What radiotherapy is like

Today, my appointment time was changed.  I agreed to go in the afternoon to suite 7.  I am usually in suite 5.  I had the same radiotherapists, but in a different room.

The scanner looked exactly the same, as in suite 5. 

It is a big circular shape that stands behind a long thin table.  The table is separate from it, and the big circle rises up from the floor.  The circle is solid.  It looks like something out of Doctor Who.  The radiotherapists are the evil creatures who sneak out of the room to zap me while I am not looking. 

The scanner is large and has circular glass panels.  It is nearly ceiling high.  It is a big circle standing one the floor.

There is also a smaller scanner.  At the beginning of radio therapy, it is a circle about 2 feet wide that lies above my head.  I am lying on the table, and my head is screwed to a polyurathane neck mould.  It is an artificial yellow mould that I put my head into at the start of the process.  The radiotherapists than add my "shield" (the mask) and screw it around the mould.  The mould keeps my eyes closed, but I can peak and see the circular scanner above me. 

The radiotherapists then begin measuring everything. 
"93.2"
"Good, move 1.3"
I get shunted.
"94.5"
"Good"

They measure a few different places, and then leave the room.

In suite 5 there is a CD player, so I play by ipod.  We were in the middle of Jazz (Queen), Fat Bottom Girls, I think.  However, in suite 7 there is no CD player.  This means that I listen to the scanner.

What I can see through my eye lids is blue flashing light.  The small scanner has moved - it is to my left hand side.  The radiotherapists have left the room.  The scanner sounds like a spirograph.  Imagine someone is drawing a circular pattern, with a blue lazer pen, using the plastic circle and outer shape.  The sound of someone doing this really fast.  This is the sound of the scanner.  The pattern is what I imagine is being projected into my brain.  The aim is to stop the tumour from growing. 

The scanner stops, and then it starts again, from another angle.  I think a different sized circle is being used, and the pen goes round really fast, and all the teeth grind to make a high pitched sound.

Three different scans occur like this.  Then the radiotherapists return, and I am rotated 90 degrees or so, and re-measured for other scans.  More scans continue.  If there really was a pen, there are at least two spaces on my scalp that would be painted blue. 

These are the parts of my skull that are really sore.  It does feel like a burn, and I think I am at the early stages of hair loss - just the odd few hairs are dropping out here and there.

And then a radiotherapist appears and says "all done" and unclips my mask. 

I always say thank you, which they find funny.  I can't imagine what their job is like, scanning people like me all day.  It must be hard going.

We all wish each other a good weekend.

Katy makes a juice

Good morning

It is starting to get lighter much later now.  Dawn is around 5.45 am.  I don't hear the birds singing, like I did in early August.  I am unsure if that is that they don't sing, or if it is because I have my windows closed.  Katy's asthma is kicking off, which means that Autumn is starting - her asthma is always at its worst as summer changes into the next season.  It then settles down into a mild irritant as winter progresses.

 

Busy morning

Every day, I have arranged for Martha and Katy to play with a friend, while I go to the hospital.  Yesterday, Mum driving, we pick up Martha at 9am from her friend Sasha's (after a sleepover), and take both girls to Charlie's to play, so that I can get to a 10.30 appointment at Christie's. 

 

Before we go, I make Katy pancakes, as part of her sleepover with me.  I give her one in bed, which she really enjoys.  I don't make it out for my walk - there is not enough time this morning. 

 

So, the girls are playing at Charlie's.  I go to the hospital.  I have not eaten anything - I have only drunk water.  I have my pills in my bag, so that I get my drugs correct. 

 

Today, I plan to put all my drugs in a dispenser to see if this helps me to keep on top of them.  I have also programmed my phone to give me reminders.

 

My appointment is late

When at Christies, we are told that the scanner is 30 minutes behind schedule.  I have to wait, and it turns out that I am sent in before the person with the 10.10 appointment. 

 

Poorly afternoon

Returning from Christies, I feel really nauseous again.  I take the anti-sickness pills and wait for them to work.  At home, I make and eat lunch, hoping this will push away the nausea, but I still feel sick.  I lie down and hope it passes, and basically doze for a couple of hours.  My mum goes to collect the girls from Charlie's.  My mum is waiting to head home to Bristol for the weekend.

 

Martha melts down

Martha and Katy are going to stay with Dave's mum, today until Wednesday.  Martha does not want to go, because she wants to stay here with me.  I know that when she gets there, she will have a good time.  However, Martha is very upset and crying that she doesn't want to go.  Why should she go?  Why can't she stay here with me?  I don't want her to go, either, but have to be firm that this is the best of our ideas, and we talk about using the phone to talk.

 

If I could drive, I could visit them.  I can get the train over there, but I would not risk moving away from my support team over here.  The district nurse visited today, and I can see how I need their support as I move through the treatment programme.

 

Sasha drops by

While  Martha is upset, her friend Sasha comes over with her bike and pj bottoms.  Martha will not get up to see her, and I tell Sasha, and Anna and Jon, that Martha is very upset about going away.  They understand very well.  Sasha returns a little later with a dark chocolate macaroon, as a gift for Martha.  It is so thoughtful.  Martha accepts the visit and the gift, and enjoys the macaroon.  She loves dark chocolate.  Thank you Sasha.

 

Katy makes a smoothy

I am starting to function much better.  I had made the girl's a lasagne.  My mum had polished of three portions, and Martha and Katy ate all of the rest.  Eaten with sugar snap peas, I am happy that they are both eating well. 

 

Katy makes her first juice.

 

Katy making a carrot and apple juice.  She is really enjoying using the juicer.

 

Love Film
I signed up for a free trial with love film, mainly so that Martha can pick up instant films on her Kindle Fire HD.  I have got it working through my lap top, but failed to get it to work through the kindle.  Over the last few days, I have spent a long time on help lines to Love Film and Amazon, trying to sort this out.  We have cancelled accounts, discovered that Dave's visa card is logged in to Martha's account, I have changed the name of my account to Martha, so I am answering all calls in her name etc etc.  I still haven't got it going, and am very frustrated, because Martha would have used this service at Joan's.  The good news is that my free trial is now two months long, but if I don't get it working, then it is no trial at all... 

At the end of the day, I am feeling much better.  Martha and Katy are packed for their trip away and watching The Smurfs on love film (on lap top) in my bed.  Katy has the pleasure of sleeping in her own bed tonight, because Grandma has gone home.  Martha wants to come and sleep with me, so when I settle down (after a call with Amazon that does not yield Love Film on the Kindle), I go and get her to come and join me in my bed.

My appointment time has been changed
Today, my morning appointment has been moved to the afternoon.  This is good, because it means that I can have breakfast.  I am hoping that I will not suffer from nausea in the same way, after my appointment.  Let's wait and see...  Last time to eat before 1330 appointment will be 0930.  My morning will look like this:  porage and cup of tea, drink water, get girls out of bed and dressed, give girls breakfast, be ready for Dave to collect at 8am, go for a walk, have second breakfast, set up replacement amazon account (for me); order dehydrator, sort out pills in dispenser tray, get ready to go for appointment on the tram ...  I will need a sleep late morning, too.

Love you all
Have a good day
Sarah xxx