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.

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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.”

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!

Keep Sinterklaas and his helper – Zwarte Piet

As a child I loved the Sinterklaas celebrations we had at the beginning of  December.  Sinterklaas and Zwarte Piet (St Nicholas and Black Pete) were a highlight of my year.   I suppose it was mainly because it is a celebration for children –  toys, sweets and ginger biscuits (pepernoten), children being the centre of a festival!  What more can a child ask for?  But now it seems that Sinterklaas and especially Zwarte Piet are in a bit of a pickle …..

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Before I explain why let me give you some background about this festival. Although I grew up in South Africa, my parents taught us the Dutch traditions and culture they grew up with, so Sinterklaas was one of them.  Sinterklaas is celebrated on the 5th of December in the Netherlands when Sinterklaas and his entourage arrive on a steamboat from Spain (Belgium celebrate it on Dec 6th).  His helpers are called Zwarte Piete (Black Pete). Zwarte Piet would check if you were a good child and did what your parents told you.  If not you wouldn’t get any presents, if you were good you were rewarded with sweets, toys and chocolate.  So from Sinterklaas emerged Santa Claus, and not the other way around.

Maybe when my mom and dad grew up in the Netherlands (1940’s) Zwarte Piet was depicted as a more scary character who would beat the naughty children with a bunch of twigs.  These days Zwarte Piet is mainly characterised as a clown or entertainer I think.  And yes he or she is always painted black.

As children we were told that Sinterklaas was a very good man.  He gave all his money to the poor and loved children very much.  This I believe is based on the Saint Nicholas who was born in the fourth century somewhere around Turkey and whose parents raised him to be a devout Christian.  He was also very religious from an early age and devoted his life to the poor.  He used his whole inheritance to assist the needy, the sick and the suffering.  Eventually he became a Greek Bishop and dedicated his life to serving God.  Bishop Nicholas became known for his generosity to those in need, his love for children and his concern for sailors and ships.  He died on December 6th 343 AD.

And now for the dilemma …. A UN working group is currently investigating this Dutch custom where white people dress up as Zwarte Piet, with the leader of the group, a Jamaican Academic, Verene Shepherd, condemning it as “a throw-back to slavery”.  Now the Netherlands is one of only a handful of countries who strife very hard to be a country of inclusion, of integration and combating racism and discrimination in every part of life.  So surely they should be able to sort this out amongst themselves – if it is a problem?

Over the weekend I also read an article in the Irish Times written by Donald Clarke where he mentioned that Dutch people were ‘blacking up’ for Christmas.   The writer is really off the mark. In the first place Sinterklaas and Christmas are actually two totally separate events.   The one has nothing to do with the other.  Sinterklaas and his Zwarte Piete is a children’s festival where everyone gets toys, sweets and cakes if they were good.  Christmas is about the birth of Jesus.   Surely it can’t be that hard for the writer to establish certain facts before putting a column together?   Zwarte Piet is definitely not to offend.  It is a custom, a tradition, a festival.  On  social network there  is a petition (Pietition) where the ‘likes’ to keep the Sinterklaas-festival featuring  Zwarte Piet are already over 2 million.

So why all the commotion?  Does the blackness of Zwarte Piet make the tradition racist?  Are we not becoming a bit too sensitive here?  This is a tradition and a debate for the Dutch people to handle, not for some working group to decide, a group who might have no idea what the culture involves or is about.  Even if the Dutch decide that Zwarte Piet must be in all the colours of the rainbow, won’t  it just be so sad to crush a tradition just because we are thinking RACIST in capital letters.  Do we need working groups  to decide about all the different traditions  just in case something is too racist, too sexist, too chauvinistic, too blasphemous, too violent, and so forth?  Imagine a world where all traditions and cultures were revised to make sure nobody’s feelings got hurt!  A bland little world to keep everyone happy with no spices to make different cultures stand out and keep us excited and interested in other nations, to learn about other cultures and respect them.

I for one hope that Sinterklaas and Zwarte Piet arrive safely on December 5th in the Netherlands and that this tradition will live on!

Slán

Poet’s Corner

It was a cool autumn day when we went out for a walk with our dog.

We live in the countryside on the outskirts of a small village.  Usually we would walk into the village and pass the church before taking a right to walk along the river Maigue.  We did exactly that.  The path next to the river is beautiful and peaceful with an old stone wall and big trees along the way.    Long ago this was the main road to Cork, but now it is a well-known walking space.  Before you get there though, you have to pass the old water mill on your left and an old pub on your right.

This old pub is called Poet’s Corner and I always imagine that hundreds of years ago writers and poets would get together at this pub where they would read out their latest poems or written offerings and get some divine inspiration from similar thinking souls.  The smoke from the open fire would be heavy in the air, maybe also from them smoking pipes, and the place would be all cosy and pleasant.  They would have a pint maybe and sing a song, laugh a good bit, maybe cry, but they would all have been kindred spirits.

Well apparently in the mid-18th century this village was a meeting place for Gaelic poets.   The story has it that this School of Gaelic Poetry was actually just a convivial gathering in a pub owned by  one of the poets.  They were known as the Poets of Maigue, the Maigue Poets or Fili na Maighe where the poets always wrote in their native Irish tongue.  They wrote songs, elegies, drinking songs, songs of a patriotic nature and songs of farewell.   I’m unsure if Poet’s Corner was the pub they used for their writings, but it is an inspiring thought.

These days Poet’s Corner houses a Chinese Restaurant where many people from the village and beyond come to get a take-away or eat in.  So as we were walking towards the river we suddenly realised there was something very wrong with the place.  The indoor chairs were outside, a gas bottle was lying outside, there was a lot of glass and it dawned on us that the place had been broken into and was vandalised.  Really badly vandalised.  All the windows were broken.  With no regard or respect for another’s property the furniture and everything inside had just been demolished and destroyed.  We were shocked that this could happen in our sleepy little village.

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Because the restaurant only opens a bit later in the day those poor people who own the restaurant definitely didn’t know about this when we walked past.  Horrible.  Soon and as is custom when living in a small village everyone knew about it.

Although the incident was shocking the outcome was amazing.  According to a local newspaper the whole community were behind this Chinese family and appalled by what had happened.  Everyone was in favour of supporting  the Chinese restaurant proprietors to get back on their feet as soon as possible. The community took action.  Events took place in all the local pubs with raffles and spot prizes and was hugely successful with the funds to be used to get the restaurant restored and in working condition again.  So within days the windows were gleaming again and there was the usual ‘OPEN’ sign on the door.

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I just love it when a story ends well….

Slán