Post treatment update

So here I am 3 months after my treatment.  I have my follow-up PET scan next week and I am nervous as hell.

For the first scan, I knew I had cancer.  It was a matter of finding out where it was. It was pretty routine for me at that point as I was being pocked and prodded daily by some or other specialist.  This scan is a bit more serious for me.  It tells me if the HELL I have gone through has been worth it and will tell me if I am clear or not.

I am reluctant to go for this scan as I’m worried I may not be clear – even if I’m told that the prognosis is very good and I have nothing to worry about.  “Oh and by the way if anything is left we will operate and remove it. ”  I’m told by the Oncologist.  Yeah, I’m not so keen on having parts of the base of my tongue and throat removed.

So what has the last 3 months held for me.

I was in hospital till New Years Eve.  I was very weak when I was discharged and could not walk up 1 step without help.  I could not stand or walk very far and at that point had lost about 22 kg’s.  In fact I could not go to the bathroom without assistance at that point.

Eating was a real problem and I was trying to stay hydrated by having a mix of Supradyn and Rehydrat every day with a few cups of tea.

Towards the end of January I admitted I had an eating disorder. I didn’t know how much of if was real and how much was mental.  So I went to see a swallowing specialist.

She explained that as I have so little saliva, my food cannot make its way down my throat.  Saliva has a huge part to play in getting your food in the right place at the back of your mouth and on your tongue in order to swallow.  So she taught me how to use water (or other liquids) to get my food into the right place and aid in the swallowing process.  This helped me to start eating a little food here and there.

To be honest I still have no appetite and no desire to eat.  It is a daily struggle with me.  I have to force myself to eat or try to eat.  My taste buds are still damaged and everything tastes absolutely awful.  I finally gave in to taking Ensure on a daily basis and make sure I have at least 2 glasses a day.

I had an extremely bad case of oral thrush which was eventually diagnosed as Candida Krusei – one which requires special medication – 7 days of 2 tablets a day at R400 a tablet.  2 Weeks later my tongue is still white.  My Oncologist was concerned about the thrush as it would mask the results of the PET scan and I was told they would not do the scan while I still had thrush.

So I went to see a Periodontist yesterday as a last resort to figure out a way of getting rid of the thrush.  She happily told me that I no longer had thrush. The meds had cleared it up.  What I am now left with is a tongue full of dead cells which need to be cleaned off on a daily basis.  Apparently the radiation kills off a lot of my cells so they are regenerating fast and I need to help the process along by manually exfoliating these dead cells.  She cleaned off what she could and I now once again have a nice pink tongue.  I just need to keep it this way.  I am hoping that it will clear my taste buds as well and encourage them to start working properly again.

I miss eating so much.  I have now lost about 27kg’s.  Thankfully I could afford to lose the weight.  I am obviously much thinner now.  Skin hanging everywhere and I look 10 years older when I look at myself in the mirror.

My energy levels are still very low.  I can walk up about 10 steps unaided.  I am back on site as far as work is concerned but I know I cannot walk very far or stand for long periods.  I do see improvements on a daily basis so I am on the mend.  If I could find a solution to my eating problem, I would be pretty close to normal again.

I lost a lot of hair at the back of my head due to the radiation.  My hair stopped falling out soon after the end of my treatments although it has started falling out again about 3 weeks ago.  I think it too is a case of losing the weaker hair allowing for regrowth (at least I hope so).

I am now counting the minutes to my PET scan.  Anxious as hell and want to get it over and done with.  Hopefully I will get my life back.

Not sure I can go through any of this again.  I just don’t have it in me.  So I am positive!  Life is good and I look forward to a long and fruitful life ahead of me.

 

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9 thoughts on “Post treatment update

  1. I pray that the results are clear. You have to do all the things you can do to rid yourself of this. You have been inreadibly brave and for this we all admire you so much. You are an example to us. The side effects will pass too this is a promise. I have to wait until the 21 April to find out if I need another cycle of chemo This waiting period I’m told is Scanxiety .I had chemo today which is harsh on my red blood cells so no energy. We will get together soon to celebrate the ends of our journeys and be grateful for all that we have and our friends that support us. I send my love to you Lanthie and remain as special as you are.

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  2. Thank you so so much for Sharing Lanthie..been wondering how you were doing. Love your honesty…will help so many. What a journey & thanks so much for sharing it. You are one special lady..a brave, brave walk. I pray your scan will say you are CLEAR. I Pray your taste will return, swallowing ability & good appetite with enjoyment of your food will also return! Strength too!!! We are all rooting for you & here for you. Lots of love, Prayers & thoughts are with you xxx

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