Just with any other chronic disease, I have my good and bad days. During my good days, I'll feel energetic, the itchiness will not be as bad and I look perfectly normal in the eyes of others.
However, when things aren't too good, it doesn't matter how much rest I have, I'll still feel lethargic, my neck aches, and my itchiness flares up.
The frustrating thing is that I can't dictate my good and bad days. There is certainly no clear pattern to it. I can't safely say that if I eat the wrong food, my itchiness will flare up more, or that I will have a good day if I sleep well the night before.
My family are certainly trying to adapt to my circumstances. Plans laid out for the day may have to be cancelled or postponed if I don't feel up to it. We'd understandably not go out as often as in the past and spend more time at home. This is when having an understanding family is pivotal, where each of them acknowledges the unpredictable nature of the disease and thus compromises on a lot of things.
One of our family trip during my good day
The lovely thing about having a supportive family is that you know each and everyone of them wants to play a part in helping.
Mom is certainly making big adjustments to her daily cookings, paying extra attention to how much salt and sugar she uses, opting for olive oils most of the time, and cutting off on foods that are 'cancer-feeding'. Diet certainly has its own part in preventing or causing a cancer, so it certainly does not do harm to be more particular with what we eat especially nowadays, where additives and preservatives are found in so many of the foods and drinks we consume.
Dad and my siblings are certainly training themselves into becoming excellent masseur and masseuse with me being their regular customer. Body massages help to slightly relieve my itchiness and neck pain, as well as relaxing any tense muscles. I am not sure whether they enjoy having to do it on a daily basis, sometimes more than once within a day, but they certainly never complained.
My medical case has been reviewed by the clinicians in HUKM and they have stated their opinion on my condition. And they believe that there is still one treatment possible which could cure the condition, but one that poses a lot of significant risks along with it, and one that even they admit only carries a very, very low percentage of success.
We therefore feel that our main focus at the present moment is certainly on alternative treatments, with hospital treatment possibly being an adjuvant therapy to help relieve my symptoms.
The battle will keep on going, insya Allah. Pray for us.