21. Fighting my Fight

I wish I hadn’t been away from my Blog for so long. That partially defeats the objective of writing a Blog. If anyone is so kind to find the time to read what I write and then finds the time and perseverance (which I can only interpret as affection) to come back and check for updates, I should be considerate enough to provide more reading. Worse still, I have been writing in the meanwhile, quite a bit. Just have not posted it. The reason for not posting I suppose is the same that pushed me to shut down my Facebook account and stop posting on Instagram too: I have been and I am quite poorly and I felt like I needed more privacy around my pain and suffering. For now I am not changing my view on other social media which are full of 'noise' and unwanted holiday pictures of people who would not even call you before or after the holiday. However writing this Blog is certainly something which I started with a passion and feel strongly about, and never really meant to abandon. Also I know that the people who read this Blog really care for me and about me. So here I am writing a new short post, which is statement of intent. I want to make sure I say it loud and clear how much I want to stay alive for many years (but at the same time I also accept that this may not happen).

I have not posted anything here for over two months. In my defence I can only say that time flies, as we like to put it. Weeks come and go, one after the other at a fast speed. Bad times pass as quickly as good times. Days, weeks, months to come soon become yesterday, last week, last month. The future is soon the past. When I have a very bad day or I feel particularly upset I close my eyes and I tell myself that it will pass, it will soon pass. And it does. October marked the one-year anniversary since I was diagnosed with stage 4 cancer, namely metastatic malignant melanoma. One year since my life has been completely turned upside down, a year where I had to accept that my previous lifestyle will never come back, that I’ll have to hope and fight for an acceptable quality of life, at best.

I have no regrets as I have lived the first 38 years of my life to the fullest (that includes one year when I was already fighting cancer but before it metastasized and became very debilitating). I have travelled a lot, I have always said ‘yes' if I was invited somewhere and it was a matter of going out or staying at home. I have always gone through life with an open heart, have made amazing friends along my way, and I have had a lot of fun! I have also built a beautiful and accomplished life: I gained my university degrees in Naples and London, I learnt foreign languages, I moved abroad, I got reasonably good jobs in the City and achieved financial security for myself, a beautiful London flat which is currently my nest and hideaway place. I have loved and been loved a lot. I have had a lot of good sex, and some bad sex too. I found love on the other side of the Atlantic, and am living with the most amazing person on the planet, someone who never makes me fight for anything, never once upset me, but only adds beauty and easiness to my life. I felt like had everything. A cat included. Then it all changed so abruptly in October last year, and now it’s a matter of making the most of whatever quality of life I have. But one thing is clear to me. I intend to live with melanoma for as long as possible as a chronic condition, and not accept it as a death sentence. I will do whatever it takes to keep myself alive, as I love life too much to give it up, not for such a cruel disease. I realise that this may sound unfair towards those who lost their lives to melanoma, as they surely also loved their lives as much as I love mine. However I don't think I am being unfair as I know and accept that I may be proven wrong and walk away from this world within the next few months, or maybe a little longer. I am aware that I am just as human and fragile as anyone else affected by cancer. But this does not mean that I am not going to try to stay in this world for as long as I can. And keep writing my Blog too. 

20. Waking Up to a Nightmare

I am sitting on the pavement of a busy street, people striding quickly past me in both directions. They take no notice of me. I do not look up, my head and my stare are still. All I see are people’s legs hurrying along their way. I don’t move. I can’t move. My heart is too heavy, my legs are too weak. I know I need help. I try saying something aloud to attract someone's attention, but all I can muster is a whisper that I can hardly hear myself. My voice has abandoned me too. I start weeping, gently for a while, but soon I give in to despair and start sobbing loudly. Yet the passers-by are still oblivious of me, busy as they are with pursuing their errands. They appear to be physically in the same place as me, but I am alone.

This scene cannot be real, I think to myself. These passers-by must have been superimposed onto my world by some sort of time-space error. Their hectic striding cannot be happening at the same time as my crying for help, else they would see me; one of them would. I am helpless. I lie down on the pavement in anguish. My face rests on the hard concrete, which has been kept warm by the pollution of the speeding cars. This hard, warm feeling against my cheek feels real though, so the scene must be real after all. I am really living it. My tears are profuse, they wet the pavement. My eyes are now closed. I lie there powerlessly.

