24. Another year of war against the same enemy

I last wrote and published something in this Blog a long time ago, almost one year. Unfortunately during the last twelve months my life has continued to be a relentless fight against the same enemy, call it cancer, call it malignant melanoma in my case. Same difference. There are tents of different types of cancer and melanoma is one of them. Make no mistake, whilst melanoma is a cancer of the skin, it is only so because of the cells from which it originates, the melanocytes. Melanoma is extremely aggressive and can spread and metastasise internally to your organs, as it did with me. And again make no mistake and drop any residual judgement, anyone can get melanoma, even someone who never burnt in the sun or sunbathed, just like someone who never smoked can get lung cancer.

I certainly had a fair share of summer holidays and sunbathing and I am almost certain I burnt as a child more than once during the long, hot, sun-drenched Mediterranean summers in southern Italy which formed such a big part of my childhood and youth. However never once in my life did I use a sun-bed, and especially in more recent last years, certainly since my twenties, I had become a heavy user of sun creams with high SPF (replacing for good the factor-zero tanning coconut oil of my silly teenage years!). I certainly have no remorse for fully enjoying the sun in the past and in any case by moving to London aged 23 I certainly reduced my overall yearly sun exposure. Also, it has to be said that 20 or 30 years ago there was nowhere near the information and knowledge that everyone is nowadays given about the link between sun exposure and skin cancer. It's impossible in any case to know whether excessive sun exposure caused my melanoma. I developed malignant melanoma when I was 37. I know people now in their fifties and sixties who sunbathed (and burned) heavily all their lives, used sun beds in winter to top-up their tans (horror to my ears), and they now look leather brown - and some of them pretty ragged to be honest with you (whist I have to say that at 40 I am still wrinkle-free) - but they didn't develop skin cancer. And God willing they never will. It really is like everything else: a genetic as well as a good or bad luck lottery. That is not to mean we can afford to be irresponsible. Sunbathing even a little and even with SPF50 on will increase your chances of developing skin cancer, and believe me, it's not worth it. It is your life we are taking about. [please refer to Post number 3 for information on how to be safe in the sun].

When my battle with melanoma began I was keen on sharing my story with others, for the reasons I explained at the beginning of this blog. I took on writing the events that took place, as well as some of my thoughts and emotions, from December 2013 to the beginning of 2016. Two years which I was sure would remain as the toughest of my life. I was wrong: the hardest time was still to come. During the last year I continued to undergo more and more specialised and advanced treatments in the hope to control the disease. In the hope that the vast advances in research and treatment of the last years (which have been amazing, bringing new hope to melanoma patients) would bring, if not a cure, something that could control my disease in the long term. I was determined to learn to live with melanoma as a chronic condition rather than a terminal disease. I only had to hold on long enough till the next treatment came along. However, at the moment, it looks like my cancer is growing faster than science. Too bad. 

It has been a year full of struggle, of short lived spans of relief and hope, always to be promptly destroyed by the following scan results, providing always the same message dressed in different words: the melanoma is growing in spite of treatment. In March 2016, I underwent the most state-of-the-art treatment for melanoma, something called Tumours Infiltrating Lynphocytes or simply TILs. TILS is a very exciting treatment that involves removing some of a patient’s own immune-system cells, growing them in the laboratory, and then infusing the cultured cells (t-cells) back into the patient. The idea is to provide an invading force of immune cells that can attack tumours in a way that the immune system was incapable of doing on its own. 

This is however a very heavy treatment which entails at least two weeks in hospital where you are treated with an extremely punishing and dangerous regime of chemotherapy and other drugs in order to first deplete completely the body of the current immune system, and then 'reprogramme' the immune system to recognise and fight the tumours. High doses of interleukin-2 are used along with the infusion of t-cells, as IL-2 helps regulate the activity of the immune system. The effects of each dose are monitored closely as this drugs makes you very very ill. And the worst thing I found (as it does sound a little cruel!) is that they try to make you better in between doses only so you are well enough to manage another IL-2 dose, which will make you a lot more ill each time. I don't know how I managed nine doses. I ended up gaining 12 kg in body fluids, which invaded my lungs preventing me from breathing, and consequently I almost died, but at least they stopped the IL-2 after that! 

The choice of whether or not to go ahead with TILs was not an easy one at first as (besides accepting to subject yourself to the punishing regime mentioned above) the treatment is still experimental with considerable side effects (possibly lethal, as they have sadly been for two people I knew) and uncertain chances of 'success' (one out of three at best). Where success is measured as the control of the disease over a given period of time (say a year). I decided to go for TILs as, with a growing disease, the alternative of doing nothing was not an option for me. 

