Just Giving

Just Giving
Please donate to my just giving site by clicking on the picture. Many lives can be saved thanks to your generosity.

Handing Over The Cheque

Handing Over The Cheque
Persis, S. O'Carroll, Me, Nettie, Rachael, Zoe, Sarah


My brother, the poser

Saturday, January 29, 2011


Hello Everybody,
I hope all of you are okay.
I have not been blogging for a few days because as I said in my previous blog I am not feeling too well. I have a horrible cold and had to go to the hospital the other day because I felt so unwell. They took cultures peripherally (which means by putting a needle into my vein and extracting blood from there). I don't like my portacath accessed unless it absolutely  has to be, because sometimes it hurts me or doesn't bleed back and they have to try again.
The doctor at Northwick Park who was seeing to me told us that the blood test had revealed that something had grown in the cultures they did and I would have to go back and have another test done from my port. I don't like it, I just went with it.She told me I could die.
I know that I am more vulnerable than the average child, but i wish people would not tell me that i might die.

I am on pallative care! I'm not stupid ! I know what can happen to me, but i try and put it to the back of my mind. I don't want anyone to tell me that I may die.. I don't want to die.

I feel scared at the thought of it.Just because I am 14 they think I want to know everything. Sometimes I wish people would think before saying these things to me.She could have said that things were serious and there was no other way, I did not say anything to her at the time but I told my dad and my sister when we left that I was scared and I felt very upset.
I expect the hospital to be rude. It's okay because I chose not to move to Watford because it is far and if I do get really sick I want to see my brother and sister's incase they don't make it to Watford before I finally go.I have given this so much thought.
I would like everyone I know to know; that I know that  life is not certain for me,I don't need to be reminded of that. It's so insensitive. I am 14 not 45. I can't face it.
 At Great Ormond St nobody says that i will die if I don't do things. They say do whatever you like. They even agreed to me having a dog even though it is a high risk of extra infection on top of my low immunity.
I am tired of this.
My dad never says anything to them because he says that there is no point reasoning with the unreasonable.Doesn't make it better for me though.
I miss my mum .I want her to come back now.

I will blog again in a day or so.
Devaanshi xx


Anonymous said...

Hey Devaanshi,
It is shocking to read about what's happened. One would expect the staff to be more sensitive and understanding of your feelings. But forget not, you are an inspiration to many. Your strength has kept you and others following your story going. So keep your chin up and I am sure good things will happen.

Take good care of yourself.

Anonymous said...

That is so awful Devaanshi, You seem to have a terrible hospital by the sounds of things. Maybe you should let them know how you feel.
We follow your blog and see you as an inspiration.
Those who are in such a position should not abuse it.
We will pray for you. You are a very brave girl!

Anonymous said...

I am truly flabbergasted that anyone would say such an insensitive thing to you.Particularly knowing what you are going through.
Northwick Park Hospital should be ashamed.
You do seem to be very intelligent.
Are they not aware of your anxieties.
It is very sad that you have to put up with such people.
The doctor should go and do some soul searching in my opinion.
Please stay positive and do not despair.

Anonymous said...

Keep going no matter what. Your life is very precious

Anonymous said...

It is outrageous.You should not have to put up with this from the hospital that is supposed to look after you.
Your parents should put in a complaint.

You are exceptional

Anonymous said...

Hi Devaanshi
Let's look at this as it was meant!! The doc knew you did not want to use your port and in order to get you to do the right thing she told you you could die if you did not do more bloods and get to what those "ugly bugs" were that were growing. We would all die if we did not get to the bottom of the "ugly bugs". You feel poorly and miserable at the moment so you need an injection of positivity!!
A few pills and you will feel much better. Of course you are fed up but look at all you have to look forward to (your Mam coming home, Summer on the way, evenings getting brighter) Banish all those negative thoughts, put on a glitzy diva song and feel the vibe!! You are doing brilliantly and I enjoy your daily blogs. Keep it up. Angela (Caroline's friend)

Anonymous said...

My dear Devaanshi, I am sorry you had to go through that today. People really should give better thought before they speak how much more a doctor. Never mind dear. Your Mum will be back shortly. Keep your mind on the things that make you smile and push all the negative to the back of your mind. You are an inspiration and loved by many. Temmy

Anonymous said...

Hi |Devaanshi
Just read your blog here in Angela's.You are a fantastic young lady and your Mam will be back in 8 days. Remember all the positive things the doctors said to you in Great Ormond Street. They were all positive things.You get good and bad people in all walks of life. 4 years post transplant and you are still with us!!Keep the sunny side out. Talk soon, Caroline (Stefan's Mam)


To all who commented. Thank you.
Im glad you understand. Unfortunately, no matter how many complaints you put in... things never change. So we just learn what to look out for-what to make sure of. I think I could qualify as a nurse/doctor now because I know as much.
I know life brings good and bad, easy and difficult but sometimes I feel older than some of the people I meet.
Sometimes I feel as though I am in a playground.
But...I have come so far and I will carry on going - no one can bring me down!

Me Now!!

Me Now!!
So differentt!