Then the first stone hits me. I open my eyes in pain to realise that the passers-by have disappeared and I am surrounded by a group of thugs. They are attacking me, throwing stones at me. I move away, using whatever little strength I have left to try and escape, but I stand no chance. The second stone hits me hard on my back. It opens a large wound, it penetrates my skin like a bullet. So does the third stone, on the side of my stomach. In vain I beg for pity, but they are thirsty for blood and human suffering. They continue to stone me. I can now feel the stones inside my body. They don’t belong to there: they are foreign objects, pulsing and throbbing like cancerous tumours. They cause the most horrendous pains. I am now sobbing so loudly that I wake myself up. I stop. And I am suddenly silent in the still of the night.

I touch my face, wet with tears, I touch my temples, my neck, my chest, drenched with sweat. The night is still and silent. For a split second I think back to the busy passers-by in my dream. Maybe they are asleep too now, somewhere, dreaming sweet dreams. Some of them may still be striding along the same street now lit by the moon; or maybe they have moved to another city in a different time zone to continue their errands; or have simply gone into someone else’s dreams. Then, sending a shiver of fear along my spine, my mind goes back to the thugs. The fear soon dissolves. I am so relieved that they have gone back into the darkness, that they never existed, that it was only a bad dream.

My relief is short-lived, as I now come back fully to my senses, and wish I hadn’t. I remember that my existence is a living nightmare. I remember that I have metastatic cancer. This is not just a bad dream. I have tumours inside my body that feel indeed like foreign stones thrown at me by a vicious enemy. The nightmare is real. It does not end when I wake.

The pain is very real too and because of it I cannot sit up easily in the bed. I must do it nonetheless, in order to reach for the painkillers on my bedside table. I swallow two pills; they should soon ease the pain a little. I close my eyes, tears start flowing on my face again, like in the dream I just had; but I know that from this nightmare I am not going to wake up. I cry myself to sleep again.

Night of 13 September 2015.

Cancer patient.

19. Cancer Treatments: Fighting the Enemy

1. "A Full Time Job" 

Having cancer is like having a job. I am not quite sure who it was who said it and where I read it, but I sure know it is true. Today it was 5pm when I was done with all cancer-related tasks and chores for the day. Taking into account the fatigue that most cancer patients suffer from, and hence the extra time we need to allow for resting during the day, there is very little time left. Here is where my day has gone today: this morning I left my apartment at 10am to go to my counselling session (something I started after my cancer diagnosis). All transport by taxi unfortunately as my mobility and strength are both limited theses days. Arranging and waiting for taxis and being stuck in traffic are not things I enjoy, believe it or not I so miss public transport and the tube! When I came back home I had to deal with some admin in relation to 'home support’, a benefit under my health insurance policy. Basically there is a company which provides support at home to people with diseases or disabilities who cannot provide for themselves for their daily personal or household necessities. I am making limited used of this service as I am lucky enough to have masses of help around me already from my loved ones, however I am using them when I need. I have learnt not to say no to help when it is on offer. They had sent me an agreement form with some wrong information which I had to amend and send back. That sorted, I had some lunch (courtesy of my mum, as my parents are currently staying with me and looking after me). Then by the time I finished lunch (and my body was already begging for a nap) I received a home visit from Rosy.

Rosy is my wonderful MacMillan nurse. We usually schedule a meeting every four weeks or so or as needed.  This is an invaluable NHS resource, she looks after me in all kinds of practical ways, from sorting out my prescriptions so I can just pick up the medicines at the local pharmacy to providing invaluable advice on how to improve my well-being. Rosy is always cheerful and kind and a nice presence in my life. She also loves cats so we must always be careful not to be sidetracked and end up having cat conversations and support each other in the crazy idea of adopting another one (we are both tempted!). Rosy’s visit lasted about one hour today and we talked a lot about mental health and complementary therapies.

As soon as Rosy left I received a call from my hospital to say that my MRI and CT scans had been brought forward (following the Doctor’s request) from next week to this week. However in my last conversation with my support nurse I had gathered that we were not moving the scans after all, so I had to say to hold on and that I wanted to double check with my nurse. I called her, she confirmed it was good to bring the scans to this week, so I called the imaging department back to confirm the new scan times. I noted the new times down. By the time these back-and-forth phone calls were over I was pretty much ready to collapse in bed, and so I did and slept until 730pm.

