An email to a friend

Hi

My apologies for yesterday. My luck that I had a doctors appointment on the day of the Forum! I was also hoping to have been at the brave meeting afterwards and stayed on for the curry. I also wanted to give you abraço and wish you safe travels on this amazing and epic trip you going on!

But yesterday it was a really important appointment. It was the culmination of a battery of exams to confirm if the tumour had spread or of it was contained.

It’s difficult to express in a message what is going through your mind on a day like this. I guess you hope for the best but unconsciously prepare for the worst. I’ve had some strange pains in my leg, it doesn’t feel like it’s a muscle or a tendon but feels like it’s coming from inside the leg. You start thinking…what if only a few cells slipped by, could this be those few metastasising in the bones? Has the cancer spread? If it has, will the treatment resolve it?

Then you remind yourself that this is an aggressive cancer that resists treatment and has a bleak outcome in the case if it has spread, so if it has, how long will I have to live? A few years? How old will my son be when I am dead? Starting primary school if I am lucky? You remind yourself that he still needs you and you can’t bear to imagine what his life would be like in your absence.

So you go into this appointment with all these thoughts at the back of your mind. When the doctor takes a little longer, or looks at you, you immediately start thinking it’s not a good sign.

I have seen in films the doctors telling patients that they have a few months to live, but I have never given much thought to when they tell you that you are going to live? In my case, she looked at a series of papers and reports and says “for now, it looks like you are ok”….just like that. In the silence that follows while she is punching away on the computer probably writing another report, you think to yourself….I passed! I am going to live! It reminded me of the feeling when you found out you passed a school exam that you were worried you were going to fail, just with the difference in the case is that the result means you will continue to live!

I have never pictured myself in a situation where someone would tell me “you going to live” and understand just how powerful those words could be. It’s only when something we take for granted is taken away from us, or potentially taken away that we appreciate how much of a big deal it is.

So the good news was a massive relief to know I can still continue being a father to my son and a husband to my wife. In fact the news was overwhelming and even though I had commitments as a chamber board member, I thought there is a lot of life still ahead for networking. Today I just needed to hug my son. It was an incredibly powerful and humbling hug…a hug that reminds you of the significance of life, that its not what you have, but who you love! Its people and memories and being in the moment and living each minute and being so bloody greatful for everything you have. It was good to know that it is likely that I will still be around to see him grow up and will be there to listen to him when he needs someone to talk to.

So my apologies for missing all my commitments yesterday, I am sure everyone managed without me and in a few years I probably would not remember that afternoon, but I will never forget the hug I gave my son, the moments we sat next to the river and saw the waves lap the shore and the wonderful walk we had in the park picking up leaves and sticks.

Yesterday I got a ticket to live. Words just can’t explain.

Keep well buddy!

Um abraço.

Useful information on hallux amputation

I have hunted the internet looking for information about the consequences of losing the big toe, but I have yet to find anything useful. The surgeon at the time told me that it would have minimal impact and would not affect neither my walk or balance.

That is not exactly true. A few months after surgery, I had such severe cramps in my foot that I could hardly walk. It took almost 5 months of physiotherapy for the pain to subside. I had no idea what caused it. This article explains that and other things.

It seems like the pain in my foot was caused by a phenomenon called “clawing” and is the effect of the other toes that “claw” into de ground due to the absence of another toe. That causes the feet muscles and tendons to be arched and not relaxed and that explains the pain I had in my foot.

Right now I have pain on the inside of my upper leg and inside my knees. This seems to be caused also by the loss of the big toe. The article explains that foot loses a tripod balance where previously this tripod would be toe, heel and outer side of the foot. With the loss of the toe, the foot tends to curve upwards as to pronate more, increasing the inner arch an causing torsion of the leg and hip which explains the constant pain in that region.

I am posting this in June and I have felt this pain since October last year. At times it is unbearable, making it almost impossible to walk up a hill, while other days it subsides and you forget it’s there until it comes back like an annoying itch. Yesterday I was in a a dentists chair for a couple of hours and the pain in my leg could be felt and was very uncomfortable. It also inhibits me from doing a lot of mundane things, but also makes it difficult to carry my little toddler.

I found this article by the “Gait Guys” and they seem to know their stuff.

Here is a link to one of 2 articles they wrote about this subject. A true gem since I have not found anything as valuable as this in the year and a half I have been browsing.

Consequences of losing the big toe (hallux) to amputation

Hopefully one day o will also meet someone in a similar situation and share these experiences with them.

It’s been a while

If there is one thing I have learnt from all of this is how fragile life is and how instituis make the most of my time with the people I love. I have dedicated as much time as I can to my son who is a year and half.

