18. Crying for help: from neck dissection to stage IV

The time after my neck dissection surgery is the time when I started writing this Blog. It was September 2014. I was recovering exceptionally well from the surgery and I was gradually going back to a normal life, I even went on a holiday to Greece, and on the whole I was feeling positive about the situation and confident about my future. Then things started to deteriorate and the worst months of my life so far were around the corner. I actually feel in a better and safer place now in spite of everything I have been through since then. Now at least I know where I stand. But those weeks when I started to get ill and no one could tell me why, when I had to cry for help from doctors for weeks before I was eventually diagnosed with metastatic melanoma, were horrendous.

I remember starting to plan my sabbatical. I had decided to take a few months off work, starting from January 2015, and travel, take it easy, spend time with friends, enjoy life to the fullest and recover from the physical and mental shock I had gone through. Obviously none of that ever happened. [Or at least it is all postponed until further notice!].

October 2014. It is actually quite painful to go back with my memory to that period and write about it. The most painful thing was feeling my health deteriorate quickly and not knowing why. I started experincing a raised temperature in the evenings, I had back and muscle pains, I was constantly tired, I occasionally had heavy night sweats and my weight was falling quickly. You would think, when reading this, that given my recent history of cancer my symptoms were sadly pretty damn obvious and clearly indicated some cancer activity. How could the diagnosis be delayed by almost one more month? I suppose, from a patient’s perspective it is never the same thing when you are actually in the middle of it and living a given situation, you don’t necessarily assume you have stage IV metastatic cancer as soon as you have a raised temperature. In addition, bear in mind that my oncologist had more than once told me not to be paranoid and that I should not assume I have mm lung metastases every time I cough, and so on. He had told me to remember that I could still get sick, like people do, and not everything would be cancer-related. Also, I was still recovering from the neck dissection surgery, so I could attribute possibly some pains or discomfort to what my body had gone through. So maybe I can be forgiven for not realising immediately what was happening. However I think it is a great deal more worrying and frustrating that the doctors close to me missed such obvious signs and that I eventually had to beg my GP for hospital admission, so they could finally tell me what was wrong with me. This is how blind the doctors were:

My oncologist (at the time) saw me in the middle of October for my 3 month follow up and did not pick up any of the above mentioned signs or symptoms. I have a letter sent by him to my GP which defines the consultation as ‘unremarkable’ and gives me a new appointment date for January 2015, when I would also have the first scans since surgery in July. In a way I was a little unlucky as things started to get worse just after I saw the oncologist, however I still find it frustrating that he should not have picked up that I was unwell when he saw me. In the end of the day this is his job, to determine whether there is the need for any additional investigations. Nonetheless he saw me (and on the day he saw me there is not the shade of a doubt that I already had metastases in my body) and he just blindly sent me home with quarterly check ups, and scans scheduled in January, as that would have been six months after surgery. I already mentioned that I learnt on my own skin that blindly applying the protocol to every melanoma patient is not what a good oncologist should do. 

The GP I saw at my GP practice was equally blind to my cry for help. During those weeks toward the end of October and in November I visited the GP twice and they were very adamant that I was over-worrying and that all I was experiencing were flue symptoms. I remember the doctor's words when I expressed my worry that there could be some cancer activity: ‘I can reassure you that you are fine and that these are common seasonal flue symptoms’. Now, whist I am sure that many patients visit their GP with flue symptoms, a good doctor should be able to assess the difference among patients. Be able to read the patient in front of them. Given that I had always been very healthy and that in 15 years whilst registered at that GP practice I had never even had a flue, and in light of my recent cancer history, maybe you would think that an alarm bell could have been raised? No. The second time I went to the GP with recurring fever and severe back pain, they finally prescribed me some blood tests. The results of the blood tests took a week to come back. On the basis of those blood tests, which showed very raised inflammation values, I finally managed to be sent to hospital.

My Dermatologist (at the time) completely let me down too. Until then I was happy with him as he had initially identified and removed my skin tumour in December 2013 (even if in fact I had been the one to point it out to him). I was now having skin check ups every 3 months. I went to see him in the middle of October 2014 for the first follow up since my neck surgery. One thing in particular was of concern to me, which I pointed out: since september I had developed a lump on the scar of my neck dissection, which I thought was due to a sature stitch which had been mistekenly left under the skin and then subsequently removed (and to get that removed was also a fight as I had to go my GP first and then back to the surgeon in clinic). So I thought the lump was some kind of skin reaction or infection. And so did the dermatologist, he qualified it as a ‘granuloma’, a kind of chronic inflammation of skin tissue. He injected the lump with topical steroids to try and make it go down. At the same time he thought it was also wise to removed two other moles which he didn’t like the look of, so I had two more excisions, which two weeks later resulted in benign nevi. 

I need to add that at my October consultation, also the oncologist had seen the lump on my neck which he defined as ‘unsightly’ and recommended that the surgeon surgically removed it. As the lump did not go down following the steroid injection but instead kept growing I decided that I did not want to wait another week to see the dermatologist again about it, so I called the surgeon who thankfully was able to see me with no delay and removed it in his clinic. Yet another surgical cut (my body was starting to look like an old patchy teddy bear), but at least I got rid of it. I was particularly happy as in the meanwhile I had also started to think that the infected lump maybe was creating a reaction within my body and producing the fever too. I thought maybe me being unwell was actually caused by that inflammatory tissue. Maybe I would start to feel better after this small surgery.

In the midst of all these health worries and concerns I am trying to keep going with my life, do all the things I enjoy, but I can never fully enjoy anything anymore as I never feel quite alright. I go to parties, I see my friends, go to the theatre, go to the gym and try very gentle exercise, go to Yoga, but nothing is quite right. Now I have very sad memories of those weeks. And when I see pictures of myself from around that time, I can clearly see that I looked very ill. 

One sunday my partner and I feel so at loss with the situation, so desperately helpless that I call the NHS 111, non-emergency medical help line. They give us an immediate appointment with an emergency GP. All he tells me when he hears my symptoms is to have some urgent blood tests (probably the only good advice he could give me as a next step). He notices I have an increased temperature. He thinks it is unlikely that the neck lump may be the cause of it. We leave the hospital and decide to go for a walk in Epping forest, where we can escape the world and be in touch with nature. We ask Mother Nature to heal me, to give ma a sign, a direction.

Finally my GP sends me to a large NHS hospital in north London, on the basis of my blood test results, and they are very quick and efficient there. Within two days they do a lot of tests and on the second day an MRI of my back, and I finally land on the awful truth, that melanoma has metastasised and I have tumours in my bones. I have already talked in post 15 about the unimaginable pain and shock at this diagnosis and I will not go there again. 

