One year later

One of the most important things I can say about the recovery process after radiation is that it isn't linear. It works more in cycles. Just when I thought things were finally looking up some of my old symptoms would creep back up. One of the worst symptoms for me was an intense earache on my affected side, which made it very uncomfortable for me to eat and speak. Now that I am 5 months post-radiation my earache is something of the past.

Another important thing to remember is that it takes an extremely long time for the symptoms to completely disappear. After about two months, I had no more blisters and I could distinguish between most tastes. I then thought fine this is probably as good as it is going to get. I became quite depressed because of all of the 'permanent' damage I experienced. I had an extremely stiff jaw, the trismus was so bad that I could not even fit two fingers in my mouth. I also had quite a severe speech impediment and my neck was very stiff from the fibrosis.

I did daily jaw exercises, which was so painful at times that involuntary tears would run down my face. I had to admit however that after the exercises I did experience some relief from the stiffness and discomfort for a few hours. I think if you can afford it a therabite device it could be very beneficial, but I experimented with regular household items to see what I could use to stretch my jaw. I usually made use of different size marker caps to see how far I could open my mouth. Not only did I experience pain in my jaw when I exercised but my tongue muscle also pulled quite badly.

I have regained more than a centimeter of movement and I am positive that I will continue to see improvement. The fibrosis in my neck is still a problem but I massage my neck twice daily with Vitamin E oil and even though the tissue still feels very hard I am experiencing an improvement in stiffness and range of motion. My first language is Afrikaaans which means that we use quite a hard 'R' when speaking. My 'R' is not quite there yet, I am struggling to make the vibrating sound necessary. Many online resources had me convinced however that I should not expect much improvement after 6 months post-surgery which is definitely not the case. I think the only time when you will stop seeing improvement in you symptoms is when you stop striving to improve.

Three years later

Let me start by listing my persisting symptoms:

• Numbness in the left half of my tongue were the nerve was removed.
• Stiffness in my neck, but only when I try to look straight up. This is caused by a combination of the radiation fibrosis and the radical neck dissection that I underwent.
• My taste buds have been slightly dulled, especially on the affected left side of my tongue. I am now able to enjoy spicy food that was entirely too hot for me before my surgery.
• My skin is somewhat damaged by the radiation on the left side of my face and appears less elastic and more wrinkled.
• I experience some dry mouth issues but this is limited to specific instances. My xerostomia (dry mouth) is perpetuated by conditions that affect most other individuals too. In high stress situations and just after waking up I experience it the worst.

None of these symptoms have had a significant impact on my life however and I am able to continue the lifestyle I enjoyed before my diagnoses. That is not to say that I have not been adversely impacted by my cancer. The psychological turmoil that it has caused me is still something I struggle with to this day.

For the most part I have stopped fixating on my time in hospital and the severe fear and hopelessness I experienced there. It was a very dark place in my mind that I would continually revisit. On my second night in the ICU I experienced extreme difficulty breathing caused by the swelling and the excessive production of saliva and was almost incubated. This experience traumatized me and I had a recurring dream of suffocating for months.

I am a very vocal person and I have always relied on my ability to clearly communicate my needs to others to get what I want in life. Then suddenly here I was in a hospital bed unable to ask for help or even explain what I was experiencing. I felt stripped of that what made me, me. Then during radiation I was in too much pain to speak and when I did it was with such a severe speech impediment that others had trouble understanding me. I felt isolated. Cancer was redefining who I was and I felt cheated by this unwanted transformation.

I didn’t have the energy or willpower to work through these issues and I existed in a type of limbo of self identity for very long. When I was diagnosed I remember saying to a friend that I refuse to let cancer change me. I didn’t want to be the walking cliché stating that I had this life altering experience and led me to re-assess all my life choices. It is impossible however to remain unchanged through all of it. I have been in survival mode for so long that I have forgotten how it feels to actually enjoy life and have experiences that you take pleasure in instead having to constantly just endure. When I find that switch between survival and living again I will write another update but for now I don’t have any answers. At the very least I have started the search and that in itself is something.

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