start anew

The Cancer was really all consuming.  It took over everything in our lives.  There was almost no space left for anything else. It sometimes really felt if it was suffocating me, us.

And now with our daughter being given the all clear it is as if more space arrives.  Suddenly I can think beyond hospitals, beyond tests, scans, waiting.  Check-ups are the only reminder.

Also she has just finished her final school exams and will soon head out into the world beyond schools, beyond relative safety. Being extremely thankful is a very mild way of putting how I felt when we heard that the cancer was gone.   I know that God is still and ultimately in control.  I hold on to that.

Sometimes it actually feels weird doing ‘normal’ stuff again.  Things I did more than a year ago.  It feels if I haven’t done certain things for a very very long time.  Not only a year ago.  I need to gather new confidence to start anew, to believe in myself again.  And that is where I am at.

New beginnings.

3. CHEMO continues

I love my daughter’s spirit, her amazing courage while dealing with this.

– Her eyebrows disappear and she draws them neatly in.

– Her eyelashes have thinned out pretty much so she just puts on fake eyelashes when going to a party.

– She plays her grade seven piano exam despite the dread of having chemo the very next day.

– Her hair falls out and she starts wearing a bandana.

– She never blames the cancer or uses it to get out of a tricky situation – bad test results, loosing things…

– She continues to play piano in the Church band.

– She continues to study hard because she wants to finish her last school year and yes life goes on…

– On the days that she feels more herself she is just so intense happy.

 

We feel blessed by the amount of people who are praying for her, thinking about her.  We feel blessed that we are almost there, almost at the end of this road that started off extremely dark.

2. CHEMO STARTS

The tests were more or less done, the stage was decided – stage 2A – and chemotherapy was about to start. Stage 2A means two or more groups of lymph nodes are affected on one side of the diaphragm. The ‘A’ is that she had no other symptoms like a fever, night sweats or weight loss. That was something to be grateful for – she was in the early stage of the cancer.

For Hodgkin lymphoma one of the most common chemotherapy treatment schedules is ABVD (Doxorubicin, bleomysin, vincristine and dacarbazine). As with most cancer treatments there are side effects: possible infertility, inevitable loss of hair, sore mouth, the lining of the stomach that will get thin, aching jaw, aching body, numbness in the fingertips, the endless tiredness, et cetera, et cetera…. Chemotherapy interrupts the way cancer cells grow and divide, but the bad part is that they also affect normal cells.
Her chemotherapy will last six months and treatment is every second Friday.

The first time we walked into the day ward I had to swallow the panic in my throat and force myself not to turn around and flee with my daughter. I had to be brave. If she could do it, why would I complain? I could see the people seated looking from me to my daughter trying to figure out who is the one with the cancer. Around us the youngest person receiving treatment was in their 30’s with mostly much older people seated. And then their almost gasp when my daughter went to sit in a chair to get the treatment. She is at that age where she is just too old for a children’s ward.

I remember at the first chemo my daughter’s nervous call from the bathroom because she couldn’t give the nurse a urine sample despite the litres of water she had drank at home. That made us giggle a bit.

Sometimes when I think about what she must be going through I feel literally sick. But on the other hand when you live through things like this, it does put life in perspective. Little things that would have upset me previously are now not even worth thinking about. The not perfect clean house or the peeling paint or the weeds coming through is not that important anymore. Maybe you try and live a bit more deliberately. What is really difficult though, is to see my daughter maturing so much quicker. Suddenly she doesn’t complain about teenage stuff anymore and suddenly I want her to complain about make-up, about boys, about not having any cool clothes. Because I don’t want her to suffer this horrible sickness and battle with tiredness, with hair falling out, with a sore mouth. She is suffering at a level far deeper than any teenager should.

When we found out about the cancer I was constantly revisiting the times before we found out to try and remember if I had missed any signs. Had I missed some vital signs that could have given me an indication something was seriously wrong with my daughter? Was she more tired than usual and had I not noticed? Were there any other signs? Why didn’t I see the lump on the side of her neck before we actually saw it? Why didn’t I pick up on other signs, other irritations? My mind went round and round in circles. As a mother you feel guilty, you feel helpless; you want to make it better, you want to resolve it. In the end you can’t.

