Planning for Martha and Katy ...

Martha and Katy

I have to organise Martha and Katy around my radiotherapy times.  My day will be, that someone will come to collect the girls, then I will go to Christies and return, and girls will be returned to me.  I have a list of Chorlton mums and dads available times, so will be calling to ask for help within the next couple of days.  This is where my summer gets tricky...   Martha and Katy come home from their holiday on 8th August.

Thank you for giving dates to Sarah McCall.  Anyone else who could help, could you send and dates through to me sarahc1208@btinternet.com or to mobile phone.  Thank you so much.

Good night everyone
love
Sarah xxx

A good day at home

My walk is getting longer
I am up with the dawn and the beautiful birdsong, and struggle to get more sleep.  I go for my walk before 8am and make it to Jackson's Boat and back very comfortably.  I am not far off being able to walk my old "short run".  I feel very relaxed when I am walking;  I am gently out of breath, able to think and feeling good about myself.  Those of you from Chorlton will be familiar with these views, but for non-chorltonites, here is a little of what I see en route.  It is a beautiful part of the City.

 This is the bridge across the River Mersey to the Jackson's Boat pub.

Here, I am nearly home.  The bridge at the end goes under the road.  This is the cut, that flows through to the River Mersey.

Back home, I finish breakfast and then head back to bed for a sleep.  I am woken by my Mum calling, which is an amazing habit that she has - she somehow knows the worst time to call.  I say I will call her back.  Margi calls and we have  good chat.  They are going to come over to celebrate Katy's birthday on 9th August. 

I am already stuck and cannot make clear arrangements - I know I have an appointment at Christie, but I do not know the time, so our plans are that they will come over, and I may or may not be here.  During my first week at Christies, I will be given a regular time for my radiotherapy - I just don't have it yet.

Occupational Therapy and Physiotherapy

I am visited by appointment, by two professionals.  I am feeling very well and feel slightly embarrassed that I have no clear symptoms to share with them.  I can complete all the tests comfortably, my right side is working normally, I am walking regularly.  The OT agrees to order a grab rail for my bathroom;  this is a physical piece of help that I do need.  It is easy to get disorientated in the shower and lose your balance.   They also tell me of other help that is available, should I need it as I go through the treatment programme.  I could have a seat to sit in the shower, or have the toilet height raised, for example.  They give me their phone numbers so that I can call them, if I need any further support.

Anna Dawson

Anna was one of my colleagues at Chorlton High School.  I discovered from Gill and Vanessa that she is pregnant - due 17th September.  She is so looking forward to being a Mum and I know she will be brilliant with her baby.  It was really good to see her.

Mobile Massage

Late afternoon, I have the luxury of a massage and eyebrow shape.  The lady who came was really friendly, and very professional.  I really enjoyed the experience, and amazingly have more money on the voucher to have a repeat session in a few weeks.  I am going to try my first ever facial, I think.  Any suggestions welcomed!  Thanks so much for this, Sally.

Dave drops in, which was a great help - I am doing very well, but still need help moving things up and down the stairs.  We have a good chat about lots of things.

Radiotherapy and Chemotherapy starts tomorrow

I will be going to Christies every week day for the next 6 weeks.  Tomorrow my appointment is at 11.10.  I will also have a meeting with my radiotherapist who will give me chemotherapy tablets and guidance on how to take it.  During my first week, I will negotiate a regular time.

Martha and Katy

I have to organise Martha and Katy around my radiotherapy times.  My day will be, that someone will come to collect the girls, then I will go to Christies and return, and girls will be returned to me.  I have a list of Chorlton mums and dads available times, so will be calling to ask for help within the next couple of days.  This is where my summer gets tricky...  

If you have not given dates that you could help to Sarah McCall, could you send them through to me sarahc1208@btinternet.com or to mobile phone.

Good night everyone
love
Sarah xxx

On yer bike!

Hi there, I wish I had a picture of this, but I went out on my bike today.  To get fruit and veg from unicorn, I worked out that if I got there by bike, I could then push the bike home, and the bike would take the weight of the shopping.  I felt absolutely fine on two wheels.  I have to say that when I got home, I was very tired, but the whole trip was a big success.  (I will add photo tomorrow)

I was meant to have a dishwasher delivered.  The delivery men called about 9am to say they were on their way, and they checked that I had the dishwasher at home.  I don't!  The last delivery men came were unable to remove the integrated dishwasher, so took the dishwasher back with them.  When John Lewis called about the delivery, I have to say that I was not as diplomatic as I could have been (I am blaming it on the steroids).  I was very curt, and explained that this was the third time the dishwasher had not been installed, and that I was about to start radiotherapy and chemotherapy, and that I would not be able to wait in for delivery men to arrive.  Fortunately the caller was very diplomatic, and he has given me a two hour delivery slot 7 - 9 am on Friday.  Let's hope this works out.