I go home, surrounded by friends and family who will always be my support and strength. I write to my oncologist, he is able to see me in two days’ time. When I see him, he tells me something that also my current oncologist often tells me but that I never get used to hearing without a cold shiver going down my back: that my melanoma is very aggressive. He tells me that I will have full body scans as soon as possible and that he believes it is likely that I may have disease elsewhere in the body (he is right on this one as the CT scan will reveal tumours in my liver too). He also tells me that in the meantime he has heard from the surgeon and that the lump removed from my neck, which had gone for biopsy, was also melanoma. I am actually shocked when I hear this, I say ‘bloody hell’ out loud. Tears of sheer terror come to my eyes. It’s like being attacked by a vicious enemy on all fronts at the same time. There are no words which can describe the emotional pain and scarring. 

I still sometimes think that if the oncologist had picked up the signs and brought my scans forward, if the GP had listened to what I was saying to him and sent me to hospital sooner, if the dermatologist had correctly identified the lump on my neck as mm and excised it and thus showed that the disease was active... any of these insights from the doctors could have brought my diagnosis and subsequent treatment forward by some 3 weeks. I am not sure whether any of the subsequent history would be different, and that is also possible. But surely they would have spared me much pain and suffering in addition to what was inevitable. 

Since 19 November 2014 I have been engaged in a full time battle against metastatic malignant melanoma. And yes I have also changed oncologist and dermatologist!! In the next posts I will talk about the treatments I have received so far, the surgery that unfortunately my back needed in February 2015, but especially about how with the support of wonderful people around me (far and distant) and with the faith that tomorrow may be better than today, I am still going ahead with my head high. 

17. Neck Dissection Surgery and how the Existing UK Protocol for Melanoma Patients Failed Me

June 2014. The next step in my story is my surgery for excision and biopsy of the swollen lymph node in my neck. This happens a couple of days after the PET scan. My parents go with me at the hospital for what is a relatively minor surgery under general anaesthetic. It is a pretty quick surgical procedure, I am not ‘asleep' for long, and all being well I am supposed to go home in the evening, which I do. It all happens in a day and it’s pretty uneventful. I remember the surgeon coming to the ward in the morning to see me before the surgery, he circles with a pen the area on my neck where the gland to be excised is, which I find quite funny, and asks me to sign the consent form to the surgery. I will not see the surgeon again later as he enters the theatre after the anaesthetic has kicked in. I realised already at the time of this first minor surgery something that I will be able to confirm in the surgeries that will follow: that there is one doctor whose presence and role are much more prominent than the surgeon’s from the patient’s perspective: the anaesthetist. They are the last doctor whom you see just before surgery when you are in theatre, they are the last person whose eyes you see before you pass out, the last person to address comforting words to you and the one who tells you that they will be there throughout the surgery to ensure that everything will be OK with you. Anaesthetists are the nicest doctors I have ever met, with no exceptions. They have such a key role in the surgery and yet they always show their human side, they know how to empathise with the patient, which is so important for the patient to feel safe.

PET scan and lymph node excision out of the way, I am now ready for the results the following week, when I will have a complete picture of the situation. My parents have had to go back to Italy. I go to to see the oncologist for the results with my partner, we have both been extremely worried and anxious (to say the least), and we have already shed many tears in the previous days, but when it comes to see the doctor we are so mentally prepared to expect the worst that we are not really shocked when we hear the awful diagnosis: I am a stage 3 cancer patient, as melanoma was found in the lymph node. The next step is for me to have a lynphadenectomy or neck dissection, i.e. a major surgery consisting in the complete removal of all the lymph nodes to the right hand side of my neck. Straight from the oncologist’s appointment we also go see the surgeon who will also carry out this second surgery. If we left the oncology clinic feeling heartbroken but hopeful, the surgeon really manages to morally destroy us. Here I start to learn that doctors can be very cold and can lack any empathy with you as a suffering human being and cancer patient. He tells me that this surgery is not a ‘cure’, that we are just trying to stop a 'flow of water' which is flowing already through my body, only in this case it’s not water, it’s cancer. How can anyone say such a horrible thing to a patient who has just being diagnosed with cancer I fail to comprehend. We left the clinic feeling devastated, but with no alternatives other than go on through this surgery and find the strength to fight back. The surgery was planned very quickly, they called me from the hospital the day after and it was all booked to happen in two days’ time, on 5 July 2014. The picture below shows my scar before the surgical staples were removed and few months later (fortunately I heal as quickly as a superhero!). 

At the time of writing, in June 2015 (one year on) I am thinking back about my neck dissection surgery quite a lot, not least as I sometimes suffer from a swollen neck, a condition called lymphodema, which is caused by the lack of lymph nodes and therefore a build up and lymphatic fluids. This condition is not curable and not easy to treat. In my particular case, not only has this surgery left me with this long term side effect, it has also proved unsucessulf and unnecessary, as it did not stop the cancer from spreading internally to the organs. Just at the time of writing, the results of a new study have been published which may confirm what I have experienced in reality on my own skin: a randomised study has found that surgical removal of the lymph nodes surrounding a melanoma tumour after a positive lymph node biopsy (melanoma found in node) does not improve survival (see link below). In other words the side effects may outweigh the benefits of performing such surgery, as it decreases the quality of life of the patient without having any significant impact on their long term survival.  I wonder if the day is not far when complete lymph node removal will be assigned to history and considered a brutal and unnecessary surgery.  The protocol for treating melanoma has certainly been changing dramatically and will change more in the future. What upsets me is that I was not offered this surgery as an option, I was told I had to have it as this is the protocol. Full stop. I wish I had been explained the pros and cos and then it would have been my decisions. On balance, I would have probably chosen to have the surgery, but I would now feel better about it. I tell myself that it was the best thing to do AT THE TIME, but I still feel that patients should be given more options. 

When I was told I had to undergo a lynphaedenectomy, I was also told that there was no drug (systemic) treatment available to me at the time. This is because there were no openings to entry into any medical trials for stage 3 patients and drug treatment is generally only available to stage 4 patients. Considering what has happened to me in the following months I so wish they had started immediately some kind of systemic treatment rather than just carrying out a surgery and then dismiss me with 3 months check ups and 6 months scans. I feel like the protocol has failed me. Whilst I appreciate that the protocol will ‘statistically’ work for the majority of patients and not for all, I believe that there should be more flexibility allowed in it. Expecially given that everyone knows that what is being done now is not perfect, and will evolve, hopefully towards a CURE one day. I wish my oncologist (I have now moved on to another hospital by the way!) had been more focused on me as a patient, a patient with a melanoma which had already shown signs of being aggressive (quick spreading from skin to lymph nodes, very high mitotic rate - and I’ll talk about this some time). And therefore had considered scanning me again sooner after the surgery, say within 3 months, instead of literally and blindly applying the existing protocol and delay the next scan for another 6 months. Before 6 months had passed, the cancer had spread to my liver and bones and in spite of being on a private care surveillance programme with one of the top oncologists in the UK, I had to go to my GP and cry for help and eventually be scanned in my local excellent NHS hospital to unveil the awful thruth. 

