Tag Archives: Glioma

42/2012

I blame my teachers. Especially my maths teachers. Yes, the guilty should be named and charged. They have left me with a love for numbers for which I am eternally grateful. In a way, they saved me. Well not physically; that would have been weird. But their dedication and motivation opened a door to something I was good at. And at times I needed to be good at something.

We moved about quite a bit as a family when I was growing up. After 7 years in a small town called Harrismith in the Eastern Free State (South Africa), we moved about between towns for the next 6 years. I therefore attended 4 different primary schools. Needless to say, I often felt like an outsider as I had to make new friends, get use to a new school and teachers. In addition, I was not good at sport then – something that a young boy can usually fall back on. Then Mr Wright entered the scene when I was age 11. For the next 2 years he was my maths teacher at Willem Postma Primary School (Bloemfontein). With a patient and calm approach he made the world of numbers accessible. I can’t recall how good my marks were, but I found confidence in it. Mr Wright was an older teacher and he made time to teach us about life and history. I was mesmerised when he told us about Napoleon and wrote in chalk on the black board, “Able was I ere I saw Elba”.

And then we moved again. At least by age 13 I was of bigger build and as part of the next transformation I gave up a heavy burden I was carrying since age 2 and a 1/2. I stopped wearing glasses. Before, everywhere we moved, I was taunted. Often I was the only spectacled child in class. I  Harrismith 1970'sfelt like a kid in glass. As if everyone looked through me. Fragile. At that point I have broken so many pairs (all by accident, I promise!) our medical aid stopped paying for them. So, I stopped, I just quit. I t was a win-win situation. And it worked for me. No more outer burden that automatically uploaded silly nicknames. No more the outsider for looking different. No more looking from the outside through lenses to what everyone else saw.

I don’t know if this helped, but suddenly I was selected for the first rugby team. I was also picked as flank and no more hard labour position as prop. Freedom at last! Did I change so much over one summer holiday? Did I suddenly lost weight with the glasses and increased my running speed? Who knows, but I was in a better space and this continued when I went to Kroonstad High (or secondary) School. Here over the next 5 years I had teachers that I will always remember (for various reasons). Mrs van der Merwe who somehow moulded our Afrikaans cerebrals into an appreciation for the English language. Mr Rossouw who kept our Afrikaans roots solid with poetry and essays, while Mrs Rossouw created a melody from our voices in choir practice. My dad’s science laboratory often filled with smells and sparks (were they all intentional?) and Mrs “Krappie” de Villiers’ attempts to bring Biology alive to me. And Mr Fourie’s hotdog sales during break were as popular as his Technical Drawing classes. He also coached our rugby team at the start of high school and we were a pretty decent outfit despite the hotdogs!

And then Mrs Gerber, later Mrs Sim, who shaped our mathematical skills. Looking back at all my schooling, she must win the price for giving the most homework. And that is apart from her extra classes prior to major exams. In retrospect I am grateful to her. Not only did it provide me with something that I could be good at and motivated a dedication to what is important. I believe that it shaped my mind in a way of thinking that is interested in patterns, in what is sensible and meaningful. At the time it influenced the suggestion that I should go into engineering, but I could never exclude the humanities and working with people. It must be great to design a bridge, but building relationships between people is much more satisfying. Working with people who suffered head injuries, might have difficulty with memory and translating the numbers from neuropsychology into meaningful constructs for their daily lives tick my own meaning box.

I do acknowledge the limitations of numbers and don’t regard myself as a numerologist of some sorts. I did not believe the Mayan prophecy that the world would end on the 21st of December 2012, although my world dramatically changed in 2012. Still, there is something interesting about specific numbers in one’s history and possible numerical intervals. But should I read more into it? Someone said that the average age for a diagnosis of a glioma for a male is 42 (or between late 30’s and mid 40’s). I had my first seizure a month prior to my 42nd birthday. Half this number and it takes my back to my age of 21 when my brother died. My grandfather, whom I am named after, passed away at age 85 (21 times 4 plus 1). Should I read something into these numbers and the possible repetition of 21? Should I be weary of age 63 when the next 21 year cycle comes to an end?

I don’t think so.

For now, I am with Douglas Adams. Maybe the amazingly accurate answer to Life, the Universe and Everything is 42. Nothing more. Just that. Where I am at.

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Chemo Again

There has been a break of 3 weeks since I completed my radiotherapy and first 6 weeks of chemotherapy. My chemical holiday! It was good to have the break and not do my daily 40 second walk to the oncology unit across the street. If I turned a blind eye for the events of the past 6 months (I missed my 6 month anniversary!) as well the bit of hair loss on the sides of my forehead (not too bad I must add), it almost felt like life returned to normal. I was driving, working too hard, meeting friends for birthday lunches and trying to sort out a few plans for the summer holidays and Christmas.

