Eva’s cancer kept returning. Our local ENT-oncologist suggested going to Amsterdam, to the main cancer hospital Antoni van Leeuwenhoek, since they were better equipped, and he thought Eva was a candidate for PDT or photodynamic therapy. ‘What’s that?’ we wondered. He explained, but we didn’t understand how light could treat cancer.
The Antoni van Leeuwenhoek hospital (with the National Cancer Institute) immediately showed light on cancer patient management. You were treated as a person, and the whole management revolved around you. All the appointments with the oncologist, radiologist, anaesthetist, cancer nurse, and others were all scheduled successively on the same day. The receptionist arranged our accommodation in the Guest House, informed us what would be covered by our insurance, and so on. Each appointment ran smoothly into the next. Eva was seen by a series of doctors in training and the senior oncologist. Moreover all the doctors came together immediately to discuss Eva’s case and then all came in to see us to discuss the plan of treatment.
Happy? Well, no, but our confidence and trust rose; Eva even seemed ‘enthusiastic’ for the treatment despite the journey. It all felt so positive and supportive. Such a change from the separate appointments and return consultations at our local hospital (a process that has since changed partly as a result of cooperation with the AvL hospital and the National Cancer Institute). But initially Eva’s cancer proved not treatable by PDT, and she ended up having yet another surgery to remove the new tumour. Nevertheless, Eva remained a patient of the AvL.
A year or so later during one of the regular check-ups, the cancer was back, and our emotions nose-dived. This time PDT was the recommended treatment. How would light work? Well, actually quite simply. A photosensitizing drug is injected into the body; it is absorbed by cells throughout the body, but stays in the cancer cells longer than in normal cells. After a few days the cells are exposed to light, and the photosensitizer converts to an active form of oxygen destroying the cancer cells. It sounds wonderful, but would it work?
We learned that PDT is only suitable for certain types of cancer that are relatively small and shallow or superficial. Eva’s new mouth and throat tumours – there were two – fitted the criteria. However, we had to learn a lot first. We had to prepare clothes, the home, and the car.
Filling someone with a photosensitizer means the person cannot be exposed to light – or at least only to light at a very low intensity. It means avoiding all daylight – totally – at least for the first two weeks.
So we bought thick black clothes, to cover the entire body, black gloves to cover the hands (it was early summer). A thick black balaclava to cover the head totally. Two small slits for the eyes, a small slit for breathing. Very dark wrap-around sunglasses. Protecting the eyes is crucial. Exposure to light in the early days could do serious damage to sight. Now I wish I had pictures of Eva so dressed at this time.
We blacked out the house with black bin-bags on all windows – including some inside windows to prevent light getting to where Eva might be when the front or back door might be opened. Then changing all lightbulbs to put in very low wattage. We had a special light meter to go round and check that in no place was the light more than the specified level. The meter beeped if it was. And we made sure it was well below the limits, especially if a door should be opened letting in extra light.
We would travel up to Amsterdam the day before, so that Eva could have various checks. She would be admitted on the Friday and the injection of Foscan® would be given early on Saturday. We could travel home after some hours. Ah, but the car would have to be blacked out too! How could you drive in such circumstances? We fitted screens to the rear window and rear-seat side windows, but more was not possible. Eva would lie under thick blankets all the way home.
The hospital recommended thick black towels too – why? To cover Eva’s head if she had to use the loo. You can imagine what could happen if Eva walked into to motorway petrol station with a balaclava!
Moreover, we were given special cards to show the authorities if we were stopped on the way for any reason. And an emergency 24-hour telephone number at the hospital.
The day came. Bright sunshine. Not a cloud in the blue sky. Nervous. Anxious. I could feel the tension in my stomach. Eva somewhat laid back, come-what-may. Eva was prepared and at 9 am the doctor came to inject the Foscan®. He had to inject very slowly in a darkened room, but not too dark: he needed to see what he was doing. The photosensitizer would make Eva very hot if injected too fast. The injection took a long time – it seemed like 15-20 minutes. Eva then had to rest in a blackened room. A nurse came in every few minutes to check.
Her arm hurt but she felt ok. The nurses helped her to dress, ensuring that she was completely blacked out. ‘Now I can imagine how a blind person appreciates the world,’ she said, as I helped down to the underground carpark after she had been discharged. We would return in a few days so that the photosensitizer could be activated by laser in the cancer cells. Each journey was exhausting, although the daylight was never so bright as the first journey.
It was not easy walking into the service stations with a balaclava, extremely dark glasses and a black towel over her head. These were anxious moments, but in fact no one ever asked, no one ever stopped us.
Eva lived in the dark for two weeks, and then gradually adjusted to increasing light. A challenging situation was to avoid the light coming through the cat door every time a cat went in or out unexpectedly. We’d blacked out the cat door, much to the creatures’ displeasure. Eventually Eva could venture outside at dusk for ten minutes and then gradually increase the light dose.
PDT seemed to eliminate the two small tumours, which pleased the doctors. But there was a downside – a big one for Eva. She could had great difficulty swallowing – this meant she could only drink or eat with immense difficulty. She had been on liquid food supplements for some time. But this was now a serious issue. More worry and anxiety.
Eva never recovered her ability to swallow, and she was soon on permanent nasal nutrition, day and night. But at least she could still talk. Until the next time.