The Final Chapter - A Thousand days

You all know how this story ends - our hero didn’t make it.

How long have I been staring at this line, the empty page.

I do not want to write about it

But I have to

No I don’t

I will not write until I want to

Not yet

I am at the Dubai Mall in a restaurant overlooking the fountains and the Burj Khalifa.  Italian music plays in the background and there are little bubbles stuck to the slices of lemon in my glass of San Pellegrino water.

I am broken and I feel as if I cannot breathe, yet I stand in deep gratitude to so many people who held and helped and cared and love us.

Look at how much I’ve already written.

Laptop battery ran out.

Do we have batteries?  I think mine is also running out.  Once someone I didn’t know thought it was very funny when I said ‘battery aziz’ – I still don’t know why.

A little boy who loves me said to me

“Your husband died and you are very sad.”  Without giving me time to answer he carried on

“ .. and your heart is broken

<pause>

into a million pieces.” 

And I could feel it happening, like a frozen hand relaxing its hold on my heart and I was filled with the beginning of blinding white pain. Just for an instant, before I smiled and chatted to him about strings and giants’ rings and other magical things, of stardust and moonbeams and undreamt dreams, and things that never rust, pirates and gypsies and far off lands and all such splendiferous stuff.

Let us make much ado and raise a hullabaloo

for this moment will n’er come again

 The coffee pot is on and the tea kettle is too

There is sugar and cream and honey for the brew

There are cakes and crumpets and sconces

and creamy butter aplenty, enough for one and all

So come on by and sit for a spell

in the parlour or on the porch, or out around the garden well

where the air is so sweetly scented with honeysuckle. 

I miss honeysuckle. 

Dubai does not smell of honeysuckle

and the people are see-through.

I am back in South-Africa.  Psychologists believe human nature is to move away from pain towards pleasure.  I have had the tendency to run away from pain ever since I was little, and yes, sometimes I just ran.  But there is nowhere to run - the pain is everywhere.  They keep telling me that it will get better, but it keeps getting worse.

And the endless paperwork and words like

W

I

D

O

W

It has been six months.  Six months.  I cannot believe he is dead.  I cannot believe that Tinus died – I never once thought that he would not make it.  I type letter by letter and that is a bit how my world feels.  Letter by letter, I keep waking up in the mornings in my bed, the same window the same curtains, the same surreal feeling of Groundhog Day – again, another day.  Another day.  Another day.  And he is still dead.

How am I going to do this?

We agreed that morning, I don’t remember what the date was,  that he will collect his scan results from the doctor and we will meet at Uno, (restaurant) since I had a morning job which finished at 12, and he could collect the results at 12.

When I walked in he was sitting there – and in spite of agreeing not to look at the results before I am with him I could see that he did – that the news was not good.  The tumour in his liver grew by 7cm in 18 weeks.  I remember holding his hands – I remember how tightly he held onto me, and I to him.  Tears were running down his face as he said “I am going to do chemo again.”  And after looking down at our hands he looked up into my eyes and said – as if angry with himself: “How quickly am I giving in.”  Meaning that he will not be carrying on with his regime of alternative treatments and instead go back to chemo … giving in to the accepted norms.

I told him that when you have a big cut on your hand that is spewing blood you put a big plaster on it very quickly – we know that chemo worked before, it is completely understandable that he opts for chemo, and that doesn’t mean that he should stop with the lifestyle and alternative treatments. I suggested that Skye and I cancel our plans for the Camino and that instead we all go to SA where we have more support from our friends and family and he can do both chemo and alternative treatments.  He and Louis had separate “boys-only” holiday plans ... he never told me what it was and I don’t want to ask Louis about it.

On the 8^th of June I came home from work in the afternoon and he was pale and clammy and very tired.  At that point he stayed at home permanently with the approval of his boss – what an incredible gift that man (David Greer?) gave us.  Tinus spent his days with Louis, who finished his IGCSE exam by that time and was home as well.  They played a lot of “Age of Wonders”  together (computer game.)  Tinus also won a playstation 4 at the Video Games Live (VGL) show and the two of them played some flying thing on that as well.  I am not sure of the exact order of events … dammit I keep forgetting things, I never forgot anything.

Point being Tinus lost a lot of weight and he was very weak.  I was painfully worried about him all the time and constantly had to keep myself from loading him into the car and pitching a tent on the lawn of the City Hospital.  But that afternoon/evening he started complaining about a pressure on his chest – so off we sped to the emergency room, (apologies from here on for grammar etc mistakes, I know some of my readers have issues with my creative use of tenses – I am not re-reading this) me thinking … heart attack!  We waited in emergency room, nurse came to ask regular questions, name age etc.  So Tinus tells her he is 66 – no jokes.  I became cold to my bones and I think in that moment I realized something was badly wrong.  I hugged him gently and told her he is 45.   That morning at 2am he became aware of his surroundings again, looked up at me with those beautiful blue eyes of his and smiled that deep “I love you” smile and said:  “Oh my love, it is your birthday, and I had such plans.”  I just laughed and said that we will celebrate my birthday when he is all better. 

 I am owed a birthday. 

 I never got to know what plans he had.

Our family have .. I guess now it is had … a few birthday traditions.  I found the Swiss Army Knife where he hid it in his cupboard only in September.  The kids told me that he bought me that for the Camino.

 Yes, the Camino.  We finally convinced him to go to South Africa and he asked me to do the Camino for him.  If you are not sure what I am talking about google Camino pilgrimage.  He and Louis left for South-Africa and I keep running that whole day before they left though my mind over and over again.  We sat in the ‘red lounge.’  He love sitting on the sofa on the right where the morning sun shone.  We sat there and just chatted all day – two of his companies’ HR people came to see him for something or other but the rest of the time it was just us.  That was a perfect day, we packed, I think that was the first time in our 25 years together that I actually packed his suitcase.  And for the rest of the time we chatted, about things that mattered.  It was not on purpose, or perhaps from his side it was – me stupid optimist – but that was the last day for just us.  Then I took him and Louis to the airport, he travelled as an assisted passenger because he was so weak, and I hugged him tight and someone pushed him away.