But, the day had come to start my second round of medication . This time the higher 400 mg gram dosage for 5 days on, three weeks off, 5 days on, three weeks off and so forth for 6 months. I feel a bit like a patient again. Luckily no nausea, but swallowing pills are still not my thing. And it is bringing back the fatigue, or I am just working too hard? I don’t know, but I am cutting open the Temodal packets and looking at the 4 tablets in my hand. Each of them, costing just slightly less than what we pay our cleaning lady per month (for 8 days per month, excluding extra time with our kids). I should be grateful for the treatment that I am receiving, make no mistake I am. Both for the meds and the medical aid that covers it. However, it still shocks me. Medication is obviously something does rank up there with costly luxuries, but it is should also sustain and save lives. I am aware that my fellow countrymen might have access through state hospitals or alternatively to generic options. But still. In a country where the life expectancy is 52, you should not pay R21918.20 for 20 tablets per month. Maybe I am mixing my causes, but it appears like the gulf between capitalism and humanity is cranked further apart by cost for things like this. Or is that just the cost of living?

I am feeling like a patient again, but not so much that I don’t want to fight on …

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Radio C.H.E.M.O.

At times I need to remind myself of my life of late, so a brief timeline of events:

  1. Car accident due to unexpected epileptic seizures (May 2012).
  2. Diagnosis 2 months later (following follow-up MRI Scan) of a brain tumour (type: glioma)
  3. Brain Surgery (aka Craniotomy) in early August to remove glioma.
  4. Follow-up surgery 10 days later to repair a “leak” in the meninges (“breinvlies”).
  5. Results coming back from biopsies indicating a mixed glioma, although more of the oligodendroglioma kind (good news from a treatment point of view!)
  6. Starting radiotherapy (5 days a week) and chemotherapy tablets (daily) on 19 September 2012

Radio C.H.E.M.O. does not carry the cool factor of Roger Water’s Radio K.A.O.S. Nor does it attempt to show the influence of mass media on our fears and alienation. It is however the next chapter in my journey. I was actually planning to write about a weekend away at Betty’s Bay and the 2 whales we spotted swimming close to shore. But my energy levels were low, my fingers numb and the words stayed thoughts. And I broke a tooth. But I will re-visit them – it is important to write about whales.

Following my initial diagnosis in May (following an unexpected onset of 3 epileptic seizures), I had a follow-up MRI scan in July 2012. This confirmed that the underlying problem was a brain tumour and not something due to alien abduction. I was operated on in early August to remove the tumour. Even though this was successful (they say it was the size of a golf ball), a second operation was required as the swelling on the outside of my head indicated an underlying “leak”. So, for a second time everything (including my skull) had to be “opened up” in order to repair a small hole in the meninges that is not possible to heal itself. I have since seen that Monty Python image of an open head way too much in my mind! Given that the neurosurgeon operated twice on the same area, I am thankful that my head has not started to resemble a spider web.

Thereafter the doctor ordered rest. And I rested.

As I was due to start with my radiotherapy and chemotherapy after the middle of September, I returned to my practice in order to do some part time work. I benefitted greatly from this. It was not only about being productive again and getting more order and routine. It was fantastic to spend time with my colleagues and to get out from my protective shell and face the real world. It is easy to forget how the structures that we have built over time carry (in part) our identities, our well-being and how when they fall away, something of ourselves fall away. It was good to be back. It felt meaningful to work with people and the issues that threatened their meanings.

But it was not only about getting back to my old life. It was also about the building across the road. It is strange, but the oncology unit that provides me with radiotherapy and chemo tablets are literally across the road from our clinic. So, it is a 40 second walk there for my daily dose. Even though I specialise in area that relate to the functioning of the brain (such as memory) and brain injury, it has been a whole new world for me personally and professionally to enter into the world of interventions that relate to brain tumours.

Here is how it worked. I first went for a mask fitting. Not the Phantom of the Opera or Freddie Kruger types, but something that initially looked like a white plastic sheet with diamond shaped holes. Almost like what paw-paws (aka papayas) are wrapped in at the local shop. This was heated and was placed over my face to slowly take on the shape of my face and head. Now, I might have mentioned my claustrophobia issues before, but I was already thinking about wearing this gadget for my radiotherapy sessions … I did not like it!

Image
My radiotherapy mask (do I look fat in this?!)

It has now been 14 (out of 30) radiotherapy sessions and loads of little chemo tablets that I take daily. I don’t know how other people who receive similar treatments experience it, but I remind myself daily that I am not only doing this for myself. That made it bearable the first time the mask was placed on. Or rather when I was strapped into it. That was the worst one. Knowing I should lie still, but feeling trapped and barely being able to swallow. Claustrophobia! But I bore it out. And it became easier with the supportive clinicians and highlighting each date with a bright orange marker.

