Why is it that when fasting for a scan, all you can think about is food? Or at least a coffee. Tea?
I did actually wake up at 6am on scan day so I could have my morning coffee. I accidentally made it too weak and sat there grumbling.
But I made my way into UCLH early because I had a pre PET-CT Scan meeting with my love Deepti.
Who told me I’m not dying. Not that she knew any more than the Oncologist had the week before, at that point, but she seemed to be more confident than he had been.
She did say though, while it could be cancer, SHE is the one who cut it out and she would be very surprised if it had come back now, there. It looked ‘too far back’.
The game plan was to get a PET-CT Scan and if it showed something, we’d biopsy. If not, we’d just wait watch and see.
The scan ended up running 2 hours late because there had been an issue with the first batch of radioactive dye and they had to make a new one and bring it down from… maybe Milton Keynes? Which I mainly know because it’s where the Red Bull F1 Team have their Factory (Go Max Verstappen!). Once it had arrived, I had to wait an hour in the dark without moving while the dye moved around my body (I fell asleep – I usually can’t fall asleep anywhere but my bed and with perfect conditions but I always seem to fall asleep in the hour while I’m waiting for this type of scan). I was pretty hungry by the time I got home at 5pm.
But the results are now in and nothing has shown up in the scan. Nothing!
So no new bad news today!
No biopsy for now, and we’ll just scan again in 3 months and see if anything has changed. Still, no one knows what it is, and I have no idea whether it’s something that will become a problem or if it’s fine or what, but it is a relief for the results of a scan of something ominous to not need immediate biopsy and rush back in to lose more of my face and have that ever present idea of my own mortality being pulled into the foreground again. That is a win for this round.
I also found out that since my rediagnosis, my wonderful team have been working hard to try and see if they can help what happened to me (i.e. my recurrence and the state I’m in now) not happen again, to me or anyone else. They are currently working to redefine the treatment of osteosarcoma of the maxilla – something that has never really been done, since osteosarcoma treatment hasn’t really been reviewed or changed since the 1960s. They are doing super exciting work to save lives, of which the catalyst was little ol me.
I obviously cried when I found that out. Happy, overwhelmed tears.
In the list of ‘inappropriate things that have been said to me around my cancer/diagnosis’ is people occasionally (only very occasionally) saying ‘yeah but aren’t you grateful for it overall?’ if I say it’s been really hard. As in, they mean grateful for the cancer, not grateful for the treatment itself. You all know I’m ridiculously grateful for the treatment and care and love and support I’ve received (thank you to you all), but I can’t imagine any of you would think I’m particularly grateful for the CANCER.
Comments like this aren’t helped by the trend of society wanting to refer to incredible illness that nearly does and still might kill you as a ‘journey’.
Journey, /ˈdʒəːni/ noun; a long and often difficult process of personal change and development.
If I wanted a process of personal change and development, I would have joined a monastery, sailed solo around the world, or walked the Camino. Cancer is an illness, not a self help book. But we humans love to sugar coat other people’s suffering to make ourselves feel better about it.
Something I have found that all my friends with cancer (and other chronic/rare illnesses) share – IF something good can come from our suffering, we will do whatever we can to facilitate that. This is why people do trials, participate in studies and do other things around advocacy and education (not that people who don’t do this are any less – they might not have the opportunities or the will, and that’s fine too). We hope that if we must suffer, it can be used to help others in some small way. Soon after I heard about what my team had been doing, I actually met up with two of my friends who also had/have Osteosarcoma (they’re both leg peeps) and we chatted excitedly about the different ways we have contributed to research. And drank a lot of wine.
So all in all, it’s been a decent week! I’m back to working on all my non-cancer related projects and just generally watching this space. Next MRI in three months, so we’ll see what comes up then. Can you believe that’ll take us to nearly the end of the year?
Sending love and light to you all, thank you for being here with me through everything, and for all your wonderful words and support. More to come, of course, with ups and downs I’m sure, but I think we can breathe a sigh of relief for this moment and pour a glass of wine. I certainly am.