The Camino is another unfinished chapter.  We were so worried all the time.  We spoke to Tinus on a daily basis but I also called Ulrich every morning and every evening.  I made Ulrich promise me to be honest with me; to tell me how Tinus is really doing – and I will come home only when Tinus or Ulrich tells me to come home.  Tinus’ health improved so much that he took walks with his mother by the river, he spend a lot of time doing what he loves best, just being with friends, celebrating life.  I was told afterwards by Tinus’ mother that that was some of the best times of her life, I also know that this time was very meaningful on different levels to almost each and everyone of our friends and family.  Tinus spent a lot of time with Louis, one of his best friends who lives in Canada just happened to be in South Africa and the two of them spent some time together.  Yes, everything seemed to be going so great.  And yes, everyone was upset with us for not being with Tinus - we were upset with ourselves for not being with him.  But we couldn’t not do the Camino, because he asked us to do it for him, so he can get better, and if we give up, we give up on him getting better.  So we prayed in the Notre Dame, we walked the streets of Paris, we watched the French country side outside the TGV window  change to mountainside, we climbed a huge bloody mountain in the pitiless rain alone next to each other, the sucky sounds of our sodden feet  the only words on the mulch covered path under ageless trees. In this deprivation of light our skin is all the more sensitive to the freezing rain. It did not pound or sting, but fell on our faces like bitter little kisses of ice and ran down in tear-like drops from our jaws that were clenched tight to prevent the chattering of teeth or perhaps our screams of worry and fear to escape. We stopped somewhere high for a moment as the sun broke through the gloomy clouds in shafts of light; looking at the incredible distance our feet carried us and our worries. It was one of those golden sunlight moments.  Drops of water trickled down my body as I stood there, my gaze fixed on the horizon, staring at the beauty of this world we live in when Skye said: “If you want to go to South Africa we can.” As the clouds continued crying, I felt the rightness of that idea fall around me like a velvet cloak.  When we got to the next cloister I called Ulrich and he said it is time for us to come home.  Ulrich told me later that when he told Tinus we were coming home his face lit up, but then he said he hope it isn’t because we were worried about him, and Ulrich said no, it is because of the rain.

We travelled for two days, dragging our worries with us as our soggy shoes squelched through airport after airport until my brother collected us from Cape Town International and took us to the hospital and I didn’t recognize Tinus until he looked at me with those blue eyes and Skye burst into tears.

And that was where the world stopped being nice and the days were one long nightmarish moment where I was silently screaming in my head without taking a breath until he stopped breathing and everything became blinding white and silent.

I couldn’t sleep if I wasn’t with him so the hospital gave me a squeaky lazy boy-type chair to sleep in and one morning we sat on his bed like teenagers, cross-legged, with our knees touching and our fingers entwined and he asked me:” Do you think I am going to make it?”  And for the first time I wasn’t sure, and I told him so, but said that I am not ready to give up yet.  And I asked him – what do you think?  And he said he is not sure either, but he doesn’t want to give up yet.  It was then that he said to me “I want to get out of hospital and I want to be with you and the kids.”  And although I knew it was a bad idea, I put if off as long as possible, and then I got him out of hospital.  That first night was a nightmare.  We were going to stay in my brother’s house since my parent smoke in their house.  Tinus was in pain and extremely nauseous and a disorientated, and there were many many people all making arrangements, saying what needs to happen, being there  – trying to help.  And friends of a friend of Tinus’ wanted to come and pray for him and inbetween all of this these lovely people are arranging to come from a far away town and then Tinus decided he doesn’t want to see anyone and I have to let them know please don’t come and then Tinus wanted to go to Cape Town for an appointment at an alternative doctor he made and I had to find a way to transport him without causing him too much pain and I couldn’t find a place where I could refill his oxygen bottle and eventually I paid an ambulance to take him to Cape Town and the alternative doctor didn’t have proper facilities for him and I eventually managed to book us a place which ticked all the boxes I needed ticked caring for my terminally ill husband – I arranged for a night nurse and in the dark night I opened my door to a Zimbabwean I have never seen in my life before and I shook his hand saying “please come in, look after my husband, I need to sleep.”

I slept for a few hours and the little bit of recuperation made me realize I am being unreasonable, unrealistic, insane.  Tinus belong in the hospital.  At that point already he displayed three states of consciousness – completely aware and alert, sleepy and disorientated or deep sleep.  I waited until he was completely aware and alert and apologized to him, saying that I am so sorry but I am going to cancel the rest of his alternative therapies and take him to hospital, I am being irresponsible keeping him out of hospital.  He needs to be at a facility where he can receive proper care.    He needs qualified medical care.

It was raining and misty, I could barely see as we drove through the Southern Suburbs, the long way to Panorama in the Northern suburbs, past so many of our memories.  He had his hand on my knee, and every now and again I would cover his hand with mine (manual car) and I wished I could just keep driving, just keep driving in that perfect moment.  Where he is with me, gently snoozing, occasionally lifting his head to look at me and smile into my eyes. 

The time at Panorama was a bit of a blur, but there are moments of such intense clarity.  I was beyond exhausted.  Tinus’ brother Cobus and Tinus’ mom took to staying with Tinus alternatively some nights.  There were so many people, his mother, his brothers, friends and my family.  Lizana told me about the angels.  On the Saturday I asked my brother to bring Louis and Skye to come and say goodbye to their dad.  I said to them that we need to sit on Tinus’ bed and talk about what we will do so that he will know that we are going to be ok.  “But Mom, Louis said, “I don’t know if I will be ok.”

