Sunday, 22 June 2014

One year since diagnosis


A year had passed since I was diagnosed.
 
Questions for occupational health:
  • What would they recommend for my return to work?  How many hours/days?
  • How do they "phase" people back into work?
  • What happens if I fall ill?
  • If I go back to work too soon, what are the consequences of this? eg if I continue to need to sleep in the day?
My condition:
  • general stiffness
  • pain at base of spine (painkillers don't help)
  • sleep in the day, and when children sleep
  • ongoing pain around site of operation
  • memory has been affected
  • grade 3 tumour (8cm remains)
  • tumour is stable


Treatment:
  • chemotherapy ended  March 2014
  • next MRI scan (head)   9 July 2014
  • MRI scan (spine)          28 June 2014
  • Last scan (head)           31 March 2014
  • See consultant              16 July 
  • Macmillan nurse           24 June
  • physiotherapy  
  • Salford Royal                 September
My recovery:
  • walking
  • physiotherapy
  • pilates
  • diet
  •          

Wednesday, 2 April 2014

Good News

My consultant tells me that my scan shows no change.  My remaining tumour is not growing.  This is the best news that I could ask for.  Apparently I have a gap in my head, which makes me laugh; there is a gap from where the tumour was removed at the end of June, last year.

The news is:

  • Next scan will take place in July, with feedback a week before I go on holiday.  I think this is good timing.
  • Future scans will be six monthly, and then dropping to annually.
  • I have permission to swim.  I can't wait to get in a pool - I know swimming will be really good for me.
  • My consultant hopes that my stiffness will pass, as I start to recover from the chemotherapy.  I have continued to suffer with pain, when I am sitting down.  It always tickles me that I do not suffer pain when I am walking, but have intense pain when I am sitting down.  
  • She recommends that I see my occupational therapist to discuss my return to work.  I am amazed that she can remember that I saw one before I was diagnosed - very impressive!  Her prediction is it will take me a few months to recover from the last nine months of treatment.  This sounds good to me.  (I don't know if I wrote about my occupational therapist, before now - I met her in May/June last year, and her report stated that she did not think that I was depressed, and recommended that I had an MRI scan.  I was unable to read when the letter came, and Dave read it; it convinced him that he had to campaign to get me a scan - which lead to my diagnosis.)
  • We talked about my memory; I declined any treatment.  Google calendar works well for me, and other electronic gizmos help me.  I have had to change the way I operate, but on the whole it is working.  
That's  it for now.  I am very relieved with the results.  Genuinely I don't worry before the appointment, but now that I have good results, I am delighted!

Thanks for all your help, so far
lots of love
Sarah xxx

Tuesday, 1 April 2014

Spring in Sale Water park

Really sorry - I will have to upload photos tomorrow.  Lap top is on a go slow!
I have extended my morning walk to include Sale Water Park.  Those of you who live here will know that you can cross the River Mersey and emerge (submerge?) into the Water Park.  My route is to walk along the brook to where the brook meets the Mersey, and continue along the Mersey to the tram bridge.  Cross the river here, and then return along the side of Sale Water Park, eventually crossing the Mersey at Jackson's boat.  Return home, any route.  I have taken pictures of Spring today, but cannot upload them onto the BLOG.  I also tried to record the birdsong, but my phone's memory was full.  Another day!


My appointment with my consultant is tomorrow. 


lots of love
Sarah xxx

Monday, 31 March 2014

Back again!

I had an MRI scan today.  I can only share what it is like, not what the results are.  At my appointment with my consultant, on Wednesday, I am hoping to get the results.


What is it like?


