At times I need to remind myself of my life of late, so a brief timeline of events:
- Car accident due to unexpected epileptic seizures (May 2012).
- Diagnosis 2 months later (following follow-up MRI Scan) of a brain tumour (type: glioma)
- Brain Surgery (aka Craniotomy) in early August to remove glioma.
- Follow-up surgery 10 days later to repair a “leak” in the meninges (“breinvlies”).
- Results coming back from biopsies indicating a mixed glioma, although more of the oligodendroglioma kind (good news from a treatment point of view!)
- 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!
- 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.