A Typical Week

Getting through a week of trips to Reading and back every morning does take up the half a day and I could not do it without my network of drivers.  I salute you all, for you are truly brilliant, and thanks to my ultra organised best friend, I have spreadsheets, clarity and stimulating conversation every day.  Thank you.

I thought this week I would give you some insight to the process ... and if you read my last blog, you might see the connections with time.  So here is a summary of Week 3 since treatment started.

1.       Seizures:  none

2.       Tummy problems: none

3.       Headaches: none

4.       Steroids:  still speeding.  My entire silhouette is two inches larger; truly, I am becoming the Pilsbury Dough Girl.  I have learned the art of highlight and shading from the nice lady at the Dior counter in Camp Hopson in Newbury in an attempt to reduce the size of my cheeks.

5.       Wine consumption: low, no more than two glasses at a time

6.       Chocolate consumption: high.  I have converted to the dark side of Lindor balls, they're very good.

7.       Motor function on right side: very good

8.       Fog in brain: think it's clear... difficult to tell I am now 43!

9.       General feeling of wellbeing: excellent

10.   Online shopping: put it this way....one store sent me a box of chocolates and discount vouchers for being such a good customer. Out of control.

Every morning, my schedule is the same:

·         0700 - Get up with darling daughter to make sure I eat and drink plenty before 0800.  Hand daughter over to supernanny.

·         0800 - Take steroids, anti-seizure and tummy protecting medicines

·         0810 - Go nil by mouth

·         0830 - Call from mother in Spain

·         0845 - Shower and dress

me strapped down by "shell"

·         0940 - Take anti-constipation medicine

·         1000 - Get collected by superstar

·         1010 - Take chemo medicine en-route...it must be taken 1 hour before the radiotherapy session

·         1110 - Sit and wait for what is generally a late appointment.  Get strapped down onto a bench by a full plastic face mask that is so tight I cannot move a muscle.  Get my head zapped for, ooh, 2 minutes.

·         1200 - Allowed to eat and drink again

·         1230 - Home

I prefer my hospitals to be shiny and new, but sadly the Berkshire Cancer Centre is in the old original Reading hospital and I find it a depressing place to be; full of old wood, lilac paint and fish tanks.  I must say though that the team are fantastic and they clearly enjoy their work and environment, so the rest is just my opinion.

Because I have an opinion, I also have my own rituals for each trip.  I have been complimented many times by the radiographers on my co-ordinating necklace/clothes and make-up which are a must for me.  I will not walk into that waiting room like a victim; I remain Cornish (for now) the professional, not a condition.  But, this week's quote is a peach:

"I love the way you swagger down this corridor, Sarah, you're so full of life"

 Moi?  Swagger? As if.......

Monday, bang on schedule, my hair started to fall out, and true to form has done it quite dramatically.  It spontaneously lifted itself at the root and keeled over whispering "my life, it's such torture".  Honestly, I heard it happen whilst waiting for my radiotherapy; put my hand to my head and got a fistful.  None of that gentle departure of hairs on the pillow for me.  My scalp is effectively sunburned by the radiotherapy and is now sore.  I now officially have less hair than Nearly Husband, and it's very patchy, so I think I will just "rock the bald look" and take it all off when my skin is less sensitive.

As a result, I have been playing around with headscarves, and I am absolutely rubbish at them, I'm much more of a big red hat girl.  Although, I really appreciated number 2 daughter Rebecca's response, which was to advise me to become a dangly earring girl...I like that idea.  I am also going to try my hand at wigs...have to try everything!

The only other side effect I seem to be suffering you may be able to help me with....my hands, nails and cuticles are drying up horribly in the x-rays so if you have any recommendations for intensive oils and unguents, let me have them.  And where do you get those night-time cotton gloves?

I am off to celebrate my birthday for the third time this weekend, with my gaggle of best girlfriends (minus one).  Given that Clare lives on an island in the Caribbean we will miss her, but look out Newbury because Clodagh, Elaine, Emma, Sacha, Sarah and I are all coming to town.  And I can't wait!