Through a small door at the back of a waiting room, I am left in a curtained cubicle to remove any metallic objects.  There is a locker for me to leave all my belongings.  The appointment is early; my half eaten sandwich is left in the locker too.  In the adjacent room, I am asked to sit in what appears to be a comfortable chair, but the design ensures that I feel like I am going to slide down and out of it, forwards, onto the floor.  I always think of Gavin's baby chair and Nigel's hospital chair (both designed at uni), when I am using my legs (that can only just reach the floor) to retain my position.  It is a chair with a high back, and squishy arms:  "Rest your arm there", says my nurse, whose name I have already forgotten.
I am given a canula: this is a needle, inserted into a vein inside my elbow. I look away, the whole time, with my left hand across my eyes, "I always hate this", I tell the nurse.  The canula is sellotaped to my arm, and has a long tube leading to a syringe.  The nurse injects some saline fluid to check that it is working correctly.  I have not looked, and I cannot feel anything.  This is good.
In the waiting room, I wish that I had brought my book with me.  The key to the locker has been taken by the nurse, so I can't go and get it.  Reading the October edition of WOMAN, I learn that leather skirts have been "in fashion" through the winter. 
Into the scanning room.  I lay on a thin bed, and put my head in a cradle.  This is not like the radiotherapy - I do not have a mask.  They place large earphones over my ears, and put a case over my head.  The case has a periscope that allows you to see out of the back of the scanner.  The bed slides into a thin dark tube.  The music blasts my ears: it starts with the LAs, "There she goes", which I like, but all the subsequent tunes were cheesy pop and quite unbearable, especially in succession.  Every now and again, the music is interrupted by something that I know to be the nurse telling me that it will be 5 minutes of the next batch of treatment, except that I cannot hear what I am being told.  Back to the cheesy pop ...
The scan sounds like really loud banging.  Each phase has a different tone, and/or a different rate of pulse.  I feel like I have been put into a tube, and then shaken around for about three hours.  It is actually about twenty minutes.   During the scan, a nurse inserted a dye through the canula; again, I felt nothing.  When I was eventually slipped out of the tube, I am not sure which is worse - the banging and shaking, or the cheesy pop music!
Back to the waiting room, for another magazine.  I can't remember what it was called, but it was full of horrific stories e.g. one was about a woman who discovered that her husband was a serial killer.  I still have the canula in my arm.  After twenty minutes, this was removed in the same clinic and slide-forward chair.  "You are free to go".


Thanks for all your good luck messages. 
Lots of love to you all
Sarah xxx

Thursday, 13 March 2014

"logging out for a few days" - back soon

All going ok.


Key dates:  31 March - MRI scan
                     3 April   - appointment with consultant


Have a good time
lots of love
Sarah xxx

Feeling much better!

Might go for a celebratory cup of cocoa later!


Have a good day
love
Sarah xxx

Wednesday, 12 March 2014

Still sickly, but doing ok.

Hoping it will pass, today.  S xxx

Monday, 10 March 2014

chemo day 5

I made it to school with packed lunches for both Martha and Katy.  Nausea at dawn, and various stages of the day, but I have overcome it.


I received my next scan date - Monday 31st March.


Sleep now
love
Sarah xxx

Sunday, 9 March 2014

chemo day 4

Day 3 was quite a good day.  Day 4 was hard going!


A beautiful sunny day, with some warmth in the air, I took some time to sit in the garden.  Mostly, I slept or helped with homework.


I have had a good vomit today!  It can't be avoided.  Only one more day of pills to go...


love to you
Sarah xxx

Friday, 7 March 2014

chemo day 2

Pouring with rain, this morning, I was nearly deterred from my morning walk.  Based on the prediction of the weatherman, by the end of my walk, it was sunny and blue.  Spring is here.  Daffodils cluster on the river bank, the buds are reaching into small leaves, the stinging nettles have started growing.  My crab apple tree has a thin coat of green.


My Macmillan nurse was ill, so I was happy to go straight back to bed.  Two hours pass, I have small lunch, and go back to bed again!  I struggled to get to school on time, to pick up Katy.  Martha has gone on a sleepover tonight.


Some bad stomach cramps have made me feel poorly.  They have occurred on and off, all day. 


Back to sleep again!
lots of love
Sarah xxx



Thursday, 6 March 2014

Chemo day 1

I continue to feel very weary.  I got up at 6am for ondansetron (anti-sickness), and at 7am for chemotherapy pills. 


At 9am, an electrician was due to come and give me a quote for the shower fuse, and he came early; he arrived in the middle of my egg Florentine, which left me later with an unbroken egg and a cold breakfast.  The good news is that he will do his best to investigate the problem, and (hopefully) fix it.


I go straight back to bed and sleep most of the morning.  I go for a medium length walk, and sleep in front TV in the afternoon.


Evening ondansetron was remembered late, so I now have to wait a bit before taking metoclopramide (anti-sickness) and senna (laxative).


Day one out of five is nearly over.  I want it to pass quickly!


lots of love
Sarah xxx



Wednesday, 5 March 2014

Hospital appointment

With a lift to the hospital, I was there close to 9am.  Blood taken by a nurse, I sit on the "green chairs" to await my appointment.  The usual pattern of the morning repeats itself: have appointment with doctor, wait on the green chairs for confirmation that my blood tests are ok, go to pharmacy to "collect" prescription, be told to return in 45 mins to an hour.  I do not leave the hospital until after 12.15 pm.


