Tag Archives: Chemotherapy

A year on

Certain anniversaries are hollow. One year after your girlfriend dumped you. A year after your dog died. 12 months following your diagnosis of something that caused an epileptic seizure. There is a knowing that it is a significant date, but a need to avoid it. As with all significant dates, there is no escaping it. The calendar does not lie.

I decided well in advance of the 17th of May 2013 that I am taking the day off and will limit my driving. Just to be safe! On the day, a year before, leaving work on Thursday evening at about 6 pm was not out of the ordinary. Feeling tired was also expected as I was working hard and my working hours was often stretched to after 17:00. Waking up under bright lights on a hospital trolley was however unusual in the extreme. A first I can say in all confidence. A first since birth to be precise.

But there I was, dressed up in an angel white hospital gown. There was Anneén, in tears, describing an accident I was involved in on my way back from work. I was? I was. A tow-truck driver found me in my car next to the national highway after he spotted my car under a bridge against a guardrail. My car was not seriously damaged, but I don’t want to think that I might have ended up in the ongoing traffic if the barrier did not bring me to a slow stop. But thinking about all the scenarios remains vague and hazy as I have no memory of these events. Anneén could have told me that I was hit by a meteorite and I would be without any evidence to disprove it. Apparently I had two further seizures before the ambulance arrived. Apparently I was aggressive when they tried to rouse. Apparently so. All the things I just don’t know. It left me puzzled. And so were the doctors initially. Brain Scans done. Bloods taken. The initial diagnosis was Neurocysticercosis. This is described as, “Patients from an endemic areas presenting with seizures, a normal neurological examination and spontaneous resolution after therapy with albendazole”.

But no, this was not accurate. Follow-up MRI Scans showed that rather than going away, the “part” in my left frontal lobe was gaining in size. “It’s a brain tumour” the kind neurosurgeon informed. And so the journey of uncertainty, fear, anxiety and worry started. I was operated on. Twice. A craniotomy was performed to remove the brain tumour on the 6th of August. Two weeks later I had a bit of leakage upstairs and another operation was performed to close the leak in the meninges. So, twice my skull was flapped open and twice the repairs were done. Treatment followed in the form of radiotherapy, chemotherapy and more chemotherapy. Not the journey I was expecting for 2012 and the start of 2013. But so I was.

Long Table RestaurantOne year on. It was not a bad day, it was just day. Anneén and I took the girls in the late afternoon for drinks at the Long Table restaurant that overlooks several wineries and scenic views towards Stellenbosch. It was beautiful, autumn colours painted the landscapes, the red wine was wonderful and we were thankful. Grateful that it is year on. Grateful that we completed the treatment journey, was blessed with a clear MRI Scan in March 2013 and that life reflected how it was prior to May 2012. We have both been working hard, keeping fit and keeping our focus on the immediate future.

But that night it suddenly grabbed me. It all suddenly felt too much. The memories were all too real and dragged me to the ground. It was just awful. Awful, awful, awful. No silver lining, no moment of meaning, no inspiration, no affirmation of life. Drained empty. Fragmented and hollow. I took a hiding and needed shelter. I believe it was grief. I was struck down by
grief of what I lost. Of course there are so much that I did not lose – my family, my life, ability to work and to be productive. And we were touched by the kindness of people who cared and prayed for us. But it robbed me of my illusions of invincibility and good health, my sense of self and being in control of my well-being and abilities, my delusions of immortality. Maybe it killed off those parts of me that I had to let go off, but never had to time or awareness to strangle.

It would not have been the route that I would have chosen, but maybe grief taught me that it is not always about my choices. My choice might only be in the ways that I come to terms with where my life took me. My choice in how I love my wife, my girls, my family and friends. How I engage with my colleagues, the people I consult with, the random strangers that I pass and the world around me. How I find my own path amidst the uncertainty that comes with a brain tumour and the emotional ripples it leaves. How I find my strength in faith, friendship, hardship and discipline. How I stand up when a wave mauls me into the sand. And that I will do.

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Filed under My Brain Tumour and I, Psychology Reflections, This thing called life

The last chemo tablet standing

And there it was. One out of the last 4 Temadol tablets to go. Even though my mind knew the relief to have reached this point, my body was not at the point where it felt it. The milestone can be celebrated on another day. But after the initial 30 days of chemo and radiotherapy and now, with one tablet to go, the past 6 months have been about picking myself up and then going into survival mode for 5 to 7 days, picking myself up again. Only one of today’s 4 left to go.

 

Thinking back, the running helped. In between the treatment stints, putting running shoes on and getting into running mode cleared my mind and my body felt stronger after been knocked down after every 5 day chemo round. I know that people respond differently to chemo. My experience was overwhelming fatigue. I felt the energy draining away and I had to work hard after each “day 4” to get going again. But I have been able to keep pushing myself. Going to work helped. Seeing my colleagues, meeting with clients and knowing when to take it slow helped. Grateful for the odd public holiday, like being able to stay at home yesterday on Worker’s Day to rest properly.

Most of all I am grateful to Anneén who took on so much more on her shoulders when I was down and almost out, when I could not be there for her and our girls. In those times when tiredness dragged me down, Anneén was strong for us. We celebrated when my last MRI scan came back clean and I celebrate her carrying us carrying us through tough and uncertain times. Thanks babes!

One last tablet.

Off you go.

Go do your dark magic.