Have a great weekend folks!

Thinking about time....

"What very mysterious things days were. Sometimes they fly by, and other times they seem to last forever, yet they are all exactly twenty-four hours. There's quite a lot we don't know about them."
Melanie Benjamin, Alice I Have Been, 2010

Three weeks since my first post and everything has changed. I have been ruminating on the nature of time as a result. One might imagine that a girl with a brain tumour, who is not capable of communicating in her normal fashion in any way, and who is waiting for some aggressive therapy to start might not have very much to do? I don't know where this time has gone, but let me give you an idea of what I have been doing:

1. Spent 2 days in hospital, having CT scan and then having a needle in my head to remove 17ml of unwanted fluid. (looked like cold tea!)
2. Learned the vagaries of my tumour and the relationship with my deteriorating symptoms
3. Had at least 8 lunches with friends and family
4. Called the ambulance out twice - once for AW and once for me
5. Went for three different beauty treatments
6. Made two appointments to see our wedding venue, and made it to one of them
7. Spent two weeks going slowly downhill as the fog in my head thickened, I lost the power of speech, along with the motor function on my right side.
8. Started six weeks of concurrent radiotherapy and chemotherapy - daily trips to the hospital
9. Celebrated my birthday, twice
10. Hosted a brother from Gibraltar, one friend from France and one from Manchester
11. Hit an emotional stone wall twice, both of which ended up with an ambulance, though as above, only once for me.

The worst thing about this period has been the loss of function, the feeling that I'm still here yet unable to be myself, and unable to show myself. Whilst that is happening, it is easy to start asking "why me?" and easy to think that I am becoming a condition, rather than having any control over the situation. I found it unbelievably hard to just sit and wait for treatment to start.....but filling my time with all the above also became hard work. I have personal emails I need to respond to, and to my correspondents I apologise....I became scared of my keyboard, afraid to find out just how long it would take me to write a few words.

A french philosopher called Gracian wrote "All that really belongs to us is time; even he who has nothing else has that."

And if you have nothing but time, if becomes a very precious commodity. Suddenly, I have all the time in the world. I have time to really think about what I want out of my marriage, my home, what I want for my daughter, what I wish for my stepdaughters, and what I want out of the rest of my life. When do you ever have the time to stop and really think about those things? If you knew you had a finite amount of time, what would you consider?

I realised that I don't have a "bucket list" and I don't want to stop my friends and family coming on this journey with me. Why should I? I've taken opportunities, I've seen a bit of the world, and I am finally at the stage in my life where I want to stay home, I want to stop moving and enjoy every moment with my nearly husband and my gorgeous girls.

Time IS my precious commodity, for every moment of every day that I can:
* engage in a conversation without falling over my words, and, more importantly being able to listen and recall the conversation
* feel my hand and chop an onion without fear of losing another finger
* read a book to my daughter
* have a laugh with Nearly Husband
* type or text a message in minutes rather than hours
* make a decision without feeling like I'm sleepwalking in fog

....I am happy

Life for me is not diminishing into a condition, it is expanding into true appreciation for all the relationships I have and all the beautiful people in my life. Time with you all is what is precious. The treatment, the trials and the work to survive....well that's just work and I'm good at that.

So to all my friends and family who are hesitating to call, please don't hesitate. It doesn't matter if you think you won't know what to say, because I'll be interested in you anyway. The worst that will happen is you get my answerphone and an e-mail or text from me in the early hours of the morning when I'm not sleeping.

Time does belong to you, so girls (and boys) take this moment to kiss your husband (wife) properly, tell your boyfriend (girlfriend) how gorgeous (s)he looks, stroke your childrens heads while they sleep and then take 5 full minutes to sit and look around you and think about how good life is. Try 10 minutes. Go on, I dare you. See if you can.