On the whole, I am happy to have gone through TILs and I would recommend it to other patients (in fact it should be done a lot sooner than it is usually the case, it should almost be 'first line' rather than 'last resort'. Big subject to be debated!). It is, after all, the treatment that most helped me amongst all the immunotherapy I have done. It gave me three months (April-June 2016) in which my bone tumours were shrinking considerably and I was consequently feeling a lot better. Shame that it didn't last longer as I had really hoped. By the end of summer 2016 the cancer was growing again. I also have to say that I have been 'lucky' (if I could ever possibly even use that word) with side effects of TILs as with most treatments I underwent. My body somehow has managed extremely well to go through very punishing drugs almost unharmed; it's only the cancer that my body is being defeated by.

From August 2016 till the end of the year I started back on immunotherapy treatments in the hope that they would help and support the newly deployed lymphocytes in their fight against melanoma. They didn't. All subsequent scan results were disheartening, until the final blow last week (January 2017).

I thought I had gone through the most emotionally painful time for me when (in November 2014) I was told the cancer was in my liver and bones: I had progressed to stage 4. I thought that after going through the grieving time following that news I was prepared for the rest. And I think I dealt quite well in the following 2 years, trying to keep positive in spite of constantly being ill and fatigued, under treatment, in hospital, having surgery, and by now a wheel chair user due to the extensive damage done by melanoma to my hip joint. I was surely ready to take on and deal with anything else. Well, almost anything. 

Then one day they tell you that now you have a brain tumour too. Now this is the one thing I was not ready to manage. when I was told I felt burning all inside my throat first and then my whole insides were on fire and shaking, and all I could do was to collapse to an almost foetal position, as if to almost wanting to start life again from there, or possibly end in the same way as my life had started. I cried to the oncologist to go away from me. The comforting arms of my other half, as crucified as me by those words, and of the palliative care specialist called to join before the news was delivered to me, supported me. 

After this devastating news, for the first time in my cancer fight I was faced with the potential decision of when to stop fighting this monster. When the pain inflicted and the impact on your quality of life become so unmanageable that it is more humane to ask doctors to stop giving you drugs that only make you more sick (and are not destroying the monster anyway), and only try to make you as well as possible so that you can enjoy as much quality of life as possible with your loved ones for as long as you have left, be it weeks or months. 

As it happens I have been offered more treatment, which once more I have decided to face in order to have a chance to control the progression of the disease: stereotactic radiotherapy to the brain, which is delivered through a very sophisticated robotic machine called cyber knife. This should take care of my brain tumour. Then I can possibly move to chemotherapy to deal with the rest of the disease elsewhere in my body (mainly bones and lymphnodes). Sounds scary and it sure is, but it's once again the only way forward so I'll take it. As far as I am concerned the fight is still on. I have not given up yet as I still have life and strength in me.

23. Nutrition: Love your Body

As I continue to write my Blog about my fight with melanoma I realise I am slightly falling into dangerous territory. I don't want to move too much away from telling my story and start providing advice to others who have been sadly hit by the same awful disease as me. First of all because this was never what I set up to do, but also because there are plenty of informative sources out there already. And not least because I am not in any way qualified to provide medical advice to anyone. So when in this post I talk about dietary supplements and changes to diet, I am really talking about my choices, and foods which in my opinion should at least be considered by cancer patients. However one general piece of advice for fellow patients I do have, and after more than two years of pain and suffering and fighting melanoma I take the liberty of giving it: do not limit your resources to what your doctors say. Do your own research. Consider complementary treatments and have a valid reason to reject them. When they tell you that there are no more options for you, do not believe them. Believe in yourself.

I mentioned sources of information on cancer treatments. This is how I would loosely list them (the list is not exhaustive) according to the decreasing order of trustworthiness I personally attach to them:

1. Outcome of medical trials;
2. Scientific publications in peer-reviewed credited journals;
3. What your body tells you (how you feel);
4. What your instinct tells you (when making decisions);
5. What your oncologist tells you;
6. What other doctors tell you;
7. Information on credited websites;
8. Other patients' experiences;
9. Patients Blogs (such as this one!)

When it comes to nutrition, what I feel very strongly about is that everyone should do what they feel most comfortable doing. And one certainly needs to be aware of quackery and false promises, which can easily be found on the Internet. Certainly to be avoided are any products that claim to be “miracle cures” or are based on a “secret ingredient” or method. Such claims are likely to be fraudulent, and the product may be harmful.

Do your research and complement or change your diet as you feel is appropriate to you. As a cancer patient I find it hard to understand why other patients would dismiss any complementary foods. My survival instinct tells me to try remedies that with little effort may help me, where there is no downside (other than the effort to ensure that you consume certain foods).

