Back to Boarding School

Yesterday I came for a check up with my neurologist as I have just not been coping with my steady decline with my health,  My talking, swallowing, smiling & so on have been getting worse almost on a daily basis - even after my plasmaphoresis exchange a month ago, & starting on prednisone 2 weeks ago.

She is not happy with how quickly I have gone down, & after consulting with a professor of neurology, it has been decided that I get readmitted into St Augustine's hospital in Durban (an hour away from my darling husband), & begin treatment.  We have always had a joke that I am "looking for attention" when I end up going down or coming back to hospital - it sometimes helps to make light of the situation & to not take life too seriously.  For surely it is better to smile, laugh & let your problems roll off you, that to let them control your life?

Initially they thought they were going to perform cyclophosphamide infusions monthly - this is a mild type of chemo & makes you feel rotten.  Another terrible side effect is the fact that I cannot fall pregnant whilst having this, & that is a scary thought.  As husband keeps reminding me, "he is not getting any younger".  In my opinion he is still a sexy man!  We know that God will bless us with children when it is our time, but it still an awful thought knowing that we would have to wait for even longer to add to our Hunter clan.  Currently we have our 2 furry children - Suki & Jun'ko - who we spoil rotten & are like our own children.

Our beautiful cats

But let me get back to my current treatment...

I was DREADING having chemo.  I have had it before, & although the results are amazing, it makes me feel rotten & I vomit for days afterwards.  You can't keep anything down so weight loss is another pro, but it is not worth the nausea that comes with it.  So many people have been praying for me since I heard, & I knew that God would pull me through it safely.  But I also know that I do need some kind of miracle to lift me out of this slump, so I would go through chemo if that was what I needed.

BUT, God is good!

I arrived in hospital, got checked in & settled into my bed.  I was prepared for anything!  I even had my chemo survival kit - consisting of my Bible, coke, ginger biscuits, peppermints & dark chocolate.  These have always helped me through the previous ones, & were also suggested by a very special snowflake friend of mine (thanks Jojo).  Plus when I finally found a coke with my name on it, I took it as a sign that I needed to buy it!

Chemo Survival Pack

My doctor came to see me just after I was admitted & told me that after discussing me with Prof, they have decided to not go with the Cyclophosphamide but rather try Solumedrol.  I have never had it before, but  apparently results are good.  My doctor told me it is a very strong type of cortisone, so I will have this every day for the next 5 days as well as adding an extra 2 tablets to my current medicines - so  now I will be taking 60mg Mestinon 4 times a day, & 250mg CellCept twice a day.  I am a bit upset about the CellCept as I have only recently gone off that, & falling pregnant on the CellCept is not really advised - there is an increase in the number of miscarriages & birth defects with mothers on CellCept.  But I have faith & am trusting that all will be fine with us.  They think I will have to be on the CellCept for the rest of my life, along with the Mestinon.

The nurses came to put up my drip, & straight away my veins ran away!  I think the moment they hear that I am back in hospital they decide to hide away...  It is awful.  I know it's coming & I warn the nurses, but they have to battle through in order to set up a drip so I can start my treatment.  First poke - the vein just disappeared.  They had it, it was beautiful & showing nicely; but the moment the needle went in it just disappeared never to be seen again!  Second poke - the vein was big & strong after having the tourniquet being tightly wound around my arm, as well as the nurse squeezing to lift it.  Another nurse came & tried to stick in the needle, & straight away my vein blew.  It hurt like hell!  I know I am a wimp, but I started crying straight away.  My arm is now wonderfully bruised, slightly swollen & bleeding!  The poor nurse at this stage said she was nervous & would rather phone someone from the Trauma unit to come & put it in as they deal with troublesome veins on a daily basis.  Third poke - and it is in!  After plenty of time looking at my veins & trying to find the best one, they found a beautiful one in my right hand.  It went in first time & I think I may have even done my little happy dance.

Drip is in!

They have started my Solumedrol infusion & so far I haven't experienced any side effects, besides a positively awful taste in my mouth.  They have given me something for an upset tummy & nausea as apparently this is quite common.  The sleeping & relaxing in a bed is already making me feel better, but I am quite upset that I am away from home for another 5 days - I miss my husband, my cats & my own bed.  But I am grateful that I can come to hospital & that there is something that will help me & make me feel better.  And I am grateful it is only for 5 days & not for a couple of weeks or anything as extreme as that.  I also feel terribly bad about having to take more time off work - I was off for 2 weeks last month, & now another couple of days this time around.  I am not a sickly person usually, so I think they do understand that I am not putting this on, nor do I enjoy spending more time at my boarding school (aka hospital).

I am praying that this will be my last hospital visit for a while so our lives can start going back to normal.  This is not a pleasant thing to go through, & sometimes it does get me quite down.  I am trying hard to stay positive, & keep thinking of my drip as being my very own "Gummy Berry Juice: to give me back my bounce!  That does help.  Also all the support from family, friends, my doctor & the nursing staff here is simply amazing.  This will be the last of my nonsense, &  I promise to stop looking for attention now!