Today at 7am Robyn had a cannula put in her hand and the IL2 started not long after.  This was followed an hour later by the ch14:18 Antibody.  Things were fine for a few hours and I was feeling confident enough that she was coping without any major problems but come the afternoon things went down hill.

 

One of the biggest problems that Robyn has to deal with is access.  She only has a single lumen port and this week of the anitbodies requires more access than Robyn’s little ol’ port allows.  Even last week when she only had the IL2 infusion for 4 days an IV had to be put in situ ‘just in case’.

 

Robyn complained of pain when Benedryl was been given to her this afternoon and for a few minutes there was a concern that the IV wasn’t working properly and would therefore need to be changed.  She hates this and so I hate this.    An IV nurse came and had a really good look and it was decided that the stinging and burning pain that Robyn had felt was more than likely the Benedryl as this often happens when this drug is infused.  Phew!!

 

This is where the ‘downhill’ bit comes in….  Massively sick 3 times,  aching all over, blurred vision (caused by the anti-sickness), sore throat, constant thirst, tummy pain,  itching, red blotches over face and neck and generally feeling really rubbish.  All of the above can be usually be sorted by tweaking the medication and this is so well managed.   The worst of all this?  Robyn’s hallucinations and nightmares caused by the morphine.  She was feeling so poorly and the Benedryl, Morphine, Gabapentin and the other medication (can never pronounce it’s name) that is an antihistamine with an appetite stimulating side effect all make her so sleepy but every time she slept she woke screaming.  Then, in between these bouts of disturbed sleep, she would be having what appeared to be a lucid conversation with me until I would notice that she’d said something odd and I would then realise that she wasn’t fully awake and coherent. 

 

So it’s been a horrible day.  I never expected this to be any better to be honest so I don’t know why I’m so surprised!  I am so upset though as I don’t feel I can watch her suffer anymore.  This week she actually started to look stronger, was eating fairly well and had even taken a few untidy, staggering steps forward – ON HER OWN!  She had given up her crutches for Lent and even though physio often means tears of frustration and pain, she is quite clearly proud of her own progress.

 

Today I saw a very down and negative little girl who was blaming herself for being ill, saying that she wished she had never been born and telling me that she was very unlucky.  She was so dreadfully upset and I don’t think her state of mind was helped by the medication she is taking today.  She said she just wanted to be normal.  She said she was ‘on her own’, that she had such little hair and that it wasn’t growing fast enough and that all she wanted to do was to go to school, play with her cousins and get a dog to take for walks :-)
Now, I don’t know about the dog but the rest of it isn’t too much to ask is it?

 

Well,  that’s day one of week two of the horrible mix of drugs and I have to say that it’s been dreadful in spots.  I try to write an update every night when we are it hospital for this treatment (last week I didn’t as the 4 day infusion of IL2 was so uneventful) but I am so tired and drained by today and how distressed Robyn has been I’m actually finding it hard.  The nurses have been absolutely great as has the lovely doctor. 

 

So,  it’s been a rotten day but every time a new nurse comes in Robyn reaches over to the top drawer of her bed side cabinet and pulls out her stickers.  She then proceeds to put a tiny sticker over the face part of the photo on the nurses security badge.  This could be a sticker of Mickey Mouse or a pig or even a piece of cake.  Very strange behaviour… especially when she said to the nurse “Would you be so kind as to lower your badge please?”.  I was giggling too much to correct her bold behaviour!  You see? devil of a sense of humour,  mixed with a large amount of morphine…

 

It is now 1am and the bad dreams and hallucinations have only just stopped.  I am shattered.  Tomorrow’s another day and we have Bernie to look forward too on Saturday :-)    (well, it will give me a break…)

 

There are so many people to thank that I think I am going to dedicate one day’s blogging as a ‘Thank you’ blog.  Please, please if I haven’t acknowledged something that you or someone you know has done to raise money for Robyn, understand that we are in awe of the wonderful ways people have helped.  Everyday I think that if it wasn’t for you and you and you! (imagine me pointing here!)  we wouldn’t be here.

 

Right,  I am off to bed to dream about roast potatoes.  American people do not know about roast potatoes and they are soo missing out on decent bacon.  Would love to introduce them to Waitrose bacon, maybe the maple syrup or oak smoked kind…. ummmm…

 

Here’s hoping tomorrow will be better for that beautiful little girl of ours.
Love lisaxxx