Nix Update…

Please check http://www.mamuloman.com for updates on Nix. All future posts will be there

 

 

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259/365: Energy

How radical is this blog, check out her latest post. That’s my girl!

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energy
Today at midday, I picked up three excited boys – mine and a friend’s – from school and took them to a classmate’s birthday party. At the party the wonderful, boisterous boys fed off each others’ energy, play wrestling on the trampolines and chasing each other around. Within an hour one boy had a blood nose and my Ryan came crying to me saying he had banged his head. My boys are incredibly tough and don’t ever cry for long. It took me a long time to console him so I knew he had taken a bad knock.
I started getting really nervous when he became very subdued and finally fell asleep on my lap. He woke up a little while later but still had no energy and his little body felt hot. I decided to swing by my GP on the way home to make sure he wasn’t concussed…

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Maintenance Due…

Please remember to do whatever it is that internet people do to point this site to the new Mamu Loman blog site – http://www.mamuloman.com

We checked Nix into Kingsway hospital this afternoon.

It’s been a long three/four week battle with various forms of pain and today was just the right day to check her in for an oil check and filter change. We are hoping to take a few days off next week and head up the coast for some family time, so today was as good a day as any to get her some well deserved rest and get on top of the pain.

Nix started battling with a tooth infection some weeks back. She had the tusk attended to on two occasions the final being a full on root canal treatment. Unfortunately that didn’t do anything to dull the pain, it just seemed to aggravate it. We continued to hold out that the pain was related to a latent infection in the tooth. Nix soldiered through 2 sets of anti-biotics and in true Lettie spirit wouldn’t give in to the thought that the pain had anything to do with the cancer. Last week Tuesday Nix went in for a routine PET scan and the results confirmed what we didn’t want to admit but had been lingering in the back of our minds. The unwelcome cancer had spread to most of Nix’s bones including the jaw. Although there was some good news in the lungs and liver, our oncologist is going to change Nikki’s chemo regime to a new drug to smash the cancer that’s gnawing at the bones.

Because of the tooth infection we had stopped administering the bone filler (bisphosphanate) for the last 2 cycles. As a result of that and the increased cancer activity, Nix took a proper beating and as has been on the receiving end of some serious pain for the past few weeks. Our house resembles a walk in pharmacy at the moment. If anyone wants any pain meds, just shout and we will be able to dispense without a script!

Its not my intention to paint a less than real picture about what Nix is going through. She is shattered to put it quite simply. Physically she is broken after a month long wrestle with pain and emotionally she is equally if not more battered. There is one quality about my wife that I admire above all and that is her resilience to this invasion. I often find myself wandering about how I would react given a reversal of roles . To be quite honest I don’t think I would handle this as well as she has and will continue to. She is the strongest person that I know and the bravest. If I know one thing about Nikki she will emerge from this stronger, with greater faith and with a stronger purpose to beat this cancer into a corner!

We have such radical family. My folks are pillars of consistency and love and they just explode with generosity. My brother is a bone mechanic but he has the most amazing compassion and care for us. His wife, Baby, has been such a strong support for Nix, calm, encouraging and engaged. Nikki’s sister is just like her but not as hot. A second angel that has been at her sisters side from the beginning. Nikki’s Mom – such a strong woman who has lived a life that you and I wouldn’t even begin to imagine were a reality. I have no illusions where my wife gets her strength from.. (Johan – sorry dude, you live in JHB and forgot our daughters birthday so no mention for you… What a champion. He’s our internet and research warrior. He is so in love with his sister I get worried at times!)

And our mates that stand in the trenches with us every day. There are too many of you to make special mentions but the message is the same – keep the love coming. Your generosity, care and love keeps us swinging every second of every day. You have all been super stars!

So keep your heads firmly on your shoulders. As soon as the routine maintenance is done, we will have Nix back at home and we will continue to wage war on this unwelcome cancer. We know our territory and we know that the future holds good times just around the corner.

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New Site Details

The new MamuLoman blog site is up and running. I will do duplicate updates for the time being but please start using the new site – http://www.mamuloman.com

Its been a rocky few weeks with some hard news. I will elaborate over the weekned. Stay focused!

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A letter to myself…

The strong person you want to be is not the obedient person you ought to be
Being weak is the beginning of real strength
Your frustrations are the open window of courage you battle to close
There is always someone who needs more love than the love you seek for yourself
You do not control today, but you can decide how you interact with it
The generous live with the poor and the truly well minister to the sick

Its been a tough week in the district of Pennington. Nix has had an acute tooth infection that has caused major discomfort and some unwelcome anxiety. The tooth plumber drained the infection yesterday and will do a full root canal next week. The presence of pain is an unwelcome but real reminder of what we are fighting. No matter how you want to dress up for this fight, the reality is that this is a dog fight. As much as I just want to keep sharing positive vibes and great victories, the truth is that some days you just feel like shit.

