I am writing today so that I can vent some frustration from a pretty tough weekend and also to get other people’s point of view on this subject as I'm pretty sure I won't be alone in my feelings or my situation...
To cut a long story short on Saturday I received a very unexpected appointment letter from the hospital to go in on the 26th April for a full body bone scan.... Why do you get an appointment letter with no explanation? I’d had a CT scan last week (for a muscular pain I haven’t been able to shift since surgery) so my mind straight away jumped to worst case that they had found something in the CT and they must have wanted to explore this further.
I’m sure you can imagine what some of my initial thoughts were. I actually said out loud to my parents ‘Hello… I am a cancer patient and I’ve got a letter for a bone scan, what am I supposed to think?’ Some of my initial thoughts were - What have they found? Have I got bone cancer? This scan sounds serious? Why has no one told me what this is for? Why does everyone around me look worried? Who did the appointment come from? How do I find out what this is for?
From my last blog post you'll all know that I've finally accepted my 'New Normal' and am quite happily moving on with my life, enjoying things, going out more, exercising all the time again, booking holidays and all I could think over the weekend was that I will now have to cancel all these plans. How am I supposed to move on when anytime I feel like I’m getting somewhere another appointment comes along and this whole cycle starts again.
I can’t help but feel like history is repeating itself because with my initial metastatic spread this is what happened, random appointments coming out of nowhere which were totally unexpected and ultimately led to another cancer diagnosis. I couldn’t get the thoughts out of my head over the weekend that this was happening again – For a third time! I’m normally really good at not thinking the worst and making logical sense of things in my head but I could not get my head around this. The initial CT was for a muscular pain so why would they be scanning my bones for a muscular pain? They must have found something on the CT that they didn’t like the look of. Either that or it was clear and they wanted to explore further – Yes I know this is the logical answer but my brain would not do logical.
What annoys me more than anything is that I made my feelings about this whole process really clear the last time. My consultant has my phone number, e-mail address etc. I gave her lots of different options to contact me and made my preferences known. Can I also say she wasn’t shy using the e-mails the last time; I was actually e-mailed at work to be told I had a positive metastatic cancer result. So why would you think a letter this time was suffice? Especially when you know appointment letters go first class and yours come second?
I took it into my own hands and decided late on Sunday night that I would e-mail my consultant at the hospital in the hope she would reply first thing Monday morning however to my surprise she e-mailed back within a few minutes. She apologised that her letter hadn’t gotten to me first and explained to me what the scan was for. She advised the CT was clear apart from thinning on my breast bone (this is the one that got broken and put back together during my last surgery) and due to other symptoms that I have the radiologist is worried about infection in the bone therefore wants the bone scan.
What a relief – I laughed out loud when I read it to my sister, I instantly felt like such a drama queen and was a bit embarrassed about all of the worry I had caused the people around me over the weekend. It really wasn’t funny at the time but now that I know what it’s for I can make sense of it and finally my logical thinking has taken back over and I’m not the sweaty heart racing, unable to concentrate mess I was at the weekend!
She said she will let me know the results when she has them – Here’s hoping I don’t need any further scans/tests and I get that first before she is in contact. I thought I had managed to ‘train’ my team into how to manage me as a patient but looks like I still have some work to do.
I feel much more relaxed and calm about it now, two days later – Still nervous for the scan itself but much more relaxed about what the potential result could be. Fingers crossed for me its third time lucky!
Jena :) xxx
