Hi Mozz, I don't post much these days as I am 5 years post treatment. I can relate to the problems you are experiencing as mine were very similar. The main reason they don't tell you much about the side effects is because they are vastly different for each patient. As we are all different so the reactions are different, thye can only give us advice in general terms. I also had severe oral thrush and still get it on a regular basis. This is due to having compromised saliva, some days almost none. I will have to take Fluconazole at least twice a week for ever or until it affects my liver. I was also very tired for months after treatment and then due to a diligent doctor we discovered my magnesium level was dangerously low, took supplements and it helped although I still have bouts of low levels. Some things will improve over time and others may never return to normal. Even after five years my taste is still very much hit and miss, might have something to do with the fact that partof my tongue is actually from my forearm. Even after all this time some days are a struggle particularly when everyone else is enjoying those foods I can no longer eat, such as fresh sandwiches. I have learnt to adapt some things and there are a few softer foods that I love so enjoy those. When going anywhere that you are asked to contribute food, I take what I can eat and everyone is happy with that. I haven't had a can of soft drink since the cancer first appeared as the bubbles now hurt my tongue, funny sensation. This is a good thing as it helps me keep my weight in check. Let people around you know that sometimes you need a break from all the well wishing and positive reinforcement, those that really care will understand. I have told those closest to me that I do not want to here the saying "but you are still here". I have lost some very dear friends and family to this disease and sometimes it hurts when someone says this throw away line. Most of all be true to yourself, be in this fight for you and remember to put you first sometimes. Life will never be the same and you will learn to adjust to your new life in time. All the best and may you also be with around to celebrate five years post treatment.
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