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.



Time heals all wounds

Found myself very dehydrated again on Wedesday last week.  Went to the oncology centre for my second last radiation treatment.  My last treatment was not quite a celebration.  On the way home I said to my boyfriend I think I need to be in hospital.  He was not thrilled by the idea but knew I was right.

I was a wreck.  I could not stand for more than a minute at a time.   I was pale and had no energy.  Still not being able to eat or drink anything.  Hadn’t done either in days as nothing stays down.  Something sets off a gag reflex and I just bring anything up, filled with mucous.

So I was admitted on Wedneday afternoon by my oncologist. It is now a week later and am still here in hospital.  Yes, I spent Christmas in hospital.  And it’s not nearly as much fun as you think.

It turns out my system had not recovered from the chemo from a week before and my white blood count was extremely low.  I was isolated in a private ward with all people having to mask up Etc before entering.

My blood count is now acceptable but still dealing with the food and drink issue.

This is where doctors don’t listen.  When I say I can’t eat or drink, I mean I can’t eat or drink.  It’s not me not wanting to do either.  It is a matter of life or death.  Their solution is to have a meal replacement shake and they keep pushing me to drink these – when I can’t even drink water.

The little water I can sip must be no more that 2ml at a time.  And the chances are I’m going to gag and throw it up and a lot of mucous.

Everyone pushing me to eat and drink. But very difficult trying to explain to people I can’t.  At some point yesterday I was convinced that maybe I had a disorder or sorts.  A mind over matter issue.  You know when you body goes on guard to protect you and perhaps I can’t eat or drink as all my body remembers is gagging and throwing up – which is very tiring when you doing it all day long.

So I did quite a bit of research last night.  Searched gagging reflex and how to improve it etc.  Nothing seemed to identify with my symptoms though.  I thought perhaps I had some form of dysphagia.  Perhaps I needed to see my ENT specialist.

The reality though is that I can’t eat or drink.  And I have a HUGE amount of mucous I’m spitting out all the time.    So where is the problem and why can no one help.

I have to live with the mucous for now.  It comes with the territory and will go away on its own in time.  How long nobody knows.  I’ve heard weeks to years so let’s hope mine is weeks.

Today has been better.  I have been able to take in small amounts of food and drink today.  Not enough to survive off of but definitely and improvement.  My dietician popped in to see me this morning and apparently she had a chat to her husband who is also a surgeon.  His comment was that there is no fix.  Everything is swollen and inflamed and this is why I cannot digest anything.  Time heals all wounds.  And I think he is right.

My arms are black and blue from the various drip locations.  Collapsed veins not fun dealing with.  My feet are not much different with them taking blood samples daily from them.

I have been better today so I hope I am now finally on a recovery course.  I honestly never thought this treatment would be so hard.  And this coming from a strong determined woman who deals with anything in her stride.  It is HARD.

And not only on me but also those close to me.  We had a great Christmas planned and a well needed break with friends and family after a hard year.  Our plans had to change  and our expectations altered.

I hope I will not see in the New Year from my hospital bed.  I hope to be laying on a blanket under the stars at our beautiful home in SWAZILAND taking in the fresh air and remembering what’s important in life.


Riding the Wave

I have written this post in my head for about 3 days now.  It has also had 3 different titles.

The first was “Pearls of Wisdom“, hoping I could impart some form of advice for other’s with throat cancer.

I deliberated much about this.  But quickly realised that I have no advice to give.

When I started this blog, it was my intent to do a day by day journal of my journey starting with discovery to finalising treatment. I did loads of research, read many many articles and many forums.  I thought I had it all figured out and I knew what to expect.

The reality has been that my experience has been totally different to what I expected.  In every way and the reality that getting up each day has been a challenge, and there is no way I had the strength or energy to maintain this blog either.

There were those who worked through their treatment and I am pretty resilient and self motivated and thought I could do this too.  The reality is the treatment has pretty much had me bed ridden for the last 4 weeks.

