After more than a month from surgery, the incision made for the sentinel lymph nodes is still healing. Its strange to have an open wound for more than a month, but slowly it is getting better.

After surgery I got 5 stitches in the incision where they removed the two lymph nodes. I had to visit the hospital regularly to drain the accumulated lymph liquid, that would accumulate beneath the skin and create a huge bulge. The incision broke on a few occasions and the liquid leaked out between the stitches. Since the pressure from inside didn’t seem to subside, together with an indication of infection, the stitches were removed and a drain was put in. While I had the drain, about 150 to 200 ml of lymph fluid was released daily, but as the wound healed from inside, this slowly reduced to about 25 ml a week later. That was enough to get the drain removed and since then I have been using a large adhesive bandage which needs to be changed regularly since it is still releasing lymph fluid.

Its down to just a trickle that keeps the wound wet, but it will be a relief when it finally closes and starts to dry.

Quoting from the link:

“Melanoma is a cancer originating from melanocytes, the body’s pigment producing cells, and is mostly found on the skin. However, on rare occasions, Melanoma can also occur in the eye (Ocular/Uveal Melanoma — approximately 4000 new cases across Europe each year), the inner surfaces of the body (Mucosal Melanoma — 1000/ yr), on hand and feet (Acral Melanoma — 5000/ yr) and in children (Pediatric Melanoma — 1000/ yr).

Patients with Rare Melanomas face unique challenges: Rare conditions are often diagnosed late or incorrectly, with limited access to specialists and centres of excellence. Genetically and clinically distinct from adult cutaneous (skin) Melanoma, existing treatments are either less efficient or have not been systematically tested in Rare Melanomas. Small patient populations mean slow recruitment for clinical trials and the general scarcity of clinical data is causing restrictions in access to potentially effective treatments in many countries today. This leaves patients with rare forms of Melanoma with few options, in particular in the metastatic setting.”

Meetup for patients with rare melanomas

My first appointment to started just a few days before Christmas. The appointment was with a Dermatologist who is also a specialist in Melanomas. I remember that I grew more anxious in the week between the pathology result and as the first appointment came nearer. The first few days after receiving the biopsy results, I didn’t really react much to it. I understood it was serious, but since I have been blessed with health, I didn’t make much of it and maybe had no references of what I was facing. The anxiety slowly starts growing because inevitably you start doing research online from credible sources and avoid opinionated forums. You get to the conclusion that maybe this is more serious than what you gave it credit for. This starts creating a list of questions, which no one can really answer until the whole process begins. That wait is tough and you yearn for the first appointment so that you can address this head on.

The hospital is an old building, built in 1945 on a campus where other buildings were added over time. I am an architect and I notice these things and felt that the place needed some work. On the other hand, I also found myself thinking that I am fortunate to live in a country that not only treats cancer, but does it on the national health system for free and has been doing it for some time. What I later discovered was that the brick and mortar is really superficial. I found a team of incredible human beings working in these buildings that no architecture could surpass.

When I met my doctor, she had a look at the pathology report. She asked me to see my toe, but I was surprised when she asked me to strip to my underwear. Didn’t know what that was needed but soon found out. She asked me to lie down and started examining my lower leg, touching and pressing along the lymphatic route and searching for any swollen lymphatic nodes. She pressed under my armpits, around my neck, behind my knees and around the groin area. That was the moment it hit me that this was more serious than anything I have dealt until now. It never occurred to me that this could spread and the fact that she was searching for traces of that, put everything into perspective. From that initial examination, there didn’t seem to be any evidence of swollen lymph nodes to the touch which I guess was good and that gave me some assurance to that multitude of questions that maybe it hadn’t advanced to a critical stage.

After my examination, I was referred to a Surgeon who would perform the surgery and remove the tumour from my toe. In the mean time, I was booked in for a series of exams to prepare me for the surgery.  Basically chest x-ray, blood and urine tests and a CAT scan. Besides the appointment with the Surgeon, I was also booked for one with the Anaesthetist. Everything was lined up to happen within the next few days and was a bit overwhelming looking at a list of things to do.

If on one part, the appointment had served to answer some of my questions it also felt good that the process to solve this had started, which gave me a small sense of relief. I also left the appointment with the feeling that this was more serious than I had expected. I also think I was in a state of disbelief and still processing everything. I breathed in deeply, took it in and walked with my wife to get the chest X-ray.

Getting the chest x-ray was an eye opening experience that I will never forget for the rest of my life. I was taken to a waiting room with maybe 20 or 30 people. A nurse came and called few names and walked us to the x-ray machine. In the group that was called, there were elderly who walked slowly and lagged behind, there were people my age, some men and some woman. I looked at them and wondered what they were there for. I also saw that this disease chooses randomly and still thought it was bizarre that I was in the middle of these people. Cancer is not for me, it happens to others and I am a spectator and not a participant. Clearly in denial to what was happening.

