16. My First Scan

So here I am finally picking up my melanoma story at the point where I had left it (post 12), as the events were unfolding in June 2014. Apologies for the backwards and forwards in the story, which are due to the fact that I have been writing at the same time as the situation has been rapidly changing. From my previous posts we already know that things got in fact an awful lot worse than what back in June last year really seemed like the worst-case scenario: that melanoma cancer cells could have spread to a lymph node in my neck. 

My parents arrived to London on 19 June 2014 for a week’s holiday which obviously turned out to be a lot more intense than they had anticipated. I pick them up at the airport and once we get home (they are staying at my brother’s place for their stay) I finally bring them up to speed. I tell them that I have a swollen lymph node to the side of my neck which is causing concern and is under investigation due to my recent history of skin cancer. I tell them that I had a FNA procedure which has been ‘inconclusive' and that I have two important appointments the following week, which will leave no shadow of a doubt on the whole picture: 1. a day surgery for excision biopsy of the swollen lymph node (analysis under a microscope will check for the presence of melanoma cells); 2. a total body PET scan which will check for the presence of any tumours anywhere in my body (distant metastases).

I have already talked about the initial difficulty and the importance of sharing with your loved ones the upsetting news that you are dealing with cancer. Whilst it is everyone's personal choice how soon to share any cancer investigations underway or diagnosis with anyone, I certainly felt better after talking to my parents. They are very strong people (or at least they try to be for me). Their response is very 'matter of fact’ and 'drama-free' (or at least that's what they show me). They tell me to keep calm and trust the doctors, do whatever I need to do and have faith that things will be OK. We try to spend a relaxing week end, shopping and eating out without talking too much about the scan and surgical procedure I will have the following week (the selfie below was during our shopping trip at John Lewis!). 

I go for the PET scan on the following Tuesday morning. I have arranged to meet my parents afterwards as I told them there is no point in them coming with me early and waiting in the clinic for hours. I am not very nervous, I am glad in a way that this scan will give us some very important and clear information. The radiology clinic is one of those posh clinics in Harley street (courtesy of my private health insurance) which I have already described: so grand, so modern, and yet just as depressing as any hospital can be. This is my first body scan, the first time I am to enter a large round tube resembling a spaceship and lie in there perfectly still for 45 minutes. This is not a natural way to spend your free time by any standards! The PET scan has an additional twist: they inject you with a radioactive tracer, this is a substance which will indicate the level of metabolic activity of the tissue around your body and the scan will pick up any abnormalities. The tracer takes about one hour from injection to reach tissues all over your body, so you are to wait for that one hour period, lying on a bed in a little room by yourself and you cannot do anything during that time, I mean anything at all, so that the flow of the tracer through your body is not affected or distorted. They ask you to switch your smartphone off, imagine that! You cannot even read as that would also make your brain work harder and change the blood supply around your body. You can only lie and wait, and listen to music from a CD which they play for you if you wish. 

I get changed into the hospital gown, the nurse comes to insert the cannula in my vein for the injection of the tracer, she is very young and friendly, it’s all done very quickly, then she tells me that they will collect me for the scan in about one hour’s time, and leaves. I realise that the next hour is going to be the most surreal time I have had in a long time and I decide that the best course of action is to try and sleep! This would make the best use of my time. And I do actually manage to sleep a little, I am not sure how long but what I know is that the time I am waiting gets longer and longer and it must certainly be over one hour (there is no clock in there room by the way). I keep waiting for what seems to be more like two hours and nothing happens. I am tempted to call for a nurse and when I am about to do it, they finally come in. I immediately ask the time and in fact I was right, I had been in that room for almost 2 hours! I ask why. They say that they had a problem with a previous scan which had to be repeated. I accept that answer but when they bring me in the scan room and I lie on the bed and they are ready to start a legitimate doubt comes to my mind: will the tracer with which I have been injected two hours before still be effective? Are we still good to go ahead? I ask the question. They explain to me that they have a time window to commence the scan of between one hour to two hours after the injection, so I am towards the upper end but still OK. This makes sense but I remember (by now feeling a little drugged up and spaced out) thinking in the back of my mind ‘I bet that’s a lie and the scan will not be valid’, but there is no point in objecting to anything, I am powerless in their hands, I say nothing and the bed I am lying on slowly slides inside the tube.

So what do you do whilst lying inside a scan machine? Again the pragmatic side of me would recommend a nap, one might as well rest whilst they are forced to be lying still. But really this is a hard one to take. Whilst the scans are painless, it is not necessarily comfortable to be lying perfectly still on your back, but more importantly whilst you are in the scan machine you really cannot help but thinking about the reason WHY you are there. And you are in that spaceship which is not a spaceship because they are checking for the presence of malignant tumours in your body, this is not a very nice thought. It forces you to look at your disease right in its face. So I resolve to follow my other plan: every time I am in a scan machine (and I have been several times following that first scan) I do the only other sensible thing there is to do in such circumstances, the only other meaningful way to spend that time: I pray.