My oncologist asked me today if my hair has started falling out. Well, it is hard to tell given that it is so short. But I think the little fellows are hanging in there. As I do. And people have been very kind in their comments, saying that I look well and that I have colour in my face (they don’t say which colour though!). But in general I have felt well, apart from the first few nauseas days. The worst symptom is the tiredness and being aware that I need to take things easy. I miss running/jogging – I have just not had the strength to start again since my two half marathons in May. I miss running between the vineyards and mountains. I miss the release of stress it gave me. But I will do it again. For now, I am thankful for all the support and that I can appreciate every moment with my family.

And it is turning slowly to Spring; the time when life starts to show itself again.

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The 10 things I do not want to regret

It has been scary at times. And serious. I suppose when life enters any unknown territory, it can be or will be. Especially if the map states: “Brain Tumour”.

But all has not been serious. We’ve had our laughs (sometimes in-between tears), drank good wine with wonderful friends and appreciated beautiful moments that might have been lost before. It made us think about what is important in life. If you should read sentences that start with the words “Life expectancy …” that relates to you, you would probably do the same.

But let’s leave that type of serious talk for another day. The sun is shining in Stellenbosch, it feels almost warm, there are fluffy white clouds in the blue sky and we are edging towards spring. The season for new starts. So, some thoughts about priorities, or maybe I should say “The things I never want to regret”.

1.     Time with our 2 girls – when we were told that I have a serious illness, the thought that I may not see my girls (age 5 and 7) growing up or be there for them in future times, hit me the hardest. Of all my fears and insecurities that is the toughest demon to face. We cannot share the full account of my diagnosis with them, but try to use their language to create meanings that is helpful to them. An example is that “Daddy went to hospital for an operation as something was making him feel dizzy”.

Dad and his 2 girls

I came to appreciate the importance to steal moments that I did not in the past. Just, spending a few more seconds here and there, making them laugh, appreciating what they do and telling them that I love them regularly.

2.     Growing with Anneén – it so easy to take for granted that life will just continue in a certain way and that one day you will be that couple sitting on the stoep (porch). Suddenly there was a question mark, the certainty shadowed by doubt. I know that no one knows what challenges tomorrow will bring, but having gone through the last 3 months made it clearer that life needs to be lived with the ones we love, the need to grow together and to appreciate all of it more.

3.     Living a healthy life. I thought I was quite healthy this year. I ran two half marathons, enjoyed my work and was working hard, but in a balanced way. I never before had to take medication apart from the odd flu, cold or that dreadful chicken pox in 2006. Even my family tree reflects by large people living to a good old age and relatively few serious illnesses. All of a sudden, for some inexplicable reason, I was a patient, underwent surgery (twice!), was taking medication and supplements, and juicing vegetables and fruits. I need to and want to get back to embracing life, to exercise, to feel and eat healthy and to inspire others to do so.

4.     Being able to travel – at present I am content to stay local and get well. But I would love to see Barcelona, Rome and South America. But not only places abroad. I want to connect with more of South Africa again. Especially after 8 years away with only childhood memories of certain places we use to visit. I would love to show my girls wildlife and animals that are not kept in zoos, but that are roaming free.

5.     To be a better cook– I blame that old devil called laziness for this. Not only will taking on a more healthy approach to cooking be beneficial to my health, but I respect people

Lunch at Babylonstoren

who are able to think about fruit, vegetables, meat and spices and bring it together in a feast. I want to be one of them! Was wine on that list? Well, it is now!   

6.     To appreciate and enjoy the beauty of life – Life comes with its hardship (see “Brain Tumour” roadmap as example) and we suffer painful losses. But life and the world around us provide us with beauty, amazing stories and sensory input that are not possible on any other planet known to mankind. To breathe deeply, smell, listen carefully, touch softly and look closely may open up worlds within my world that I may miss. Carpe diem! That reminds me. I need to get to the sea more. We are so lucky to live close to the Atlantic and to be in the ocean remains one of my greatest pleasures and experiences of freedom.  

7.     To spend time with friends and positive people – It has been such a blessing to receive support and kindness from people both locally and abroad. I know this, and often spoke about it to clients and patients, but I don’t know how you deal with hardships on your own. Not that I think you won’t be able to manage some of it, but to truly get through it and to stay emotionally strong requires a team effort. Time with friends and small gestures has carried us when we could not carry ourselves or each other. 

8.     To see Leonard Cohen live – Is he ever going to come to Cape Town? Come on people, we have had all the other geriatrics!!