During my neck dissection, which was performed by 2 surgeons and took about 5 hours, 25 lymph nodes were removed from my neck. They were all clear. That is to say no other malignant cells were found in any of the tissue removed. I was therefore assigned a cancer stage 3b (see post 5) and told that there was a 60% probability of the cancer spreading in the next ten years. I remember being so relieved at the time, when they told me the encouraging results, I cried a lot, letting finally all the tension come out. But now I have to ask myself, what did this surgery actually do for me? If four lymph nodes had been positive for mm (as an example) then I would have been at stage 3c at that point, instead of 3b, same difference as far as my cancer history is concerned! All that the protocol did for me was help stage my cancer at various points in time, according to the convention in place, but it did not treat the cancer, nor did it improve my health or increase my chances of long term survival.

In summary, in July 2014 this was the care/plan I received: an unnecessary surgery not without long term side effects, no systemic or adjuvant drug treatment available to me, and next scans scheduled far too late (the melanoma was quicker to spread than they had planned to monitor it). It is taking me a lot of positive mental attitude (and a change of hospital/oncology care) to accept how my melanoma story developed, without upsetting myself.  

I wonder whether systemic treatment should be more widely available to stage 3 patients, in and outside trials. A key learning point from my experience is to always push your doctors for more, don’t wait to be offered. Ask whether there are any drug treatments available to you, their pros and cos, and how to access them. Also, ASK TO BE SCANNED SOONER rather than later. I think a CT scan should be offered to all mm patients, including stage 1 and 2 patients. And definitely scanning should happen sooner after a complete lymph node dissection surgery (say after three months). There is no reason (other than cost savings) to wait six months (which is the current guideline) after surgery for a CT scan or not to offer one to stage 1 or stage 2 patients (currently no routine surveillance scans are recommended).  We should challenge the protocol and make it work for us as individuals, we all know that sadly it is not perfect and is evolving, so really each melanoma patient, no matter what stage their cancer is at, should be considered in isolation and be offered for considerations the best care options currently available. 

http://ecancer.org/conference/677-asco-2015/news/7353-asco-2015--extensive-lymph-node-surgery-may-not-be-necessary-for-some-patients-with-melanoma.php

The scar from my neck dissection surgery on 10 July 2014 and 12 August 2014

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

14. Coming Back To My Blog (and to Life)

March 2015. I don't like leaving anything unfinished. This is by no means the only reason that is pushing me to come back to my Blog, however I have to admit that the idea of my narrative abruptly interrupted, and on a very sad note at that, had started to make me feel unease. 

I am happy as I am clearly feeling well enough to have regained my long for tidiness and order (and possibly my sense of humour). Unfortunately, over the last 4 months I have not even thought about my blog (let alone worry about it being unfinished) as I have been too ill with cancer. However it is time to start writing again and, beside a desire to continue the story I do have more serious reasons to resume my Blog. I had stated at the beginning that I wanted to write to: 1. Raise awareness of malignant melanoma (as there is still so much ignorance about skin cancer); 2. Get it off my chest; 3. Update my loved ones about what's going on with me. I can now add a reason number 4. Hopefully be able to tell people who are diagnosed with stage 4 metastatic melanoma not to lose hope. It's undeniably a huge shock and sadly it's an incurable disease, however there have been huge advances in treatments in the last few years, and new drugs are now being tried, which can keep the cancer at bay for long time. There is so much hope, there is so much life to be lived, and however hard the fight is, it must be fought.

Stage 4 diagnosis, 4 months of silence, 4 reasons to write, I ought to start thinking about the significance of this number in my life... (and let's not even mention that I'll be 40 in exactly one year's time)... Forgive my superstition, it's probably to do with my Mediterranean blood.

Over the last 4 months I have been through a lot, I have had to face more than I ever thought I would in my life. More than anyone would wish to their worst enemy. In November 2014, the time of my last post, I got ill and soon discovered that the cancer had spread and metastasised to my liver and bones. When it happened my heart was broken in pieces, my entire world fell apart in an instant. Since then I had a truly awful journey, radiotherapy, immunotherapy with severe side effects, hospitalisations, pain and suffering which I don't wish to remember, I saw death in its face, and to top it all up I underwent more major surgery to my vertebral column in February to fix with metal plates and screws the damage caused by tumours (as awful as it sounds).

I am saying all of the above not because I want to be pitied or have anyone's sympathy. I am saying it because in spite of all of this pain and suffering, all the trauma and abuse that my poor body has gone through... I am now (miraculously I would say) feeling better and the latest scans (“stable”) and blood tests (finally normal or there about!) all point to the fact that the treatment worked its magic and the disease is 'not active' or 'controlled'. 6 weeks from surgery, and I am feeling a little bit like 'myself' again, I am feeling my energy coming back, I am feeling again so much longing for life inside me, and I can see that there is life ahead. That's why I feel I can say to anyone who receives this horrible diagnosis that advanced melanoma is not a death sentence anymore. It’s just the beginning of the hardest fight for your life.

I am also well aware that there is so much uncertainty in my future, and I have to accept that due to the disease as well as the surgeries I went through I will not regain my full physical mobility and power (my neck mobility has been severely reduced, for one), but there is life now and in the future and this is what matters the most, and always will. If I am here now feeling so alive and having hope for a life ahead, it really means that it's always worth fighting and however hard it is, we should never lose hope. Life can be stronger than disease, life can amaze and surprise us.

13. Stage IV

November 2014.  I am still narrating the events which took place in June this year, and I was hoping to continue the story to the present time on more positive tones, writing about how I started to feel better after surgery and how I was planning my life ahead after dealing with cancer, but unfortunately I just had a major set back.

Melanoma has come back and this time has spread into my liver and bones. Not good. It is not operable and I am now a stage 4 cancer patient. I am waiting to hear from my oncologist to confirm therapy and next steps, after more scans and two consultations over the last tremendously difficult seven days. I am at home on painkillers and the wait does not do any good to anxiety levels. I just want to get on with the therapy as soon as possible.

I will come back to all of this when my story develops through my Blog. For now I only know that I need to get out there and fight, with all my mental and physical strength, the hardest battle yet. Every day. And I will.