Louis and Skye were with Skye’s friend Ronita’s family in Melkbos.   It was a Monday.  Tinus wanted me to get the money out of his bank account into mine.  I have signing powers on his account but on the Saturday the bank manager wouldn’t believe me:  “I can see your signature here Mrs. Olivier but there is no covering message accompanying it.”  That Monday morning the oncology ward’s social worker spoke to me and explained to me what to expect when Tinus dies.  She said to me that people say that you take three months to recover from the loss of a loved one, and some say that you take a year.  But, she said, it takes a thousand days.  Three years.  Three years.  And I remembered – three years ago the oncologist in Somerset-West  told me that if we didn’t find the tumour in Tinus’ lung, he would have been fine, and then in three years’ time he would’ve just died.  And I wondered if it was worth it, was it worth it, knowing for three years, for three years hoping and fighting and fearing and be-f-king-lieving that he will be fine, that he will recover, that somehow it was a gift that we discovered the tumour and that he could fight it?  Wouldn’t it have been better if he just died?  ‘Cos he was about to die… three years later.

Ronita’s mom called me to say unfortunately a friend of hers is bringing the children to me as her other daughter has taken ill and needed to be taken to emergency.  I took the children to find alternative accommodation where all of us will be able to fit.  The bank manager called me to let me know that I can transfer the money from Tinus’ account to mine.   I took the kids with me to a nearby restaurant which had internet access and I transferred the money from Tinus’ account into mine.  We went back to the hospital and the four of us were together.  Tinus’ brother had to go somewhere and his mother went to the little patient lounge to have tea or a break, I can’t remember, but it was just us.  Skye sat on Tinus’ left hand holding his hand, Louis sat by his feet and I sat on his right where all the drips and things were.  We spoke about what the kids did over the weekend when Tinus started breathing very deeply – if you climbed Kilimanjaro you may know – that deep-deep breathing you have to breath when at the top, like there is not enough oxygen in the entire world to fill your lungs.  I could see that it was upsetting the kids.  So I asked them if it made them feel worried, and they said yes.  And I asked them if they wanted to go to the lounge and be with Ouma Alma for a bit, and they said yes, and I told them to kiss and hug Daddy and tell him that they love him and they did – Louis laid his head on Tinus’ chest while he held him for a long moment and then it was just the two of us. I went around the bed to his left-hand side and Tinus put his arms up and stretched them out as if wanting someone to pick him up, and I knew what was happening, from what Lizana told me.  “Oh my love, God sent his angels to come and fetch you, go with them.”   I needed him to go in peace, I told him that I love him, and then I kept saying peace, peace my love, peace.  His breaths became further apart, still deep long breaths, but with longer and longer spaces in between.  And then he just didn’t breathe again.  I waited in that unbelievable silence for a while, and then I pressed the call button and told the nurse I think Tinus is dead.  And things became blurry again. 

The funeral was beautiful – as they say.  But it was, the light was unbearably beautiful. 

The norm is to say someone lost his/her brave battle against cancer.  Tinus didn’t lose his battle, Tinus NEVER stopped fighting.  God came and stopped the fight.  I am so glad Tinus found the faith of his father again; he went straight into his God’s arms.  Have you read that book “The fault in our stars” ?  If you did you will know about the bit where the girl posted on Facebook “I feel as if we have all been injured in your fight.”  And we all have lost much.

In Dubai I was watching CSI or NCIS or something similar and in the story the woman realize that her husband faked his own death.  And there was a voidspace nanosecond where I was so excited – maybe maybe Tinus isn’t dead!!  And then suddenly I was crying breathlessly and I felt something inside my shoulder ripping apart, Louis and Skye held me as I clawed myself out of that pit of frozen blades.  I wake up in the mornings with tears streaming down the sides of my face, making little puddles in my ears, but no pain, no sadness, just void.

The kids are settled in hostel and I have sort of gathered myself.  I almost – but not quite – feel as if I live in Hopefield.  I still feel a bit like running.  Sometimes I cannot bear to have anyone close to me, I want to sit alone in the dark and hurt and not let go of the hurt as if it somehow still connects me to him.  But I can now look at photos of Tinus with a smile.  This morning, as the three of us sat on our beautiful stoep having breakfast they told me of their week - many moments of intense happiness and I said to them; look at those moments, how happy you were there.  Can you see that we are ok?  Aren’t our minds interesting - almost like a toddler:  When the toddler is crying bitterly and you say with your oh-so-happy voice “Oooo look adda pretty panda”  up comes the little face and if there is a pretty Panda quite soon the little frown has turned upside down. 

We will always have a great sadness because we miss Daddy so terribly much, but we have gotten everything from him that we need to be fine.  We have the deep sadness because we had such happiness.   The sadness sometimes just jump on me out of nowhere.  The clouds, the grass, the sunset, my happy children, my breath – all of these things make me cry.  But I have these times where I realize that I am not hurting all the time anymore.  Tinus was so worried that we are not going to be ok.  He was so worried about me.  But I think we are ok, if not quite yet, we will get there we will get there.

Thank you so much, for each and every one of you who loved Tinus.  Thank you each and every one of you who love me and the kids.  Thank you for standing with us, for helping us, for holding us.  Please don’t let go just yet.

Eating Praying and Loving

Last night as I walked outside and the warm night folded around my body I realized the summer is really back now.  We've had such a nice long winter and cool spring; every time the Shamals blew their dusty reminders of the coming summer over our desert we cringed and hoped that we'll have a few more weeks or a few more days before summer returns with it furnace breath, sweltering humidity and bleak skies.  But it’s here, it returned, and so did Tinus’ cancer.