There are those who are able to eat, even if they liquidise everything.  I have not been able to eat for weeks, living off nothing more that water, juice and tea.  I have NO appetite and no desire to eat whatsoever. I had to see a dietician who stressed the importance of eating (something I had no clue about previously I thought with a hint of sarcasm).  She insisted I tried these meal replacement high protein shakes (I absolutely hate them BTW).  It comes in small bottles and if I can drink 3 or 4 of those a day she would be happy.  Well they sat in my cupboard for a week and about 4 days ago I felt low enough to think she may be right and this is what I needed to get my strength back.  So I tried one.   First sip was okay.  Okay enough for me to try another.  I took another and the thought occurred to me that perhaps I should have listened to her and I actually could get through a few of these each day.  Then I had a third sip……  Which had me reaching for my puke bowl.  The shake did nothing more than gongeal all the slime and mucos in my mouth into one horrible mess.  I opened my mouth and started peeling the pink coloured goo from my mouth into the bowl.  Then came the gag reflex and this brought up everything I had managed to drink all morning.  And that was the end of me trying high protein shakes.  So I still live off of liquids.  Its not like its forever. Ive lost about 15kg, weight I had to lose anyway.  Im sure it will all pile on back once I get my apetite back.

My throat has not been too sore.  A little scratchy since yesterday.  For some unknown reason the mucositus is calming down.  A welcome relief.  Perhaps without the mucos I will be able to take in more and I have noticed I am drinking more in the last 24 hours.

No, I have no pearls of wisdom for anyone.  We are all different and we have to figure it out for ourselves.  Just know it is hard work.

The second title was “Death by 1000 Blades”.  For this is what my treatment has felt like.  Each day being a real challenge.  Not just a mental one but a physical one.  Getting to go to the loo and spotting myself in the mirror, noticing that I looked like a woman 10 years older than a month before.  Skin hanging everywhere.  My neck looking like a sundried tomato from the radiation treatment.  The nausea and accepting that the best way to treat it is with supositories. The tiredness which I can’t overcome.

I woke up ealier this week and said to my boyfriend we needed to talk.  He asked what’s up.  I told him I can’t do this anymore.  I wanted to give up on my treatment.  I had no quality of life anymore.  I am done.  I needed to start repairing myself and suffer the consequences and hope that the treatment to date had done enough.  His reply was I don’t get to chose this time.  There is more than just my life at stake here.   There are many others who care greatly about me, including himself and my kids.  And they needed me and I had to give it my best shot and continuing with the treatment was the best shot I had at getting rid of this horrid disease.  So I do it.  I suck it up each day and take whats coming to me.  The treatment for throat cancer is apparently the worst treatment course there is by the way.  I didnt realist it before but now fully understand why.

And this brings me to the actual title “Riding the Wave“.  For this is the only way to get through this.  Its to accept and learn to give in.  And perhaps that is a little pearl of wisom on its own.  I accept that I had chemo yesterday (my last  by the way) and I’ll feel good today from the steroids they pump into my veins with the poison.  But I know tonight and for the next 3 days I will be bed ridden.  Feeling like crap.  Not wanting to do anything but sleep and perhaps throw up.  But this time I have learnt to accept it and not fight it.  It is what it is.

A distant friend died yesterday after finding out he had cancer only 2 weeks ago.  I reminder of how lucky I am.  I have met so many people with cancer in the last 2 months and my heart goes out to them all.  It is a horrible disease.  And they need to put a lot more money into research and finding a cure.  Fuck HIV – learn to use a condom FFS.  When you have cured cancer, then worry about HIV.  (Sorry if that offends some)

I could not have gotten through the last six weks without by boyfriend. He has been with me every step of they way.  It was a battle of wills at first with me questioning every decision he made without me in our jointly run company.  Not because I didnt trust him, but because I wanted to feel vital and like I could add value.  Then realising I can’t. I am too sick.

He has been my pillar of strengh.  Handing me my puke / spit bowl and a roll of toilet paper before having a conversation with me.  Knowing I need to get rid of the slime in my mouth before I can talk.  Then leaning over and kissing me on the lips and telling me he loves me and still thinks I am the most beautiful woman in the world.  Bringing me fresh juice when I havent touched the last glass because he knows it tastses better fresh.  Bringing me another cup of tea to replace the unfinished one next to my bed.  Then reminding me to drink it 5 times else it will get too cold.  And by the 6th reminder it is indeed too cold. Holding my hair up while I throw up in the basin.  Sitting with me on the floor of the bathroom.  Holding me in the shower so I dont colapse.  Faithfully putting the magic R1 and R2 creams on my neck daily.  And not once complained and has always had a smile on his face.  I can only hope each and every one of you has someone like this by your side.