12. "Inconclusive" results (and diagnostic imaging techniques)

I have had to go back to my tidily filed medical records in order to remind myself of the order in which events unfolded in the month of June. Of course I remember very clearly having the Fine Needle Aspiration (FNA), discussing potential scenarios with the oncologist, my parents’ arrival, having the PET scan, having the swollen lymph node excised, hearing the biopsy results… but somehow all these experiences live each one strongly engrained in my mind but all of them in a blurred time dimension.

Whilst I arranged to see the surgeon and had the FNA done (as described in my previous 2 posts), I had also written to the medical oncologist whom I had met in March (now I just refer to him as 'my oncologist’ but I didn't then) to let him know that I had this situation under investigation. He asks me to go and see him. As expected, my consultation with him is not much fun. He examines the swollen lymph node, he says that there is a strong suspect it may be melanoma, given my prior history. However we will only know after the results of the FNA. As I anticipated, he says that whilst we clearly hope it will not turn out to be mm, I am there to discuss the scenario in which the lymph node does indeed show melanoma cells. In a nutshell, he tell me that should the node show melanoma I will undergo a neck dissection, in line with what the surgeon had already told me (see post 10). This would be performed only on the side of the neck where the affected lymph node is (the right hand side) as the two sides work independently. As I am always hungry for good news, I take the left-ritgh independence to be a very good one. But the reality is that now I am very upset. There is no more hiding from the scenario which is more and more realistically shaping around me. I burst into tears. The oncologist tells me that I am probably upset as people always tend to think about the worst case (dying from the cancer, he means), but that there are many more possible scenarios. I say that actually I have not even thought yet about the worst case scenario (but thanks for reminding me!) but the idea of undergoing such major surgery upsets me. I am so sorry that my body has to pay such a high price for something outside my control. 

The oncologist prescribes me a PET scan (Positron Emission Tomography) of the whole body. This will be able to confirm whether the swollen lymph node is cancerous or not but also to check that (hopefully) there are no other cancer cells elsewhere in the body. This is planned for the following week. At the bottom of this post I have briefly explained some of the different scans available, and for reference I also included the name used for such scans in Italian, as I certainly did not know the difference between a CT scan and an MRI until this year, and I wouldn’t have had the foggiest idea of what a PET scan was! When this started to become common language for me, I found it even harder to always use the right language to tell friends and family in Italy what type of scan I was having done, it all became very confusing! So here they are explained for my own mental clarity.

The day after my oncology visit, my parents are due to arrive to London to visit me for a week. As I mentioned in my previous post, I had so far refrained from sharing with them any of my recent health concerns, as there was no need to worry them with such an uncertain situation. But now, could I pretend that none of that was happening when I saw them? And also a more fundamental question: would it be fairer for them to know or would it be better for their own sake not to know, for the time being? This is a very hard question that everyone facing major health issue such as cancer will face: how soon do you tell your loved ones? I actually knew where I stood on this issue: I just wanted to tell my parents everything, it would be fairer to them and I needed their support. However I found myself arguing with my siblings who disagreed with me and in order to protect our parents (who are not as young as they used to be) would rather I didn’t say anything. Eventually I convinced them that I must do how I feel and whilst I agreed with them not to share anything until that point, now that they are in London I will tell them, without any sense of drama (assuming I can talk with no drama!), that a swollen lymph node in my neck is being investigated and that so far there is nothing to worry about. 

So it’s Thursday 19 June, 2 days after my FNA, my parents are due to land at 8pm at Heathrow and I said I would meet them at the airport. I am hoping throughout the day to get a call from the surgeon with the FNA results, hopefully an all-clear result, so that I could meet my parents with such wonderful news: “great to see you…  and by the way the melanoma has not spread"! In fact the timing with which events unfold is like a card trick of the fate which creates for me one of the most stressful moments I can recall. It’s about 630pm, the flight is on time, I need to shortly start making my way to the airpot… the surgeon has not called… I have been staring at my phone the whole day… then the moment I leave my phone unattended for one minute of course I miss the call for the surgeon! The voice mail message simply says that he has some results and will call again. I have no way to call him back directly as I have his secretary's number but she has gone for the day. My heart is going at 100 beats per minute. what am I supposed to do now? If I go to the airport I am likely to break down as soon as I see my parents, I am not going to be strong enough, I will make them worry even more than necessary… I try to reach my brother on his mobile phone to ask if he could go meet our parents instead of me, but he is out of reach… I am panicking… I wish the doctor had not called at all. Now my results are ready… but I don’t know them. Why does he not call again? I am at work still and I really must make a move, I am talking to my good colleague who is comforting me and trying to make me think straight… 

15 minutes later my telephone rings again, hands shaking, I answer, it’s the surgeon, he tells me results from FNA are ‘inconclusive’. He explains this is neither good nor bad, it simply means that nothing could be told from the sample. I say I was not expecting this as the radiologist had stressed that given the amount of fluid aspired he would have some conclusive results. He says this is the outcome in any case. Next step is for me to have a surgical excision of the lymph node. 

I take a deep breath. I wash my face with cold water. “Inconclusive”. In the end this is good news, it gives me a little time to breath which is what I needed above everything else in that moment. There is nothing more to do for the time being, I just have to go to the airport to meet my mum and dad.  


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X-Ray [Italian: Radiografia]
An X-ray is a diagnostic imaging technique that uses radiation waves (x-rays) to take pictures of your body tissues. As an X-ray beam passes through your body, the body tissues and bones absorb and/or block the beam in varying amounts depending on its density. This creates a shadow that is picked up on film or a sensor placed on the opposite side of the beam. X-rays expose you to a small amount of radiation too small to cause you any harm. However radiation in large doses can be harmful and cause cancer.

Computed tomography (CT or CAT scan) [Italian: Tomografia computerizzata] 
The CT scan is a diagnostic imaging technique that, like traditional x-rays, produces multiple images or pictures of the inside of the body. It generates cross-sectional images which can be reformatted in multiple planes, and can even generate three-dimensional images. CT images of internal organs, bones, soft tissue and blood vessels provide greater detail than traditional x-rays, particularly of soft tissues and blood vessels. Using CT scans of the body radiologists can more easily diagnose problems such as cancer, cardiovascular disease, infectious disease, appendicitis, trauma and musculoskeletal disorders. There is no conclusive evidence that radiation at small amounts delivered by a CT scan causes cancer.

MRI (magnetic resonance imaging) [Italian: Risonanza Magnetica]
MRI scans use a strong magnetic field and radio waves to create pictures, on a computer, of tissues, organs and other structures inside your body. It is commonly used to get detailed pictures of the brain and spinal cord, to detect abnormalities and tumours. MRI scans do not use X-rays so the possible concerns associated with X-ray pictures and CT scans (which use X-rays) are not associated with MRI scans. An ultrasound machine creates images called sonograms by giving off high-frequency sound waves that go through your body. As the sound waves bounce off your organs and tissues, they create echoes. The machine makes these echoes into real-time pictures that can be seen on a computer display screen.