Cancer is classified into stages and what Tinus has is considered stage IV (four) cancer.  This means the cancer has spread (metastasis) and has reached “distant organs.”  If you are not one of my Facebook friends or missed a post somewhere you may not know; about a year ago Tinus finished a second series of chemotherapy treatments.  His scan immediately after the treatment showed that most of the tumours (at that time he had a tumours in his lungs, lymph nodes and bone) have shrunk.  The oncologist wanted him to continue with chemotherapy.  “Until when?” was Tinus’ question to him.  “Indefinitely, until it stops working,” was the reply.  “And then?” Tinus asked.  “Well, then we increase the dose,” the good doctor said.

Quick insert here:Please please understand that I am writing here from Tinus' perspective - if you or your loved one opted for chemo it is great, I hope it worked.  Every cancer cure is a miracle, like an aeroplane flying (as Tinus puts is) the fact that thousands of aeroplanes fly each day, doesn't make it less of a miracle.  There are over a hundred different kinds of cancer and around seven billion different bodies.  This is just about him.

At that point Tinus decided to stop with chemotherapy.  We adapted our eating habits in such a way that we eat good food that is mostly alkalising. After three months, when Tinus made an appointment with the doctor for his next scan, the doctor initially refused to see him, saying he refused treatment.  Tinus pointed out to him that he refused one kind of treatment.  He had the scan and the doctor was very impressed; all the tumours were mostly gone.  Over December we let the good habits slip, and Tinus developed a cough and eventually lost his voice.   The Ear Nose and Throat specialist told him that it is nothing to worry about; a possible result of one of the surgeries.    Fortunately Tinus decided to go see a homoeopath and he strongly advised Tinus to consult his oncologist again, and that’s when we got the bad news:  Recurring cancer in his lung, lymph nodes and a 4cm tumour in his liver.  The oncologist again told Tinus he wants him to have chemotherapy.  I have mentioned in a previous blog how the doctors won’t commit themselves; well Tinus asked him straight up:  “Will chemotherapy cure the cancer?”  And the doctor said no.

Tinus has had an amazing amount of support, he has been “relieved from the responsibility to report to work” in order to fight this time, but his boss urged him to consider seeing the “good” doctors.  There are so many wonderful well-meaning friends, friends of friends, colleagues and relatives who have voiced their discomfort or unhappiness with Tinus’ decision not to undergo more chemotherapy.  And that is the main reason for me writing this blog.  When we are passionate about something, we sometimes come across as irrational.  So I am going to try and rationally explain Tinus’ reasons for choosing not to undergo more chemotherapy.

This choice of his lies in the realm of home-schooling your children or leaving the country of your birth:  If you've ever done or considered doing any of these you will know almost every single person who criticizes or give well-meaning advice has never actually done what you chose to do and therefore really know nothing about it.  What you do they find strange, it may scare them because you are doing something they can’t:  with your action, you take responsibility or control.  Someone else is not responsible for your well-being any more, you are. 

I pray that you don’t know anything about cancer and chemotherapy, because really, the only reason why you’d know about this (unless you’re an oncologist) is because it affected either you or someone you love or care for.

Firstly; what is chemotherapeutic medicines actually? 

Did you know that chemotherapy agents (I am not going to call it medicine any more) is a derivative of mustard gas?  “The nitrogen mustards are cytotoxic chemotherapy agents similar to mustard gas. Although their common use is medicinal, in principle these compounds can also be deployed as chemical warfare agents. Nitrogen mustards are non-specific DNA alkylating agents. As with all types of mustard gas, nitrogen mustards are powerful and persistent blister agents and the main examples (HN1, HN2, HN3) are therefore classified as Schedule 1 substances within the Chemical Weapons Convention.  The original nitrogen mustard drug, mustine (HN2), is no longer commonly in use for reasons unknown. Other nitrogen mustards developed as treatments include cyclophosphamide, chlorambucil, uramustine, ifosfamide, melphalan, and bendamustine. Bendamustine has recently reemerged as a viable chemotheraputic treatment.”  Quoted from Wikipedia

Google Nitrogen Mustard – see for yourself.

How is it administered?

When medical personnel handle the chemotherapy chemicals they are wearing full-body chem suits.  It is really disconcerting to think that the medical personnel protect themselves with these chemical suits - have you seen it?  It has the thickness and feel of thick rubber gloves, and then the patient must mainline those poisons …oops losing the rational attitude there.    Tinus has a ‘port’ which is a subcutaneous (under his skin) catheter connected to a port which was surgically inserted (tunnelled) under the skin of his chest.  When he gets chemo, a special needle is inserted through his skin into the rubber seal which gives direct access, or is actually in, a vein.

Why do the medical personnel wear these protective suits?  Danish epidemiologists used cancer-registry data from the 1940s to the late 1980s to report a significantly increased risk of leukaemia among oncology nurses and, later, physicians. Another Danish study of more than 92,000 nurses found an elevated risk for breast, thyroid, nervous-system and brain cancers.  The Seattle Times ran an article that told the story of a pharmacist who died of cancer she believed was caused by her merely handling chemotherapy chemicals:

“Lifesaving drugs may be killing health workers:  Nurses, pharmacists and others who handle chemo drugs have been getting sick. Despite multiple studies that indicate the drugs actually may cause cancers, the federal government doesn't require safeguards on the job.”

Read the article here:

http://seattletimes.com/html/localnews/2012327665_chemo11.html

Another article read:  “A study conducted over ten years from the U.S. Centre for Disease Control confirmed that chemotherapy drugs continues to contaminate the work spaces where it's used and in some cases is still being found in the urine of those who handle it..."

If these drugs are so dangerous to the medical personnel, how can they be considered "safe enough" to inject into patients who have cancer?  Are you thinking it is because of ‘continuous exposure’?  There are reported cases of medical personnel spilling these drugs on themselves once – a single exposure – and becoming seriously ill.  But let us assume it is a question of continuous exposure – remember the good doctor wanted Tinus to have chemotherapy – indefinitely.  I think that can count as more of less ‘continuous’ don’t you think?

Right, so how do chemotherapy chemicals work? 