I have a lunchtime sleep, and then start dusting my bedroom.  I am proudly sitting in bed between perfectly clean chest of drawers.  I have rediscovered my jewellery, cleaned it and started wearing it.  I listened to the radio as I enjoyed a spring clean.  My best moment is Kate Bush singing "Running up that Hill" - I felt really good.

I made juice using the fruit and veg.  I have eaten well today - a good balance of fresh and cooked, lots of colour.

At the end of the day, I went for a walk.  I am walking a little bit further every day.  Today, I walked to the meadows, and as far as the river Mersey, and then returned along the cut.  I was gently out of breath, and walking at a reasonable pace.  Tomorrow, I will extend the walk again - I will go to Jackson's boat and then return.  My muscles are starting to return, which helps me feel positive about myself.  I will carefully get myself in good shape. 

I have a busier day tomorrow - Occupational Therapist and Physiotherapist are coming to see how I am getting on.  I would like a hand rail in the bathroom, and some key exercises.  Anna Dawson from Chorlton High School is dropping in, and it will be good to see her.  I have arranged a mobile massage for late afternoon, using a voucher from Sally.  Thursday is my first radiotherapy appointment.

Have a good night.  Love you all.  Sarah xxx

Thank you for your gifts

Thank you Bev, for this.  I will read and let you know what I think.

Louise's mum, Cherry has sent me this book, which I will use to keep adjusting my diet.  I am aiming to eat a low carbohydrate diet.  Thanks Cherry, this is so kind of you.

Sally has sent me a voucher for a mobile massage.  How fantastic.  I am in the middle of agreeing an appointment for the masseur to come to my house.

 

Thanks to Nicky and David in London, how sent these beautiful flowers and some lovely chocolates.  It is so thoughtful of you, thanks loads.

Health on Herm

My health on Herm was mixed.  I have had very little time when I have had a headache, and apart from the morning of fever, I have taken no paracetemol.  My only drugs have been 2mg steroids and omerazapole which protects stomach against the steroids.

My first night, I had terrible diarrhoea.  I had to keep getting up, walking to the toilet and allowing my bowels to eject painful liquid.  It felt like a few men were having a fight in my belly, over and over again.  The next morning, I ate eggs and anything that could help, and it all settled down.  I think my body is rebelling against the diet of raw food, and so I have increased the amount of food that I am eating that has been cooked. 

On the Sunday, I woke with a fever, and had to fill up with paracetemol to get the fever down.  I wanted to go to church because I like the service, and because on Herm, we always sing "for those in peril on the sea".  I love that hymn!  Dave advised against going, but I decided that I could do it.  I did not stand, I was seated only, but thoroughly enjoyed the service.  The fever did settle down, I am glad to say, and I managed to pack my bags and be ready to go.

Before I left for Herm, Sarah (piano teacher) helped me see that I have lost the digging/ticking/bed squeaking.  These noises have stopped, I am glad to say.  When they stopped, I don't know.  It is something that has stopped.  Maybe all the gaps in my brain have now disappeared, so there is no brain tissue moving around.  I don't know, but I am glad that it has stopped.

Herm was beautiful

Good afternoon!  I have had my holiday in Herm, and really enjoyed the break.  I wish I could stay longer, but have to be delighted that I made it there at all.  Here are some snaps from the holiday.

 

 

 

If you want to watch it, here is a video of the girls having their sleeping bag fight.  Two boys from the tent opposite, aged 5 and 2 joined in shortly after, and really enjoyed pushing the girls over.  Katy was really sticky with sweat!  http://youtu.be/De6btVT3OyA

Katy at Belvoir bay.  This is Martha and Katy's favourite beach.

Me, sun bathing.  Swim suit was perfect, thanks.

Castle building with Dave.  I wasn't up to digging.  I did walk down to the beach and walk back - this is a difficult walk up a very steep path.  I was very out of breath, but very proud.  The next morning my calves and hamstrings were stiff.  What a fabulous feeling.  I am building muscle again in my legs and arms.

