As part of Anja’s ongoing analysis of her illness, the next step after the brochoscopy and CT scan, was to undergo a further scan known as a PET scan. PET stands for Positron Emission Tomography. This scan is more intensive and is done in order to take a deeper look at what is happening within the body.

With a PET scan you first have an injection of a very small amount of a radioactive drug (tracer). The amount of radiation is very small – no more than you have during a normal X-ray. It only stays in the body for a few hours. Depending on which drug you have, the radioactive drug will travel to particular parts of your body. The most common drug is fluorine 18, also known as FDG-18. This is a radioactive version of glucose. When FDG-18 is injected into your body it travels to places where glucose is used for energy. It shows up cancers because they use glucose in a different way from normal tissue. And it will show up changes in tissues that use glucose as their main source of energy for example, the brain. [via]

Unfortunately, this scan was held back for a week, due to some clerical/bookings misunderstandings, but Anja was able to have the PET scan the following week. Another period of apprehension followed as we waited to see the doctor concerning the results of the scan and to be told what treatment would now be able to commence. During this time, Anja has been very weak and having continual problems with her breathing. In her own words, she feels like she has ‘moved her life into slow motion‘ as she can no longer hurry with even the simplest of tasks. Walk slowly, move slowly, breathe slowly and keep calm are all now a part of her daily life. If not, her breathing becomes even more difficult and this can bring on serious periods of coughing. Coughing to the extent that she is gasping for air and almost vomiting in the process. A two-week prescription of a steroid tablet has also helped to control the symptoms, but this cannot be prescribed for too long.

The time to meet with the doctor again finally arrived but again, more news to rock our world. The PET scan gave indications that the cancer may have now spread to Anja’s liver. We sat there in front of the doctor, stunned, as he told us that only a further scan, an MRI, would be able to determine if this was indeed the case. Until the doctor and the cancer team are 100% sure of what they are dealing with, there can be no treatment. We fully apppreciate all that the doctors and the cancer team are doing, and as much as another wait is prevalent as the scan is done - all frustrating and highly stressful - we understand that there is no other choice.

In between the hospital visits and the waiting, life goes on. I am fortunate in that I am able to work from home for the moment and this means I can take care of Anja, who finds it very difficult to get around the house. We have moved our furniture and made lots of changes within the house, which basically means the bedroom has become our little cube of space for 90% of the time. I sit and write this here now as Anja lays in bed beside me. Both of our computers, our TV and other bits and pieces from around the house are now located here. The bathroom is also on this floor, which means Anja does not have to climb up and down stairs. I have taken on all the domestic chores and luckily, my experience as a chef, means we do not go hungry. I probably do not hang the washing as neatly as I should, but hey, it dries, it gets ironed, it gets put away.

Another setback two days ago as Anja had a really serious coughing fit and could not stop for some time. She manged to get to the bathroom and I was able to help her sit on the toilet. You see, as gross as this may seem, when you cough violently like this, you have no control over your other body functions and as Anja so eloquently puts it herself ‘F$%#, I think I’ve pissed myself’. So sitting on the toilet during coughing bouts is the best place to be!

This coughing fit was the worst though. And the inevitable with so much violence being placed on the lungs - blood too. And not just a little bit of blood, but lots and lots. Deep red, clotted and obviously not normal. As much as I hate to watch this happening, I have to in order to be able to report all of this to the doctors when asked. ‘No, not just pink mucus, but deep red clotted blood’. ‘How much? At least half a cup but then it is hard to assess when it is coughed widely all over the bathroom’. And this kind of coughing and the onset of coughing blood, is very, very scary. Anja was coughing, crying and shaking and I was frightened from all the damage I could see this was doing to her. When it was finally over and she could crawl back into bed, she was visibly shaken and scared. A call to the all the medical support we usually refer to was pointless as it was the weekend and out of hours. Many phone calls later and we managed to convince the NHS that this was serious and we needed help. A visit from a doctor and he confirmed that Anja was in need of some hospital treatment and an ambulance was ordered. The thing is, this all takes hours. Anja had her coughing ‘episode’ at 10am and it was 6pm before she finally arrived at the hospital. It makes a for a long, stressful and emotional day. At one point she held my hand tightly and told me she felt like this was it - she was going to die - that moment!

So more tests in hospital, x-rays and blood tests mainly and after being in observation overnight, she was allowed to come home the next morning. She is very fatigued and we are both struggling with all of this. And now we wait for the next scan and more news…