After June’s prognosis, I finally summonsed the courage in July to reply to the phone messages from the local West Auckland Hospice team who had been referred my case from the Hospital Oncology team.
The timing turned out to be fortunate with the day that I first met with them (Wednesday), I ended up being admitted to Auckland Hospital due to a downturn in my health. Basically, since the day before (Tuesday), I had been feeling extremely tired, nauseous and unable to keep food down so had spent Tuesday in bed. With my situation worsening, they recommended I go into hospital so they could assess and care for me there. A CT scan on the Thursday also showed that there had been bleeding in my brain which would have contributed to my feeling nauseous and tired.
The other side effect from this process was that my ability to hear properly was majorly affected – I could still hear but my ears were in a constant state of ringing, as though I had been in a very loud concert for a prolonged time and just walked out. Conversations with people became very hard, especially when I could not see their lips to marry the sound & words. The closest sort of condition I could find to equate it with is Tinnitus which is common with soldiers but can also affect people with brain tumours. I couldn’t have phone conversations and had to communicate in writing a lot.
So basically in the space of less than a week, I went from feeling fit & healthy and on top of the world to feeling like I didn’t want to get out of bed in the morning.
Not fun.
But thanks to some high-powered drugs and some lovely people from the Hospice team, I’m getting back on my feet. I got out of hospital on the Friday and have been at home all week resting up and trying to get things back to normal as best I can. Obviously with the recent changes to my health situation, I have to be more careful about what I do and where. And I also have to ‘expect the unexpected’ because anything growing in the brain can cause random events like the hearing issues or seizures or anything.
So, all in all, not the kind of fortnight I was hoping for but I’m glad I made it through in one piece and am still here to regale you with the story 🙂
Keep believing!
David
The oncologist’s words hit me like 2 barrels of a shotgun fired one after the other as he relayed the results of my latest CT scan. His face told the story I didn’t want to hear.
Was this really it for me?
Not only were the tumours in my brain and lungs not shrinking, they were growing. The radiation had not been successful in halting the growths in my brain. Even the ‘wonder drug’ Dabrafenib which, until now, had been causing the lung tumours to shrink had lost its effectiveness leaving them to now grow back. Because of this, the drug company that had been providing me the drug on compassionate use trial would be withdrawing its consent for me to use the drug. Further brain radiation was also ruled out as it was considered to be of little benefit compared to the negative side effects associated with secondary brain radiation. The only thing they could do for me was help manage my symptoms and refer me to Hospice’s palliative care team.
I sat in the car in the parking lot outside the hospital in shock at what I had just heard. The medical profession had effectively written my situation off as a hopeless case. They had no answers apart from keeping me comfortable for the rest of my days, however short or long they might be.
But my God is a God of miracles*. When all hope seems lost, He is the God of hope**. When our future seems bleak, He is the God of promise***.
Throughout my journey with cancer, I have believed that God will heal me from cancer and that I will live out many more years than stage 4 melanoma patients generally get to enjoy. My stance has not changed one bit; the only difference is now I know that my healing will be a miracle as the medical profession cannot offer me any more ‘wonder drugs’ that might be able to fix things.
We have been incredibly impacted by all the support we have received over the last 2 years since I was first diagnosed with melanoma. Many people have helped us out with our physical needs like cooking meals and looking after our kids which we are grateful for. But at this stage, the thing we want most from people is for them to stand up and believe in faith that God will deliver me from the evil of cancer.
The apparent hopelessness of the situation forces us to hold on to God’s promises to us. God has promised us all many things, good health being one of them****. We have to choose whether or not to believe God and to put our trust in Him. This is not a blind, head-in-the-sand kind of trust. It’s a ‘I’m going to lay down a challenge for my God to answer’ kind of trust that believes that God is faithful and will deliver me from my enemy (cancer)*****.
Now is not the time to allow fear in the door. Now is the time to put God’s word to the test. I have no choice but to believe God when He says “I am the Lord who heals you” (Exodus 15:26).
My life depends on it.