I come out the scan, get back to the next door room and I quickly get dressed, I cannot wait to get out and breathe some fresh air, also I am thinking about my parents waiting for me. We had arranged to meet somewhere near the radiology clinic, close to where they get off the bus, on Baker street. Given my extra hour wait for the scan I am now running much later than I thought I would be and I am over one hour delayed on the time we planned to meet. I leave the clinic in a rush, when asked I say that I don’t need to wait for my own copy of the scan on a CD (what on earth would I do with that) and I can pick that up from the oncologist the following week. I am mentally shattered, as strong as I try to be, this has been an extremely intense experience. I literally run to meet my parents, it’s lunch time by then and we are all hungry when we finally meet, best thing to do is to go for a pub lunch.   

Shopping with my parents on 22 June 2014

15. Embracing Life (and my new self) after a Stage 4 Cancer Diagnosis

May 2015. I am finding it difficult to get back to my Blog. I have been thinking about why that may be the case. It's certainly not a matter of finding the time. I wrote most of the Blog so far in September and October last year. That was after recovering from my neck dissection surgery and before progressing to stage 4 cancer. So at that time I was (for a short while) back to work and pretty much back to leading a very full and hectic life, I was back to exercising, to Yoga and even Salsa dancing; back to my social outings with friends, and on the top of it, several cancer-related medical appointments now featured in my diary, including visits with the dermatologist, oncologist, GP... follow ups with the surgeon... physiotherapy, counselling... consultations with complementary medicine practitioners... I was busy! I certainly had limited time to write but I still found the time (usually late at night) and I remember really enjoying the therapeutic value of writing the Blog.

Now I have more time. I have been off work for several months and I have time. It must be said though that being on the top of my various medical appointments and health management is time consuming (having cancer is like having a job, you must be very organised and employ good project management skills, I may write about this in the future). Moreover, there are often times when I feel totally drained with no energy to even think straight, let alone write. Nonetheless I still have time that I could dedicate to writing, more so than I used to, but still I don't do it. So I kept asking myself why. And I think the answer has come to me. To some extent, I am a different person to what I was before progressing to stage 4 cancer and I cannot just pick up the story where I left it and keep writing. I need personal time to adjust to my new self. The tone I want to use, what goes through my mind, what I want to express, have changed. 

During the months in which I did not write, between the end of November 2014 and February 2015, I went through hell. I did not write as I am human so I could not really fully process and accept in my mind what the oncologist had told me: that there was only 1 in 3 chances that the only drug which could save me would work. No one wants to write 'I am very ill and I may die soon', and post it online for that matter. At least I didn't. Besides, most of the time during those months I was simply too sick to do anything. 

Now that things are slowly getting better and I am in a much better place, I have more strength, more energy, more hopes for the future, but I look back and I realise I have changed. I have faced death, I went through debilitating surgeries, I have suffered pain, I have lost some of the innocence I had within me, I have lost the illogical but innate conviction that my life would be long. I need to give myself time to adjust, learn to slowly fully embrace my life again. 

If there is a defining moment in my life, a before-and-after moment, that certainly is when they told me I had malignant tumours in my bones and liver, and my entire world collapsed in that moment. 19 November 2014. Before that day I guess I could not have named 'the worst day of my life' if someone had asked me. Now I have the answer, the day of my stage 4 diagnosis is without a doubt and by far the worst day of my life. By the way that was my third cancer diagnosis in a year! But this time the tumours were not on my skin or lymph nodes, they were in my vital organs, in the frame that supports the movement of my body, and there was no surgery which could help me. In one moment all my dreams for the futures crashed like crystal glasses in tiny pieces. You know in one moment that your life may be a lot shorter than you ever expected, and in any case never the same again. 

I remember when the doctor told me what I was fearing more and more to be the case, but I was hoping and praying it woundn't. I could see the sadness on the face of this young doctor, it was genuine, he said he was sorry. It cannot be good when a doctor tells you he feels sorry. My world collapsed, I broke like a twig in the strong wind. I was inconsolable. My first thought was for my parents, I remember crying out loud how could they expect me to communicate such a thing to my parents, this would totally break their hearts. I felt broken to pieces. 

So I have a defining moment in my life. I sure wish I had a different defining moment, but I cannot deny my history, who I am, what has happened to me and how I feel. It took me some time, without realising it, to embrace again who I am, my new self, in fact love myself more than ever, accept that we don't choose our life, we have to make the most of every day, fight for a better one tomorrow, be grateful for what we have, be kind and gentle with the world around us. And above all, never lose faith. Faith that life is beautiful, that tomorrow will be a good day. 

It took me some time to process and accept the pain and suffering I went through, to adjust to living with an incurable disease (yet treatable thanks to today's amazing advances). Now I am ready to go ahead. Ready to rationalise the disease and embrace and love life to the fullest. Love myself as a human being with his human history, more than ever. Ready therefore also to get back to writing my blog, knowing what I want to say, and saying it with all my heart.

Looking ahead - 16 May 2015