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.”