Ultrasound [Italian: Ecografia]
Ultrasound scans use sound waves to create pictures of some soft tissue diseases that do not show up well on x-rays. However, ultrasound images are not as detailed as those from CT or MRI scans. Its use is also limited in some parts of the body because the sound waves cannot go through air (such as in the lungs) or through bone. For some types of ultrasound exams, the transducer (the wand that produces the sound waves and detects echoes) is rubbed over the skin surface. The sound waves pass through the skin and reach the organs underneath. As it uses sound waves and not radiations, this is thought to be a completely safe procedure. 

PET (positron emission tomography) scan [Italian: Tomografia ad Emissione di Positroni] 
A PET scan is an imaging test that uses a radioactive substance called a tracer to look for disease in the body. Compared with other types of scans, the main advantage of a PET scan is that it can indicate how well a particular part of the body (organ or tissue) is working, rather than simply showing what it looks like. PET can be used to diagnose various medical conditions (e.g. cancer), or to find out more about how a condition is developing. Increasingly, PET scans are being combined with another form of imaging such as magnetic resonance imaging (MRI) or computed tomography (CT). By superimposing one scan on top of another, doctors can create very detailed pictures of the body. The amount of radiation used in a PET scan about the same amount as for most CT scans. Short-lived tracers are used so the radiation is gone from your body in about 2-10 hours.

11. Fine Needle Aspiration (as storm clouds gather)

The Fine Needle Aspiration (FNA) is done at a radiology clinic in Harley street, which is also where the oncology centre that I attend is. I realised by now that Harley street is the heart of private medical health in London, with ultra posh clinics equipped with ultra modern technology hosted by imposing refurbished Georgian properties. The high ceilings, the solid wood doors and exposed beams, combined with the impeccably dressed and spoken staff and the fancy technology, they all makes you feel like you will get the best medical care out there… yet the overwhelming feeling for me is still the sense of sadness which I have always felt when I am around hospitals. Really I don’t like them, as posh as they may get. 

The clinic is modern and functional as expected, staff are friendly, I don't need to wait long until I am in the examination room. In my melanoma story, I think this is the first time that I am actually very nervous and anxious during a medical appointment. The procedure is explained to me, a fine needle will be introduced into the area of my neck showing the abnormal node to extract fluid. I will feel no more than a needle pinch and the procedure should not be painful. The area is likely to be left with some bruising. I think I am visibly nervous (am I slightly shaking?) when I lay down on the examination table. I feel like I must explain to the radiologist that I am totally cool with what he is doing, I trust him and I am not concerned at all by the procedure; that the reason why I am upset is that it has now pervasively dawned on me that the reason why the procedure is being done, the reason why I am there, is that there is the real possibility that I may have cancer in a lymph node. He says he understands. I mention my history of malignant melanoma and hence the immediate concerns the doctors and I had. He asks me when it was that I had the melanoma removed from my back; '5 months ago' I say. No answer on his side. The vicinity of the events is obviously suspicious. He asks me whether I have travelled to India recently (presumably there is some infection going on around India at the moment which affects the lymph nodes?). 'Sadly I haven't been to India' I say. He says that as I am otherwise healthy and fit, there is obviously more of a concern (in other words 'unfortunately' I don't look like I have any bugs or infection which would result in lymph node swelling), but we cannot know until we have the FNA results. There is also a nurse in the room, he asks me whether I want to hold on his hand, I say 'I won't say no, if it's on offer’.

The procedure takes about 20 or 25 minutes. The radiologist tells me he is going to take out additional fluid using a thicker needle so that the results of the biopsy will definitely be conclusive. I say ‘go for it’. Besides the FNA, the radiologist also performs an ultrasound scan of my neck, this does not reveal any further abnormalities other than the palpable swollen lymph node. I remember feeling quite relieved at this information, which he shares with me immediately. An ultrasound is a procedure that uses high frequency sound waves to create an image of part of the inside of the body. A gel is put onto your skin to allow a transducer to move smoothly. The transducer is connected to a computer and a monitor where structures of your body are displayed as an image. By the way I have made a note to spend some time in a future post talking about the various type of body scans as it took me some time to get my head round the terminology and what each scan consists in (e.g. CT Scan, PET Scan, MRI, Ultrasound). 

I come out of the procedure room and I am mentally exhausted (can you blame me?). My whatsapp is flooded with messages of friends asking how I went on. I start replying (I am generally very good at replying to messages quickly), then I realise that my brain is melting, I need to go out for some fresh air and a walk. 

The days following the FNA will prove very eventful and I will be on an emotional roller-coaster. This is not only because of the unfolding of the events connected with my melanoma which will now come thick and fast, but also because I had to face something that I had put off until now: tell my parents about it. About the real possibility that the cancer removed from my skin in January may have spread. Until now I had not said a word as I was living in this great uncertainty and I did not want them to worry unnecessarily. Given that they live in Italy, it was easy not to disclose my medical appointments. But as it happens, they were coming from Italy to London to visit me for a short summer break, so I would not be able to hide it anymore. I just prayed at this point that I could have some good news before I saw them, but unfortunately it did not work out this way and their arrival would coincide with the middle of the storm for me.

Just after the fine needle aspiration - 17 June 2014

10. Meeting the Surgeon (and on Medical Records)

As I mentioned previously in this Blog, one of my reasons for writing is to describe the events connected with my cancer diagnosis, and crystallise my thoughts and emotions along the way. One day, I may want to have something to go back to in order to remind myself of how the chain of events unfolded and how I lived every step of the way. Something other than my medical records, something which includes my perspective on it, given that I was in the middle of it all.

Medical records are cold and pitiless pieces of paper. The correspondence between the doctors, the update letters addressed from the specialists to your GP, the histopathology reports. They tell your story without your permission, without including your perspective. Let’s have an example. The oncologist writes to the surgeon (who will be introduced shortly) in July 2014: "I saw Mr Gabriel in clinic today and he is making an excellent postoperative recovery”.  Really? I say: "actually I still feel pretty sore and my shoulder movement is somewhat limited, I am pretty sure I used to feel a lot better before surgery, so you may want to drop the word 'excellent'!". The dermatologist, oncologist, surgeon, radiologist, histopathology consultant (and more specialists are still to come into play), they all write things about you which are going to affect the rest of your life without even knowing you that well (if at all), I find it preposterous! At least here I can add some more background, emotions and inject some life into my story of facing melanoma. It does not seem right to leave it to the doctors to talk about it in their brief heartless correspondence and reports. 

