Hi all, I’ve posted before, i have severe health anxiety and had the crisis team in the passed. I live alone after finding my dear dad passed away. I’ve ocd, borderline personality disorder too. My platelets have been high since 2018, in the 500 + mark but in October they were even higher. Went for chest x ray came back normal but traumatised me. Had bloods done again, and platelets still high and my cpr 63 and esr 45 - I’ve been referred to hematologist… I am a wreck
Hi @Nayia anyone would be really anxious in your situation after everything that you have been through. You’ve come to the right place for support though and the brilliant Blood Cancer UK Support Team. For medical issues I could suggest talking it over with your medical team and ask any questions about things that are worrying you. I do hope things get better for you but please do come to the forum and tell us if need to talk things through.
You’ve certainly had a hard time recently and I’m not surprised you’re feeling anxious. I know waiting for appointments is challenging but if possible try and take time to do things that you enjoy to take your mind off things. This is what I found helps me.
I know you mentioned that you’ve used the helpline before but as a reminder the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at email@example.com. We’re all here on the forum as well so you can reach out to us too.
All the best, Peter
Oh @nayia, you really have had a lot going on. It must have been so tough finding your dear dad passed away and now be living on your own.
I am so glad you have posted to us on here, we are here for you.
Have you considered bereavement counselling it really helped me.
I know we are in Covid times but your GP and medical team are there for you.
Also don’t forget your crisis team if you need it.
Do you have any support?
When are you going to see the haematologist?
The waiting is the worst especially if you have anxiety anyway.
We are here to support you and if you would like to speak to someone you can contact the wonderful Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at firstname.lastname@example.org.
Please keep posting how you are.
Hi @Nayia, firstly thank you for being so open and brave on the forum. This is your space and your community and a wonderful support from everyone. Secondly, id like to reach out to you, as your going through a very difficult time during this very challenging times. We want you to be in a good space, please do call the support line, we’re always here for you so you can express and talk through how you are feeling and what you are going through. As the lovely forum support volunteers have mentioned out support line number is 0808 2080 888.
Does anyone at least know if my readings that I have put are very bad?
Hi @Nayia, sorry I am useless at medical stuff, but what I do know is that our blood test results are only one factor that a clinician takes into account, there is their progression, symptoms, medical history etc.
I hope you get answers soon.
Nayia I’m so sorry to hear you’re going through such a worrying time. Have you been told when you’ll be able to speak to the haematologist?
You mention you have anxiety so I imagine this period of waiting to know more is really tough for you. Do you have someone who is supporting you through this time?
As others have said, we are only at the end of the phone if you want to talk things through.
Hi there. I’m so sorry to hear you are going through such a tough time right now. I wish I had some advice to give, but just wanted to let you know you aren’t alone, and send you well wishes. Suffering with anxiety is horrible at the best of times, let alone when things are tough, so please look after yourself x
I am not medical at all, I have had ET for at least 21 years - and I think platelets should be around 150-450
My platelet counts were around 800-950 for 17 years,
eventually they told me I was old, (over 60) so recommended I go onto drugs other than a childs asprin, and they are now around 350-380, and my haematologist thinks that’s fine for me.
I would put down a list of questions to ask when you see the consultant, and make sure you write down what they say, and double check back with them - you think you will remember everything when they explain it, but it’s surprising how your mind can be like a sieve when you are worried. I hope things work out fine - Heather
Agree with all that HeatherThomas says. I’m even older (76) been on HC for 7+ years and would be thriving if it weren’t for a rogue prostate (one of the joys of being an elderly male!). But as Heather says, take time to write down all your queries, listen to the haematologist’s answers, ask them to explain if you don’t follow what they are saying and WRITE NOTES. If when you read the notes, anything isn’t clear, ask to speak to the specialist nurse practitioner. For what it’s worth, “my” haematologist is happy with my platelets hovering around the 600 mark, not the magic 500.
I can only add my support along with the others Anyia, and can only speak for myself, but when I was anxious about my condition, I found it very easy to speak to a member of the hospital team, who then passed it on to my consultant. She phoned me back within a short period of time and put my mind at rest.They were and are very accessable, perhaps you could give your team a call, if you have not already done so, and see what happens. Given your on personal situation, please try and talk this through with someone, nnd please remember that you are not alone, and only a phone call away from help. All the very best. Ron
Thank you all for sharing and being supportive, I will take on board but I’m scared of appt when it comes and also scared because apart from platelets, no one has mentioned if they’ve had high esr or crp with them…
It’s natural to be scared. Make sure you’ve someone with you for support. Your medical team will be very experienced at dealing with people in your circumstances so they’ll go through everything with you. It would help you too to have any questions prepared to bring with you so that you don’t forget anything. I know I found my early days very bewildering and wasn’t prepared for it all as it came out of the blue, so I didn’t really know what to ask as I suddenly got told I had a disease that I had never even heard of. Hope you are able to get the reassurance that you’re looking for.
Hi Nayla, I can only reinforce what everybody else has said. It’s normal to feel anxious and scared. Please let us know how you get on and call the support line if you need to x
Your platelet range is supposed to be between 150,00-450,000 so your platelets are that elevated a great deal but as you have said it has been going on a little while now it’s best the see someone who specialises in this area.
Hi @Dazakella a welcome to our forum and I hope you will find it supportive, I do. If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at email@example.com.
I look forward to hearing more about you.
This has effected me so much I’m an able to function. The hospital has confirmed appt and that I must attend with a carer as support due to mental health. But i refuse to have a ct scan. I’m not anxious, I’m TERRIFIED. My health anxiety is one of the worst seen and this is what I’ve been told by many professionals.
What were you diagnosed with, can I ask please?
@Nayia, you are so brave sharing on this forum. I hope the appointment goes as well as it can and I am glad you are taking a carer, please let us know how you get on.
We are here to support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at firstname.lastname@example.org. Take care and stay safe and keep letting us know what is going on for you.