This is copied from the Cancer Research UK website in order to maintain the rationality aspect:

“Chemotherapy damages the genes inside the nucleus of cells. Some drugs damage cells at the point of splitting. Some damage the cells while they are making copies of all their genes before they split. Cells that are at rest, for instance most normal cells, are much less likely to be damaged by chemotherapy.  The fact that chemotherapy drugs kill dividing cells helps to explain why chemotherapy causes side effects. It affects healthy body tissues where the cells are constantly growing and dividing. The skin, bone marrow, hair follicles and lining of the digestive system are examples of cells that are constantly growing and dividing. Because these tissues have dividing cells they can be damaged by chemotherapy.”

Six months after his last chemotherapy Tinus has still not recovered from some of the side effects of the chemotherapy that he has undergone.  Chemotherapy attacks rapidly reproducing cells, which includes some types of cancer cells, but it also attacks your white blood cells, a major player in your immune system. Your immune system is what keeps you alive.

“The majority of the cancer patients in this country die because of chemotherapy, which does not cure breast, colon or lung cancer. This has been documented for over a decade and nevertheless doctors still utilize chemotherapy to fight these tumors.” (Allen Levin, MD, UCSF, “The Healing of Cancer”, Marcus Books, 1990).

Now, you have chemotherapy but it doesn’t kill all the cancer cells.  It is a real possibility – also something the oncologist will tell you if you ask him.  How will your body defend itself without an immune system?  You have very little defences left to prevent any remaining cancer cells from reproducing.  If you still have cancerous cells in your body, they will take over like wild fire.  I’ve seen it happen, and if you know Tinus, you have too.

How well does chemotherapy work?

The Cancer Research UK website says:

The chance of the chemotherapy curing your cancer depends on the type of cancer you have
·         With some types of cancer most people are cured by chemotherapy
·         With other types of cancer fewer people are completely cured
 With some cancers, chemotherapy can't cure the cancer on its own. But it can help in combination with other types of treatment. For example, many people with breast or bowel cancer have chemotherapy after surgery to help lower the risk of the cancer coming back.
 With some cancers, if a cure is unlikely, your doctor may still suggest chemotherapy to
·         Shrink the cancer
·         Relieve your symptoms
·         Give you a longer life by controlling the cancer or putting it into remission

I think if we look at Tinus’ history so far and what the doctor said, we can infer that he possibly fall in the latter category.  And although he understands that the doctor has the best intentions to try to help him, Tinus is no longer willing to risk the destructive side effects associated with chemo. 

Does this mean he is not fighting back?  He is fighting, trust me, he is fighting.  But how?

In June last year CNN ran a story under the headline:  

“No more chemo: Docs say it's not so far-fetched.” 

Another article the year before that in Time Magazine read:  

“On the Horizon at Last, Cancer Drugs that Harness the Body’s Own Immune System.  Researchers have long hoped to corral the immune system in the war on cancer. Now, antibody-based compounds show new promise. “

Tinus has opted for what is generally known as “alternative therapies.”  Naturopaths believe that cancer is not an illness but the symptoms of an illness.  Causes of illness are toxins in the body, lack of oxygen and a weak or deficient immune system.  As you read this you may think quackery or whatever, but it dawned on me at some point, if chemotherapy has to be judged under the same criteria as the thing people normally have against alternative therapies the picture is pretty much the same:  Does it always cure cancer?  No. 

Tinus is currently undergoing an intense body detox by managing what we eat in conjunction with the Three Wells Therapy.  Three Wells produces food supplements. The special composition of the nutritional supplements was designed by Rob Nijsen, father of a child with autism. The nutritional supplement must be administrated in a specific order (in accordance with a protocol), step by step. The goal of the treatment is to support the immune system. This method is not scientifically proven.  Read more about this here:More about Three Wells

In order to help increase the oxygen levels in his body he is undergoing ozone therapy twice a week.  The idea exists that cancer cells thrive in low-oxygen environments.  It is believed that adding oxygen to the body creates an oxygen-rich condition in which cancer cells cannot survive. Supporters of this type of treatment claim that it increases the efficiency of all cells in the body and increases energy, promotes the production of antioxidants, and enhances the immune system.  Ozone is forced into a pint of blood that has been drawn from him using special equipment. The blood is then returned to his body. The use of ozone in small amounts under controlled conditions for treating limited parts of the body has shown some success in mainstream medical research studies.

The third therapy he is undergoing is Quantum Biofeedback resonance.  This therapy was once accredited by the FDA but the accreditation has since been revoked.  Sale of some of the specific machines used for this therapy had been banned in the USA, Canada, Europe and even South Africa.  In amongst all the media hype surrounding the inventor (heavily criticised for being a transvestite) I could find very little about the actual technical workings of these machines themselves. Quite often people add the word quantum to something they can’t quite explain but here is a short explanation by a practitioner:

“It scans the patient's body like a virus-scan on a computer, looking for everything from viruses, deficiencies, weaknesses, allergies, abnormalities and food sensitivities. It reports on the biological reactivity and resonance in your body and indicates needs, dysfunctions and vulnerabilities. The information provided is fundamentally different from X-rays, blood tests, etc.., as it tells us about the energetic state of your body and the direction in which the body is focusing its energy.”

Something I know is that one doesn't have to believe in something for it to work or to be true.  SO this is the way Tinus is fighting cancer.  What I have written about here is not all, there are numerous other things; we've discovered that most of the local bottled water has a ph of lower than 7, so we drink only a specific type of bottled water and he bought a water alkalising unit.  He drinks spoonfuls of apple cider vinegar at mealtimes and we use sacred frankincense oil (this I believe in) he meditates and read inspiring cure yourself type books.  No meat, no milk products no gluten and more and more and more…

 You must be weary of reading now – I am weary of writing.  Does this sound like the desperate measures of a desperate man?  It is.  He is scared and so am I, we all are.  My two wonderful children are so brave.  We try to make future plans but it feels forced, like laughing at a non-funny joke.  We try to do other things but it’s always there.  So we eat, we pray and we love as that amazing book says:

“Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining it. You must make a mighty effort to keep swimming upward into that happiness forever, to stay afloat on top of it.”
― Elizabeth Gilbert, Eat, Pray, Love

It’s not what you eat

I think I told you I found this quote somewhere:  

“It’s not what you eat – it’s what’s eating you.”   

