Well as week 2 of radiotherapy draws to a close, our expectations of the side effects Karen is having now and to come, have been met and exceeded and not in a good way. We had been told at the end of last week that week 2 is where the rubber hits the road. The Oncology and Radiology Staff certainly don't sugar coat things and do tell it just like it is. We have joked about Karen's taste going haywire, but that is an understatement. We were under the impression, (our own), that things would just taste different or weird or even have a metallic taste. In reality though, the scenario is not that positive. On Tuesday night, Karen lost her taste completely. No recognition of any flavours at all. So although we joked around at the table having dinner, later Karen was quite distressed and upset that she has no taste. Could you imagine having a mouthful of food and only being able to feel texture, but absolutely no taste. Certainly takes the enjoyment out of eating. Really no incentive to get in and have a meal. She now has to modify her compliment to me. Instead of "thank you for the meal it was delicious" it goes more like, "thank you for preparing the meal". I still am struggling to get my head around this one, especially when food is such a comfort thing for us.
The pain has also increased tenfold this week. The area effected is from the bridge of the nose to the base of the neck. Although there is some tenderness and dryness of the skin around the wound site, the majority of pain is internal. She likens her throat feeling like she is in the middle of the worst cold. Oncology staff said to expect it to get sorer and likened it to having severe sun burn, but on the inside. It is excruciating when she sneezes and on occasions this draws blood. The inside of her mouth now is ulcerated with her teeth and gums being very sore and painful to brush. She has a magnitude of rinses to use every 2 hourly as part of keeping her mouth clean and managing the pain. She takes a liquid mouth wash local anaesthetic 15 minutes before each meal so she is
able to eat as the pain is getting to a point it is too hard to chew and swallow. She takes a soluble panadol every 4 hours and has been told that within the next week or so that be upgraded to morphine as the pain will increase. We also had an appointment with a dietitian today who went through the eats and don't eats. How's this. The first time ever that she has been told to eat as much junk food as she can and not to worry about fruit and vegetables too much and increase fats, cream, ice-cream, cheese. Basically anything to maintain her current weight. In theory it sounds great to get the green light from a health professional to eat all the "no no foods", but the horrible irony of it is that Karen cant taste any of it anyway. So all in all a pretty horrible and emotional day. Not a whole lot to look forward to as things will get worse substantially.
Praise Points
Thank you to a wonderful couple who regularly come and visit with us, chat freely, laugh with us, make us feel normal and pray with us. It means so much to us and we look forward to your visits.
Thank you to the wonderful staff at the RAH who continue to have a smile and a kind word on every visit and with whom nothing is to much trouble.
Thank you for my beautiful and wonderful strong wife who even with all this happening to her continues to laugh and make our family love and laugh.
Thank you to our church family at Klemzig Community Chapel. We are so blessed that God has directed our paths to this wonderful congregation. Thank you for the tangible and not so tangible help and encouragement and prayers you guys have given freely.
Thank you to Dad and Mum. For Dad who is doing a solo effort back in QLD while Mum helps us out in all the day to day stuff.
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