MY CANCER JOURNEY by Howard Dion Butler

My cancer journey started about seven years ago when a malignant melanoma (mole) was removed off my back, which I kept on scratching open after a shower with my towel. When it was cut out, they said it would be okay and nothing further was done. Life and Howie were steaming ahead, even with the five-year old acute sinus. Yes, I smoked and drank, but average compared to my crazy South African brothers!

From 2010 to 2012, I visited five doctors, two specialists, one Iridologist and a witchdoctor, but NONE could find the beast hiding in my head. But, I had adult “mumps”, “nasal polyps” with touches of acute sinus again. Not a great place when for six months you have to sleep sitting up straight on a baby type triangle because you actually cannot breath when lying down, and the snoring is like metal grinding, not the old fun drunk snoring!

My blessing was in late June 2012 after returning from a trip to Botswana. I had just had enough and went to an ENT Specialist myself. He looked at me, and immediately sent me for my now second love, The CT scan! On the 27th of June 2012, I was eventually diagnosed with a Nasopharyngeal Carcinoma, which sounded something like this: Left sided nasopharyngeal mass infiltrating the floor of the sphenoid sinus and the left nasal cavity protruding through the apex of the petrous temporal bone into the cavernous sinus, while posterior extension was into the hypo-pharyngeal space and pterygoid musculature and retro-pharyngeal extension into the prevertebral musculature. The destructive bony erosion included left pterygo-palatine fossa while related bilateral avid metastatic cervical lymphadenopathy is seen from level 1 to 6. Then, further to this brief explanation, we have a nodule in the RML (lung), luckily with no effusion nor pleural-based nodules. So, my Dearest adopted Uncle Dr. Raymond Freidman of Sandton Clinic, literally saved my life when he found this in 2012. Silently, we both knew that the chance of secondary’s would be 100%, even if I got through this first round of therapy. We got through it, and in 2014, there were some scary leftovers that showed up as those feared secondary’s. Plus, just for fun, a positive parotid in my left cheek and another bony metastasis were identified in the vertebral body of T12, nicely in the middle of my back. My last visitor was a 3.5cm diameter isolated tumour in 2016 that switched off my right eye. Once again, my TOP DOC, Professor Bernard Donde, nuked it and fed me Cisplatin, and today we are all good to go!

In a nutshell, mole, big tumour, lung, parotid, ‘leftovers’, bone and……no one knows why…..this last tumour that visited just next to my Pituitary gland; thus, over the past years about seven cancer incidents. So yes, it is a miracle that I am still standing free of cancer here today! I have climbed a 5-year statistical mountain after being told on day 3 that I should say my goodbyes since I probably would not make the end of the month. Adding to this, I now suffer from Pan Hypopituitarism, and a thyroid that is rather for show now.

After 62 sessions of radiation, more Cisplatin than the Oros a 6 year-old can drink in a year, the coolest mix of Cisplatin and Gemzar, Hollywood Teeth, and more complimentary drugs than a human is allowed, I am here with every one of you!

No matter whether you said I was faking it, attacked me, cried for me, moaned at me, helped me, prayed for me or lived it with me, I am still here, and here for YOU!

Side effects of Head and Neck Cancer are really bad! The side effects included loss of tact in April 2016 when my body’s hormones ran out and I ended up with a full blood count of ZERO HORMONES (Undetectable by Lancet Laboratories), and my Endocrinologist, Dr Sandeep Ruder, thought I must be from another planet to walk around like that for a week. He fixed me, but there were casualties left in the wake of emotional ups and downs which meant the loss of some business associates that unfortunately did not understand the reasons behind my actions, as they were much like those experienced by the clinically depressed, totally uncontrollable. Hopefully now they will understand, and learn from it.
The better known side effects that I have learned to live with are chemo brain; really bad dry mouth; tissue damage caused by lifesaving radiation; unbelievable spasms in my mouth, neck and throat; and loss of partial use of my right eye, about 10% I think. Deafness, and a continuous buzzing in my ears and head, that even on the quietest night, it’s the African Savanah with millions of crickets and bugs in my head! There other little things like my cholesterol; rinsing my nose 6 to 12 times a day; having cortisone three times a day and trying to remember when to take it with the chemo brain (hee-hee); all just minor stuff…

So, what is the good side here?

This has been the best and worst five years of my life….the worst, losing the guys around me; the best, everything else! Experience makes the man! The purest parts include knowing what others went through and are now going through, and will still go through! Life is fragile! People fear cancer! People are fragile! People are naive! People need to know! People want to know! People get hurt! People are hurting! People hurt people! People are in pain! Living becomes difficult! Life becomes tough! Sometimes it comes back! Sometimes we give up! Sometimes we fight! Sometimes people die! But, at the end of it all, just breath and everything is going to be okay!

I told this to one of the nicest guys you’ll ever meet, Greg Palmer, and six days later, he did exactly that and left us with knowing we had all been touched by a beautiful soul. I remember walking out his hospital room and giving him the thumbs-up, and saying “everything is going to be okay, love you Oompie!” He smiled back at me with the biggest and brightest smile while giving me a shaking great big thumbs-up and said, “I know Howie!” So, to those who fear this journey, just remember everything will be okay!

After having the honour of experiencing a little bit of others’ journeys, and the rollercoaster their loved ones are on, I have a new passion, which is making a difference in others’ lives while being on this journey!

My one passion has become early detection, and obviously a correct diagnosis. I personally know its value, and cost of failure, of the one key to a good quality life after diagnosis. Sadly, many of our fellow South Africans will not have the blessed outcomes I had! That is exactly why we are working so hard to change this, by assisting our leaders and service providers to make these important changes to improve early detection.

My life would not be so blessed if it weren’t for other people that made it possible for me not to haunt them from the other side!

These include Dr Raymond Friedman, Professor Dale Howes, Professor Bernard Donde, Dr Keo Thabane, Dr Bernadette Price, my girlfriends at Sandton Oncology, Sandy, Lesley, Rosie and their team, and Elma. Not forgetting the gorgeous team in the Radiotherapy department. The strength of our Support Group made it easier every month, while the team at Discovery Health made it all possible!

There is however one person that walks quietly amongst you, who seems to think she did very little through all of this, my wife, Bernice! She is known as Bunce, Buncie, Bernie, Mrs B and Boss to some, but to me, she is MY EVERYTHING, and without her as my pillar of strength since 2000, I would not be! She is my number 1 Love!

Once again, we come back to the key of all the tears and anguish we know cancer brings to all of us, and hope that we can now make a difference and dedicate our experience to making other people’s lives as blessed as our own!

I dedicate my journey in cancer to all those who have gone before me; those wondering if they will have to go on this trip; those starting their journey right now; those asking are we there yet; and those getting to the end of it and seeing the light and beauty of life, and just breathing while knowing it is all going to be okay! To YOU!

Light, Love, Life

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