When doing my research, I always focus on studies published in peer-reviewed medical journals or other credited published sources. The findings of these studies are often sadly ignored by oncologists as they have been conducted in vitro or on animals, or on small populations of patients, they are however credited pieces of work.

As for myself, items that I have added to my diet (not necessarily all at the same time) are:

• Food supplements: vitamin C, D (very important for mm patients who are unlikely to spend enough time in the sun), zinc, omega 3 oil and multivitamin;
• Apricot kernels;
• Flax seed oil;
• Green tea;
• Curcuma;
• Dietary sulphur: Methyl Sulphonyl Methane (MSM);
• Bicarbonate of Soda;
• Probiotics;
• Milk thistle;
• My daily smoothie: 250g carrots, 40g ginger, a piece of fruit, chamomile and calendula flowers, the juice of 1 lemon, 1 teaspoon of honey and 1 spoon of flax seed oil (NB you need to get used to the taste!!).

Ginger, curcuma, chamomile flowers, calendula flowers, milk thistle and omega 3 (NB not omega 6!!) are wonderful natural anti-inflammatory foods. Cancer relies on inflammatory mechanisms to recruit blood vessels (angiogenesis), which are required to feed tumours, so without inflammation cancer is in trouble! I would stock up on anti-inflammatory foods. I also eat several portions of fruits and vegetables every day. By the same token, I believe it is a good idea to stay away from foods which are pro-inflammatory for the body, such as too much red meat, and processed foods in general.

Probiotics are fundamental to keep a healthy and strong immune system, and there are recent studies that show their synergies with immunotherapies (including drugs such as ipilimumab and pembrolizumab). (www.ascopost.com/issues/december-10-2015/gut-bacteria-may-facilitate-efficacy-of-anti-pd-l1-agents).

MSM has been shown to revert malignancy in melanoma cells, in vitro and on mice models (http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0011788). It has extremely low toxicity (similar to water) and low probabilities of mild side effects. Of course the chances of having a medical trial on an inexpensive product are close to none, as what pharmaceutical company would fund such trial?

It really upsets me that the oncologists who are administering the hugely expensive and potentially deadly immunotherapies, would not even talk to their patients about nutrients such as MSM and probiotics which are inexpensive and safe to take. Again I am not saying that MSM or Probiotics would save the patient's life without the use of the expensive drugs, however according to recent research there is a good probability that they can make a difference to the efficacy of the standard treatment, so why not take them?! 

One thing which is fundamental for natural treatments to work is the constancy of use. You must consume the product daily (or several times a day) with dedication. An occasional or discontinued use of any natural food is unlikely to provide any real benefits. Natural foods are not chemicals or medicines, they are not concentrated, so they can only have a material impact if you feed your body continuously with substantial amounts of that substance, so that it has time to build up and start to work.

22. Looking outside the Box where your Oncologist Has Put You

Having cancer is like being at war. It is a constant relentless fight against the enemy. And I have learnt pretty soon that as much as I may have access to the best medical care currently available for melanoma (and unfortunately not every patient does), no one cares about my life as much as I do. I am the one who has the most interest in my own long-term survival, and I will not stop where others tell me to stop.

1. I will not stop at what conventional/mainstream medicine says. How can I accept that nutrition and lifestyle have zero impact on survival (this is what most oncologists will tell you)? How can I deny the potential benefits of homeopathy? Especially bearing in mind that conventional medicine too can only offer you ‘potential’ benefits, based on probabilities of success. If there was a cure then everyone would be happy, but as there is not, why should one not try other remedies? 
2. I will not stop at what the (current) protocol for melanoma says. Everyone’s cancer is different, just like we are all genetically different, hence I will not accept that there are limitations imposed by standard protocols to the ways I can fight my cancer. A couple of weeks ago I have been pretty much told that I have run out of treatment options; well, I am not going to sit down and cry, I am actually going to disagree and say that I do not believe that. 

It is my life at stake. This is my war.

1. Beyond Conventional Medicine

I firmly believe that conventional (also called western or mainstream) medicine does not provide the whole answer to cancer treatment. There are so many other types of approaches that may be considered, depending on the circumstances, including:

• Nutrition ('love your body');
• Aromatherapy, reflexology, acupuncture ('love your mind');
• From Meditation to Yoga, from Reiki to Shamanism ('love your soul');
• Homeopathic medicine;
• Anthroposophic medicine.