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A good day to live (aka the clean MRI Scan)

Did it take so long last time? I have had a few, but did it last for “at least half an hour”? Maybe my attention was directed on going into the tunnel previously. I have had MRI Scans at 3 different hospitals now. At Stellenbosch when I was admitted following my first seizure in May 2012, then Somerset-West due to the super-duper scanner to aid diagnosis, another prior to my operation and finally at Panorama to mark out the mask I was due to wear during radiotherapy. Now it came full circle. I am back at  radiology in Stellenbosch to re-scan, 7 months after my craniotomy and the surgery to remove my unwanted Oligodendroglioma. I know, it sounds like a tumour with a degree and a shotgun.

Dressed in a purple frock I lay under the bright hospital lights. An aweful pop songs plays out in the background. The scanner table supporting me feels narrow, the blanket over me soothing. But it does not calm my fear. I grip the tube leading to the small rubber balloon that resembles the pumpy bit of a sphygmomanometer (that measures blood pressure). However in this setting “Pumpy” is my weapon against claustrophobia. You did not know? Yes, I am scared of small spaces – have always been. And while I am at it, I might as well admit my fear of heights. This dates back to before my sense of invincibility was shattered in 2012. Before I was struck out of the blue with the scan images that showed the tumour in my left frontal lobe.

MRI ScannerShe is friendly, reassuring but professional. Her words of support are balanced by skipping through the instructions and a final question about anxiety. “Occasionally”, I lied, feeling the slight dampness in my hand holding the panic button. “We are just behind the glass”. Her smile was more reassuring than her words. I breathe and close my eyes. I will not repeat my previous mistake. Don’t keep your eyes open while sliding into the scanner. Not again! Even though the flat table is mounted low when you get on, it raises up before moving electronically into the tunnel. The closeness to the “roof” triggered my anxieties before and it was only moments between the closing of my chest, my heart kicking against my ribs and my fingers closing in on the panic button for escape. So I close my eyes and feel movement into the open mouth of the machine.

Apart from the “button”, I rely on breathing to calm me down and my imagination to drift into creative ventures. My mind’s eye luckily opens up colours at first, then ideas and memories. I feel my body resting heavier on the surface beneath me, while I am surrounded my noises that sound like a broken drum machine.

Without warning I was moving out. The light on my eyelids told me I was out in the open. Through my ear-plugs I could hear a mumbling voice. These are good to keep the thumping and humming noises at bay during scanning, but do not benefit communication. Furthermore is difficult to make the words out as my head is kept steady with two rests on both sides. Oh yes, time for the injection of “contrast material” that enables a sharper contrast on the scan. Again I close my eyes after the cool sensation in my arm replaces the sharp sting. Breath. Think colours. Drift away to a foreign place out of tunnel-land. Relax.

I carry the CD containing images of my brain in my bag for the next 24 hours. Unopened it stayed. Strangely it did not concern me much. Anneén and I spoke before going to bed about the upcoming appointment with Martin (my neurosurgeon) and both felt at peace. We go over the facts. I have not had further seizures since the first ones; my language skills appear to be intact, no significant praxis problems and my executive functions (i.e. multi-tasking, planning, taking initiative) is as bad as it has always been! And through writing my blog and steadily increasing my running distance I feel a sense of achievement and connection with the world around me. Maybe it was our talk, maybe the awareness that I had no control over the messages encrypted on the CD, but I slept like a baby prior to the day of the big reveal.

Martin is younger than us, but he carries calmness in his eyes and words. I don’t doubt his knowledge or expertise. The fact that he has been inside my head twice before does forge a strange connection. He does not rush when he opens the scan images, both from yesterday’s scan and the ones from before surgery. “It looks very good” he says, “There is a little scaring from the operation and the radiotherapy, but no sign of tumour”. We look closely at the computer screen as he indicates a ventricle that has returned to normal seize and to where the brain has pushed towards the front where the tumour was removed “to fill up the empty space”. I ask what I need to do from here on. Should I scrutinize my diet? Should I watch my alcohol intake? Do I continue to take Epilim? Martin reassures, “Continue with the medication and complete the chemotherapy, but live your life as if you are cured” After all we have been through, this fantastic news seep in slowly. It is gone, no tumour left.

I often look at brain scans with my psychiatrist colleagues at work.
However it is different knowing the one looking back is your own.

I wish I can paint a smile on it.

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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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The end of Act 1

Things have been quiet at StoptheSmellyFlowers HQ over the past few weeks. Words have wanted to be born onto my blog, but business and busy-ness elsewhere sucked me in. My energy reserves had to be preserved as I returned to (allmost) full time work while the chemo tablets were causing leaks in the tank. Thus, it was work and rest, venturing out in the world and falling back on the coach. Living life and preserving energy at the same time.

Act one of treatment is however completed. Six weeks of daily chemo tablets and 30 radiotherapy sessions reached an end yesterday. I have nothing to cross off my treatment list today! No crossing the road to the oncology unit, no reminder on my phone to take my meds, no treatment other than sunshine and going to the movies. It will be a small celebration as there is still further chemotherapy starting at the end of November. But we have completed act 1 and nothing else is needed today than to breath deeply, feel the springtime sun on my skin and to take in the smells and aromas of the world.

I don’t know what you are up to today. If you have a moment, join me for a small celebration by closing your eyes, taking a deep breath, sending me a smile, and think “I am alive”.

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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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