So please don’t think I am exaggerating if I say that I haven't had a lot of time to keep writing the Blog. To be totally honest since the last post, I have also spent a fair amount of time playing Ruzzle (in Italian, Spanish and English, just to keep my brain working!), spent several hours in the company of one of my best friends, Mr Nextflix, been engaged in endless whatsapp conversations, and published the odd photo on Instagram. But these are all things I have to do to keep my mind a little off the topic of cancer. If I were writing my Blog during most of the time free from medical appointments and admin, then my life would be 100% focused on my disease, and I need to avoid that. However here I am continuing my writing.

2. How melanoma can be treated

In this post I want to talk about the cancer treatments I have received from December 2014 to the current time of August 2015. This way I will also finally bring my story to the present time, then I’ll be able to keep writing on specific topics and continue the story as it evolves. Cancer treatment is heavy stuff. It’s a lifeline for a cancer patient, but it can also make you sick. It makes you sick in so many ways that it sometimes becomes difficult to know whether some of the symptoms are attributable to the cancer itself or the treatment. For me this is in fact one of the upsetting aspects of dealing with this horrendous disease and its consequences: the fact that I can no longer understand what’s going on with my body, after everything it has gone through. 

There are several ways in which melanoma (and other types of cancer) can be treated. These include surgery, radiotherapy, chemotherapy, biological therapies (including targeted therapies and immunotherapy), bisphosphonates, bone marrow and stem cell transplants and tumour infiltrating lymphocytes (TILs). There is then then huge world of complementary (or alternative) therapies, on which several books have been written and on which there is huge ongoing scientific research. Some people are against complementary therapies as they feel that (not having been tested enough) they could cause more damage than benefits. Most cancer patients however will resolve to some form of complementary therapies as we are human and we will try everything which can give us a hope to live, it’s our survival instinct. Unfortunately there is no cure for advanced melanoma, so it is only natural that I should have looked into complementary therapies. I started researching complementary therapies when I realised (pretty early in my journey) that oncologists tell you nothing about it; they will generally give you no advice whatsoever on nutrition or lifestyle. This is because they will state that there is not ENOUGH evidence that A, B or C provide any benefits. However, I certainly will try something that can give me potential benefits, as long as it does not interfere with the oncology treatment plan I have in place. Note that I am purposely using the word ‘complementary’ rather than ‘alternative' therapies as my opinion is that such treatments should complement and be used in addition to conventional-medicine treatments (as long as they don't interfere with them) and not replace conventional medicine. However every opinion should be respected. There are few cancer patients who refuse conventional medicine treatments, e.g. chemotherapy, and decide to only try and heal their bodies with alternative (in this case) therapies, such as cannabis oil, hyperthermia or very high doses of vitamin C. I will separately talk about complementary therapies as the topic certainly merits undivided attention, but I now want to talk about the treatments I have personally been through: surgery, radiotherapy and immunotherapy.

3. Treatment plan: the patient's lifeline 

Having a treatment plan in place is fundamental to any cancer patient, it represents his or her hope of living. Some of the worst days I can recall in my cancer journey are the days after my stage 4 diagnosis and before my treatment plan was in place. There was about a two weeks's wait as I needed to see my oncologist, I had to have all the required scans done, the multidisciplinary team had to review my case (including a spinal neurosurgeon due to the location of some bone metastases, and a radiotherapist) .  Two weeks is probably as efficiently as it could have been but those days seemed like an eternity, and the toughest to live through. Before starting the treatment plan, you know you have a vicious enemy attacking you but you are being passive and letting them destroy your body. Having a treatment plans means that it has been decided what the best strategy to fight back is. December 2014. My initial plan involved radiotherapy for my back and my neck and immunotherapy. Radiotherapy can be very effective especially for bone cancer. However it can only treat localised tumours, so the key weapon for me was the immunotherapy or SYSTEMIC treatment, which was going to attack cancer cells anywhere they could be found in my body. They did not plan any more surgical interventions as my tumours were not operable, however I ended up having extensive back surgery in February 2015 as the result of damage caused by the cancer to my bones. 

4. Radiotherapy

Radiotherapy is the use of radiation, usually X-rays, to treat cancer. Radiotherapy destroys the cancer cells in the treated area by damaging their DNA. Normal cells are also affected by radiation, however they are better at repairing themselves than the cancer cells. I will not dwell on radiotherapy with information which is generally known or can be easily gathered, I only wanted to spend a few words on how I have lived through it.

