Hi all. I am not your usual googler and over thinking person. I have suffered with high bloods for around 10 yrs. I have researched a lot to do with bloods and am now studying a biomedical science degree. But yet i still keep coming back to Chronic lymphocytic leukaemia (CLL).
So i have a high white blood count, lymphocyte count, neutrophil count and slightly high platelet count.
Over the last 3/4 years ive become quite poorly and am practically bed/house bound. I have extreme fatigue, night sweats, body aches (nearly everywhere at times.), bloating And i get intermittent swollen lymph nodes.
I do have a couple of other medical conditions, making it hard to know which symptom is for what.
After being monitored for a while in the community i was at my first hematology appointment 2 weeks ago. I had lots of blood tests done first and then saw someone an hr after to talk plans. Only my full blood count was back at the time of my appoinment and these where high just as expected. I was told my blood would be sent off to another hosspital for further testing and to expect another appoinment in 4 to 6 weeks.
1 week 3 days after my appoinment ive had another appointment sent out for more blood tests and another hematology appointment for a weeks time. This would only be around 3 weeks after my initial appoinment and now this has me a little concerned.
I am mentally prepared for whatever comes my way, small or big, but i am slightly worried at what is going to be said. Im only 32 and a Chronic lymphocytic leukaemia (CLL) diagnosis at this age makes me worried about my future.
Dear @Ledger14 - a huge welcome to our forum. I’m so glad that you have found us and thank you for sharing. I’m very sorry to hear that you’ve been quite poorly.
I can’t speak from a medical perspective, but having lived with a different blood cancer for almost 13 years - I have an understanding of what you are going through. It is understandable that you are filled with worry and wonder.
It sounds like you are being looked after, but I understand how frustrating and worrying it can be as you wait for tests and results. I always try and avoid googling as it can lead us down an unhelpful path.
Please know you are not alone. There are so many people on the forum that have shared experiences and perhaps you might also find it helpful to speak to one of the Blood Cancer UK Support Service Nurses - they can be contacted for free on 0808 2080 888.
I also find it helpful to make a note of my worries, concerns and questions so that I have them to hand when I next see my consultant. It can be overwhelming when you get to an appointment so it does help!
Take care of yourself and please do keep us updated on how you are getting on
Maggie
Hi @Ledger14 a great big welcome and you yourself show so clearly what complex individuals we are and when we have very generic symptoms it is a matter of doing lots of tests to rule conditions in or out and the waiting and not knowing is horrible.
@MaggieLT has given you a great response.
Does your medical team in all departments know exactly how poorly you and practically housebound you are?
It sounds as if you are having lots of tests.
Please do let us know how you get on.
Be kind to yourself and look after yourself
Thank you for your reply.
Im just finiding it so hard to not worry at the moment. Its more the fact of how fast my next appoinment has come that has made me worry more then anything.
And now the time is dragging till the appointment gets here.
Im back for more tests and to see oncology on 1st March so i will keep you posted. Thank you so much for your reply. I hope you are well. Im sorry youve had to go through all this.
Hi, thank you so much for your reply. It really does mean so much.
Yes we really are so complex its very strange and interesting at the same time.
I think i had 22 different tests last week. Some i was really happy they did. Like the flow cytometry and a few others.
Yes they know im not well. But i do have a few other chronic conditions so again it has been passed onto other things at times. I personally feel that ive become so ill since some of my blood levels have gone higher.
Im back to have more tests and to see oncology on the 1st March so i will keep everyone posted. Thank you so much for your reply. I hope you are well.