The Haematologist Appointment - part I, 4th August 2022
End of Cycle 6 – 8 days after the start of Cycle 6 and 5 days after the end of the Cytarabine cycle, the cycle that requires the pump at home.
Arriving at the Centre for Shite Hair, a nervous wait as I see Greenwood cruise past a couple of times, looking just as intense as he ever looks. Somewhat nervous, Kerry and I wait for his booming call.
Then it comes….”Innes!!!! Ahhh, I didn’t recognise you, he said, I didn’t recognise you with your mask on”. Some convivial exchanges about masks didn’t put me at ease; I was very nervous. I’m not sure why I was nervous in his presence, but I was; I wanted so much not to be though.
He asks me how I’m going; we discuss side effects, the entire spectrum. We talk of fatigue and shortness of breath; he asks what that’s like in real terms. When I tell him that I can walk only 2-300m, he seems concerned but not alarmed, and we move on. I tell him of my parched and often painful mouth and throat. I knew it was mucositis and just wanted to check that if there were anything untoward, like a mass on my oesophagus, it would’ve shown on the PET scan. At times, but not consistently, I had had quite an uncomfortable difficulty swallowing, and I had started to develop a fear that perhaps I had a tumour or enlarged Lymph Node mass causing problems. I am learning that these fears of other things growing are widespread. I have this blood cancer, which manifested as a lump in my groin, with raised nodes all over my body, so anything that starts to feel a wee bit strange get treated with suspicion in the first instance. He tells me quite emphatically that, had I had a mass on my windpipe causing difficulty swallowing, it would have shown up, so not to worry.
Then it happened almost by chance……. I just asked if the scan was good. The Haematology Registrar had told me the week earlier that it was as good as it could get, but I wanted a) to make sure she was right and b) to hear from the big man, if nothing else than for some assurance.
Yes! Yes, you are in Remission! It was such a blasé delivery that I’ll never forget it. He’d just told me that my disease was in Remission and didn’t flinch, no stop for a celebratory smile (not that I would’ve seen under his mask anyway). No pomp, no ceremony. I was almost crestfallen. But no. Not this time Greenwood, you aren’t having this one from me………. both Kerry and I squeezed hands, Kerry squealed with delight, and I breathed a huge sigh of relief.
I want to leave this blog post there. Leave it because it felt like such a momentous milestone to achieve, a victory if you like. But, and just as Greenwood continued to ‘but’, we know by now that there is a ‘but’ with Mantle Cell Lymphoma, and that is that Remission is only the start, so there’s more; more to the appointment…….