I was very lucky in the beginning I'd been to see the nurse and she noticed my annual bloods had not been done so did them there and then. Had she asked me to make an appointment chances are I'd have forgotten all about it. Then I was lucky again with the doctor who looked at my results, he'd noticed that although my platelets weren't incredibly high they had been consistently raised since about 2017 so decided to write to haematology about it.
I was then sent an appointment to see a haematologist they took lots of blood tests and he also mentioned a blood test that was something to do with my bone marrow, there was no mention of cancer. These tests take approximately 6 weeks as they had to be sent to a specialist lab at Sheffield.
6 weeks later I get a phone call to go for an appointment at the chatsfield suite which most people know is the cancer suite so obviously I was in a big panic.
We went in the Haematologist explained what I had, essential thrombocythaemia (still no mention of cancer), and went on to explain the treatment was asprin (I'm allergic to it so actually take something called clopidogrel) and chemotherapy. Ray and I looked at each other and Ray asked "Are you telling us shes got cancer?". The consultant said yes (as if we should've already known this) its classed as cancer of the bone marrow, and comes under the umbrella of blood cancers mine was incurable but can be manageable with chemo. We were told that although my platelets were relatively low for this cancer (630 people can be in the millions before they get treatment) I was having to have the chemo as I'm classed as high risk because of having high blood pressure . A nurse went through the chemotherapy treatment with us I had to sign a very scary form that said I understand that the chemo can cause cancer 🙄 and was sent away with a booklet with had 3 pages on my cancer.
I've since found out that this is a rare blood cancer. Because I have the jac2 mutation (there are about 3 gene mutations that cause this cancer) I'm at greater risk of developing another cancer called Poloycythemia vera another rare blood cancer that means you also have too many red blood cells, I'm also at greater risk of my cancer progressing into the more aggressive mylofibrosis or acute lukemia.(the consultant did mention lukemia but said it was rare, (this was no comfort considering the cancer I've already got is also rare)
My bloods are checked every 2 to 3 months, so far I've had to have my chemo increased 3 times as my body seems to have gotten used to the dose and my platelets start increasing again. The chemo makes me feel crap. Bone tired, sick, dizzy, burning feet, itchy, and my hair has thinned. When I have my appointment with my consultant I feel like he wants to get rid of me as quickly as possible and doesn't really care about the side effects. Dispite having cancer I do not benefit from free parking at the hospital as I'm under haematology and not oncology. I'm also still working full time.
I think he should've started the conversation with "you have cancer" instead of assuming we'd been on google. I also think these people need to understand that although they may have seen this kind of thing many times its actually our first rodeo as so to speak.
