I is for introduction

The last 6 weeks have been a collection of hospital appointments, tests, numerous prescriptions, diagnosis, shock, disbelief, tears, confusion, determination, organisation, flowers, dates with friends, pain and a lot of baths!

I can't remember the exact date we were told that I had cancer... should it be etched on my brain? Well, it isn't. It was about 3 weeks ago now I guess. I'd had leg pain and a bad cough since July, both of which were seemingly harmless, albeit annoying, symptoms. When it got to September and I lost my voice, and the pain in my leg hadn't subsided, only increased and was causing sleepless nights, despite having physio, I decided to go back to the doctors again. I was given a diagnosis of PMR (sort of rheumatism) and prescribed steroids which I was not happy with for two reasons; I didn't want to be on steroids and I didn't believe that this was the correct diagnosis, not when I read all the information about it and compared it with my symptoms, it just didn't match up. A few days later I went back to the practice and saw a different doctor who seemed to take things more seriously, he wanted to know all the problems I'd had from the beginning and sent me for some x-rays on my chest and hip. That was the turning point because once they saw the x-rays, more tests were requested and done and with each test came more clarity, and unfortunately, bad news.

You know whatever you have is serious by the reactions of the doctors towards you. In the past 6 weeks we have sat in several small, dull consultation rooms and been looked at with concerned, sympathetic eyes by nurses and doctors. Although I do understand their behaviour, I also think it could be more dynamic; don't just sit there looking at me with sad eyes! Tell me some strategies for dealing with it, explain what the next steps are, answer questions but don't just wait for me to fill the silence. Sometimes I felt as if I should be comforting them!

I've had x-rays, CT scans, heart films, blood tests, an MRI, a PET scan and a biopsy. On Monday 10th October we went back to the hospital to get the final results of the biopsy to see what type of cancer it was. By this time, we knew it was cancer, it was in my lungs, the bones in my hips and in my lymph gland in my neck. The lung specialist told us it was stage 4 lung cancer, treatable but not curable. Like I said, it wasn't a complete surprise, the worst shock had been maybe two weeks earlier when the C-word had been thrown out there for the first time. However, the 'terminal' word was the killer (not the best word to use... or is it?!). If you know you have cancer which has spread, and it's in your bones then you do know it is serious, but when the doctors actually tell you that you are effectively going to die of cancer, it is a confronting moment. I don't know how you are supposed to react, there is no set way of course, but we didn't cry. I think Ed might have welled up, but I was just focused on the next step. So what do we do about it?

The doctors still needed further tests to be done on the tissue from the biopsy to determine which type of lung cancer it is; small or big cell. Based on that, they can establish which type of treatment is best. Apparently it's an 80:20 split : 80% of patients have one sort which is treated by chemo and 20% have another sort which can be treated by immunotherapy which is tablets and preferable to chemo because it targets the cancer cells much more specifically and is less harsh on the healthy cells so you have fewer side effects.

So, I had to wait another few days for the treatment plan.... I was getting impatient. When I got back from England I got a call that I could come in to discuss the results. It appears that I am not in the 80% ... or the 20%!.. Within the 20% there is a 'splinter group' or rebel faction as I am going to refer to it, which does not fall within the parameters of 20% cell make up. I am within a 2% group whose cell DNA mutation is different and therefore needs different treatment, which is not done in Utrecht. My test results and records were sent to several hospitals all over the Netherlands, and the conclusion is that I am going to be dealt with by Antoni van Leeuwenhoekziekenhuis in Amsterdam. They are a leading hospital in cancer research and treatment in the Netherlands and so I am in the best place. Does this make me feel any better?! I suppose it comes down to how you interpret the word 'special'... you get special treatment for being a special case, but there is no security because these treatments haven't been around for years so there are lots of unknowns. Specialist treatment is good, but I'm not sure I want to be a guinea pig. In the end, I don't have a choice, so I need to just suck it up and get on with it!