But eating right – “The right stuff” – is soooo important.  So this, I hope, will help all of you, whether or not you are dealing with cancer; this is practically the recipe to a long a happy life.

So my story today starts in 1931 when a Dr. Otto Warburg was awarded the Nobel prize.  He discovered that cancer is caused by weakened cell respiration due to lack of oxygen at the cellular level.  He also proved that cancer thrives in anaerobic (without oxygen), or acidic, conditions. In other words, the main cause for cancer is acidity of the human body.

Here is the technical bit – but take your time and read it slowly; I believe we have to understand something to take away our fear of it.  So here goes:  In his Nobel Prize winning study, Dr. Warburg illustrated the environment of the cancer cell. According to him, damaged cell respiration causes fermentation, resulting in low pH (acidity) at the cellular level.  Ok so far?  The damaged cells start to ferment causing acidity.

He also wrote about oxygen's relationship to the pH of cancer cells’ internal environment: “Since fermentation was a major metabolic pathway of cancer cells, cancer cells maintain a lower pH, as low as 6.0, due to lactic acid production and elevated CO2.”

HE PROVED CANCER CANNOT GROW NOR DEVELOP IN BODY ALKALINITY OF 7.36. 

He firmly believed that there was a direct relationship between pH and oxygen:  Higher pH (alkaline) means higher concentration of oxygen molecules while lower pH (acidic) means lower concentrations of oxygen.

A normal healthy cell undergoes an adverse change when it can no longer take in oxygen to convert glucose into energy. In the absence of oxygen, the cell reverts to a primal nutritional program to nourish itself by converting glucose through the process of fermentation. The lactic acid produced by fermentation lowers the cell pH (acid/alkaline balance) and destroys the ability of DNA and RNA to control cell division. The cancer cells then begin to multiply. The lactic acid simultaneously causes severe local pain as it destroys cell enzymes. Cancer appears as a rapidly growing external cell covering, with a core of dead cells… And there you have it:  We have known the proven cause, prevention & cure of cancer since 1931:

Eat alkaline forming food

Funny thing is that things which appear acidic e.g. lemon juice and tomato are actually alkalizing foods while food that appears to be alkaline e.g. milk is actually highly acid forming.  For a detailed list on alkalizing foods feel free to Google but here is the bottom line:  All meat and animal products are bad – i.e. acid forming.  But a surprising amount of vegetarian go-to options are also acid forming:  Here is a list of the things we would think are alkaline but are in fact acid forming:

Almond Milk, Black Beans, Chick Peas, Green Peas, Kidney Beans, Lentils, Pinto Beans, Red Beans, Rice Milk, Soy Beans, Soy Milk, White Beans, Cashews, Legumes, Peanut Butter , Peanuts, Pecans, Tahini, Walnuts , Corn, Lentils, Olives, Winter Squash, Blueberries,  Canned or Glazed Fruits, Cranberries, Currants,  Plums, Prunes ….  And my dears the list goes on.  

SO WHAT DO WE EAT??

The key is balance.  We should aim for a 60-40 balance where most of the food we eat will be alkalizing.  Tinus aims for a 80-20 balance, where the 20% is literally left for accidentals, I try my best to ensure that not one thing we eat will contribute towards acidifying his body.  But we have problems like fruit that are highly anti-oxidant e.g. blueberries but which are acid forming, coffee, same thing, high on anti-oxidants but also highly acidifying.  I’ll tell you now how I deal with it – but for you, just remember the balance 60-40.  And please don’t stress – because stress undo all the good you try to do with eating right, so if you love cheese – cheese it up, the happiness factor balances it out :D

Here then are some of the foods I have in our arsenal and links to why:

Broccoli:  http://www.naturalblaze.com/2013/04/broccoli-kills-stem-cells-that-make.html

Mushrooms:  http://www.sciencedaily.com/releases/2011/06/110606092736.htm

Dark chocolate: http://www.livestrong.com/article/465878-what-are-anti-cancer-benefits-of-dark-chocolate/

Red Beets:  http://www.keelynet.com/biology/beets.txt

Rocket (Arugula)  http://www.naturalhealth-solutions.net/healthy-eating/arugula-is-your-best-friend

Babana (with dark patches) http://lifestyle.beiruting.com/2012/bananas-with-dark-patches-on-yellow-skin-anti-deadly-cancer%E2%80%8F/

Green tea and Rooibos mix http://www.foxnews.com/health/2012/10/19/green-tea-anti-cancer-secrets-revealed/ the rooibos ‘cos its yummy and good and I don’t have to say anything else – oh yes, just one thing:  It makes the green tea drinkable : D

Bazil nuts for Selenium but Tinus also takes a Selenium supplement:  http://www.naturalnews.com/016446_selenium_nutrition.html

Spinnach:  http://www.spinachwords.com/anti_cancer.shtml

Honey and cinnamon:  http://www.livestrong.com/article/517771-honey-cinnamon-powder-for-cancer/

There are many more – spring onion, garlic, kale and and and .. but these are the ones we have on a daily basis.  And then our morning smoothie – I have a few standard ingredients and then I may add a few optionals.  But before we start:  Blue berries are our daily basis BUT it is acid forming – actually most fruit are because of the sugar in fruit.  Happily I have discovered that the fat in coconut milk slows down the absorption of the fruit into your blood stream.  http://www.livestrong.com/article/557506-coconut-milk-cancer/

Anti-cancer smoothie:

I use mostly frozen ingredients, it’s great in our summers here, plus easier to have on hand every day.  Just a note – please peel your bananas before you freeze them – if you don’t, you’ll remember that I said you should J

1 cup blue berries / blackberries (or both)

1 cup mixed berries

1 cup young coconut milk

1 banana

Piece (about 7cm) of fresh ginger root chopped small

1 tsp Cinnamon

Optional – if I have – theses always fresh

Melon (cantaloupe)

Red beet

Cucumber

Alpha alpha sprouts

Celery

Blend and serve – in pretty glasses, to enjoy if possible sitting down in your garden or in your favourite place without rushing, thinking how blessed we are to have so many beautiful things on this planet to help us heal and grow – especially the people who love and support us – like you.

