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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HOLLY BUTCHER: 1990-2018

Quoting from her letter:

“It’s a strange thing to realise and accept your mortality at 26 years young. It’s just one of those things you ignore. The days tick by and you just expect they will keep on coming; Until the unexpected happens. I always imagined myself growing old, wrinkled and grey- most likely caused by the beautiful family (lots of kiddies) I planned on building with the love of my life. I want that so bad it hurts. 

That’s the thing about life; It is fragile, precious and unpredictable and each day is a gift, not a given right. 

I’m 27 now. I don’t want to go. I love my life. I am happy.. I owe that to my loved ones. But the control is out of my hands.

I haven’t started this ‘note before I die’ so that death is feared – I like the fact that we are mostly ignorant to it’s inevitability.. Except when I want to talk about it and it is treated like a ‘taboo’ topic that will never happen to any of us.. That’s been a bit tough. I just want people to stop worrying so much about the small, meaningless stresses in life and try to remember that we all have the same fate after it all so do what you can to make your time feel worthy and great, minus the bullshit.

I have dropped lots of my thoughts below as I have had a lot of time to ponder life these last few months. Of course it’s the middle of the night when these random things pop in my head most! 

Those times you are whinging about ridiculous things (something I have noticed so much these past few months), just think about someone who is really facing a problem. Be grateful for your minor issue and get over it. It’s okay to acknowledge that something is annoying but try not to carry on about it and negatively effect other people’s days. 

Once you do that, get out there and take a freaking big breath of that fresh Aussie air deep in your lungs, look at how blue the sky is and how green the trees are; It is so beautiful. Think how lucky you are to be able to do just that – breathe. 

You might have got caught in bad traffic today, or had a bad sleep because your beautiful babies kept you awake, or your hairdresser cut your hair too short. Your new fake nails might have got a chip, your boobs are too small, or you have cellulite on your arse and your belly is wobbling.

Let all that shit go.. I swear you will not be thinking of those things when it is your turn to go. It is all SO insignificant when you look at life as a whole. I’m watching my body waste away right before my eyes with nothing I can do about it and all I wish for now is that I could have just one more Birthday or Christmas with my family, or just one more day with my partner and dog. Just one more. 

I hear people complaining about how terrible work is or about how hard it is to exercise – Be grateful you are physically able to. Work and exercise may seem like such trivial things … until your body doesn’t allow you to do either of them. 

I tried to live a healthy life, in fact, that was probably my major passion. Appreciate your good health and functioning body- even if it isn’t your ideal size. Look after it and embrace how amazing it is. Move it and nourish it with fresh food. Don’t obsess over it. 

Remember there are more aspects to good health than the physical body.. work just as hard on finding your mental, emotional and spiritual happiness too. That way you might realise just how insignificant and unimportant having this stupidly portrayed perfect social media body really is.. While on this topic, delete any account that pops up on your news feeds that gives you any sense of feeling shit about yourself. Friend or not.. Be ruthless for your own well-being. 

Be grateful for each day you don’t have pain and even the days where you are unwell with man flu, a sore back or a sprained ankle, accept it is shit but be thankful it isn’t life threatening and will go away. 

Whinge less, people! .. And help each other more. 

Give, give, give. It is true that you gain more happiness doing things for others than doing them for yourself. I wish I did this more. Since I have been sick, I have met the most incredibly giving and kind people and been the receiver of the most thoughtful and loving words and support from my family, friends and strangers; More than I could I ever give in return. I will never forget this and will be forever grateful to all of these people. 

It is a weird thing having money to spend at the end.. when you’re dying. It’s not a time you go out and buy material things that you usually would, like a new dress. It makes you think how silly it is that we think it is worth spending so much money on new clothes and ‘things’ in our lives. 

Buy your friend something kind instead of another dress, beauty product or jewellery for that next wedding. 1. No-one cares if you wear the same thing twice 2. It feels good. Take them out for a meal, or better yet, cook them a meal. Shout their coffee. Give/ buy them a plant, a massage or a candle and tell them you love them when you give it to them. 

Value other people’s time. Don’t keep them waiting because you are shit at being on time. Get ready earlier if you are one of those people and appreciate that your friends want to share their time with you, not sit by themselves, waiting on a mate. You will gain respect too! Amen sister. 

This year, our family agreed to do no presents and despite the tree looking rather sad and empty (I nearly cracked Christmas Eve!), it was so nice because people didn’t have the pressure of shopping and the effort went into writing a nice card for each other. Plus imagine my family trying to buy me a present knowing they would probably end up with it themselves.. strange! It might seem lame but those cards mean more to me than any impulse purchase could. Mind you, it was also easier to do in our house because we had no little kiddies there. Anyway, moral of the story- presents are not needed for a meaningful Christmas. Moving on. 

Use your money on experiences.. Or at least don’t miss out on experiences because you spent all your money on material shit. 

Put in the effort to do that day trip to the beach you keep putting off. Dip your feet in the water and dig your toes in the sand. Wet your face with salt water. 

Get amongst nature.

Try just enjoying and being in moments rather than capturing them through the screen of your phone. Life isn’t meant to be lived through a screen nor is it about getting the perfect photo.. enjoy the bloody moment, people! Stop trying to capture it for everyone else. 

Random rhetorical question. Are those several hours you spend doing your hair and make up each day or to go out for one night really worth it? I’ve never understood this about females 🤔.

Get up early sometimes and listen to the birds while you watch the beautiful colours the sun makes as it rises.

Listen to music.. really listen. Music is therapy. Old is best.

Cuddle your dog. Far out, I will miss that. 

Talk to your friends. Put down your phone. Are they doing okay?

Travel if it’s your desire, don’t if it’s not.

Work to live, don’t live to work. 

Seriously, do what makes your heart feel happy. 

Eat the cake. Zero guilt. 

Say no to things you really don’t want to do. 

Don’t feel pressured to do what other people might think is a fulfilling life.. you might want a mediocre life and that is so okay. 

Tell your loved ones you love them every time you get the chance and love them with everything you have. 

Also, remember if something is making you miserable, you do have the power to change it – in work or love or whatever it may be. Have the guts to change. You don’t know how much time you’ve got on this earth so don’t waste it being miserable. I know that is said all the time but it couldn’t be more true.

Anyway, that’s just this one young gals life advice. Take it or leave it, I don’t mind! 

Oh and one last thing, if you can, do a good deed for humanity (and myself) and start regularly donating blood. It will make you feel good with the added bonus of saving lives. I feel like it is something that is so overlooked considering every donation can save 3 lives! That is a massive impact each person can have and the process really is so simple. 

Blood donation (more bags than I could keep up with counting) helped keep me alive for an extra year – a year I will be forever grateful that I got to spend it here on Earth with my family, friends and dog. A year I had some of the greatest times of my life.

..’Til we meet again.

Hol 

Xoxo”

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Meetups for rare Melanomas

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