great place to read all the different diagnoses and it helps me immensely. I have ET and was diagnosed 2 years ago. I’m on one Asprin a day . I try and keep upbeat and exercise daily.
When I was first diagnosed my Doctor told me over the phone. I was so shocked but she said a few words I have never forgotten they were
‘Please remember you are the same person now as you were before I phoned you ‘
It took a while to sink in but I now try to keep positive and enjoy my life.
It must be hard for you having young children to look after and feeling like you do. We’re here to help do please keep writing .
My platlets when I was told I had ET were over 900 but now with the Hydroxycarbamide they keep stable under 400 so it does work
So nice to find this forum and chat thanks everyone
Sorry haven’t been on for a while
Have builders in at moment so been very stressful but will be worth it in the end
I went for my 5th jab yesterday
I was certain they would say no sorry
I took my medication and the printed off pages about the 5th from this site
I got there and she said oh you are here for your 5th jab I was
So pleased could not believe how easy it was
After a few sleepless night so pleased I’ve had it done
It was 3 months and 1 day since my 4th