It was the worst of Times

It was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair.

Another long stretch of no blogging – so sorry – like I said, sometimes I don’t blog because we’re so happily busy, and sometimes there are the dark days when I don’t dare blog for fear of spewing pain over the lovely white pages waiting to reflect my sadness and despair.  A few diary entries to help us catch up:

18 January:  Happy day.  The results of the bone scan will be available on Sunday, 20 Jan.  One of the highlights for me yesterday was late afternoon:  We drove out and found a sand dune not far from our house, where we could see the airplanes come in to land (on final approach) we listened to Nightwish and watched the planes land and the setting sun painted the sky orange and pink and everywhere around us, and in us and through us swirled delicate ribbons of Octarine.

24 January:  Happy day. Oh my word, I still haven’t posted this – it is an old weakness of mine, unwritten letters used to clutter my desks from home to home.   So on Thursday it was Tinus’ birthday, on Friday we went to his company’s beginning of year function, it was lovely – based on the X-Factor idea, people in the company performed singing, dancing and acting pieces.  Sadly the guys far outshone the girls. Saturday was the appointment with doc, the bone scan result:  “The appearance of the activity at the left humeral head medially with the subtle CT change is probably suggestive of solitary lytic lesion.”

This is very typical of what we are dealing with on a regular basis.  Firstly the doctors are very reluctant to commit to any opinion, and then there are the words.  Having cancer in the family certainly increased our vocabulary.  Anyway, so if you ask Google you will see that a lytic lesion is an area of a bone that has been infected by cancer, or a fungal infection, another type of infection or TB.

       

So we’re still not sure.  On Sunday I had the first meeting with the new South African Women’s Association’s photography club – it was great, really looking forward to seeing where this is going.  On Monday Tinus was scheduled for a biopsy (EBUB), I scrambled around trying to manage the logistics around getting Tinus to the hospital and the kids to and back from school between their various extra murals.  The Monday biopsy was then postponed till Tuesday at which point I decided to let the kids stay home from school for the day.  Sometimes I just wish all the other things can be put on hold so we can focus on this one thing.  The biopsy went fine but I didn’t see the doctor afterwards, appointment scheduled for Saturday.

Tinus said that he now wants to start the chemo even if the doctor thinks he’s got a good chance of removing the cancer in the lower lung by means of surgery.  If he gets surgery now it will be another six weeks before they can start chemo and he doesn’t want to take the risk of waiting any longer. 

Today is Thursday, the Prophet’s birthday, a lovely lazy stay-at-home day.  We actually fled to miss the volumous joyful celebrations we expect to be echoing from the mosque speakers shortly to a lovely little place I’ve recently discovered called Café Retro.  The two of us are sitting here side by side on a sofa with the faces of The Beatles quilted onto it, jazz music playing in the background and the remnants of our two “shots of ginger and honey” on the table in front of us.  (Dis lekkerrr want dis gesond)  Mmm yeah, here and now, life is good.

7 April:  And here we are today; Tinus is busy getting his 3^rd session of chemo in this series - after this they are going to do another PET scan to see if the cancer reacts to the chemo – if it’s going away.  This is so scary.  The worst thing is that you do not actually know if what you’re doing is the right thing.  Everywhere you read about how bad it is to get chemo – how chemo causes cancer to come back stronger (like Tinus’) and that it shortens your life, instead of lengthening it. 

We are trying so hard to eat right, to reduce stress, to be happy.  Surprisingly hard.  A while ago Tinus said to me that after this chemo he’s not going to have any more – irrespective of the outcome – and that scares me.  It feels as if we will choose not to do anything, but you know what, I do think living well is a good strategy.  Interesting point in case:   

We’ve been focusing on the alkaline vs acid food.  Tinus measures the Ph levels of his body every morning; And in spite of us (when I say us I mean me) making sure that we eat the right food some mornings his body Ph is completely acid.  Which is rather demoralizing, but we carry on – fortunately its really easy – I love the pretty food we eat, lots of veggies and fruit, over here of course we can get the most interesting fruit and veggies from all over the world.  I also make sure that we only eat organic, non GM food.  

For the past week we were on holiday in Fujairah.  Eating hotel food – and although you can choose healthy food from the buffet – some people - I don’t specifically want to mention Tinus :p – doesn’t, and when the waiter comes to take our drinks order, the same people would order Sprite or Coke.  Then when we got home we had the weekend at Comic con, where the healthiest thing we could buy was beer ^^ However, this morning, when he did his Ph test it was 9!!! Completely alkaline – my opinion:  De-stressing way more effective than diet in maintaining a good healthy body.    

The drip here next to me has a surprisingly soothing putt putt putt sound, pumping poison into Tinus’ body.  What are we doing?  Is this good, is it working?  Tinus said to me just now he is fine, as long as he’s not in hospital, but as soon as he gets here he gets this ”Oh fuck I’ve got cancer” feeling.  This time around the nausea is less than during the previous series of chemo sessions.  The chemo this time is stronger – they actually keep him overnight, and he’s got this port thingy implanted under his skin to prevent his arteries from decaying too rapidly.  Scary scary scary.  He gets five different anti -nausea medications, as well as an anti-nausea patch, then there are at least nine more bottles and boxes of medication.  At the end of the first week after the chemo, he gets a series of subcutaneous injections to prevent his bones from deteriorating – I don’t think I actually said, but yes, the cancer has spread to his bones.