Some of the above practices do not find wide support and have been harshly criticized by mainstream medicine. However, some people found huge benefits from them. Thankfully at the end of the day, whether or not to try any specific treatment is left to individual’s believes and choices. However when we talk about nutrition, I think there is less controversy; in fact I really do not see any valid reasons for someone affected by cancer not to change their dietary habits and introduce well known anti-cancer foods. This can be done with little effort and no downside, only potential upside.

In the next posts I will write about the many changes I have introduced to my diet and the complementary therapies I have tried and I am trying. I have to warn you, there is very little I would say no to! In the end I am fighting for my life. I will try everything given that conventional medicine alone cannot cure me.

I want to clarify, as I have already stated elsewhere in this blog, that I am not talking here about anything ‘alternative’ to mainstream medicine, which of course is fundamental. But I am talking about so many things that can be done IN ADDITION TO conventional treatments. Such COMPLEMENTARY treatments, as long as they do not interfere with your conventional treatment, are things that I find only obvious and rational to want to try. A benefit that cannot be exactly quantified due to lack of sufficient scientific testing (this being the argument of most oncologists against complementary treatments) does not mean no benefit.

Of course we should also be aware of quackery, which unfortunately fills up the internet. Quackery is the promotion of methods that claim to prevent, diagnose, or cure cancers that are either already known to be false, or that are unproven and most likely false. There are a lot of these around and unfortunately there is no miracle cure for cancer, as some of them may claim. Again everyone can use their common sense, do their research and make their choices.

2. Beyond Current Protocols

Over the past few months, I have talked a lot to fellow melanoma patients on social networks and sadly I have had to say goodbye to some of them. And some of the stories I have witnessed have horrified me. Basically, generally speaking (and there are of course exceptions to this rule and a minority of doctors who will fight until the end for and with their patients), if you have not responded to the drugs protocol, they stop any further treatments and only provide palliative care. They tell you how long they think you have to live, usually weeks, and then it’s just a waiting game. How can this be the right thing? There are often more treatment options that could be tried. Yet they are not tried as they are not part of the protocol, which really 'only' means that no expensive medical trials have been carried out and therefore there is no sufficient statistical data to tell how likely anything is to help (for that particular type of cancer). Not ideal of course, but the question is, do you care at that stage? Of course you will try anything. Not to mention that even after treatments are established and become part of the protocol, they may or may not work and carry the risk of serious side effects. Things that are not part of the current mm protocol but I believe should be considered include:

• A ‘re-challenge’ of immunotherapy drugs. This is usually not done due to lack of trials, which will never be a valid reason to me. If someone is dying a doctor should try anything to try and prolong the patient’s life.
• Innovative/experimental treatments which the NHS will not fund, hence these are only available to the insured patients or the rich ones. How can this be right? I am referring in particular to the very promising Tumours Infiltrating Lymphocytes (TILs) treatment. This is an amazing option and should be ideally available to all mm patients who have failed current protocols (where possible), but it is only available privately and costs approximately £70,000. Hopefully one day in the not distant future this will be funded by the NHS. Everyone deserves the chance to live.
• Further complementary medical treatments which could be used alongside standard protocols. Very promising for mm patients is CT guided tumour ablation, already successfully used for other types of cancer. In summer last year, I went for a consultation with a top London professor and he was adamant he could treat with this technique my bone metastases, which are very painful and the main source of my active mm at the moment. This would have not impacted the rest of my treatment plan, in fact it has synergisms with immunotherapy drugs. I remember leaving the consultation feeling finally happier and with some good news after months of bad news. When I spoke to my oncologist about it however my hopes were broken. He told me I could not receive this treatment, in his opinion, because it is not the current standard treatment for mm. He said it could ‘harm’ me, but was not able to define harm any more clearly. He also told me he would not treat me any more as his patient if I pursued this opportunity. This left me heartbroken. In any case I had to accept this blackmail, for the time being, as I could not risk delays in my ongoing immunotherapy treatment.
• Psycho-neuro-endocrino-immunology. This is I believe a very interesting area of work which demonstrates how our mind and emotions can have a significant impact on the endocrine system, which in turns activates and strengthens the immune system against the disease. I am eternally grateful to my amazing friend Francesca for introducing me to this concept. She is the most open-minded doctor ever. I have become a strong believer of this theory (I will spare you from having to read its name again!) and this is now one of my strongest weapons in my fight against cancer. 

I hope I have not bored you too much with this rather serious post. I really wanted to make the point that melanoma is such a complex disease that it needs to be fought at several levels and there are many complementary treatments out there to help. On the other hand, I also wanted to say that we should constantly challenge the current protocol and make sure that the treatment the patient receives is really tailored to the way the disease is behaving in their particular case.

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