Note that whilst I spoke ironically about medical records it is obvious that they are extremely important documents to keep and patients have the right to access them. Please refer to the bottom of this post for some information on patients' rights in relation to accessing medical records.  

Back to my story, in June 2014. I have my referral letter (at the time of writing I have put together a large file with copious correspondence and reports!) from the dermatologist to see a surgeon, who specialises amongst other things in skin cancer. I arrange for a consultation as soon as he is available. I go to my appointment on a warm sunny morning and this is how a new medical professional appears on my melanoma landscape. He is cold and distant. But I immediately decide that this is what you want from a surgeon (so I try hard not to dislike him in spite of myself). Someone capable of performing major surgeries on patients surely must be a cold blooded distant person. If he was warm and empathic you probably would not trust his firm hand. He inspects my neck, does not compromise himself by saying whether my swollen lymph node may or may not be cancer, he simply lays out the next steps for me:

1. I will undergo a Fine Needle Aspiration (FNA) biopsy first. The FNA is a type of biopsy procedure in which a thin needle is inserted into the area of abnormal-appearing tissue or body fluid. The fluid and tissue extracted through the needle can then be observed under the microscope. 

2. Should the results of the FNA be 'not conclusive' I will undergo surgery to excise the lymph node for full biopsy under the microscope. This is a relatively small surgery.

3. With step 1 or if needed step 2, we wil have the answer we need . If we can rule out cancer (either through FNA or excision) everyone's happy (especially I). Should the lymph node show melanoma, I will have to undergo lymphadenectomy, or neck dissection, which is removal of all the lymph nodes to the side of my neck where cancer cells were found, this is a major surgery not without risks and potential long term consequences. At this stage, this was really the worst case scenario. 

Unfortunately I would go through all the above steps, 1. FNA ('not conclusive') 2. Lymph node excision (shows melanoma) 3. Neck dissection. 

As a consequence I also learnt a lot about all these procedures so you are going to have to make good use of your patience, a very precious virtue to cultivate, as I have a lot more to write about in the next entries of this Blog. 

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I wanted to spend a word more on the importance of keeping your medical records with you and the right of access to them. I have come across stories of people who do not have their medical records at home, maybe simply because they forget to ask for a copy when they visit the hospital and in some cases, when requested, the hospital then refuses to provide them, sometimes replying with patronising explanations such as that the patient does not need them or would not understand them. First of all we sadly understand them very well as we become extremely knowledgeable about our disease or condition. Secondly, it is only common sense that we should hold a complete file with our medical history. What if you wanted to go for a consultation with a new doctor for a second opinion? Surely we will need to be able to provide our complete medical history. And what about if you considered treatment abroad?

Usually under private health care it is easier to obtain the records, as long as you remember to ask the doctor or their secretary, then just make good use of your all so precious filing and admin skills! However with the NHS usually a formal request needs to be made and this is when often patients are met with resistance. So let's arm ourselves with some knowledge to ensure our rights are not compromised. 

In the UK every patient has the right to have access to his or her medical records. This right is set out in section 7 of the Data Protection Act 1998 (which is not only about medical records but about any personal data of which a person is the subject).  The Department of Health has laid out the guidelines to assists NHS organisations in England, through the process of dealing with a data access request. A link to the guidance is below. 

http://systems.hscic.gov.uk/infogov/links/dhaccessrecs.pdf

The right to access to medical records may be limited or denied only in certain specific circumstances, for example when the disclosure of the medical record "would be likely to cause serious harm to the physical or mental health or condition of the data subject”. 

Section 7 of the Data Protection Act 1998 allows the data controller (basically the person or organisation who has control over the processing of the data) to charge a fee for access to data. Currently the NHS charges fees (http://www.nhs.uk/chq/Pages/2635.aspx).

9. On the Battle Field Again

June 2014. It's the beginning of June, life keeps going on at a crazy fast pace (all Londoners will be familiar with it), more than ever, after dealing with malignant melanoma, I appreciate the small beautiful things that life constantly throws at us, I embrace everything with an open heart, I have newly found energy, determination and happiness inside me... until I land on one of the most stressful weeks in my personal living memory: a major leak from my bathroom floods my downstairs neighbours' bathroom and I discover a lump in my neck. When it rains it pours, as they say. 

The leak from the bathroom proves to be the more easily solvable problem of the two. I am already dreading having to have the whole tile-work around the bath removed in order to determine the cause the leak. However, to my great relief, when the plumber inspects the bath he immediately realises what the issue is. The seal around the bathtub has come off in a few points leaving gaps between the bath and the walls and the water is going thorough those gaps when the shower is turned on. We try running water straight through the plug hole and no more water is going through downstairs. This proves that the plumber's diagnosis is correct, the plan of action is therefore pretty painless. Reseal the bathtub, let it dry. Problem solved. As a word of advice on bathroom leaks, based on my own as well as several friends’ experience, the vast majority of leaks (especially in older and conversion properties) are caused by water going through from around the bathtub. It appears that workmen in the UK often times leave too large a gap between the bath and the bathroom walls (for reasons to be determined), therefore always check that there are no obvious gaps in the seal and get the bathtub resealed when needed (or do it yourself as it’s pretty easy)! 

Apologies for the digression. Now to problem number two: the lump in my neck. I am concerned from the beginning as this is exactly what the dermatologist and oncologist warned me to be watchful for. A swollen lymph node may indicate that the cancer has spread there. Of course a swollen node can also be caused by a simple infection (at the end of the day we now know that lymph nodes are there to fight infection and provide immunity). Coincidentally I am due for my quarterly visit with my dermatologist that very week. So I plan to ask him what he thinks about it. He is immediately concerned, which is not a good sign as historically he always got it right with me. He says it is a very suspicious node and it could be melanoma and he refers me to a surgeon for an excision biopsy as this is outside his remit as a dermatologist. He also says that of course there is a chance this may turn out to be nothing bad but we will not be reassured until we know for sure.

I leave the hospital and I am petrified. As usual though I am very 'matter of fact' in dealing with the issue. I am not too concerned with the long term implications of cancer spreading (again, I feel too young - still! - and too well and full of energy and life, to really accept that this disease may ultimately kill me) but the short term prospect of more uncertainties and more surgery daunts me.