What keeps me going: I know God is in control and if I cannot see His hand, I have to trust His heart. I have to cling to this.

Our daughter has Cancer : 1. THE START

Have you ever noticed when the sound around you stops? When the hum disappears? When it becomes really quiet?

It is usually when you are faced with something terrible. I think you’re focusing so hard to digest the bad news that there is no space left for any of the other senses to do their work properly.

When they told us that our then 16-year-old-daughter had cancer the sound was gone. I had to focus on the face of the specialist telling us this news. On his lips moving, on his hair, on the window behind him, on anything but what he was saying, to keep my emotions in the distance.

I was clinging onto the positives – Hodgkin Lymphoma, a cancer that is one hundred per cent curable – if they find it early enough. The doctor said something to the effect that if you had a choice in cancer, this was the one to choose.

Lymphoma. I rolled it around my tongue. Hodgkin Lymphoma. A cancer of the lymphatic system. A rare cancer. The exact cause unknown. It has abnormal cells called Reed-Sternberg cells.

I looked at my daughter and could see the questions in her eyes. I saw the trembling of her chin. I saw her maturing in front of my eyes. Was it only a few weeks ago that we were excited about going to France for the summer holidays?

I was angry with God. Why? Why? Why? Why didn’t I rather get it or someone much older? Someone who had lived their life? Why now with her going into her final secondary school year when she needs all the time and energy she has to study, to concentrate, not to be tired, not to be sick. In my human mind it was just not fair. This made my faith wobble dangerously.

Then the tests and scans and X-rays and endless blood tests started – PET (positron emission tomography) scan, CT scan, ultrasound scan, bone marrow tests, chest X-rays. In everything she went through there was a calmness about her, a stillness, never complaining, just an acceptance to get through this, to fight this, to get it over with. She of all people was allowed to complain. Just a little tiny something. Even with them taking a sample of her bone marrow (that is actually a piece of the bone) made her grit her teeth and carry on.

We had funny times between all these tests and waiting around, having read a few books each by the end of it, making up games and stories to pass the time. I asked her once during one of our endless waiting periods what had been the worst so far, which test was the most awful, which pain was the nastiest. A fair enough question because she had been through dreadful things so far, things people double her age might never experience, so she was allowed to complain a little.

This was her answer: “Let’s focus on the positive. I love that we get to spend so much time together.”

Learning how to Learn, a MOOC course

I really enjoy doing online courses.  Not only because a new course will stretch my brain, but also because of the freedom of an online course.  It suits my lifestyle, I am not bound to certain hours in which I have to go to class or have to study, I can totally work it around my day-to-day tasks.  Currently I am finishing a MOOC course on the website www.coursera.org called Learning How to Learn : Powerful mental tools to help you master tough subjects by Dr Barbara Oakley and Dr Terrence Sejnowski.

The book A mind for Numbers : How to excel in Math and Science by Barbara Oakley, is referred to during this course.  And no, the course is definitely not specifically focused on maths and science.  I personally wouldn’t have taken the course if it was only intended for maths and science students.

The course teaches you how to engage your brain while learning, chunking ideas, procrastination and how to prevent it, memory tips, learning and many more learning ideas!

The brain has always fascinated me, not only because it is such a wonderful creation, but it can contain so much information – recent and much older information.  The course starts off telling you about the brain in focus mode versus diffuse mode and how these modes are important for learning and creating.  Apparently everyone frequently switches between these modes in their normal day-to-day activities.

The focused mode of your brain would be exactly that – focused on something specific. The diffuse mode would be a wider perspective and would be useful when learning something new.  One of the examples given in the course of creative people who tapped into the diffuse mode refers to the artist Salvador Dalí, originally from Figueres, Spain.  It tells of how he would have used the diffused mode to create some of his masterpieces.  Dalí was well-known for his surrealistic art.  According to the Free Dictionary online surrealism ‘is a 20th century literary and artistic movement that attempts to express the workings of the subconscious and is characterised by fantastic imagery and incongruous juxtaposition (absurd combination) of subject matter’.