Blessings,
David
*’Your ways, God, are holy. What god is as great as our God? You are the God who performs miracles; you display your power among the peoples.’ (Psalms 77:13-14)
**’Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken.’ (Psalms 62:5-6)
***’For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.’ (Jeremiah 29:11)
****’Do not be wise in your own eyes; fear the Lord and shun evil.This will bring health to your body and nourishment to your bones.’ (Proverbs 3:7-8)
*****”If you say, “The Lord is my refuge,” and you make the Most High your dwelling,no harm will overtake you, no disaster will come near your tent.For he will command his angels concerning you to guard you in all your ways;they will lift you up in their hands, so that you will not strike your foot against a stone.You will tread on the lion and the cobra; you will trample the great lion and the serpent.“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.With long life I will satisfy him and show him my salvation.” (Psalms 91:9-16)
Hi everyone, just a quick update to let you all know that I have been booked in for another CT scan for the 20th June. This should give us some results from the radiation treatment I underwent back in April for my brain tumours as well as tracking the progress of my lung tumours from my previous scan. I will post more info when I see the oncologist after the scan.
Thanks again for all your prayers and support.
Lots of love,
David
P.S. I’ve posted a link below to the YouTube video for a song called ‘Relentless’ by Hillsong United. I’ve found the words of the chorus to be particularly poignant as I continue on with my cancer journey:
You carry us, carry us, when the world gives way
You cover us, cover us, with your unending grace
Your love is relentless
I was diagnosed with melanoma (skin cancer) in July 2011. In this video, my wife Tracy & I share what God has been doing in our lives throughout my journey with cancer.
I hope that you will be blessed watching this video and you will come to experience some of the faith and peace that I have experienced in my journey fighting cancer.
This video was taken on 15 April 2013 during radiation treatment for my brain tumours. Many thanks to Berwick, Stuart & Dave for their work editing the video.
Wow, it’s been a big week since my last blog post. The effects of the radiation treatment have been subsiding and I am now back at work and into the thick of things. The nausea & fatigue have gone and I’m slowly weaning myself off the steroids which I have been taking to stop my brain from swelling. I now have a shiny noggin thanks to delayed onset hair loss but it appears to already be growing back which is promising 🙂
The church I am a member of (Encounter Christian Centre) has put me as the focus of their prayers this last week for healing, and I have been blown away by the response from my church family towards my situation. My story was videoed during the week and played on the big screen at church on both the Sunday services, followed by the entire church standing together in faith-filled prayer to believe for a miracle healing for me. Members of the church have been making meals for our family and offering help for looking after the kids and even cleaning the house! I can’t tell you how incredible it is to know that people are with me and my family through this situation. I will post a link to the video when I get my hands on the copy.
On Monday, I visited the medical oncologist for a routine 3-weekly catch up and he gave me the good news I had been waiting for since my previous blog back in January – the drug company (GSK) that is sponsoring my use of the chemotherapy drug Dabrafenib has agreed to continue with supplying me the drug despite the evidence of ‘new disease’ in my brain. This good news was in part attributable to my medical oncologist who advocated to GSK on my behalf to stay on the drug as the tumours in my lungs had continued to show positive signs of regression despite the brain lesions.
I am currently awaiting confirmation of a follow up MRI or CT scan in the next few weeks which may show results from the radiation treatment as well as the ongoing chemotherapy treatment for my lungs. I will post more info once I know these results.
Keep the faith!
David
Well, it’s finally over. No more radiation. Done. Over and out. Happy day!
The last few treatments have been completed successfully, although the radiation effects didn’t go quietly. Friday was a good day, as was Monday but Tuesday – the final day of treatment – began ominously with a 6am wakeup call of my stomach trying to turn itself inside out. That set the morning off to a bad start with nothing staying down, including the anti-nausea pills. I made it to the radiation chamber for the final zapping around 9:15am after which the lovely nurses decided they want me to go home in a better state than I came. So they stuck a drip in my arm and gave me fluids for a couple of hours while I dozed on the Lazy-boy in the acute oncology room.
After re-hydrating, I felt a lot better and went home mid afternoon for a nap. Since then I have felt good but decided to stay home today so I’m all ready to hit the ground running for work on Thursday.
On Monday I decided that my hair wasn’t going to fall out so I went and got a haircut from the local Just Cuts. I may have been a bit hasty in proclaiming my hair as safe as the last couple of days has seen my hair starting to fall out in clumps. Even my aspiring-hairdresser daughter Chloe didn’t hold out much hope for me when combing my hair tonight.