I had three separate courses of radiotherapy. First in December 2014 with my first treatment plan, which managed to stop the cancer growing, for some time. Then in June 2015 to treat a tumour growing against my spinal cord in the middle of my back, and in July 2015 to treat cancer in my left hip. My feeling is that radiotherapy is generally a lot more traumatic for the patient, both physically and mentally, than people without cancer may perceive. Since it is not intrusive, it’s generally pain-free and has limited and transient side effects, people tend to come to the conclusion that it’s relatively easy for the patient to deal with. And this may be true to some extent. Nevertheless it is actually quite heavy in many ways. First of all, you need to go to hospital every day for the duration of your treatment. I had treatments on 5 consecutive days, but sometimes a course of radiotherapy can be delivered over weeks of daily attendance. This is exhausting in itself. Travelling back and forth every day, for someone who is not very well to start with, is extremely tiring. On the top of the burden of this commuting time, you are left with a sense of fatigue which can last for weeks. This is because healthy cells are also destroyed by the radiations (as we said above), so in the following weeks the body will be busy using its energy to regenerate those tissues, leaving little energy for anything else.

In addition to the physical exhaustion, there is a visible impact on your skin, from initial redness to permanent white patches, to hair loss. Whilst this is all relatively minor if not trivial in the scheme of things, seeing your skin change will remind you of your disease every time you look at your body in the mirror. This was particularly evident for me following my recent radiotherapy on my back. Whilst they made me sign the usual consent form with plenty of pretty unluckily side effects (nausea, vomit, etc.) of which I experienced none, they failed to mention what would have been the most obvious and ‘real’ side effect for me, that i would lose the hair on my chest. This is in the area where the rays hit my body from the back, and came out from the front, and by doing so left a perfectly shaped rectangular area of hairless skin in the middle of my chest, I can tell you, not a good beach look!!! Not that I am going on holiday any time soon unfortunately, however it really felt extremely weird to find out this strange change in my body appearance. Obviously I shaved off the rest of my chest hair. I believe that the hair should regrow in about 2-3 months (my own research) but we shall see, for now, my brand new look is the one in the first picture below! Again, I appreciate this is trivial stuff and I am partially laughing about it, but it does make me think how this disease has affected and changed my body in so many ways. Also, on a more serious note, I believe that doctors should know better what to tell patients to expect, as this was not something that had occurred to me (as the rays were directed at my back not my front), but surely they should have pointed out hair loss on my front as a side effect and I would have shaven my chest before to avoid the unpleasant surprise of seeing the body hair fall out. Also it really makes you wonder, given that they have been superficial in communication, can I really fully trust them?

Finally I would like to mention that for some types of radiotherapy, when it is fundamental that during treatment you don’t move your body not even by a millimetre, they mould a plastic mask on your face, which is then used to pin it to the treatment table to keep you in place. The mask is like a plastic net, so that you can breathe through it, which covers your entire head. Anyone even slightly claustrophobic will have great trouble to have to go through this procedure. I had a mask fitted for my first course of radiotherapy, for my neck. It was one of the most surreal experiences of my life. The moulding of the mask, the cold water on your face, you can only close your eyes whilst you hear the technicians working around you, it’s like a dreamy situation, so surreal that I lost somewhat touch with what was going on, I started following my own evolving thoughts away from the treatment table on which I was lying, guided only by my stream of consciousness, if I may borrow a literally term… being attached to the table via that mask for each treatment was a feeling of complete powerlessness which is hard to put into words.

Lastly, just to add that when I am lying on the treatment table, completely still and powerless for those few minutes, all I do is pray, pray and bless those rays going through my body and welcome them as rays of life...

5. Immunotherapy

Immunotherapy is a treatment that uses certain parts of a person’s immune system to fight cancer. Unfortunately the problem with cancer is that unlike other diseases, the immune system doesn’t see the cancer cells as ‘bad' because the cells aren’t different enough from normal cells, and hence does not attack them. Sometimes the immune system recognises the cancer cells, but the response might not be strong enough to destroy the cancer. To overcome this, researchers have found ways to help the immune system recognise cancer cells and/or strengthen its response so that it will destroy them. Immumotherapy is now the first line of defence for metastatic melanoma as unfortunately this type of cancer is very resistant to chemotherapy. Immunotherapy is given as an intravenous infusion (a drip into a vein) at the hospital where you go as an out-patient for the day (the second picture below is me receiving treatment in June). I received the first dose of immunotherapy on 8 December 2014, a medicine called Ipilimubab. Usually four doses of this drug would be given at intervals of three weeks. However they decided to change my treatment and on 29 December 2014 I received a dose of another immunotherapy drug called Pembrolizumab. This is because my blood tests (including some cancer markers) were showing no improvement, in other words it looked like I was ‘failing’ the ipilimubab. Also the oncologists had already agreed that my melanoma was very aggressive (did I hear this before?) so it was not likely to respond to 'Ipi' and they were keen to move me to 'Pembro' as soon as possible, as this is now deemed a more effective drug.