Today I am back at the hospital to do routine check-up and see what the status of this cancer is. I am getting prepped for a pet scan. Apparently a radioactive sugary liquid is injected in to you. Cells consume sugar and Tumor cells consume more, so that is a way of detecting them since they will shine more when you get scanned by the Scanner (looks like a CAT scan).

Hopefully there won’t be any shinny lights for today. Keep those for my Christmas tree 🙂

Abstract on missing Hallux

I came across this abstract about a study conducted on missing hallux. Would be great to read the full paper, but I don’t have access to it. Nevertheless, here is the abstract:

Clin Orthop Relat Res. 1988 Jan;(226):192-205.

Amputation of the great toe. A clinical and biomechanical study.

Abstract

Clinical and biomechanical observations were made on otherwise normal feet in ten patients, who had had amputations for pollicization of the great toe. Measureable changes were demonstrated in the patients’ gait pattern and in force plate data. The center of pressure was noted to shift from beneath the second metatarsal head on the normal side to beneath the third metatarsal head on the amputated side. The velocity of movement of the center of pressure slowed significantly in the metatarsal head region of the operated side, which secondarily resulted in an increased loading of the metatarsal region. The progression of the center of pressure was noted to be beneath the third metatarsal head region on the involved side, instead of progressing medially and distally toward the first web space. Clinically, the operated foot demonstrated slight thickening beneath the second and third metatarsal heads but no significant abnormal callus formation developed. The patients’ shoes all showed increased lateral wear on the amputated side. From a functional standpoint, the patients had little or no disability from loss of the hallux.

Less complaining

I am back for physiotherapy. My foot has all of a sudden started hurting and I have been limping around a bit. It coincided a few days before going on a trip and I guess the phycological side of it is actually more difficult to deal with than the physical side. To actually feel that something as simple as walking around which I took for granted is hampered makes all the difference in your day to day.

I always think of my son and how I want to be a active and healthy dad. When walking is difficult, it starts rubbing on you because you imagine yourself as someone who wants to run around and play with him. I was a dad at 44 so I am not a young dad, but right now I feel like I am sixty 🙂

I have been whining and complaining a bit too much lately, so I have told myself that I need to be a bit more positive and take it easy. I can’t control the pain in my foot but I must do something about what I can control. One of them is losing weight which will make me more energetic and healthy. I have an objective of losing 15 kg by October. I will focus on that and remind myself how fortunate I am.

This morning I held my son in my arms while he was sleeping and it’s just the best feeling in the world. How lucky I am!

Less complaining. Life is good 🙂

Electric pads sending impulses through my foot. One of the toes bounces up and down which is quite funny.

… upside down

Its been quite a while since I last wrote. Between being a father of a newborn baby and running a business, there  hasn’t been a lot of time left during the day to write. Its Saturday mornings like these when my wife tries to catch up on her lost sleep and I have given my baby his first morning bottle of milk, played with him for a while and put him down for his morning nap, that I actually have a few brief moments to myself to think, write and recollect on some thoughts.

So much has happened these last weeks. In terms of my cancer, I have been doing physical therapy which I question if it is making a difference, but I attend nonetheless. Its three times a week during the mornings and I use it almost as a form of meditation, to remind myself of all of this and to understand what this all means and still try to learn somehow, something. Every day I am still trying to figure it out. I see a lot of people during treatment around me that are dealing with cancer, many worse off than me, all trying to pick up the pieces and move along with life. Its a true battle for some. I have seen people who have lost their tongue and in turn lost their speech, lose their leg but still manage a smile and greet you.

To be honest, it has taken some time for me to understand all of this. I still think I don’t understand it. It is slowly dawning on me that I was dealing with something a lot more serious than what I gave credit for. Almost, like I brushed past a really deep canyon and miraculously didn’t slip in to it while walking past it. Looking back at the path that I came along, I can see that the canyon looks treacherous and seriously scary. Looking at it from a distance, I actually start to understand how naive I was going through it and how lucky I am to have got to the other side.

Maybe the naivety was a way to deal with it at that particular moment, to downplay it so that you psyche yourself up and believe you will overcome it. Strangely though, considering that I came out of this path unscathed, I should be rejoicing but instead I have a feeling of sadness and emptiness. That seriously annoys me since I have health, the best wife I could imagine and the most amazing baby boy. I keep telling myself I shouldn’t feel this, but I do. Just last night I arrived home from my first trip since being a father where I was away for a week. Just holding my babies tiny body in my arms at the airport and squeezing him close to me is something unexplainable. How fortunate I am to have this unconditional love from my wife and my sons innocent smile, happy to see me again.

