A blog about my journey and experiences with Adenoid Cystic Carcinoma

SURGERY / GETTING RID OF IT



DAY 1

The day of surgery I felt a little apprehensive but was in good spirits for the most part. I am very easily knocked out by any type of pain or anxiety medication so when I was given the pre-anesthesia relaxant I already started to drift away.

The surgery took about four hours and when I woke up I immediately started sobbing from the pain.


A nurse put a little device in my hand and told me to push the button when the pain got too bad. I have heard many people talk about the wonders of morphine but unfortunately I wasn't carried away to the land of soft, fluffy clouds and rainbows. No instead I was convinced that the button the nurse gave me was broken. I tried holding it in, giving it short repetitive squeezes but nothing seemed to help.

I remember seeing my family at the side of my bed that first night in the ICU but I was too swollen to talk so instead I settled on giving them urgent looks. I am sure that must have been quite disturbing, sorry guys.

A few hours later the worst of the pain subsided and a nurse brought me a small container with soapy water and asked that I wash myself. I tried to wash off the copious amount of betadine but got tired very quickly, not to mention how restricted I felt with all the tubes and drips in me. I had a central line that was used for the morphine, apparently it lets the morphine work even quicker (I still have my doubts), another drip in my arm, a drainage tube in my neck and then all the stickers stuck to my chest measuring my vital signs and one on my finger.

For the first two days I couldn't speak at all and could only communicate by writing in a little notebook, this was made difficult because I had extreme blurred vision. The doctor said this was caused by all the pain medication I was given. What was truly difficult for me was not knowing what time it was. I couldn't read the clock on the wall on account of the blurred vision and didn't have a watch. Not knowing how long until the sun will come up or how long to the next visiting hour was pure torture.

DAY 2

On the first night they gave me a suction tube that I could use myself because I was to swollen to swallow. It worked great until the second night by which time I started to feel very anxious because it felt like I was drowning in my saliva and couldn't breathe properly. I couldn't ask for help or explain what I was experiencing so instead I started rubbing my hands together obsessively. One of the nurses who saw that I was in distress came over several times in an effort to calm me down and assure me that my vitals were normal and that I wasn't dying. This went on for several more hours and seeing that I wasn't improving even after aggressive suctioning attempts from myself and the nurse, my surgeon was called in. In the early hours of the morning my surgeon and anesthesiologist arrived and there was talk of intubating me.

The thing that I really appreciate about my surgeon is that even after being called out of bed he still had the patience to explain to me my options before just intubating me and getting it over with. He explained that if they intubated, my recovery would be much slower and I would be in hospital for longer. He wanted to keep that as a last resort. Instead he suggested using the intubation device (Laryngoscope) to look down my throat to enable him to suction the fluid out more effectively and see if that helps. I agreed with a nod and we started the process. The amount of slimy fluid that was sucked from the back of my throat surprised everyone. After this was done my surgeon asked that the portable x-ray machine be brought in, in order for him to see if I had any fluid in my lungs. It was the first time I was able to breathe properly for hours and I was utterly exhausted. I even fell asleep on the cold metal sheet while they were taking the x-ray.

DAY 3

I am glad to say that after that night things started to improve. I was allowed to sit on a chair next to my bed and on that third day I started talking. My speech was extremely slurred but at least I was able to communicate again. The pressing issue now was my inability to swallow.

My surgeon told me before the surgery that I would be in hospital for only three or four days. Here I was on day three not even able to swallow my own saliva and still in the ICU. It was on this day that I started to refuse any pain medication and insisting on sitting in the chair before the physician in charge of my care came to see me. I wanted to show him that I was almost able to be discharged.

DAY 4

Finally moved out of the ICU and into the high care unit. This is where the nurse came and removed the horribly uncomfortable drainage pipe from my neck. I still can't understand why such an inflexible, hard plastic was used. I was very surprised when more that 10 centimeters of pipe was extracted from the hole in my neck (no wonder it was so uncomfortable!). I was also allowed to take a shower by myself. The shower however lasted 30 seconds before I got lightheaded and had to call for assistance.

DAY 5

I was moved to the general ward, still unable to swallow but very insistent on going home. By this time I felt more like a prisoner than a patient and the physician refused to acknowledge the progress I have made and was very adamant that I was not ready to go home yet.

DAY 6

I was on a clear fluid diet consisting of clear chicken soup, litchi juice (which burned my throat) and jelly. I preferred drinking Powerade or flavoured water for some electrolytes and energy. The jelly and juice provided really irritated and burned my throat.

DAY 7

I was finally discharged. I was able to swallow a few sips of soup now, but still breaking out into a coughing fit after each one. I can't explain how incredibly grateful I was when I walked out of those hospital doors. That hospital symbolized suffering and death and all I wanted was to get as far away from it as possible. I walked out of that hospital a very different person that the one that went in. The deep emotional trauma I went through can not be explained in words and even if they could I do not think I would want to share it with others. I am by no means implying that I am a lesser person now, only that when something like this happens your worldview is bound to change.

/ PROCEDURES


Procedures performed on me as obtained from my surgeon:
  • Radical Neck Dissection
  • Surgical repair of mandible
  • Surgical excision of tumours of the jaw
  • Excision of salivary gland
  • Glossectomy - partial
  • Excision of sublinglual salivary gland
  • Alveolar ridge augmentation - three across three
  • Excision of tumour of the soft tissue
  • Surgical removal of three teeth
  • Sequestrectomy - intra oral per sextant

*In addition to the above mentioned procedures my left tonsil was also removed as well as the nerve providing the left side of my tongue with feeling.