The last 6 weeks have been challenging.  Not only because of my treatment, but business as well.  But you know what.  It is what it is.  The sun will still come up tomorrow.

I am finished with Chemo and have 4 radiation treatments left.  Is it a reason for celebration?  Honestly I am in no mood for celebrating.  The next few days will be hard.  But then I need to muster up all my strength and start repairing myself.  ANd it’s going to be hard work too.  But at least today will be better than yesterday and for now that is all I can ask for.


Auditioning for Ghostbusters

I am halfway through my treatment today. 

I have another 2 chemo Sessions and 15 radiation sessions left. So here’s an update about how I feel.

Last chemo Session was Wednesday last week.   I know I feel off on a Thursday and Friday.   Then by Saturday evening I start feeling good again.

However I had a sudden loss of appetite.  As in I am not in the least bit hungry. and had no food for 4 days.  

This topped by having a HUGE amount of mucosa in my mouth.  To the extent that before I can talk to you I need to have a spitting session into a glass first.  It’s horrible.   It’s thick like slime.  I could audition for a part as one of the ghosts in Ghostbusters – no special effects required.

So the combination of me not eating and the mucosa had me at the doctors on Monday and I was hospitalised. I am here for at least another 2 nights 

I have been diagnosed with Mucositus and dehydration.   I’ll put a link to Mucositus on the Useful Links page of this blog.  

I am under care of a dietician. My aim is to be able to consume 125ml of soft food every 2 hours.  Protein shakes preferable.

I cannot eat anything solid anymore.  The food just sits in my mouth.  Doesn’t quite make it down the digestion tract.  So soups, jellies, yoghurt etc are my meal of choice at the moment.

Besides the mucosa and nausea I’m doing OK.   

Have realised that it’s VERY IMPORTANT to have someone by your side through all this. 

On Top of the World ….Oh wait

So here I am, 7 terminator sessions in and 2 Chemo sessions.

The first Chemo session went fairly well.  No harsh side effects.  A little nausea. A little tired.  But I was still able to function.  I was eating like a horse – couldnt eat enough.  2 Breakfasts being the norm.

I sat in the Oncologists’s room just before my second session telling her how great I feel.  I was on top of the world.  Is this all it was about I asked.  I was told that the chemo wasnt too bad and it wouldnt get too much worse.  I felt quite upbeat about it all and finally was finding some strength to deal with it all.

Then I had my second session.

Realised at my session that I had lost alomost 3kg’s in the week.  Not that I’m complaning.  Losing weight while eating like a pig – what could be better.

Went out for dinner with some friends that night and realised I couldnt stand for more than 2 minutes without wanting to pass out.  Yes, the Chemo has lowered my blood pressure.  And as I usually have low blood pressure, it was making me feel weak.

Then the following 3 days being what I had dreaded.

  • Rapid weight loss – think I’ve lost just over 4,5kg’s in total (10 days)
  • Low blood pressure
  • Fatigue – I’m tired but don’t want to sleep.  I just can’t get up and do anything
  • Loss of appetite – forcing myself to eat.  I have no desire to eat but am forcing myself as I know I need the energy.
  • Loss of Focus – I can’t focus on anything.  I have a passing interest only in things.
  • Preggy brain – Lost half my vocabulary
  • Nausea – Not too drastic but it is there.  Being taking to anti-nausea pills failthfully but it doesnt make much difference.

All I want to do it lay on the bed.

I don’t want to talk to anyone.  I don’t want to see anyone.

I’m not down, I’m not depressed.  But everything I do requries a HUGE amount of effort.  Will I be spending the next 5 weeks like this?



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.


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.

And so it begins …..

Saw the Oncologist briefly before my treatment started.  Not much to say really.  Think I’ve satisfied all my questions thanks to Google. 

Now sitting it a very comfy recliner with a drip in my hand.  Bored to death.  My boyfriend sitting besides me but not quite the place you can have a conversation in. 

Wondered why I can’t have my nails done while sitting here.  Seems like a waste of my time just sitting here.   3-4 hours they say.

Have been warned about nausea and tiredness after. Have a cocktail of bags in the tray next to me to be fed into my veins.  Not quite the cocktail I had in mind. 

Bright side is I only have 6 of these treatments left.

Haveng my first radiation treatment after this.  

Sigh!  The things I could be doing …..