My mask

My trip to the hospital begins with Mum and me taking the correct route.  Much quicker!

Making the mask

We go to the radiology department.  I am taken to have a mask fitted, to the “moulding room”.  In the moulding room a yellow fabric was heated and then held over my face.  The staff cooled the fabric so that it set exactly over my head.  I had a stocking over my hair so that it did not cause the mould to bulge in any way (my thick hair).  The central part of the mask had an open space for my mouth and nose, but I could not speak because my jaw is held shut.  The fabric goes over my eyes.  Many times I have been asked how I feel, because many people find the experience very claustrophobic.  Fortunately, I felt fine. 

Scan

From here, they took me to a scanner.  You can see an image of the scanner in one of the pictures.  I lie on the bed, and my head is in the mask.  The staff then put marks on the mask (I think it looks like a helmet).  These marks are used during radiotherapy to make sure that the x-rays are fired into the exact same place every time. 

I was also given a canula.  Oh, how I am going to have to get used to needles.  I hate it.  I cannot look, and it hurts.  The canula was used to give me dye (spelt correctly, thanks to Max).  A trainee was practicing on me, which I was OK with at the start, but then grew very tired of.  A senior nurse was giving her instructions, and my arm was used for her to learn. 

After the dye, I was then scanned.  This scan was not noisy like the MRI scan.  It sounded more like something was whizzing around the scanner at great speed.  I was moved into the scanner, out a little bit, back a bit more and so on.

It didn’t take very long, which was good.  I then wait 10 minutes before my canula is removed. 

Meeting with radiologist – Charlotte Stockhouse 4468395

·         Steroid doseage may be increased if there is swelling and inflammation.

·         Got to keep active

·         Information given on head scarves, to wear when my hair falls out

·         Consultant Dr McBain will tell me IF cateracts are a potential side effect

·         Treatment start date will be 1/8/13

·         Next appointment is 24/7/13 to “check film”

Radiology

·         10 – 15 mins every week day (I have weekends “off”)

·         The x-ray treatment will only be for 1 – 2 mins within this, every day

·         Meet Dr McBain every Wednesday to review treatment.

·         Info for children available in glass corridor – patient information centre.

·         During treatment, my skin will react to the sunlight.  I need to get a hat.

·         Alison Hope has made a referral for me to have a Macmillan nurse.  Call her to check this.

·         My height 5’6”; my weitght is 82.3 k

Chemotherapy

·         My tumour has the double deletion 1p19q.

·         There are two forms of chemotherapy.  One is injection.  The other is in tablet form.  Dr McBain recommends the latter approach, and said there are less side effects.

·         Tablets will be taken daily at the same time as radiology.

·         Blood will be taken once a week to monitor any changes.

·         I will take anti sickness tablets and antibiotics. ( I need more information on this)

·         I must call Christie hotline  if I have a fever over 37.5 degrees.

·         My chemotherapy is called Temozolomick

·         I have a card that I have to carry to say I am on chemotherapy.

Steroids

·         Dr McBain said there is very little tumour left in my brain.  This is really good news.

·         Stop taking steroids.

·         She will prescribe steroids for me to fly.  I will take them before the flight.

Parking

·         I have a pass to show that I am at radiotherapy.  I still have to pay for parking!

And finally

At the end of this, I am exhausted.  I have been there for 3 hours.  My phone has run out of charge.  When I get home, I text Louise to say don’t come, because I have to go to bed.  I sleep for a while and stay upstairs to keep out of everyone’s way.