this is my hickman line. it runs up my neck (underneath my skin) and directly into my superior vena cava. this allows my nurses to withdraw blood from me at will. it also is how i get chemo and blood transfusions into my system. if they tried to transfuse chemo through a regular vein, say in my arm, it would eat the vein and the surrounding tissue away in minutes. when i sleep, i constantly have to adjust it because it ends up under my armpits (in fact, i just woke up and had to blog about that very fact). now i know how women with big breasts feel.

======

[Rhys:]

I don't expect my Hickman lines to last for long

Never fool myself that my lines will stay in

Being used to infections I anticipate it

But all the same I hate it, wouldn't you?

======

[Chorus:]

[Rhys:] So what happens now?

[All:] Another Hickman in another place

[Rhys:] So what happens now?

[All:] Take you down to the ops room place

[Rhys:] Where am I going to?

[All:] Your going to theatre

[Rhys:] Where am I going to?

======

[Rhys:]

Time and time again I've said that I don't care

That I've no immunity, that I'll smile through and through

But every time it matters all my words desert me

So any bug can infect me, and they do

======

[Chorus:]

[Rhys:] So what happens now?

[All:] Another Hickman in another place

[Rhys:] So what happens now?

[All:] Take you down to the ops room place

[Rhys:] Where am I going to?

[All:] Your going to theatre

[Rhys:] Where am I going to?

======

[Rhys:]

Call in three months time and I'll be fine, I know

Well maybe not that fine, but I'll survive anyhow

I won't recall the names and places of each sad occasion

But that's no consolation here and now.

======

[Chorus:]

[Rhys:] So what happens now?

[All:] Another Hickman in another place

[Rhys:] So what happens now?

[All:] Take you down to the ops room place

[Rhys:] Where am I going to?

[All:] Your going to theatre

[Rhys:] Where am I going to?

======

[All:] To the loo

]]> http://treatingrhys.wordpress.com/?p=71 Fri, 20 Jun 2008 08:04:20 +0000 treatingrhys http://treatingrhys.wordpress.com/?p=71 Rhys had another scan yesterday (Thursday) to check on how the fungal infection was going. We’re still waiting to hear from the consultant about this properly. We do know that it wasn’t causing his temperatures.

So because of this and his line infection, last night between 6:45pm and just after 9 Rhys went down to theatre and had his Hickman line removed, a cannula inserted into his hand on one side of his body and a peripheral line inserted near his ankle on the other side. As you can imagine he’s not at all happy about this.

Its proving awkward to move around and do things with the drips attached and so Tracey and Rhys had a bit of a rough night.

He is on his third batch of treatment for his A.L.L. OK there are others who have had to have multiple batches of treatment so this he's not rare in that respect.

He has had total body radiotherapy this time around as well as having cranial radiotherapy during the second round of treatment. Again the protocol for relapse treatment calls for cranial radiotherapy in some cases and total body irradiation is part of getting ready for a transplant.

He has neurofibromatosis. This is what makes him a rare case as there are not many cases of this that crop up in the UK or worldwide and in Bristol's experience he's it.

But he's not satisfied with that apparently. No sirry Bob.

As you know Rhys hasn't been 100% over the last couple of weeks.

First he had a CT scan which showed that he had a fungal infection.

Then he had a camera down his throat and some other tests which revealed that he had mild graft versus host disease.

Now it appears that he has an infection in his Hickman line.

The doctor looking after him said that one or two infections is normal but three, not normal.

Typical of Rhys, can't do anything the easy simple way. Has to do it the awkward way.

At least they are treating the infections so hopefully we'll have these licked soon so that he's able to eat those bacon sarnies soon.

]]> http://treatingrhys.wordpress.com/?p=56 Sat, 31 May 2008 07:50:44 +0000 treatingrhys http://treatingrhys.wordpress.com/?p=56 Just thought I'd give you idea of how much medication Rhys is on at the moment in addition to the saline and morphine drips he's constantly attached to.

This morning he had 7 syringe loads of medicine and 3 syringe loads to flush all this down his nasal tube.

Then he was also hooked up to his Ciclosporin again this morning and a syringe of medicine was added to this.

Finally before he was hooked up to the Ciclosporin another syringe was put into the line to flush it.

The size of the syringes varied from 5 ml to 10 ml, the majority being 10ml. The Ciclosporin is 50ml in itself.

So to put it into perspective its about half a can of coca cola of medicine and flush.

And that's not the last he'll have today!

Think about whenever you've had to have medicine and imagine having to drink a coke can of it each day. Complete respect to Rhys and all the others on the BMT unit who are having to do that each and every day.

At least he's having those through his nasal tube and Hickman Line because I don't think even a bag full of sugar would help all that medicine go down.

9:35 and the first of the marrow hits Rhys’ Hickman line and goes into him.

The bag is 785ml in size.

Lots of monitoring of blood pressure, temperature and pulse rate by Rhys' nurse Jackie.

First, my Hickman line was reinstalled. It is a silicon tube placed into one of my major blood vessels leading to my heart. It is used for giving treatment directly into a vein for my chemotherapy, administration of intravenous fluids, for my blood transfusion and for taking blood samples. The benefit of this thing is that it will save me the discomfort of having needles repeatedly inserted into my veins. I hate needles really. Grrrrrrrrrrrrrr.

The procedure actually started with a lot of x-rays in my neck and chest. When the vein has been identified, the line was then fitted. The procedure lasted for less than 30 minutes. Of course, it was done with a local anaesthetic and some intravenous sedatives. The line actually enters a vein in my neck (my collar bone) and exits from my upper chest. It was inserted through a tunnel in my skin. There were tingling sensations and pinches of pain during the procedure. It was very uncomfortable and I got four stitches after the incision. Keeping my "dangling line" in place is a stitch placed around the catheter. I was told that the stitch will remain there until the normal tissues has grown enough to hold the line naturally. Also, I was informed that there's a small cuff in the tunnel which supports the tube.

I had four chemo sessions already using the reinstalled line. And as expected I was wasted, nauseous and exhausted. The day after my second chemo I've spiked a fever and was given a liquid paracetamol. When I woke up the next day, my temp went down from 101.2 to 98.5. Thank God.

Just a while ago, I was told that my "precious" Hickman line is due for flushing and cleaning with saline and heparin anytime this week so as to prevent it from being blocked by blood clots and also to avoid contamination. The nurse also told me that they will teach me how to clean it so that I can do the cleaning when I go home. Yahoo!

My oncologist told me that this "thing hanging on my chest" will now become my constant companion and best friend and I better give it a name so that our "bonding" will become more personal. Okay then, so from now on, my hickman line will be called "Hickie". Ha ha ha.

I'm still up for more chemo sessions the coming days and I'm praying and keeping my faith that God will continuously show His face upon me and that He will help me get pass through it. Bless God!

!!!