After riding the Hodgkins bus, the end of treatment can be challenging as I am finding out. As I reflect on the profound physical and emotional assaults to which I have been subjected to - the feeling is surreal. It does not feel like it happened to me. I have developed a mask that I put on in order to hide some of my real feelings, particularly from unwittingly insensitive or unhelpful remarks. For instance, I have learned to smile when someone says cheerily, "You look really well" when I am actually feeling terrible. Many people think that cancer is like other illnesses where once treatment is complete the disease is cured and you are better. Surprise, surprise, cancer is infinitely more complex than that simplistic analysis. The end of treatment is the beginning of something else. It is a rebuilding process that requires management and direction. Just to put it lightly, I am still reflecting on what I have been through and trying to put everything in its rightful place in my personal life autobiography or history.
Wait a minute.... allow me to say this again. When you finish treatment this cancer roller coaster is never over. Trust me.... Remember I have mentioned how these first few months post-treatment have been a time of change for me. Its not so much getting back to normal but trying to find out what my own normal is and re-defining that can be quite an insurmountable task. Even though my life has new meaning and I do look at things differently, I understand that things can keep changing during this recovery process. I often experience mixed emotions and lately, I discovered that my own expectations and reality often collide. Sometimes I feel disappointed and frustrated when I am unable to meet my own physical or emotional expectations. During that time, I feel isolated as though I do not belong. While I do feel hope, gratitude and relief that I finished treatment and feel much better than before, I have days when I feel apprehensive, cautious and uncertain about the future. I am always wondering whether this cancer is gone or if it will return. Living with uncertainty is the most difficult aspect of living with the aftermath of cancer.
Because I am looking better (whatever that means) I have noted that people around me often do not recognize the struggle I am experiencing, sometimes pain and despair; let alone the adjusting and recovering that I need to heal and regain my energy and my whole being. Some people expect me to return to normal before I am ready but some do understand (what is normal anyway? I keep asking). These days, I like saying that I am selfish. I put myself first! I listen to my body and give priority to taking care of my physical and mental health. I do pay attention to what I am capable of, including avoiding activities that are too much for me. I set my own pace as I rigorously plan for a gradual return to my former self. Thank God I have been blessed with an amazing job where I am treated with utmost compassion and care and I enjoy the flexibility of being able to work from home when I am not feeling well. I do feel incredibly supported and for that I am eternally grateful.
Last week, despite all the gym toning and exercise, I had been feeling really fatigued and lacked the vigor necessary to manage minimal daily tasks. Just that frightening place where the old certainties and norms are gone and I seemingly keep pandering to look at the world afresh. I took two days off to rest and still did not feel better. Instead, I developed a fever which I ignored at first until I noticed a painful swelling on my left jaw- the exact same sport where the tumour suckers were. I have a lump the size of a marble on my lower jaw and aaarrgggh!! it hurts. I immediately called my chemo oncologist and got a voice message that he was away until next week. Then, I called my radiation oncologist who asked me to go in and see him immediately. He was not sure what was going on. He prescribed antibiotics for seven days and ordered blood work to rule out any infection. Why do I keep forgetting that chemo knocked down my immune system? By Friday the swelling appeared bigger and my left ear is very sore. Am I scared? Absolutely! Am I panicking? Absolutely not! I am calling this one a challenge not a crisis. Hopefully, the antibiotic will take care of this bump in the ride and the morphine is handling the pain. There, the emotional and physical part of Hodgkins recovery continues. A luta Continua! (Portuguese phrase meaning "the struggle continues").
Like a good sport, I will therefore continue to share the ups and downs. So, the odd updates like this one will continue. Here is the thing, while I would love to pop the champagne lets keep it on the ice until this news is confirmed by the blood work results and visible reduced swelling if it is just an infection. Rest assured, it is not all doom and gloom because there are times when I wake up feeling better than I did the day before. In my new normal, I am solely focusing on the principle of one day at a time understanding that the recovery process may be slow and gradual. So, I will continue holding onto faith, believing that change will come whenever that is. Meantime, I continue to live with intention and purpose, play with abandon, laugh more from the belly, appreciate all my family and friends and most of all live as if this is all there is. All in all, I recognize and am comforted that I am part of something greater than myself.
Until next time, do take time to pamper and be good to yourself.
and Bliss...
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