When I arrived at radiology, I was asked to wait until my name was called out. I sat down and noticed a beautiful toddler boy on my left. He had light green eyes, light brown hair and was not older than two. I had just been a father in October, about two months ago and thought how proud his parents must be to have such a beautiful baby. Even now when I write this I get super emotional and my eyes cloud. I felt sorry for his young mother who was probably in the same predicament as me, I looked at her and I could see in her expression she had had better days. I wondered what she was there for, when I noticed that the toddler had a bandage on his hand from a drip. When he turned, I noticed another bandage on his neck!

I was shocked! I couldn’t believe it, in fact I can´t describe in words what I felt. It never crossed my mind that he would be the patient and not his mother. I immediately thought of my own son and it hit me, that never in my wildest dreams, had I ever contemplated that anything bad could happen to him. I thought of this kids parents who probably thought the same, putting their baby to sleep every night, enjoying that phase and never imagining that something like this could happen. It starts making you question a lot of things that I can’t even write down. The first thing I understood is that I have been living in a bubble all my life. I have had bountiful life, because its been blessed with good health, for me and for my loved ones. The toddler was on my left and when I looked to the right, there was a young boy, probably the age of my oldest nephew, not more than eleven, in his pijamas and next to his father. I am speechless…a sense of disbelief, I know what it is to deal with this when its me, but if it were to happen to my son, I think it would be worse to deal with. I pray and ask that God protect him, but so do these parents. It takes thought and a lot of processing, to work through that and make sense of it. There is a lot of suffering in this world, more than I imagined. The hospitals are full, the x-ray boxes are lined with patients, only to be refilled a moment after, each person dealing with his predicament and making sense of it all.

I have been at the poker table, and I have been given a good hand every time the cards are dealt. I was naive to think that I would continue on this winning spree and never imagined that I could be dealt a bad hand. It looks like the cards I am looking at the moment, are not that great. The irony, is that I never rejoiced and celebrated the good hands given to me until now, but rather I bitched about petty things and really lost site of the big picture. I have been extremely fortunate and naive, in more ways that I could imagine and never truly understood by just how much. You only appreciate something when its taken away from you or almost taken away from you. I always convinced myself I would die an old man (I am still hoping for that), but its only when you are really dealing with a life threatening episode that everything is put into context and you see everything in a new perspective.

When someone passes away, we question our own mortality and think about how we are living our lives, but in todays society you get pulled into the rat race very quickly to the point that those experiences are distant memories and you forget the lessons learned.  Thats why I started this blog. I did it for me, to register this in some way, because I cannot afford to lose the lesson learnt and the changes I need to make to live the life I want to live. It is a very private blog, I have only told 2 or 3 people about it, but its open to strangers who might find an echo in it.

When I became a father and I held my baby in my arms and he looked at me with his squashed distorted nose, slanted eyes and his mouth moving like a little goldfish, I remembered one predominant feeling – that my life from that point would never be the same again. I felt energised and felt like wanting to do even more. The fact that I am mentioning this, is because I have heard so many times people describing to me the feeling of what it is to become a father. I tried on many occasions to imagine it, but the fact is that as imaginative as I already am, that you can never truly understand it without experiencing it. Its like cancer, we think of mortality and think about how we should be living our life, but its only when you are put in a real situation, that the experience becomes so much more real.

In the little journey that I have been on, I have understood that I was over investing emotional suffering on petty things in life. I would lose sleep over work related issues. Since I knew I had cancer, I started sleeping a lot better. What kept me awake at night, was no longer a subconscious reason for it, especially at a stage where my practise is going through a difficult period, accumulating debt and having key architects leave after being with me for almost a decade. My sister sent me a post by Holly Butcher who passed away to cancer at a young age. Her words resonated so strongly with me, because it is exactly that (I need to post that for future reference).

Its made me rethink a lot of things. Its really difficult to know how to live life. To be honest with yourself, to have the courage to do the things you enjoy and reject the things you don’t, even if that comes at a financial cost to you. I need to change myself for better, I need to respect myself more and be more healthy, to enjoy the time I am here in the best possible way and be a father to my son and a husband to my wife as long as I can be. I f I am not true to this, then I am not be true to this experience and will have learnt nothing from it and it will have been a waste. I hope that I will beat this, but I fear that some time in the future that I will not remember this and will be caught in the trials and tribulations of daily life.

What I do want to do is to have more time for my family, because that is the most precious commodity, more than any material or financial substitute. I also want to restructure my practise, so that it is not only centred on me, but draws value from the potential of individuals and creates an atmosphere where they can grow. I have no clue how I will do this, but I need to do it. I will keep you posted on my attempts in that regard

The drawing below is the toddler in the waiting room, I did it to remind me of that life changing moment.

I have never had cancer before, but I have found that people in general react in really strange ways when you tell them. This is a sensitive topic, but so many times I have felt like there is a huge elephant in the room and no-one is talking about it.

Partly I understand that people want to respect your privacy and don’t want to raise the subject to make you feel uncomfortable. I am also not sure if it is a cultural thing, but many times it would be nice if people ask me how I am? By saying this, I don’t want to be the centre of attention, but I recall when a friend of mine who was not that close to me was diagnosed with cancer. I recall asking him how he was, wishing him strength in his battle and mentioning that if he needed anything that he could count on me. People haven’t asked me that…I don’t know why. It’s usually me that raises the issue and mentions that there is an elephant in the room. A bit of conversation later and everything feels lighter and the elephant has left.