 Dave and Martha walking down to the harbour.

 A pose on the way to the harbour.

Katy and I walked back up the hill from the harbour together.  There are three routes you can take.  Around the cliffs, which Martha did with Dave, and they spotted 8 different types of butterfly, using a guide to identify them.  

Up the path

or through the Woodland Walk.

Katy and I took the Woodland Walk route, and found these beautiful and vibrant natural flowerbeds.  We like these :)

 

 

And finally, we did have rain storms and thunder.  I saw a thunderbolt strike the sea, which was pretty shocking and impressive.  I also saw a rainbow.  I really felt like I was being offered all the Herm experiences in a compact set of time, very blessed!

When I left the island on the evening of the 28th, I got onto the Trident (the ferry to Guernsey) and Martha and Katy waved me off like I was getting on a bus into town.  They understand that it is the best solution for them to stay and enjoy Herm, and have accepted this. 

 These pictures were taken today, by Dave.  I am back home.   This is Katy and Ella, Amber and Martha.  They are good friends who play together every year on Herm.

 Spot Aunty Bev!  Bev, Amber, Martha, Katy.

Katy - what a brilliant pose!

 

On my last night, I stay with my friend Ali on Guernsey.  Ali and I got to know each other on Herm when we were 11 onwards.  They camped there every year, and so did we.  As uni students we both went to Loughborough Uni, both studied PE (in different years) and continued our friendship. He eldest daughter is moving into Year 6, as is Martha.  She also has twin boys who start school in September.   I think Martha is starting to understand that her friend Amber, could become a life long friend too.  This picture is of us at 4.50 am, about to go and catch the "red eye".  Ali, Jean-Luke (hubby) and Georgie, Alex and Charlie all go to Herm for a week in a cottage, and will have good times with Martha and Katy.  Martha and Katy plan to invite Georgie for a sleepover in the tent.

Another friend of mine, Paul (who I call Ingy) came over, which was magic.  He is an amazing man, who always shows what is in his heart.  He had been to Bermuda as the commentator on the Island Games, had been running cliffs with his son, and was incredibly proud of his family.  He always inspires me.

Heading to Herm tomorrow :) :) :) :)

I saw my consultant today and she is happy for me to have a holiday.  I have travel insurance.  I still can't believe it!!  Dave has come round to me being fit enough for a few days away.  Martha and Katy are excited to go.

Martha is very sad about the end of my holiday.  She is worried about me being on my own, and she does not want to be left in Herm alone.  I know that when she is there she will settle into Herm life, and she has her cousin Megan to look forward to from 1st to 8th August.  The three days between Dave and cousin Grace leaving and Ben and cousin Megan arriving will be the most challenging, I think.  I am very flattered that she cares so much about me.  I am wishing her the best holiday ever.  It remains that it is better for Martha and Katy to enjoy Herm - the other option is to come home and hang out with friends while I go for treatment at Christies.  The compromise is to stay on Herm and make the most of a beautiful island.

I will try to BLOG from Herm, but there are only a couple of places with wifi on the island, and they may be out of my range - I may not get there.  If I don't keep in touch, have a good holiday too.  Seeya soon.  love you   Sarah xxx

Star Trek X-Ray experience

Star Trek X-ray experience

It was all very star trek.  I was taken to an x-ray room, and a radiographer described what we were about to do.  This being, an x-ray using the points on my mask, to check I am orientated correctly, followed by an x-ray using the consultant’s guidance.  The marks on the mask would then be adjusted.  After this, the new marks would be used to direct the x-rays exactly to the point that they are intended. 

So, I am strapped into the mask and cannot move.  The lights are turned out.  All I have is sound because my eyes are closed by my mask.  It sounds star trek. The machine sounds like the transfer machine, a whirring noise at a reasonably high pitch.  Captain Kirk has landed!  The other sound is a much lower grind. 

I do become troubled by my inability to move.  My mouth is filling with saliva and I have to swallow.  When I swallow, it feels like I have moved the whole mask.  My mouth is full of fluid, and the swallow motion is full and the mask wobbles as I remove the saliva.