So I have all of this and on the same note, I feel tired , I feel defeated, sad, disappointed, depressed (I guess) ….just feel like giving up. A part of me is saying that its stupidity. I should be celebrating and rejoicing that I overcame cancer, that I got rid of it early and life is perfect which cancer taught me to appreciate. So what is missing? Why I am feeling so helpless, with an overwhelming feeling of anxiety, with a sense of fear, where simple tasks seem to be colossal and when all of this is taking a good chunk of just being able to chill, be happy, rejoice and enjoy the moment. What a paradox, that cancer taught me that these are the things worth celebrating, but I lack the skills to do them? I am missing something?

In part, I think cancer flipped my world and turned it upside down. It taught me that life is fragile. It disappointed me by telling me that I am not an invincible and indestructible military armoured tank like I thought I was, that everything would bounce off my thick skin, that I would die old and that life would always be perfect.

Cancer taught me that I don’t know what will happen tomorrow. It taught me that there is a lot of horrible shit out there that I never even knew existed. While in Venice this week on work when I was away I saw a program on CNN – “Vital Signs by Sanjay Gupta”, about an athlete Gabriele Grunewald that had a rare cancer and football player Jake Olson who at only 8 months was diagnosed with cancer in his eye! How is an 8 month old baby supposed to have cancer? How does a parent consent to removing your babies eye in order to save his life? Excuse my language, but this is just to screwed up! I was tying my shoe laces in my hotel room while watching this and my jaw was down on the floor! I don’t have words to describe what I feel when I see things like this. I feel outrage, angry, disbelief…feel like screaming. I knew these things existed,  but now having gone through cancer and having been a father, there is a new level on how I can relate to this. In the past, I always thought these things would be someone else’s story until it happened to me. Unconsciously I think I am afraid that the secret shield I thought I always had to protect me was actually never there. Life feels so much more vulnerable

 

Subconsciously the world has turned into a scary place. I feel more fragile, more tired and with less gutso to fight back. I have been going through this life changing experience while also sailing through a storm of my toughest financial year while in my business. I closed last year at a 30% loss in comparison to previous years. I have no idea how I will get my business out of more than a 130K of debt. I have thought about how to restructure my business but still have no clue on how to do that. I thought about awarding partnerships to staff, but they haven’t found the idea of becoming a partner with a company that is in turmoil a good idea. I somehow need to find the energy to turn things around….but  have no idea how to do it.

I think I also feeling a little low because prior to being away on business, my foot started hurting and it worsened to a point that I can hardly put it on the ground. I have been limping most of the week and its been really difficult to walk….it may seem insignificant, but it’s demoralising to have the ability to walk properly and to run to be taken away from you! I had go head back to the hotel early and missed out on going with my group of architect friends to an opening that evening because the pain in my foot was unbearable. I remind myself, that my colleague at physiotherapy doesn’t have a leg and I shouldn’t bitch so much and be more grateful….but it feels like shit, limping through the hotel lobby feeling like I am 95 year old instead of 45

While in Venice, where I limped around for most of the week, I was reminded by just how much my life has changed. Being alone on a business trip, away from my family and feeling fragile maybe emphasised less positive feelings. I just feel so disappointed with life. Its not suppose to be like this. Tough. Where babies lose their eyes. Let me go back to my oblivious life before I had cancer, where I just never noticed any of this.

Cancer has been a cruise missile that flew right through my thick (inexistent) armour and turned my perception of life upside down.

I need to muster the energy (which is in hiding). Life is to short to dwell on sorrow. I need to be strong, where lately all I have felt is weakness. I need to believe when lately all I have felt is despair.

I truly need to believe again,

….what a tough challenge.

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I took this picture while in Venice using a pool of water’s reflection to capture a shot. A metaphor of life upside down.

Need to change

On days like this, I question if I have learnt anything from this experience? We all have stressful days at work and I guess it is a part of life. Do we just accept it and let this stress eat away at us? Or do we have the courage to actually change it? But change it how?

I have been building my business for 15 years on my own. I employ a dozen of architects and I spend more time resolving the horrible side of the business than the part that I actually love, Which is being an architect. Creating. Having time to think.

I really need to rejig my professional life. Having a knot in my stomach and having work issues stress me out more than when I had cancer is something I desperately need to change.

Today is fathers day and I have made a point to spend time with my son, so this will be a short post before I shut down my computer, go for a walk and see the sun set along the river.

I really need to change…just don’t know how.

Cancer free!

Today I finally got my results! It’s all good! No cancer cells in my lymph nodes and tumor was a fraction away from being a problem!

Celebrating life and happiness with my family! Thank-you to my friends and family for the strength and courage you have all given me!

Sentinel lymph node incision still healing

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.

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