I will see the surgeon for an initial consultation the following week, and I'll talk about this in the next entry of this Blog. Now I would like to spend a word on the subject of discovery new lumps in your body, which is a frightening moment for anyone and much more so for someone with a history of cancer. The basic advice, which really is a lot of common sense (but this sometimes disappears when we are under stress) is as follows: 

• Go get it checked. Don't delay going to see a doctor, seeing a doctor will not turn into 'bad' something which is not. A doctor may be able to tell you straightaway that something is not of concern and you will get your peace of mind sooner. If something is of concern on the other hand, you will tackle any issues as soon as possible without wasting precious time. 

• Do not spend hours googling stuff to self-diagnose. Google-self-diagnosis can be dangerous as it may delay your visit to the doctor. Of course I did do a lot of googling myself, but I was just doing that in parallel to seeing the doctors. The internet, including social networks (and of course Blogs!) can be an invaluable source of information and connection, however it should never replace or delay a visit to the doctor. Symptoms checks should be left to medical practitioners as they must be evaluated case by case, considering your specific circumstances and overall health among other things. As an example of useless and dangerous google-self-diagnose, one thing that you may read on swollen lymph nodes is that if the lump is tender and sore it is much more likely to be an infection of some sort. If it's hard and not sore it is more likely to be cancer. Well, my swollen lymph node was tender and sore and turned out to be cancer, so there we go.

8. Melanoma Break

April and May are by far the best months of 2014 for me as I get a break from dealing with melanoma. My scars have healed well, I got my prognosis, it's a shock to the system but I am gradually coming to terms with it. Now I just need to get on with my life.

I have a surveillance plan in place, in line with the UK protocol for malignant melanoma patients. I will see the dermatologist every 3 months for 3 years, then every 6 months for the rest of my life. As I had one mm I now have an increased risk of developing another mm in the future. There is of course also the much scarier scenario of future spreading of the cancer to the lymph nodes and internal organs. This can happen as microscopic cells may have 'escaped' from the primary cancer on the skin before the mm was cut off and can travel to other parts of the body (through the lymphatic system or the bloodstream). So one thing I need to do going forward is to regularly self-check my lymph nodes for any swelling, especially in the neck and armpit areas (where we have many of these glands) as given the location of my primary tumour, this is where it would more likely spread first. It would be the beginning of June when I noticed a swollen gland in my neck, and my fight with melanoma would continue. But until then I enjoyed my 'melanoma break'.

One word on lymph nodes, if I may, as they have become such an important part of my body for me to be aware of, such a common word I use in my daily conversations (and not just the ones I have with myself!), such an important aspect of my life, and yet I must confess that I lived 37 years in blissful medical and anatomical ignorance of the fact that we have such wonderful glands in our body.

The lymph nodes are glands situated all over the body and are connected by a network of lymphatic vessels. They form part of the lymphatic system which is one of the body's natural defences against infection. Cancer can develop in the lymph nodes in two ways. It can start there as a primary cancer, the cancer that starts in the lymph nodes is called lymphoma. Or it can spread into the lymph nodes from a primary cancer elsewhere in the body, this is known as secondary or metastatic cancer. In this latter case the cancer cells which are found in the lymph nodes will be the same type of cancer cells as the primary tumour. For example if melanoma spreads from the skin to the lymph nodes it will be melanoma cancer in the lymph nodes, this is important and different types of cancer are treated differently.

The most common sign of cancer cells in the lymph nodes is that one or more of the lymph nodes become enlarged. However, if there are only a small number of cancer cells in the lymph nodes, they may feel normal. A CT (computerised tomography) scan or MRI (magnetic resonance imaging) scan will enable to make a diagnosis of secondary cancer in the lymph nodes. CT and MRI scan should be performed when there is risk of spreading of cancer to the lymph nodes. Very often when a primary cancer is removed through surgery, the surgeon will also remove some of the nearby lymph nodes. It's important to know whether a primary cancer has spread to any nearby lymph nodes, as it helps assess the risk of the cancer coming back and whether further treatment is necessary. 

So there I am, in April 2014 (having learnt quite a bit about lymph nodes) but feeling very positive and happy. I appreciate being 'wound free' and healthy, I carry the scar on my back from the wide local excision as a sign of strength to overcome difficulties. I exercise a lot, I go to my Salsa classes, I travel to Italy, I spend time with the amazing people I am lucky enough to have in my life. I also finish my training and qualify as a Personal Trainer, and whilst for the time being I don't look for a career chance (as, remember, I still have my job in insurance) I am loving being able to apply what I have learn to my own fitness regime and I feel great within myself.

At the time of writing, in October 2014, after having faced much harder battles against melanoma during the summer months, I feel mentally as well as physically exhausted and I so hope I can soon experience a similarly happy period to the one I had in April-May to enjoy. Another melanoma break. Funny how I am not even thinking anymore about life before melanoma. That will never come back, I know this much. I know that I will never be as carefree and light-hearted as I used to be. The dark shade of cancer will always be cast in my way, it will follow my steps, sometimes more silently, sometimes more overwhelmingly. But I am nonetheless longing for a time when I feel again physically powerful and mentally strong and confident that I can win not only the next battles but this whole war against melanoma. 

7. The Oncology Appointment

February 2014. The scar from my wide local excision heals well and fast. I see the dermatologist again two weeks after the procedure. He is happy with the outcome and the healing. He confirms that the entire skin margin removed which was sent off for biopsy is 'clear', i.e. no cancer cells are present. My case has been discussed by a multi-disciplinary team, involving, besides the dermatologist, a surgeon and an oncologist and the conclusion is that I need no further treatment at this stage. However I am then referred to the oncologist for a consultation.

26 March 2014, 10am. My first ever oncology appointment. 26 March was the first appointment I could get and it works well in many ways so I book it. There is only one slight issue, the 26 is the day after my birthday and even if I have no prior experience of it I am pretty sure that going to an oncology visit with a heavy hangover cannot be a good thing.  What if the oncologist asks me how I feel? I would then have to answer: "I feel terrible with no energy and I have an awful headache; but I would not worry about it as it's definitely got to do with the vast amount of red wine I drank last night"! That would not make a good first impression. So I try to manage this issue as well as I can. I go out for dinner with my friends on March 25, and I do drink red wine but I am sensible (joking apart I always am! Well... almost always). In fact I have a lovely evening with some amazing friends, I also make a little speech about how wonderful life is (ok yes I must have had enough wine!) and I go home content. I am actually quite looking forward to meeting the oncologist the day after.