9.     To continue to love and enjoy what I do for a living – I have always value the importance of an occupation, to be able to love my work and having colleagues I can relate to. Whenever this was not happening in the past, I had to look at myself, evaluate my practice or ask questions about the set-up. I am very fortunate since returning to South Africa to be able to work at the set-up where I am, for the colleagues I have and to provide something to the lives of others remains a key priority for me.

10.     To drink good coffee and good wine …

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Still standing

There should be another button. Somewhere between “PANIC!” and “ALL’s FINE!”

But there’s nothing. I need more options.

I am somewhere in between, probably more towards “ALL’s FINE!”–based upon how I feel a week after neurosurgery (or craniotomy to be precise). But should I feel like this?

There should be another button. I’m still standing, feeling quite well. Even with almost no (head) hair and a long curly scar on the left side of my head. I don’t think I’m at “PANIC!” stations though.

Maybe I am going too fast. So much has happened in our world since the 17th of May. So many new events, terminology, fears and ideas, friends and shadows came into camp with my brain tumour that I might be out of pace with the rest of the world. Not only me, but for  Anneén and I our worlds have been turned onto its head, rolled down a hill and then tripped by a guy with a long stick trying to break into our garage. So, skip back a week. Back to Monday morning, the 6th of August 2012. Breath in.

Did I tell you I am a Clinical Psychologist?” It seems like I am out of pace again, but this is relevant. Don’t panic! Since 1996 I have worked in a variety of settings, both in South Africa and the United Kingdom. Entering hospitals and frail care units have thus never been a daunting prospect. I have always carried some invisible armour with me. It was academic knowledge, clinical experience, the reliance in a strong team behind me or, in drastic situations, an open approach to whatever might be flung in my direction (luckily these were very uncommon and at worst contained old sausages). I have been with people in dark places. At times with uncontained emotions. Or memories of past events that created haunted backdrops to their lives. At times I sat with them and their stories and listened to how anxiety crippled them or kept them captive from living into their potential and the world outside perceived borders. At times, it was just physically dark and cold. But these places, situations and people with all their pasts, presents and futures were not threatening. I was OK. I was the expert to help them and had something to offer. At the very least, I could be with them. Hold a hand, be present in their darkness or consult with the staff looking after them, call in a team with expertise and care. I was OK. No need for extra buttons.

But this Monday was different. It was I dressed in a hospital frog (should that be frock?!), with blue paper pants and wheeled off to the surgery ward. The staff members and medics were now the experts. They wore the friendly smiles, knew where doors are opened, which words to say, how long to stand next to me, when to quietly move away. They were in control and I felt comforted by them. I did not need a panic button, even though I was in hospital as a “proper” patient for only the second time in my life. The first time after the May accident 10 weeks earlier. “Don’t panic”, I told myself.

My anaesthetist was quite memorable. He chatted easily with me and was humoured by my good health history. “Never had it in your life before?” he exclaimed with a puff of some theatrical bewilderment. “We do get some unusual ones, don’t we nurse!” He was warm, friendly and made the dropping off (or going under) fairly unremarkable. Especially as he softy said, just before I lost consciousness, “Sleep well”. No need for a panic button.

Tuesday 7th of August. I am awake, might have been conscious the night before, but now I knew that I woke up. Even more; I am alive and feeling alive. The light through the windows behind me was soft. I had some awareness of rain falling. I was still here, on earth. I felt grounded, for some reason. Almost automatically my left hand went in search of the scene of the intervention, the bit above my left eye. Initially I thought, “They just cut my hair!”, but the plasters reached out to my fingers. They were friendly plasters, protective and like the medics, not sending out any dramatic signals. They were not saying that everything was fine, but not to panic. I felt I was in good hands and in good plasters.

I was very bemused a few years ago in Devon (UK), when we went to see a new dentist for a check up. She was everything that she had to be, but newly qualified (which was more an issue for her than for us!). I have never been bothered much by age difference when I work with clients or patients, but I know it occasionally create discomfort. When I see my neurosurgeon, I also wonder about his age. He is younger than me, but has a relaxed and knowledgeable approach that is reassuring. He has also referred me to additional opinions and my impression is that he is not intimidated by the input of others. I like that in a clinician, as I do in other people.

His view is that the operation went well, but that we will have to follow up with radio-therapy. Unfortunately, it is not solely an oliogodendroglioma as we hoped (the rare type), but a mixed oliogodendro and astrocytoma types glioma. As a few tumour molecules stayed behind, radiotherapy is therefore indicated to take out what unfriendly cells are still with me.

It’s not the best of news, it is not panic stations either. There should be another button. Somewhere between “PANIC!” and “ALL’s FINE!” Maybe it should read, “I am still standing”. For now, that feels enough. That and the support we have received from so many.

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