I try to imagine walking around Herm.  I walk out of the campsite, down a path to the cliff edge, and decide to turn left towards Belvoir Bay.  I am troubled by the mask so can’t quite map the route correctly.  It is a single path, but I can’t remember what comes next.  I jump to stand on an outcrop and look across an island and the sea.  If I look left, I can see Belvoir Beach and Shell Beach.  I jump again to stand at my rocks.  The rocks are a special place for me; from here I can see Jetou, Jersey, Sark, Guernsey and France when there is a clear view.  I stand here but feel like I should move on. 

Star Trek continues.  Dr Spock has landed.  Eventually, the lights come on and it is all over.  The radiologist releases me. 

Next appointment 1 August 11.10 am

Following this treatment, I am told the time of my appointment for 1 August 11.10am.  At the appointment, I must negotiate a time that works for me and Martha and Katy.  I say that I would like a middle of the day appointment, and frustratingly, the radiologist said, “so does everyone else”.  Fortunately, in the first week, Martha and Katy are away in Herm, so I can accept any appointment, which may help me gain an optimum appointment time.

Appointment with Dr McBain

After the x-ray, I return to the waiting room and then move into an appointment with Dr McBain.  At the next appointment, I will meet Charlotte who will give me my chemotherapy drugs.  I will have radiotherapy.  Once a week, I will have blood tests.  I will meet Dr McBain once a week to review progress.

Risks of radiotherapy:  copied from my copy of the consent form

 I had to sign a consent form, that listed all the potential side effects of radiotherapy and chemotherapy. 

The short term side effects of radiotherapy are tiredness, nausea, headache, hair loss, redness of the scalp, altered taste, occasionally worsening of tumour-related symptoms, seizure*, dryness/soreness of left eye*.

The long term effects of radiotherapy:  short-term memory loss, risk of cataract (left eye)*, dry eye (left)*, possibly some permanent hair loss (where tumour is close to the skull).

Serious or frequently occurring risks of chemotherapy:  risk of infection, bleeding* or bruising* which could be life threatening, nausea and vomiting, infertility*.

Symptoms with asterisk are very unlikely

Dr McBain stressed that all the symptoms marked with an asterisk are very unlikely, but that they have to be listed so that I am aware that they could occur.

I like Sushi :) and trip to the Beechwood Cancer Care Centre

Sushi fantastic
Believe it or not but I tried Sushi for the first time, today.  Dave's mum, Joan, bought me a 8 portions from Out of the Blue (local fishmongers).  It was terrific, and perfect for my new diet.

I went shopping this morning with Joan - a trip to the camping shop, quality save, bank and photo shop.  I return, with money in my purse, torches, a pill dispenser (I have pills and pods to take throughout every day, and the dispenser lays it out for me), and photos as gifts.

Beechwood Cancer Care Centre
After lunch, we head off to the Beechwood Cancer Care Centre.  This service has been recommended to me by Anna Friedenthal, and we were going to attend at art therapy session.  However, I got the times wrong and we were an hour early.  The session also clashed with an arrangement to have a dishwasher delivered, so we could not stay and experience the activity.   We were given a tour of the centre, and I liked the look and feel of it.  The children's rooms have puppets and dolls sharing the walls, and I started to imagine some of the conversations that they would have together.

Before the operation, I completed a referral for our family to receive counselling support, and we await our appointment.  I learned today that I will be eligible for counselling too, and nurse support from the centre.

I asked Martha what she thought of the centre, and she said she needed to play to forget about it.  She said she wants to play with her friends to forget.  I don't have an opinion about this; I guess it is quite healthy to want to forget.

Dishwasher arrives and leaves
At tea time, the dishwasher arrives.  I have paid to have the current dishwasher removed, and to have the new dishwasher fitted.  However, it turns out that the plumber cannot remove the integrated dishwasher - I have to pay more for this - and he takes the new dishwasher away with him.  On the phone, it is agreed that the website did not give me the option of ordering a plumber to take the integrated dishwasher because I ordered an ordinary dishwasher to replace it.  Tomorrow, someone from Manchester John Lewis will call to arrange a new delivery date. 

My diet
It is true - I have no idea what I am eating.  My mum is doing it all, and I am trying to learn.  I am starting to get the hang of it - eat raw, organic, no sugar.  I did have a cooked tea tonight, which I really enjoyed - it was a thai curry on brown spaghetti, with a raw salad of course. My mum is making the fruit and veg juices, too.   Gotta get the hang of it soon. 

Exercise
I have started pilates in the morning.  I am building up my morning routine.  I want to have a routine to fall back on when I am feeling tired and poorly.

