I haven’t written about my tumour in a year and a half, yet that doesn’t mean that the ganglioneuroma has disappeared. I still get regular CT scans and attend follow-up consultations with Dr. Swallow or another doctor or medical student at the GI clinic at Princess Margaret Hospital. As long as the news is the same then I see no need to document it here, however Dr. Swallow tells me at the end of every consultation that she’s “not going to release me yet”, as I will continue to need scans for the foreseeable future.
During my latest consultation in late May I met with Dr. Wendy Johnston. She attended to me at the time of my second biopsy. I approached this consultation with trepidation as my physical response has changed. During the time between my scan of November 2022 and the one I just had in May I am experiencing lower back pain at the base of my spine on the right side–which is precisely where my retroperitoneal tumour is located. It is not a pain that arises because of improper lifting technique or poor posture. It just occurs and at times can leave me in brief periods of agony. I describe it as being impaled against the back of a chair by a gigantic ice pick. I am like a bug pinned to a display board. This has happened once at work when I was sitting at the reference desk and could not get up from the chair. These pangs differ from the infrequent “ice pick jabs” which I now rarely experience. These painful bouts last sometimes half an hour and I feel something churning inside, like an Alien-like fist is trying to burst out of my abdomen. When it occurs at night I cannot fall asleep. At other times the pain hits without warning yet does not last more than two seconds; nonetheless I lose my footing. This has happened twice at work when I was standing and seemed on the verge of tripping. My colleagues noticed, asking if I was all right. Sometimes the pain is indeed so sharp and intense that I just want to collapse. On one occasion when Mark and I were leaving my house, I was walking down the couple of stairs from my door and was hit with this jab of pain and immediately crouched over and couldn’t move. If I didn’t have concrete patio tiles before me I would have been out prone. That very thought went through my mind as I was crouched over in agony: I would have preferred to lie down on the ground but didn’t want to get myself dirty as we were just going out. That was the first and so far only time that Mark has witnessed these sudden blows that hit me hard and leave me helplessly immobile. I fear that one day I will be struck down while holding a cup of coffee or something fragile.
All of these episodes have been documented at the hospital and will establish any patterns if they continue. They might even go away. Dr. Johnston told me nothing that I didn’t expect: she will take note of my pain and how frequently it occurs. I liked Dr. Johnston; she remembered me from the biopsy and knew more about retroperitoneal ganglioneuromas than other doctors with whom I have had post-CT scan consultations. She asked me questions that none of the other doctors did.
I really didn’t expect (or want) Dr. Swallow or Dr. Johnston to tell me that I needed surgery. They both confirmed what I have heard every time when I talk about tumour removal: that the repercussions are far riskier than leaving the tumour in. Dr. Swallow told me that some of her patients have tumours larger than mine and even then she does not recommend surgery. Since my pain never lasts long, and has no lingering aftereffects, you’d swear I was never in agony in the first place. It’s not even worth it to take painkillers since the pain would disappear before any drug took effect.
I have a telephone appointment with the ominous sounding “Tumour Board” next week, and then another CT scan in five months.