My news:
  • scan in a few weeks, and then in three months;
  • return in a month for check up and scan results;
  • advised to go to complementary therapy on an evening once a week, for massage or acupuncture;
  • I must not start running, until my stiffness and pain has reduced.  Pilates, cycling and swimming are good activities (low impact).  Swimming in a few weeks, once my low immunity phase has passed.
I am very tired.  I slept in the afternoon.  Parents' evening tonight - all good. 


love to you
Sarah xxx


Tuesday, 4 March 2014

Chemo starts tomorrow

Sorry for the long delay - I had no phone and no lap top.  My phone is now fully functioning, and I am still getting used to my computer.


I wrote my BLOG last night, and lost it!  Tomorrow brings my appointment with consultant, and my giant prescription of pills.  I start taking them on Thursday.  My mum will arrive on Friday and if I follow my usual chemo pattern, I will decline into overwhelming nausea from that point onwards.  This is my sixth month of chemo, out of six.  I can't wait for it to be behind me! 


My consultant will tell me tomorrow, what will happen next.  My questions are:
  • acupuncture trial - can I go on waiting list?
  • pay in  Martha's fundraising money,
  • ask for results of last blood test,
  • what happens next?
Gotta go to bed
Love you all
Sarah xxx

Friday, 21 February 2014

Temporary phone and no laptop

Hi there, I am using Martha's lap top, which I am starting to get the hang of.  I can't get the hang of my temporary mobile phone.  I have gone from key board to predictive texting, and it takes me too long to write a text.  I also do not have any phone numbers.  Come back old phone!  If you receive a text from me, do not be offended if it is very brief!

Healthwise, I remain tired and in need of regular sleep.  Ed and Mary are visiting, and we took the girls to the "elephant pool" (Manchester Aquatics Centre).  It is my week of low immunity, so I chose not to wait in the pool for them, and Ed and I went to eat.  I became so tired, that I had to go and sleep in Ed's car, in the car park.

Wishing you a good week.  I head to Bristol, tomorrow, for my Mum's 70th.

lots of love
Sarah xxx

Sunday, 16 February 2014

I.T. crash! No phone and no lap top!

On the mend :)  I have shaken off the nausea and started eating properly again.  Sleep remains a priority.  My mum took me to Aldi (big day out!).

My phone (which was already seriously "under the weather"), has gone barking mad!  It jumps about like someone else is using it.  The screen changes from the welcome page, to someone's address, to music download etc.  It is scarily fast, and scary to see.  For a few moments this morning, I managed to copy all my data onto my lap top.   Phew!

Short lived relief!  My laptop has now conked out.  As I am writing this, I am tensely wondering if my Blackberry has infected my computer.  I could not access the internet, and my screen said it was a problem with Norton.  Martha's laptop takes me to Norton help line number.  An hour long call later (which was free), I discover that the phone operator (in India) is not from Norton, but ESURE, and after a thorough diagnosis of my computer, I have loads of things wrong with it.  Earlier in our friendly conversation (which included me sharing that I had a brain tumour), I thought that they were Norton and they were going to fix it; now, I have been given a large bill by ESURE.  I declined of course.  Mildy satisfied to have a printed diagnosis of computer ailments, I am also really annoyed that I have wasted my time.  My computer is currently dead.  I couldn't even open microsoft word.  I do know someone who can help me.

I am dependent on Martha's computer, for now.  Do not text me or use my mobile number.  Use my email address and home phone number.  Thanks loads.

Time for bed
Good night and have a good week ahead
love you all
Sarah xxx

Saturday, 15 February 2014

End of chemo

Hi there,
I am still feeling poorly, but looking forward to the nausea lifting.  I haven't done anything except sleep, and see Martha and Katy leave to stay with family.  I took the last dose of chemo yesterday, but its effect always lingers.

Hoping everything will be good tomorrow (for you and me).
Bonne Nuit
Sarah xxx

Friday, 14 February 2014

chemo day 4

From Louise's 40th :)


 
These are fallen trees

These are fallen trees after the storm.  I have lost tiles from the roof of my house, too.  The trees are on my (currently shorter) meadow walk.
 


I have started being sick again.  Being optimistic, I was hoping to avoid it, but the nausea continues to overwhelm me.

Have a good day :)
lots of love
Sarah xxx

Tuesday, 11 February 2014

Shirley Temple

Shirley Temple has died, aged 85.

Feeling OK.  I have spent most of the day asleep, but no real nausea yet.  Loads of anti-nausea pills instead!!!

Have a good week
lots of love
Sarah xxx