Packed for Herm (nearly)
Nearly ready for Herm - I think I will be going.  Dave is incredibly relieved that I have a lift from the island staff to take me from the ferry to the campsite.  I have nearly finished packing for Martha and Katy's two week trip.  I know I am going to be overwhelmed when I arrive there, and I can't wait.  I will be there on a Sunday too - I so want to go to church and sing for those in peril on the sea.  I love that hymn. 

My new diet!

Nutrition planner

Notes from Wendy

·         The majority of food should be raw.

·         Sarah is not eating wheat – look for gluten free produce.  Gluten free products are in Sarah’s cupboard eg flour, pasta.

·         Sarah does not eat meat.  She does eat fish.

·         Fresh is best:  Anything that is cooked must be cooked at lowest possible for temperature for a longer time.  Heating food above 43 degrees destroys almost all the enzymes. None of Sarah’s foods are to be microwaved because the extreme temperature alters the state of protein in the food.

·         Organise snacks at start of day to help Sarah avoid binging the wrong foods.

·         Use the Sampson handbook for recipes for juices.

·         Garlic is a natural antibiotic – add it to meals.  Crush it, rather than chop it.  It only releases its properties when it is crushed.

·         Sarah drinks TIC TOC tea – high in antioxidants.

·         Do not use the microwave.

·         Do not use cheese/keep cheese amounts low eg a little goats cheese.

·         All washing is to be completed with bag of washing powder.  Do not use the branded boxes of powder.

·         Set the landline phone to your mobile phone number, ready so that Sarah can use redial in the night.

	Food	Dose	Preparation
0600	Boiled and cooled water		Boil the water, let it cool and put it in fridge.
0700	Boiled and cooled water Green tea capsule   Aloe	Green tea can only be given in the morning and the effects of it last all day. 15ml 1 – 3 times a day	Take capsule with water, or open capsule and make up as a cup of tea. Take on its own like medicine.
0800	Boiled and cooled water
0900	Boiled and cooled water Linseed vege pods/omega 3   Udos choice powder Soya protein (digestive enzymes)	Take one in the morning and then 3 times a day. 2 desert spoons up to 3 times a day. 1 heaped desert spoon = 9 grams of protein.  1 – 3 servings a day.	Tastes like mown grass. Add to yoghurt, sugar milk or water.
1000	Boiled and cooled water Glass of masticated juice Aloe Vera Wheat grass powder	Drink 1 g;ass of juice with 15ml aloe vera added or Aloe Vera separate 10 – 15g of powder	Make enough juice to last the day.     Put wheatgrass powder in the breakfast juice.
1100	Boiled and cooled water
1200	Boiled and cooled water Milk thistle	10 drops twice daily. soothing to the digestive tract	Increase dose as Sarah moves through treatment.
1300	Boiled and cooled water
1400	Boiled and cooled water Linseed vege pods/omega 3 Udos choice powder	1 pod Soya protein (digestive enzymes) – 1 heaped desert spoon
1500	Boiled and cooled water
1600	Boiled and cooled water Milk thistle	15 to 20 drops.
1700	Boiled and cooled water
1800	Boiled and cooled water	Drink 1 glass of juice
1900	Boiled and cooled water
2000	Boiled and cooled water	Linseed vege pods/omega 3 Udos choice powder Soya protein (digestive enzymes) – 1 heaped desert spoon
2100	Boiled and cooled water
2200	Boiled and cooled water
2300	Boiled and cooled water
2400	Boiled and cooled water

Food that Sarah likes when she is feeling poorly

·         Baked potato cheese and small salad (baked in the oven)

·         Carrot and coriander soup and wheat free bread (Martha can make this)

·         Leek and potato soup and wheat free bread (and this)

·         Pumpkin or butternut squash soup

·         Heinz tomato soup and wheat free bread

·         Probiotic yoghurt

·         Porridge and honey, porridge and bananas

·         Mushroom pate on wheat free bread or unicorn crackers

·         Cauliflower cheese, or cauliflower and broccoli cheese

·         Flapjack (Martha and katy can make this)

·         Carrot cake

·         Banana/tangerines/cherries

·         Plain pancakes (Martha can make the mix)

·         Somelina or rice pudding


Julie Matthews:  You are correct.  I have no idea what I am eating.  My mum is complete control of the food that I am eating.  I am trying to learn, but still have no idea at all!