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. 

  

Feeling better every day

I took no pictures yesterday, so sorry that I have no snaps to share with you. 

My jelly legs are going
My steroid dose was halved a few days ago, and this has no started to have an impact on how I am feeling.  The biggest change is in my jelly legs.  They are now only slightly jelly.  I am now able to walk longer distances.   I have started a walking programme, in that I am walking a distance one day, and extending it the next day.  I am currently walking to the organic wholefood shop and back.  Tomorrow, I am going to the cemetery at the green and back.

I have started cooking

I am starting to enjoy cooking the occasional meal.  I made tea for Jackie and me today - pasta with passata and pesto sauce, blue cheese salad, olives.  Very nice!!

I am taking Martha and Katy to school every day

They love it!  I love it! 

Tomorrow (later, it is dawn and the birds are singing), I am going to watch reception do assembly and catch up with my head teacher.

Great visit from Margi

Margi is Dave's sister in law - his brother's wife, my sister in law.   Margi and I have become good friends over the years.  She is a primary school teacher, and is extremely bright.  Margi loves to cook.  Her cakes are outstanding and her dinners are always memorable.  For Christmas, she loves the challenge of cooking something vegetarian; and I always love her meals.  

Margi came with some lovely gifts too:  elderflower non-alcoholic drink, cakes (all gone already - delicious), and the latest Mark Haddon book, which I look forward to.

My mum gave us a delicious lunch, too.  Margi helped to clear up afterwards, which I know my mum really appreciated. 

Great to see you, and I look forward to next time.

Day time sleep
I still need a sleep at lunchtime.  I had an hour and a half sleep, and felt a lot better afterwards.

Visit by Jackie Brennan

Jackie is an old work friend, and hockey friend.  We worked together in Stockport MBC where Jackie set up Exercise on Prescription.  I was setting up sports clubs at the time (one club was a women's cricket club.  I had no knowledge of cricket, but trained to be a qualified cricket coach.  I set up a club, which continues today with women coaches.)  In hockey. we had a thrilling time playing in the North Premier League.  Jackie is also good friends with Louise Robbins (Martha's guardian (god parent)).  From our times in Stockport, our career paths run in parallel - there is a time when I am senior manager in Sport England and Jackie is a health professional for the regional health authority.  Our other interest is skiing.  We have been on many ski holidays together.  Jackie is currently a regional development manager for cycling.  In her free time, she keeps herself fit - she can run for ever (eg 20 miles), and mountain bikes often.

Jackie brought some pictures from activities that we have enjoyed together in the past.  The first was my parapenting experience.   We decided to book to jump off a mountain and float down on a parachute.  I was terrified by the thought of doing this:  I thought that we would ski down the mountain; fall at a frightening speed; that the parachute would open; I would be pulled upwards, and that I would then float down.  Jackie was hoping for this - she loves adrenalin and wanted the dramatic start to the activity.  My decision was that we would go and complete this activity on our own - I could not cope with any onlookers.

The reality of the experience was that it was a beautiful, gentle and silent event.  I am strapped together with a guide.  We begin to ski down the mountain towards the edge of the cliff, and we lift up.  There is no experience of falling and being "caught".  I go from mountainside, to sheer bliss.  It is the most distilling feeling, to float above the mountains and swoosh down in complete silence.  I arrive, in heaven.   Jackie arrives extremely annoyed because she has had no adrenalin rush.  I know I have pictures of me in the air, and I have resolved to get these framed and show them at home.

The second set of pictures were from our trip to watch our hockey coach, David Haskins, run the New York Marathon.  We had the most amazing time in New York in 1999.  One of the pictures was taken when we were all waiting for David, who arrived, but did not see us - he simply ran straight past us.  In fact, all our attempts to be seen by David failed - he arrived at the end of the race without seeing his support group.  All this aside, our trip to New York was brilliant.  Jackie, Louise, Sarah, Rosemary Leach, Suzanne Glavin and David Haskins. 

The third set of pictures was our millennium celebration.  We had dinner here at Thornbridge Avenue.  The event was called "Kiss in 2k".   My house looks different - the wall paper on the stairs is dark red and orange, the woodwork is dark red.  I have made my own wallpaper, so my middle room walls are decorated with a 2k pattern and 2000 pattern.  The chimney breast had "Kiss Kiss Kiss" printed on it. Around my living room table is my mum, brother Ben and girlfriend (he is 21), Jackie (and her now ex-husband), friend Jo and daughter Ellie, David Haskins.  I still have the stopper from one of many bottles of champagne, and hang it on my Christmas tree every year.  We had a brilliant night together.  My millennium resolution was to give up drinking red wine - a resolution that I have fulfilled.  I love the taste of red wine, but it gave me the most unbearable hangovers.

Jackie and I have a good afternoon together.  We walk together too.  Jackie leaves when it is time for me to enjoy evening routine with Martha and Katy.

Watching the Hunger Games

Martha and Katy and I continue to watch the Hunger Games, in my bed.  The sad thing was that the computer ran out of battery, and somehow ran out of sound at the same time.  We could not get any sound going, so gave up and all went to bed.  Katy became a little upset, but was soothed by me playing with her hair.  She has a head with the same kind of nerve endings, and loves having her hair stroked, just like me.

Have a good day everyone.  I love you .   Sarah xxx