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#1 PrincessB

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Posted 01 September 2007 - 11:09 PM

Hi everyone,

It's been a bit of a stressful week. I had a nice time with my dad, but unfortunately I got ill on Sunday with a fever and had to be hospitalised again. Not unusual 8-10 days after chemo apparently. So I was in hospital until Wednesday.

On Thursday morning, they started the stem cell collection. You are connected up to a machine and your blood is run through it and back into your body. I don't know about anyone else, but scleroderma has caused my, already not particularly good, veins to become hard and difficult to get into. So we had a bit of trouble with the very large needle they need to use, and they put in a catheter instead for the next day. It's not a painful process per se to have the cells collected, but you do have to stay for about 4 hours with your arms completely straight and still, which is uncomfortable to say the least! But they managed to get what they needed, and that's the most important thing.

I started to lose my hair on Wednesday. Logically you know it is going to happen, but the reality of standing there with handfuls of it is quite different. So much was falling out that I made the appointment to have it all cut off yesterday. It was horrible, your hair is so much a part of you, but it is the price I have to pay and I have to hold on to the thought that it is worth it and it will grow back eventually. The best that can be said about my wig is that it keeps my head warm!

My mum arrives tomorrow as I was due to go in for 3 weeks from Wednesday, but that has been postponed and I am actually happy to have a break and try and recuperate a bit emotionally. I'll let you know when I'm due to go in for the final push.

Hope everyone's having a good day x
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#2 jefa

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Posted 02 September 2007 - 12:10 AM

Hi, Princess

This must all be a bit overwhelming, but it sounds like you are handling with class. Sorry you had a bit of a setback. I do hope you will be able to enjoy your visit with your mom while you wait. I will keep you all in my thoughts.
Warm wishes,
Jefa

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#3 lizzie

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Posted 02 September 2007 - 03:56 AM

Hi B
I've been wondering how you were doing. Sorry to hear that has not all been plain sailing and really sympathise re the hair loss. I think the vein thing is a problem for most with SSc, the junior doctors and phlebotomists hate us!. Keeping my fingers crossed that the next stage goes well.
X Lizzie

#4 Sheryl

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Posted 02 September 2007 - 05:52 AM

PrincessB, I am glad you were able to spend some time with your father before being hospitalized. Now with your mom there you might even get more rest. Moms like to help out when they can, however they can. I bet you are looking forward to the ending of all this. Keep up your strength and your emotional outlook. I lost about 3 quarters of my hair when I had radio active iodine isotope. I know exactly what you are going through. I had hair well past my waist. Then I cut it to my shoulders. It was so thin I decided to go really short. It has been that way ever since. Did you get a spiked haircut? You sound like you will get through this tremendously. I am cheering for you. We all are, I am sure of it. Please do keep us informed. Sheryl
Strength and Warmth,
Sheryl

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#5 PrincessB

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Posted 02 September 2007 - 07:16 AM

I had it almost shaved off, just like 5mm left or something. There was no point having a style really, it's coming out so fast. Think Britney Spears!
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#6 peanut

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Posted 02 September 2007 - 11:47 AM

You look better than Brittany! You are so brave. We are here for you if you need us.
Thank you for sharing your experience.

Big Hugs,

peanut

You can deprive the body but the soul needs chocolate
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#7 nan

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Posted 02 September 2007 - 03:32 PM

Bless your heart! I really admire your strength. I send good vibes your way. :D
Nan