So a technique Dalí (and others) used to tap into the diffuse mode of the brain, and which is also explained in this course (and written about in the book) is how he would put a tin plate on the floor and then take a nap holding an object over the plate.  The moment he started falling asleep the object would clatter in the tin plate and he would wake up ready to tap into his diffuse mode (subconscious) and create surreal images.  On a recent holiday to Spain we actually saw his museum in Figueres where you can view many curiosities of Dalí’s amazing imagination.

 

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Of his museum he said:  “I want the museum to be a single block, a labyrinth, a great surrealist object.  It will be a totally theatrical museum.  The people who come to see it will leave with the sensation of having had a theatrical dream.”  Not sure if it was like a theatrical dream when we visited, but it certainly was surreal.

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The face of Mae West when viewed from a certain spot in the museum.

So as I understand your diffuse mode (or the unconscious) is constantly at work in the background of your brain, even if you struggle with something hard, it will keep working.

Ideas how to stimulate your diffuse mode according to A Mind for Numbers is to go to the gym, swim, dance, draw, take a bath, listen to music (especially without words), pray, sleep and many more.  Sleep apparently is the most effective in allowing your diffuse mode to tackle a difficult problem.  But it is not only using the diffuse mode that gets your thoughts going, it is the back and forth between the two modes that eventually helps you.  I suppose it comes down to this.  The two modes cannot work successfully on their own.  When your brain is in the focused mode, so if you are focusing on something intently, you do need to relax your brain (thus diffuse mode) after a while for the ultimate benefit.  Especially when learning new or tricky things.  It is therefore extremely necessary to use both the focused and diffuse modes and teach yourself to work between the two modes.

Another aspect of the course I was intrigued by is the chunking of information or to create chunks.  This is the grouping together of words/ideas so that they are seen as one.  In this course Dr Oakley talks about chunks as being ‘pieces of information that are bound together through meaning’.

So once you have chunked an idea or concept, you don’t need to remember all the little underlying details because you have got the main idea, or the chunk, and that is enough.  It is like getting dressed in the morning.  You usually have one thought – I’ll get dressed.  But there are numerous actions and activities that need to take place by this simple thought.

The course goes into a lot of detail how to take certain steps in how to chunk effectively.  Personally I think it boils down to first of all understanding the problem and then keep recalling it until you know the fact/problem/solution so well that it is set into your memory and you can just use this ‘chunk’ of information in different situations as you need it and it doesn’t take up lots of brainpower to recall.

Memory and tips for learning was another part of the course which I found extremely interesting.  I suppose as you get older you don’t just accept memory as part of life, but you focus on memory a bit more, because like your body needs physical exercise to stay healthy, your brain also needs exercise.

Now I realise in the course the focus is on students who need to learn material, but you can apply it in normal life as well.  For instance if you want to remember things like somebody’s name or telephone number you can use the same techniques.  Repeat the name/number, do something else and repeat again.  After a day or so try to repeat it again and see how much you can still remember.  Or if it is something really hard or longer to remember, built a memory palace.  The palace part is a place you know well, like the lay-out of your house.  Use the letters of whatever it is you need to remember and built a story in the place you know well.  Walk the story through the rooms of your house.  The more weird and wonderful the more chance of you remembering it.

And yes it sounds like a great deal of trouble to go through for something to remember, but seriously you will remember this far longer than when you just repeat it a few times.   You have to build a knowledge base over time, steadily, and with plenty of practise to make it to your warehouse of long-term memory where your neural pattern can easily access it when you need it.

I found it a fascinating course!

Yummy double chocolate chip cookies!!!

I recently received another Rachel Allen cookbook for my birthday!  I really like her cookbooks because the recipes are straightforward and I usually have the ingredients.  On top of that she typically has something interesting like ‘meal planning’, ‘storing’, ‘freezing’, ‘store cupboard’ et cetera in the beginning or back of the books which can be very handy!  In some of my older blogs I have written about her recipes and books and my admiration for both.

So in this current book – Everyday Kitchen – I found this gem of a recipe.  Double Chocolate Chip cookies – yummy!

