Recently, I’ve had a pretty good run of it all. Great response to my new treatment, Pemigatinib, resulting in really encouraging scan results showing shrinkage on all tumours, with some in my lungs, going completely. As you can imagine, I felt amazing and really well.
The high continued as I was given a great opportunity to discuss my story and how Pemigatinib has been working for me on local radio and TV.
But, cancer being the fickle disease that it is, things have changed.
Out of nowhere, I began feeling extremely tired, overwhelmed, and generally down. I found this incredibly frustrating and started to beat myself up for feeling “ungrateful” when everything has been going so well when I knew others were struggling so much.
What certainly didn’t help was receiving the news that my blood tumour marker (CA19-9) had increased quite significantly. No one expected that so soon. Tumour markers are not always reliable for everyone, but for me, they have always given a pretty accurate indication of what’s going on. My next CT scan has been brought forward from September to tomorrow just so we can check nothing – hopefully- has progressed. I still feel well physically but this unexpected blow has thrown me completely.
I’ve struggled with meditating as my concentration kept wandering, I barely went for walks and struggled to find any positivity. I have felt very alone when I know I have so much support around me. I just couldn’t lift my mood. I’m rarely one to cry over my own situation unless it’s with relief, but I’ve been on the verge of tears many times recently. Something completely trivial and unrelated has become overwhelming and resulted in tears.
I’ve realised I’ve actually felt scared, and this is an emotion I haven’t really felt. It’s occurred to me that when I got to start this new treatment, and after all the amazing stories I’ve heard from others who have been on Pemigatinib with plenty of success, and along with my own, I really have pinned all my hopes on this. I haven’t even considered that it won’t work for me and I certainly didn’t think it could potentially stop already.
I have to remind myself that I haven’t actually been told any of this yet. I’m just feeling fearful. I’m assuming things that I don’t even know to be true. I’ve been focusing on how I have very limited options after Pemigatinib and how I will probably go downhill fast. Will I make it to Christmas?
Ugh, no wonder I’ve struggled to find any enthusiasm or positivity.
Luckily, a few friends have asked me if maybe a delay in starting my last cycle of treatment could be the reason for an increase in tumour marker. One thing IS for sure. I need to get out of this fearful, pessimistic frame of mind. Of course, it is completely understandable, and I doubt anyone would begrudge me feeling this way, but I know that if I dwell on this too long, I will sink much deeper into fear and potentially depression. It will affect all areas of my life, and that’s no way to “live”.
Being brave isn’t the absence of fear. Being brave is having that fear but finding a way through itBear Grylls
So, tomorrow I will go through that scanner like I did last time…. with a smile on my face! Last time, I just knew that I would hear good news – not quite as good as I received though – and this is how I will enter tomorrow.
As hard as it can be all the time, I strongly believe a positive mindset and having trust that everything will be ok, goes a long way. I’ve received bad news on a few occasions now since my diagnosis, and I got through those. If this scan results in news I really don’t want to hear, I will allow myself some time to deal with that and then keep going.
The ebb and flow of cancer can feel unrelenting at times, and as positive as I try to be and is in my nature, it’s impossible and unrealistic to think fear isn’t there, lurking around the corner. Allow it and let it go.
Tonight, I have found the perfect meditation and now that my “wobble” appears to be over, I can fully immerse myself in relaxing and finding the inner strength that briefly deserted me.
Who knows what I will hear next week. Do any of us?
But, as much as I’d love to bury my head in the sand, I can’t. It’s hard to hear bad news but hear it we must and we are incredibly resilient beings.
And, if it’s good news…..well, I get to enjoy the euphoric bliss that brings!
Much love and strength,