Immunotherapy drugs do not have the same aggressive and immediate side effects as chemotherapy. However they can have potentially very serious side effects, including life threatening ones. This is because by waking up the immune system, they can trigger some auto-immune diseases, where the immune system starts attacking healthy body tissue by mistake. Also as these are all fairly new drugs, no one knows what their long term implications really are.

The immunotherapy drugs I received in December 2014, we don’t know for sure which one of the two drugs, gave me a colitis which kept me in hospital for two weeks (over New Year's Eve too, can’t tell you how much fun that was!). That was one of the most horrible times I can remember. This is also where I learnt that doctors often present you only with the worst case scenario. During those awful days in hospital I was repeatedly told (every day, it was like a torture) that if the colitis did not end naturally they would have had to treat it with steroids (very strong anti-inflammatory drugs) and steroids would depress my immune system, in other words work against the treatment, hence I would die. Fortunately another scenario happened, hardly mentioned by the doctors: the colitis subsided by itself without use of steroids, the immunotherapy in the meantime started to do its job, so I was fine (at least for now).

Scans is February 2015 showed that the disease was stable with reduction in liver metastases, so I stopped any treatment as it looked like my immune system had been activated against cancer and was now recognising it. This continued to be the case until May. Unfortunately in June 2015 the cancer started to grow again (as I sadly was expecting due to increased pain levels) and I was started again on the Pembrolizumab, every 3 weeks, as per protocol, in the hope that this systemic treatment (in conjunction with the radiotherapy) would stop the cancer.

6. Surgery 

Surgery is one of the most important treatments for cancer and it is ideal to treat cancer that is completely contained in one area and has not spread. Surgery is a local treatment i.e. it only treats the part of the body operated on. For melanoma, surgery may be the only treatment needed when the skin tumour is caught and removed early. This is why prevention and early detection are fundamental and can save your life. Once the cancer has spread internally things get very nasty as we have learnt through this Blog. I have already talked about the various surgeries I went through to remove cancer: December 2013, primary tumour removed from my back; February 2014, wide local excision (clear margin of skin removed around the site of the primary tumour); June 2014, cancerous lymph node excised from my neck; July 2014, neck dissection, where 25 more lymph nodes were removed from my neck (all resulted clear of cancer). Whilst I had no more surgeries to remove cancer, unfortunately I ended up needing extensive back surgery in February 2015 as the cancer had damaged some vertebra, especially the ones that support my neck. This was extremely dangerous as if the spinal cord was touched and the nerves damaged I may have lost my mobility and be left paraplegic (that was also not so nice to be told by a doctor, by thankfully this did not happen either, so far). I was admitted urgently to hospital after my scans showed the precarious situation with my bones. Unfortunately they had to stabilise my neck, which means a titanium rod was screwed into the bones supporting the neck and into my skull, so that I have lost almost entirely the mobility of my neck (I cannot look left or right or up, just by moving my neck), but hey I have learnt how to shave now without looking up and I suppose I must learn to live with this (relatively minor) disability. It took me long time to slowly recover from such surgery (the scar in the third picture below) but thankfully it all went well and in the meantime March and April were the months where the cancer was being kept at bay, so I started to feel relatively well (and this is when I also started to write this Blog again).

7. Bad scan results: the fight goes on

As at 31 August 2015, I have had results from my latest MRI and CT scans this week which unfortunately have shown that immunotherapy with Pembro has not worked for me, or not enough. The disease is progressing and the tumours are growing. I am devastated. I just spent the last two days crying my eyes out. But I know I need to pick myself up again and keep fighting. I have an appointment with my oncologist next week and we will discuss where we go from here. As I said above, as soon as I have a new treatment plan, I will be in a better place. I however know that from here on my options are limited and not easy, but I can only move forward and undergo all treatments options still available to me, as well as considering complementary treatments which may help me win my war against cancer.   

My smooth chest after radiotherapy made my hair fall out! (August 2015)

Receiving my immunotherapy on 29 June 2015

Scar from neck surgery in February 2015

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.