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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The Terminator

So I finally had my first radiation session last week Wednesday.  It was fairly uneventful having to lie there for 15 minutes while the machine buzzes around me.

My father-in-law has aptly named the machine “The Terinator”- and I suppose that is exacty what it is.  It is in fact what kills the cancer.

terminator

I was supposed to have a session on Thursdy and Friday as well but due to equipment failure, I was only able to have the next session on Monday.

I am now 7 sessions in.  I can definitely feel a difference in my throat.  It is little tender and I feel like I have a few swollen glands.  23 Sesions to go.  It is going to be hard.

I am starting to fear the terminator.  I manage to put a big smile on my face as I walk into the chamber, but I know this is what is going to cause me much pain in the weeks to come.

It is fight I need to psych myself up for.  One which I am struggling with at the moment.

The Final Countdown

My treatment starts tomorrow.  Still can’t believe I have cancer!

I’ve had to look in the mirror a few times and actually tell myself I have it.

Why!  Why me!  How did I get it?  I can ask a thousand questions but none of them will help.  So reality sets in.   And I have to deal with it.

I have my special cream ready  R1 and R2.  R1 I apply directly after the radiation treatment each day – it is a cooling gel.  I let that soak in for 20 minutes then I apply R2- a sort of moisturising cream which I apply a few times a day.

r1r2-cream

My first radiation treatment was supposed to start at 7.10am tomorrow and the chemo treatment at 9.  I received a call from the scheduling lady today asking for the radiation treatment to be delayed to 3.15pm.  So I have resheduled the chemo treatment to 11.45.

Was looking forward to a relaxed romantic dinner with my boyfriend tonight.  He was going to cook for me and we were to share a bottle of wine.  (I would have just had a sip!) But sadly other priorities came up and the mood is not right. So it is a night which is not so relaxed and I feel I just want to sit down and cry.

Tomorrow is another day.  I have no doubt I will have my treatment and all will be fine in the universe.  I will live to tell the tale.  And hey, it will be one less treatment I will need to have.

So to all of you – have a glass of wine tonight in my honour and keep me in your throughts.

 

 

 

Darling, Do I have spinach in my teeth?

The last week has seen me asking this question many times.

I keep feeling like I have something stuck inbetween my teeth but food is never the cuprit.  The culprit rather is the many stitches I still have.  They are starting to disolve and  I am more aware of them now that my mouth isnt as swollen anymore.

It is a little strange having stitches in places where no teeth were removed (front 6 upper and lower) but apparently it is all part of how they take your mouth apart to remove teeth.

I had another dental appointment today.  This time with the dental hygienist.  She gave my 12 original teeth a good cleaning and doesnt need to see me again until the end of the second week of my treatment.

They all seem happy with my recovery.

I still have a big bruise on the left side of my face – probably 4cm in size.  Swelling is minimal and discomfort is minimal.  Blew out a lot of blood yesterday from my sinuses.  Assume left over from the procedure 2 weeks ago. I finally have my smile back (and my dimples my beloved loves so much).  I can still feel some pulling if I excercise my mouth.

And finally I can open my mouth wide again.  This has required me being more disciplined when I eat as I am not allowed to use my back teeth at all.  I may only use my front teeth and palatte to eat.  But the reality is that the wider you can open your mouth, the more food you put in.  And it is difficult not using your back teeth when you have a mouth full off food.

Meal slection has not been that bad actualy and I have found foods that I like which need very little chewing:

My current diet consists of:

  • Poitjie (A South African favourite – like a stew) –  I can mush it all up
  • Rice
  • Potato – Mashed
  • Weetabix
  • Yogurt – I just love full fat yogurt with honey
  • Ice-cream
  • Salmon – My boyfriend makes the most amazing salmon with cottage cheese
  • Mild curry – meat shredded and the rest mushed with a fork
  • Custard
  • Omelette
  • Soups
  • Little puddings
  • And my favourite today – I managed to nibble on a soft hot cross bun

So yes, I am recovering well.  A week to go before I start my treatment.