On a professional level, when I have mentioned it, I have got some mixed reactions. Silence is common, followed by the subject being hushed and the topic of conversation changing very quickly, only making me feel like I should have not even mentioned it. I don’t feel that people are un-polite, but maybe they are caught off guard, are shocked and not know how to react. I have chosen not to talk about it, because in part I feel that people don’t understand it and seem to misinterpret it. I don’t know if they see weakness in me when I mention it, or if they think that an ill architect is not in the best interest of their project.

If you have or had cancer, did you feel this as well? This kind of strange silence around you? I find it very uncomfortable.

I came to the hospital for an appointment and was told that the results from pathology are still not ready.

I guess I need to be patient and wait a bit more.

Its Thursday night and I am at home with my son who will be four months old in a couple of days. My wife went to the theatre with a friend and was feeling guilty for having accepted the invitation, but al the more reason to not let things like this get in the way of our day to day.

My appointment has been rescheduled twice now because the pathology results were not yet ready from the lab. Since this appointment has not been cancelled, I am hoping that tomorrow with be the day that I know. In part I have not invested too much thought into the results, probably because I really feel strongly that this was solved with surgery. I am aware that that may also not be the case, but if it comes to that, I am sure I will find a way to deal with it…although I would really prefer not to. The other part is that I have had the tremendous support of my wife and priceless smiles from my son that just make me forget everything!

On the other hand, being an architect and not someone in the medical field may help. Cancer is something you need to understand, especially in ways that it relates to you, but I confess that I still feel like I am in a bad dream and that I am going to wake up and find out that nothing like this actually really happened. It is still difficult for me to understand that this has actually happened to me. I have always downplayed it and convinced myself that this is a more simple cancer and that I was lucky with the one that was given to me. In part that is true, I am aware that there are very aggressive cancers out there but I have also recently become aware that this can potentially be quite nasty.

Since losing my big toe, I have been searching for information of people that have been in a similar situation. To be honest, I haven’t found much. Most toe amputations are related to diabetes and I found a few cases of mountain climbers who lost toes to frost bite. Only recently I found some posts of other people who had this tumour and the topic was not about the lost toe, but rather the treatment to deal with the cancer having metastases in other parts of the body like the vertebrae in one case and in the brain in another case. The sense of despair and urgency in the conversations caught me off guard. People younger than me, with children… It still doesn’t make sense to me. I could see this tumour! I still can’t imagine that the black stripe on my toe nail could be so lethal. I have mentioned this before, but I still can’t get my head around it.

I have been watching a TV series and there was a prisoner who had cancer and was told by the doctor that she had a few months to live. I know it will not be my case, but I felt a chill go down my spine, imagining that soon it will be me, in real life hearing the news from the surgeon.

I am sure I will be ok. So wish me luck. My friends and family have been awesome, praying for me from different creeds and giving me strength. Even tomorrow, an architect and friend that works with me cancelled her dental appointment to babysit our little one while we go to the hospital.

So lucky to be surrounded by so much love!

I am back at the hospital today to change my drain that’s been leaking the last couple of days. I didn’t think much about recovery after surgery and in part it’s been quick, but quite slow in other aspects. Four days ago I got the last stitches taken out of my toe, but the part around the sentinel lymph nodes near my groin has been a slow process. I had stitches there, but last week they were removed due to the beginning of an infection. I was put on a course of antibiotics and the wound was opened and a drain was attached. Until then, the liquid was trapped underneath the skin and caused a large bulge from the accumulation. That liquid was removed at the hospital and I would need to do it every couple of days. It meant spending as many hours as possible with my legs raised up to help my body absorb these fluids naturally.

Since the drain was attached and I started antibiotics, the liquid is captured in a bag and it seems to be speeding the healing process. It’s also allowed me to work more which is a topic for another post about working under these conditions when I should be resting – but that’s what you get when you work for yourself. When I thought about people that have bags glued to their body for strange fluids, it always made me feel quite squeamish and now I have one myself! It’s actually no that bad. It’s a bag attached to an adhesive that is glued over your wound and has a little plug for you to empty it out. When they attach it, they put a metallic mesh in the wound which is made of silver nitrate or something, that prevents infection and helps the liquid flow out.

Looking forward to not having a bag on my leg and to start recovering and learning to walk again. I thought losing the toe was no big deal, but it is. I get really tired from walking and my feet and legs hurt probably because I am compensating incorrectly. I have tried to read up about people in my condition that have lost a toe and what their recovery was like, but didn’t find anything. I have read that losing a toe does not impede you from walking, but it doesn’t say if you will walk again without limping. The thought of running seems like an impossibility at the moment. It feels like the remaining toes are just too fragile to take the weight and feel like they will snap if I bend them. I guess it is all a question of time, but I will be very happy if I get to run again!