The visit goes in an excellent way as far as I am concerned. I don't get a huge amount of new information off the doctor to be honest (which I did not already know), but then again I was not expecting to learn any revolutionary information. [I need to add that over the previous weeks I have used a large percentage of my monthly Wi-Fi allowance researching melanoma, but I will talk about my experience of the pros and cos of google-diagnosis in a different post]. Unfortunately I was not taking written notes at the time (like I do now) for my records, however this is pretty much what I was told: 

• Based on the thickness of the mm removed from my back, historical data suggests that I have approximatley 80% probability of 10-year survival. That is to say that, based on historical sample of patients, 8 out of 10 patients who had a skin tumour similar to mine were still alive after 10 years; 2 out of 10 developed metastases and died from the disease. 
• However, these rates don't allow for the very recent and encouraging advances in treatments, so these can be seen as conservative estimates. (At the bottom of the page are the melanoma survival rates for each stage as they are reported on www.cancer.org.)
• I need to be vigilant. Check for any swelling in the areas where most lymph nodes are (neck, armpits, groin), as lymph nodes are where mm usually spreads first. Report to my doctor any symptoms like cough, sore throat or headaches which do not disappear within a couple of weeks. At the same time I don't have to become over paranoid (more easily said than done as I would realise in the future), as I will get headaches and cough occasionally, like people do, and must not always panic that it may be cancer related.
• I need to tell to my first degree relatives that they have a slightly increased risk of developing skin cancer and they should be vigilant too. 
• If all goes well and my melanoma cancer does not progress I don't need to see him again (sadly I would see him several more times over the coming months). 

I tell him that I am optimistic, that I can only go through life like I have always done, with an open heart, with the smile on my face, embracing everything that life throws at me, making the most of everything that I have the luck to enjoy. I have always adopted this approach and I will do it ten times more now. Whilst I will adopt an healthy life-style, I will not constantly worry about the disease coming back as in the end we never know what life has in store for us, so there is no point in worrying in advance about things we cannot control.  He tells me that I am totally right in my approach and that he could not have expressed it himself in a better way than I did.

I leave the oncology clinic and I have mixed feeling; never have I felt so fragile and yet so strong, so mortal and yet so alive.

=================================

Survival rates for melanoma skin cancer by stage

Source: www.cancer.org

It is important to note:

• Improvements in treatment since the statistics were compiled may result in a more favourable outlook for people being diagnosed now.
• Survival rates are based on previous outcomes of large numbers of people who had melanoma, however they cannot predict what will happen in any particular case.

Stage IA: The 5-year survival rate is around 97%. The 10-year survival is around 95%.

Stage IB: The 5-year survival rate is around 92%. The 10-year survival is around 86%.  [this was my prognosis at March 2014]

Stage IIA: The 5-year survival rate is around 81%. The 10-year survival is around 67%. 

Stage IIB: The 5-year survival rate is around 70%. The 10-year survival is around 57%.

Stage IIC: The 5-year survival rate is around 53%. The 10-year survival is around 40%. 

Stage IIIA: The 5-year survival rate is around 78%. The 10-year survival is around 68%.* 

Stage IIIB: The 5-year survival rate is around 59%. The 10-year survival is around 43%. [this was my prognosis at July 2014]

Stage IIIC: The 5-year survival rate is around 40%. The 10-year survival is around 24%.

Stage IV: The 5-year survival rate is about 15% to 20%. The 10-year survival is about 10% to 15%. 
[this is my prognosis after progressing to stage 4 in November 2014]

*The survival rate is higher for stage IIIA cancers than for some stage II cancers. This is likely because the main (primary) tumour is often less advanced for IIIA cancers, although this is not clear.

6. More Scarring: Wide Local Excision (WLE)

January 2014. So my dermatologist has told me that I must undergo a surgical procedure called Wide Local Excision (WLE). This is scheduled for about four weeks after my diagnosis of malignant melanoma. The rationale for the surgery is crystal clear. Basically, during an excision biopsy only a small area of skin surrounding the suspected melanoma is removed. If mm is confirmed, additional healthy skin must be removed around the site to ensure there is enough 'clear' tissue removed (usually around 2cm but this depends on the thickness of the mm too). This minimises the probability of future local recurrence.

I am upset. I am slowly coming to terms with everything that is happening to me. I try not to think too much about the cancer diagnosis per se and any potential long term consequences (such as the 'it may kill me' bit). But I hate the fact that mm is already messing about with my current plans, with my short terms objectives in life. In that period I have enrolled in a part-time fitness course to qualify as a personal trainer (as I love fitness and I think it's great to have hobbies and interests which are unrelated with my full time job in the insurance world). So I want to be reasonably fit, I am exercising a lot and I am loving my fitness routine. Just how inconvenient is it to have to undergo a surgical cut (not a small one this time unfortunately) and be unable to train for at least 2 weeks?! So in the last couple of weeks before surgery I go to the gym every single day and I work out extra hard. With every step on the treadmill I may be running away from mm, but with every weight lift I am punching it right in the face. Frustration sky high.

30 January 2014. My WLE is done as an outpatient procedure by the dermatologist under local anaesthetic. I subsequently found out that such procedure is more often done by a plastic surgeon, especially when it involves a skin flap or graft, which will depend on where on your body the procedure needs to be done. A flap or graft means that the skin removed is then replaced with skin from elsewhere on the body.  Mine is on my back, so not particularly complicated (no flap or graft is required) and my dermatologist is a mm specialist, so he does it himself. Literally a piece of the skin is cut off and then the wound stitched back together. Now at the time of writing I cannot help but thinking that a plastic surgeon could have done a neater job, but the most important thing is that the job is done, and the look of a scar, which I cannot even see, is not a key concern at this stage.
The procedure does not sound so bad to me, but it is actually a little worse than I anticipated. There is no pain at the time of course, due to local anaesthetic, but it's hard to ignore the smell of burnt flesh (cauterisation is used to burn the surrounding tissue around the cut to stop the bleeding).  Fortunately my mm (primary tumour as I might call it now) was on the top of my back (right under my neck) so during the WLE I am lying on my tummy and my back is an area of my body that I cannot possibly look at whilst the dermatologist is carrying out the procedure, even if I was really tempted to do so for some obscure reason. I am therefore spared any graphic details (and so are you). There is always a bright side to everything!

Pain is quite bad over the next few days. Up to 10 days afterwards. I think I was only off work for 2-3 days. I would recommend that anyone who has a WLE take at the very least one week off work (and this is for sedentary work). Thinking about it all now I realise how this procedure was more 'heavy' than I had anticipated, I was not mentally prepared for it. I faced it by pretending that it was just a 'little cut'. Now I realise how upset I really was, and how this physical and mental burden, which I was trying to see as a 'matter of fact' medical appointment, left more scarring than expected, both outside and inside me.

I am feeling positive at this stage. I go back home and I see this as the starting point of my healing process and my full recovery. The end of my fight with mm. Little did I know that soon I would have much bigger battles to fight against the same evil.

The wound from the wide local excision a few days after the procedure (February 2014)

The scar from the wide local excision in October 2015