There is a part of me that wants to stay right here, in this moment in time.  Here in hospital, at the beginning of spring in the desert, Tinus next to me, safely in the hospital bed, happily working on his laptop with the chemo running into his veins.  Here in this moment where we are safe in the knowledge that this could work.  I do not want to move to tomorrow, where Tinus will feel sick and weak, where he will suffer from fever and cold sweats alternately, where his body will hurt and rebel in agony as it try to reject the poison that we fed it.  I do not want to move into that day somewhere after tomorrow’s tomorrow where we know for sure if this was worth it.  

We think we know so much, but we know so little.  We try to believe so hard, and we find it so hard to believe, we try to do what is right, and we do do what we think we know is wrong.  It is not easy, but it rained last night and rain in the desert is always wonderful.  This was doubly special, because it was possibly the last rain of winter – tomorrow will be spring.  Let it be our spring of hope, after the winter of despair.  

It was the best of times

Sunset at Bab al Shams (Gateway of the sun)

  2013. I know a lot of you think when I don’t blog it’s because it’s not going well.  Well, sometimes, a lot of times actually, I’m just having too much fun, seizing the days of brilliant sunshine and floating in bubbles of happiness. 

Bab al Shams in the moontlight

17 January:  Happy day; It is Tinus’ birthday and we’re having a lovely day. The reason why I’m blogging now is because he’s busy getting a bone scan.  So a quick catch-up for those of you who missed the bits in between:  There were more spots … out damned spot … there was the TB and lots of medications but spots are not going away, so doc says let’s take them out .. de ja vu .. operation, took five lymph nodes out some tested positive for cancer, yet another PET scan was scheduled but we had to wait for op scars to heal.  It was Christmas then Lizana and Ulrich came to visit for ten days and it was the best of times:

Having the two of them here was such a treat!  They are part of our Hopefield family, our neighbours and such good friends.  Upon arrival Ulrich announced that they will take care of meals, which couldn’t have been more perfect.  Many of my fondest Hopefield memories feature an afternoon/evening spent with the rest of the family around some interesting and or exotic culinary creations by the master chef extraordinaire team aka Lizana and Ulrich.

On the way here Lizana sat next to someone who said a weekend is all you need to see and do all that there is to see and do here … good response word here : incredulous … Lizana and Ulrich were here for ten days and I think we got about halfway through everything we could have seen and done.  Dubai and the UAE is such an amazing place (how many times have I said that :D ) and there are so many things to experience here that I actually worked out an itinerary to make sure that we get as much out of the time we have together as we can.  I wanted to make it so special, for this was also a holiday for Tinus, in the normal course of living here he sees very little outside of his office walls or boardroom windows.

Lizana and Ulrich in front of the Burj Khalifa

Destination Dubai:

Dear Lizana and Ulrich

Thank you so much for choosing Olivier tours for your vacation operator. 

Please find attached a suggested itinerary.  

27 Dec: Arrival:      05H35 @ DXB followed by lots of hugging and kissing :D Relaxed morning, possible early afternoon nap. (R&R)  We were thinking of sun downers at Bab Al Shams followed by Baskin Robbins (Ibn Battuta Mall) and a night drive home via Shk Zayed rd 

                                      28 Dec: Sunrise from highest building in the world - tickets booked for 06H30

                                       Breakfast at Tiffany’s not available (yet) but perhaps Armani ^^ or one of the many other places.

                                     Possible afternoon nap (R&R) for evening out.  Possible Festival City with water and light show.

                                    29 Dec: Ain trip:  Camel chocolate factory, Camel souq, tea at road side tea shop with ultimate aim for late lunch at Jebal Hafeet which will linger till sunset and then drive home.

30 Dec:  Bastika Heritage tour – tickets booked for 10H30  The tour takes place in old part of Dubai, after tour (which I think includes dates and coffee) we can take an abra (water taxi) to the spice & gold souq, lunch at the creek side café. Possible movie under the stars in the evening at Wafi rooftop garden.

31 Dec: Sharjah Blue souq, Aviation museum, quick trip to the beach to dip our toes in the Persian Gulf and back home for afternoon nap. (R&R)   Desert Drumming – starts at 20H30 … return home next year.

etc etc ...

“Olivier Tours” actually managed to stick to their schedule fairly well.  The strikethrough showed the ones we didn’t do.  I loved the way Lizana would say “When last did you do something for the first time? Oh yes, today, and yesterday, and the day before that.”

Ulrich in the Old Souk

The time passed so quickly – ha ha – I just had this in my head : <disembodied dramatic voice> “… like sand through the hour glass..” get it… sand .. desert… anyway. 

Before we knew it Ulrich had to leave.  His sister and her family moved to Dubai quite recently and on the second to last evening that he spent with us we had a lovely braai at our place with them as well as a long-time friend of Ulrich’s who lives in our area and his family and a few of our friends and parts of their family.  The evening turned out to be so much like the evenings at the Merry Widow, a perfect end to a lovely holiday.

Lizana striking a girly pose in Rak Al Khaima

Lizana stayed on for a couple of days more and it was exactly what I needed, girl time :D  On the last day of Lizana’s stay she was part of one of our more regular experiences – an appointment at the oncologist:

We went to the doc to get the results of Tinus’ most recent PET scan, the one after surgery in December.  He showed us the scan on his computer screen - it lit up like a macabre Christmas tree:  bright lights showing hot spots from his left clavicle to his lower right lung.  His oncologist suggests that we prepare for the worst – because of the lymph nodes all being connected he wants us to consider the possibility that the cancer cells could be spread all over his body and that he would now classify the cancer as aggressive.  And it was the worst of times.