But don’t get all EMO people. Our lamps are burning brightly and we are fuelled from Gods Garage. Cancer chose the wrong family, in the wrong district amongst the wrong friends. We will fight it and we will subdue it!

Don’t be average

Nix Tat

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Go with your heart……Unogwaja Short Film 2013

Just finished watching the Unogwaja 2013 short film http://www.youtube.com/watch?v=9x9k-y6xQXw
It just struck me how powerful John McInroy’s words, “go with your heart”actually are. If we do the things that resonate in our hearts, those are the things that will bring reward not just to us but to others. How often have you been prompted to bust out a random act of love/kindness but have shrunk away from it cos it feels slightly odd or uncomfortable. How many lives have you not touched because you have been looking with your fear filled eyes rather than listening and doing with your heart.

John and the rest of the Unogwaja Team – you guys do amazing work. Thanks for leading the way!

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Witnesses to the walk of an exceptional woman…

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(30/07/13)I have been thinking for a while what I would write about next. Nix continues to crush every blow that her cancer throws at her. Her tumor markers continue to drop from an original count of 1947 four months ago to 37 now ( any ‘normal’ persons count is about 10-25), she is looking like a flippen rock star and just getting stuck into living a normal life. We had shared so much of her good news and it just felt that the time had come for us to log some down time and really appreciate all the love and support that we have received and continue to harvest. Truth be told, this hasn’t been a journey for the 5 of us residing at 18 Roberts Rd, it has been an eye-witness account for everyone involved in our lives and supporting this amazing wife of mines royal attack on this unwelcome cancer!

I am now sitting at the Vida at OR Tambo International. Everyone has iPads here and luckily I have mine otherwise I would feel somewhat out. I was just watching people and thinking about stuff. How many of them are Christians, how many know the TRUTH ( that’s just for you Graham), how many love their jobs and then it smashed me – how many of these people get to go home to role model tonight? Get to go home and kiss a legend goodnight, a person that has created a movement with her kindness, love and generosity. I just felt it was time to write about what being a witness to what we have all seen actually meant…….

(07/-3/13) It’s now about a 1 week later. I’m sitting at the Wimpy in Scottburgh and although the landscape has changed a little the daily witness to an exceptional person has only strengthened. Nix is in the middle of a chemo cycle, she takes on another load of mustard gas tomorrow. The week though has been really tough. Nix has started to feel aches and pains in her neck and shoulders and before everyone does a double back flip and reaches out to punch the outrage and shock/horror button, lets just remember a few things. Firstly we are fighting Cancer not a bum rash. One application of cream doesn’t wipe it out! Secondly, it’s more than normal for these aches and pains to be present, they are not new. In fact they have never gone away. There is the odd occasion where Nix doesn’t manage her medication very well and these pains reveal themselves. Its like the one time in July 2010 when Nix wasn’t managing other medication that well and we ended up with Slater – same same but different!

I think its good that we constantly asses the reality of our battle. It’s in the down turns that you really stop to consider a few things.  The people who support and love you. The tools we have at our disposal to fight this thing and most importantly the constant leaning  into our faith as the glue that binds us during this time. Its in the trenches that we get to see who we really are and it’s where God reveals His plans for us. Winston Churchill said,

“Brilliance shines brightest in the moments of darkness..”

You are also just kidding yourself and everyone around you if you are not real about the complexities of managing cancer at home, at work and amongst friends. This week has been the first wobbly in about 3 months and truth be told I am glad it came just to shake us up and get our roots down deeper. It’s tough being a dad and a husband and a psychologist all at once and I always curse myself for never attending psychology 2 & 3 lectures at varsity when I can see Nix is struggling. Then the most amazing things happen, she just rises above my fears and shows that she is actually the one in charge of this fight. She is the strong one, she is the one that steps out of the hole and carries us all with her. She said the most amazing thing to me this morning. It pretty much mirrors what she said right at the beginning of our round 2 battle with Cancer – “Whatever happens, I want to handle this thing so that I may be an example to others as to how you can fight this disease”. How is that…. how amazingly powerful is that statement. Here I am worrying about how I am going to handle things. Poor me – poor old victim me – and out busts Nix with this royal statement of power and purpose. That is Grace – that is a daughter of God alive in her identity in Christ making a statement to the world whilst standing knee-deep in a trench!!! And I get to live with this woman – WOW!

We have all been witness to an amazing miracle in creation in Nix and the amazing miracle of Grace. Regardless of your religious persuasions you can just see a lamp of love burning in Nix and the glow oozing out of every pore. Her realness, strength and love is God’s love reaching out and touching each and every one of us. It’s an amazing journey we are on!

 

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