My name is Jo, I’m 34 and was diagnosed with Chronic Myeloid Leukaemia (CML) about a month ago. You’d think I’d know how to spell Leukaemia by now but alas, I need to use spell check every single time.
I spent some time this afternoon on the phone to a very lovely lady from the Blood Cancer UK helpline, and following that I just wanted to write a post with my feelings at the start of my Cancer Expedition (better word than journey) as I was worried I wasn’t normal, but the very nice lady assures me that I am. As such, I came here to write a rambling post about my diagnosis and how I feel about it.
I suppose you could say that my diagnosis wasn’t actually a surprise to me. I’m a little bit of a hypochondriac and I’d convinced myself twice before now that I had Leukaemia, only for the blood tests to confirm there was nothing wrong with me. As I sit here now, I cannot help but laugh at the irony of this. Most recently I’d convinced myself again that I had Leukaemia as I had these bruises start to appear on my legs, and they were huge. I’m a firm believe that you should name the things that scare you to make them seem less scary, so I called my bruises Barry 1, Barry 2, Barry 3 and so on. I went to the Doctor who examined the Barry’s and told me I was fine, but he’d order some blood tests to rule out anything serious. Obviously the Doctor failed to rule out anything serious as that was when I found out I had CML (apparently, 3rd time lucky).
The first thing I felt upon hearing this was relief. Not that I was finally sick, but that the fact I was sick had been confirmed by medical professionals and so now they could start treating me. Between the bruises and my Doctors appointment I had been a mess. Every time a new bruise appeared I’d call my boyfriend in floods of tears or hug the cat - I knew there was something wrong with me and it was just so comforting to know that now, it was going to be made better. I didn’t have to stress in front of the mirror anymore and I could stop obsessing over every tiny blemish. This leads to my second and the most predominate feeling I have.
That would be guilt. I have read the stories on the forums, and I cannot help but feel so very, very guilty. My current treatment plan is 1 pill a day, and as it stands the only side effect I’m having is constipation. I am so very, incredibly lucky and for that I feel guilty. When I shared my diagnosis with my friends and family, there were balloons, food, flowers… I don’t feel like I deserve any of it because I don’t feel unwell. I feel guilty for accepting gifts I don’t feel like I deserve. Yes, I have cancer. Yes, I’m undergoing treatment. But when I compare my experience thus far to the experience that some of you guys are going through, I feel ashamed of my diagnosis, like I’m not sick enough. I feel guilty that I am part of your community even though I don’t feel unwell, and I feel guilty for being lucky. The killer though is that I feel guilty because I cannot help but be thankful that I’m lucky.
My last few reviews have all been in the Day Therapy Centre at the hospital, and every time I go I feel terrible - like I’m at a club meeting even though I’m not part of the club. I feel nothing but respect and admiration for the people, and I say my little silent prayer to the Universe for their strength and wellbeing, and then the guilt descends because as I say my little silent prayer, I’m feeling well.
I looked around on the internet to try and help with the way I’m feeling, and all the bits I found in relation to guilt talk about the guilt you might feel for getting your diagnosis, but there’s nothing that talks about the guilt you might feel in situations like the one I’m in. My guilt is what stopped me from previously posting on forums such as this one, because I didn’t feel like this was a space for me, but the nice lady from Blood Cancer UK assures me that this is my space and you are my people. All of you. So here I am, joining in with the club. I hope that if anyone out there is in the same boat as me with this guilt, that you know you’re not alone.
I wish nothing but positivity and love to all of you <3
P.S. Because my Leukaemia scares me, I have called it Lucille. I can also spell Lucille.