According to Wikipedia the inventor of the Chocolate Chip Cookie was a woman called Ruth Graves Wakefield. She worked as a dietician during the 1920’s and with her husband, Kenneth, they bought a tourist lodge (the Toll House Inn) in 1930 in the town of Whitman, Massachusetts in Plymouth County, America.  Historically passengers had paid toll here, changed horses and ate home-cooked meals.  The Wakefields opened the Toll House Inn and Ruth cooked all the food and desserts for which she became famous!  She invented chocolate chip cookies around 1938 deliberately because she was always serving a butterscotch nut cookie and wanted to try something different.  So this chocolate chip cookie became the Toll House cookie.  Eventually she gave Nestlé the right to use her cookie recipe and the Toll House name.  Hopefully they gave her some free chocolate!

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Here is Rachel Allen’s recipe.

Double Chocolate Chip Cookie (20 large cookies)

225g butter, softened

325g caster sugar

2 eggs

1 tsp vanilla extract

225g plain flour

75g cocoa powder

1 tsp bicarbonate of soda

¼ tsp salt

175g dark chocolate (55-70% cocoa solids), chopped into small pieces or dark chocolate chips.

  • Preheat the oven to 180 degrees Celsius (350 F, Gas mark 4). Line three baking sheets with baking parchment.
  • Place the butter in a large bowl and beat until very soft.
  • Add the sugar and beat until mixture is pale and fluffy.
  • Crack in one egg at a time, beating between each addition, and then add the vanilla extract.
  • Sift in the flour, cocoa powder, bicarbonate of soda and salt, then add the chocolate pieces/chips and fold in to combine.
  • With wet hands, form the dough into balls each the size of a golf ball (or use two soup spoons to scoop up and shape the dough).
  • Arrange on the baking sheets, placing 6 – 7 balls of dough on each sheet and leaving space for the cookies to spread.
  • Bake for 10-14 minutes or until the cookies look slightly cracked on top.
  • Take out of the oven and allow cooling for a few minutes, and then placing on a wire rack to cool down completely.
  • Delicious!

Slán

The saint and the holy mountain

In Ireland we recently celebrated St Patrick’s Day, as indeed it was celebrated in a few other countries around the world where the Irish have left a big enough stamp!

Saint Patrick is the primary patron saint of this green island.  He first came to Ireland as a slave and lived here for six years before escaping back to Britain.  He developed a deep faith in God and after 12 years once again came back to Ireland as a missionary. He stayed in Ireland for another thirty years, converting, baptising, and setting up monasteries.  One of the books he wrote, Confessio, is a spiritual autobiography and one of a few sources of information about St Patrick.

There are also a few legends surrounding the saint, including that he drove the snakes from Ireland into the sea! St Patrick’s Day is celebrated on the date of his death, 17th March.

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But all this talk about Saint Patrick made me think about the ‘holy’ mountain in the west of Ireland – Croagh Patrick which overlooks Clew Bay in County Mayo.  This mountain, which rises to a height of 765 metre, is 8km (5 miles) from Westport.   The start of the Pilgrim’s Path at the base of the mountain is in the village of Murrisk.

The mountain itself is renowned for its Patrician Pilgrimage in honour of St Patrick’s fast on the mountain for 40 days in 441AD.  This custom has been handed down from generation to generation.  On Reek Sunday – the last Sunday in July – thousands of pilgrims visit the Reek.  This includes pilgrims, hill climbers, historians, archaeologists and nature lovers.  The tradition of pilgrimage to this holy mountain stretches back over 5000 years from the Stone Age to the present day and it is estimated that about 1 million people climb the mountain each year.

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Although the climb is steep and very slippery towards the top with loose rocks and stones, the final few climbs to the summit is one of elation. We as a family climbed the mountain during our stay in County Mayo over the Christmas holidays.   I was very impressed that there wasn’t too much in the way of touristic gadgets at the top of the mountain.  Only the small chapel and the view….

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The first part of the climb, a little bit further than the statue, was really tough going.  Once you reach the top of the smaller mountain, so to speak, and you move on to the other side of the mountain the walking gets easier until you reach the stones.

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It used to be that pilgrims would climb the Reek on the last Sunday in July with bare feet, as an act of penance.  Traditionally the pilgrimage also took place at night but due to safety the last 30 years has seen the climb made during daylight hours.  The lady at the restaurant at the foot of the mountain told us that only one or two pilgrims a year still climb it bare feet, “it is really a dying tradition.”  She however climbs the mountain at least once a year, but with shoes on!