Chordoma Foundation

Hannelie’s Uncommon Story: Knowledge, wisdom, patience, and strength

Hannelie's uncommon chordoma story

Good day everybody. My husband, Ampie, was diagnosed in November 2016 with a huge sacral chordoma. That was a shock no-one anticipated, especially him, being very active and healthy. He did not complain of any major pain or discomfort.  From time to time during that year though, he did ask me to rub his back with either wintergreen or some sort of ointment for muscle pain.

The first sign we experienced and thought something might be wrong was when he had lost control of his bowel … and that happened in my car …hiehie … and him wearing white chinos. From there-on appointments with our GP, orthopedic surgeon; neurosurgeon; MRI-scans etc., etc. followed like meat stacked on a skewer stick.

Fortunately, we waited about 30 minutes for the radiology report. Once the orthopedic surgeon sat down to discuss the report with us, his eyes swelled up with tears and his first words were “uncle…it is bad it is pretty pretty bad.” According to the radiology report, the tumor was 14 cm in length and 9.8 cm in width.

The tumor developed around his coccyx, S1, L5 and L4 vertebrae. The tumor also caused the loss of his bowel and bladder movement. He had to have an end-colostomy done and is now using a suprapubic catheter.

Due to a misunderstanding between me, one of the service providers, and my medical aid, the original date for the operation had to be postponed to 5/12/2017. In that six months the tumor metastasized to 22 cm in length and 14 cm in diameter. 

Hannelie’s uncommon chordoma story

After about 5 hours in theatre, the anesthesiologist popped out to me telling me that: “they are now turning Ampie around.” By then I knew he will be okay.

After the operation the orthopedic surgeon popped his head around the door having a big smile on his face and looked like a little boy who just received the biggest gift in the world, showing both thumbs up. Hubby’s stay in hospital however, was longer than what we expected. He picked up a bacterial infection. Due to the removal of the Chordoma, coccyx and vertebrae, he also experienced loss of movement and is therefore now wheelchair bound.

Not only did we have to deal with cancer and the chordoma, we had to deal with the loss of his bowel and bladder movement as well. That in itself, was challenging. No one is prepared to deal with one of those challenges, let alone all three of them at once.

Ampie remained positive throughout this period, his faith in God and the good in people never squandered. God had given me “cancer-shoes” to wear (size 13) because I am literally hubby’s feet, and He had sent angels along this road to share their wings with me. The wings of knowledge, wisdom, patience, strength (just enough) and calmness (especially calmness). At times I was so thankful for the calmness God gave to me, because without “calmness,” “strength” would have let me down seriously … lol.



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