When I think of what has changed in the middle of all of this, I would say quite a lot of things. My perception of life changed completely. I was convinced that life was indestructible, mine and the people I love that are around me. I felt I was a thick armoured steel bullet and mine proof tank that would plough through life until my old age. I was wrong.

Life is fragile. Very fragile. More like a glass ornament that you would have at home made of very very thin glass that risks being broken at at any moment.

The change of perception that life is so fragile angers me because I have become aware of a reality that I didn’t know existed or preferred to ignore. I feel betrayed, because this is not what I bargained or signed up for. But in life, you can’t ask for your money back or exchange it for what you thought it was. It is what it is. It’s fragile and very delicate.

…and because it is fragile and delicate and I do not know if a gust of wind may come along and change that, that I have also learnt to appreciate it more as it currently is. To treasure it and to relish the moments that I have with my loved ones.

Cancer has taught me how wonderful it is to be alive and how everything can change so suddenly. It has taught me to live one day at a time and to enjoy it as much as possible. I remember this every day and try remind myself how fortunate I am to be alive. I get to be a player in life and have a ticket to participate – to be a witness to my sons growth, an influencer in his life and a husband to my wife. It reminds me just how much I love my family.

Its 05h30 and I am counting the minutes for him to wake up, to give him a hug and celebrate another day together!

Above, a day at the beach a couple of weeks ago with my almost 2 year old son! Looks like he is outgrowing his little hat!

Covers a procedure of lengthening the amputated hallux bone to create a larger area to attach a silicone prosthesis

Prosthetic rehabilitation of amputated hallux after distraction osteogenesis: one-year follow-up

One of the best articles I have found until now. It is the use of Nickel Titanium which is a metal alloy with a spring reaction that returns to its origina shape, In other words, if you bend a sheet of this metal, it bounces back and does not deform. This article gives me hope, because it discusses the use of this metal in an ankle orthosis. However, to achieve the results, actions were measured to provide a certain outcome. The more and more I think the best orthotic solution for my case would me a Nickel Titanium foot plate with an extension of the big toe. However the thickness of that sheet would need to be determined in order to bring the spring effect as close to the original toe as possible. Application of the Superelastic NiTi Spring in Ankle Foot Orthosis (AFO) to Create Normal Ankle Joint Behavior

Also an interesting article that refers that Nitinol (Nickel Titanium) is still not that commonly used in orthotics. Nitinol for Prosthetic and Orthotic Applications

A scientific article involving the loss  of the Hallux. In this case with diabetic patients.

Acral Melanoma has a higher tendency to recur than non acral melanoma Acral Melanoma: A Patient’s Experience and Physician’s Commentary

Orthotics for partial foot amputation Follow this link

The loss of the big toe causes changes in gait and this article covers this topic: “Gait Abnormality Following Amputation in Diabetic Patients”

As precaution, surgeons amputate the toe rather than just removing the tumour itself: In Response to “Descriptive Survival Study of Nail Melanoma Patients Treated With Functional Surgery vs Distal Amputation”

My brother is a dentist and fits implants and I always wondered if there was some type of toe implant that could be attached to where the toe was. I found this abstract about ceramic implants, but the study seems to treat patients who have the full toe and not amputees. Worth a read nevertheless Press-fit ceramic implant arthroplasty of the hallux metatarsophalangeal joint—Evaluation of outcomes

Does First Ray Amputation in Diabetic Patients Influence Gait and Quality of Life?

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.

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.

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 🙂

I share these articles I find about toe loss as a reference to come back to when I need it and also to share since it is relevant.

https://journals.sagepub.com/doi/pdf/10.1177/0309364612457808

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:

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

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.