Anyway, hair loss aside, I’m feeling back on top and ready to rumble. I’m told the effects of the radiation treatment will linger for up to a couple of weeks after it finishes but I’m confident it won’t be anything like my experience during the treatment phase. I will have a follow up MRI scan in around 4 weeks which will show the results of the radiation treatment.
So that’s it from me for now, I’m looking forward to seeing miracles continue to happen in my life and in the lives of others who believe in faith for miracles.
Talk again soon
David
After the ups and downs of last week’s radiation treatment, I had a fantastic weekend. And by fantastic, I mean normal…which is as good as fantastic in my books. I even got to go to a friend’s wedding which was a great event, one I wasn’t sure I would get to based on the events from earlier in the week.
Monday brought the spectre of 5 back-to-back treatments which didn’t exactly fill the heart with joy but I thought of it as like having a week off sick with some mystery virus. Monday’s treatment went well – I managed to keep my stomach contents intact although I wasn’t eating much just to be on the safe side. Tuesday, however, started poorly with a rush to the kitchen sink immediately after sitting down to eat breakfast. I persisted with breakfast which came back to haunt me on the long car-ride into the hospital for treatment. I slept it off that afternoon and by Wednesday morning I was feeling normal-ish. It may have helped that they upped my dosage of anti-nausea medication (yay for drugs!)
Yesterday and today have been much better days and I even took the opportunity to walk Chloe to kindy yesterday with Tracy & Sam. Today I’ve been awake all day running on the smell of awesome (and maybe a little caffeine) and feeling good. I’ve got another treatment tomorrow followed by 2 more on Monday & Tuesday then I’m home free! I’m looking forward to getting back to work after the treatments finish as there are a myriad of exciting IT projects in the pipeline for the company I work for.
I want to take the opportunity to say a big thank you to all the people who have been helping us out this last week, both with food and with helping look after the kids. We deeply appreciate your help and support and we feel so humbled to be the recipients of your generosity.
See you all again next week
David
It has only been 3 days since I started radiation treatment for my brain tumours, but already it has been a bit of an experience. It started on Wednesday with my first visit to the radiation chamber where I was going to be coming each weekday for the next 2 weeks. I began my first treatment with some ideas about possible side effects but nothing I could definitely say was going to happen.
Wednesday’s treatment involved a planning scan to make sure everything was lined up correctly and my mask was fitted which kept my head in one place while the radiation was taking place.
The big machine in the above picture moves around my head so it can administer the radiation without requiring me to change position at all. The whole radiation process takes less than 5 minutes! After the radiation, we popped in to see my 84-year old grandma who was also in Auckland hospital awaiting news of whether she was going to get surgery for a narrowed heart valve.
I felt ok after Wednesday’s radiation for a couple of hours until around 11am when my head started getting sore which gradually intensified. I took some paracetamol and this helped to alleviate the headaches but later in the day I also started feeling nauseous.
Thursday morning I woke up around 6am with the feeling like I needed to throw up – which I did. That begin a day of puking my guts out at various times throughout the day which made for not a very happy day unfortunately. I managed to keep it down while in the radiation chamber to avoid christening the equipment but not long after leaving radiation oncology I was at it again. Fortunately, they have empty containers available at radiation oncology for such events.
I also got a prescription for some drugs – Dexamethasone for the brain swelling, Omeprazole to counteract the acid reflux induced by Dexamethasone and an anti-nausea drug Domperidone as well as some Codeine Phosphate for pain relief. After taking the drugs, things started to settle down a bit but I ended up sleeping for around 15 hours yesterday due to the tiredness and lack of energy from not eating all day.
This morning I woke up a new man! I ate breakfast and haven’t puked all day (as at midday). I had my radiation dose this morning but am still feeling pretty good. Let’s hope this continues through the weekend so I can go to a friend’s wedding tomorrow 🙂
Anyway, just wanted to update you all on my progress thus far – I will post again next week after a few more treatments.
Talk soon!
David
My journey with cancer has been an interesting one to date, with plenty of ups and downs and more twists and turns than a John Grisham novel. Sometimes I feel like one of the hobbits in the Lord of the Rings, wondering what adventure (or misadventure) lies around the next corner.
This week has been no different with a big shift in the direction of the treatment of my cancer – in less then 2 weeks I will undergoing 10 days of full-brain radiation treatment at Auckland Hospital to target the cancer spots in my brain. Yes, I did say spots plural – the MRI scan I had a couple of weeks ago revealed not one but 5 spots in my brain, spread out in different sections. The spots are not large – mostly around 3-5mm in size but anything growing inside the brain puts one at risk of epileptic seizures and other issues.
My medical oncologist said this ruled out the option of stereotactic radiation which had been tabled after the CT scan back in January revealed the presence of the spot in my brain. With the number and location of the spots, they advised that full-brain radiation would be the preferred option as it would treat all of the spots in one go.
I followed this meeting on Monday with a meeting on Tuesday with the radiation oncologist who gave me more information about the actual procedure and details about the possible side effects from full-brain radiation. These included short term side effects such as nausea, fatigue, hair loss, swelling and scalp irritation. He also mentioned some possible long term side effects such as memory loss, cognitive impairment and other brain function. Heavy stuff.
To be honest, the thought of losing brain function is somewhat scary – physical disability can be aided but loss of mental ability can be harder to deal with in my opinion. But whatever you do, do not panic! God is in control of the situation and he’s looking after me and my brain. He gave me this brain because he wants me to use it and I don’t think he’s planning to take it away from me just yet.
I met today with the radiation oncology team to go over the radiation treatment process once more and to have a special latex mask fitted to my face which will be used during the radiation treatment to keep my head still while under the machine. The radiation process is fairly quick – half an hour each day for 10 days (excluding weekends). I am told they need to leave at least a 6 hour gap between treatments otherwise the radiation will start killing the healthy cells too – not the outcome we are wanting.
After meeting with the radiation therapists (as they called themselves), I sat down with one of the nurses Judith who told me about the possible side effects again and how they would counteract them if they occurred. Judith also asked me the crucial question – did I have anyone supporting me through the process? I told her about all the family & friends I had behind me and all the churches around NZ that had me on their prayer lists. She said to me that the people that had a good support network (particularly church-based) were much better off for it when going through the journey of cancer and the treatment required to deal with the cancer.
I’d have to say that I agree with Judith, people who are going through hard times need other people to support them and stand with them through it. And by hard times, I don’t just mean cancer. There are plenty of things that way on peoples’ minds – financial difficulties, relationship troubles. Even just the feeling that life is getting on top of them can drive people to dark places. We are called to be the light in peoples’ worlds – even just being a listening ear or a shoulder to lean on can be all that is needed to lighten someone’s situation.
I want to say a big thanks to everyone who has stood beside me over the last couple of years, especially those who have believed with faith for me to be healed. Knowing there are people who share that inner peace and trust in God’s grace and mercy fills me will a real sense of joy.
Talk again soon.
David
P.S. I’ve changed my blog from Tumblr to WordPress as it has more features, including allowing people to follow the blog without requiring them to sign up for an account. If you would like to get emailed every time I update my blog, you can simply click the ‘Follow’ button at the top of the page and enter your email address and you will be on the list!
Back in September I blogged about the first test results I received following my new drug treatment regime of the cancer ‘wonder drug’ Dabrafenib. That scan showed a significant reduction in size (up to 25%) of the nodules in my lungs and no new disease. Since then I have had another full CT scan in January which has showed further decrease in the size of the lung nodules and has also showed my neck (the original source of the cancer) to be clear from disease.
Unfortunately, the scan also showed a spot had appeared in my brain which wasn’t present in the September scan. This has meant that I have been forced off the road for at least 12 months due to brain tumours causing increased risk of epileptic seizures.
Subsequent to finding this out, I have also been informed that due to the brain lesion being classified as ‘new disease’ that this shows that the cancer has built a resistance to the wonder drug, despite the evidence of positive results in my lungs. The upshot of this is that the hospital may not be allowed by the drug company that has been ‘sponsoring’ my use of Dabrafenib (GSK) to continue prescribing me the drug.
But before we get ahead of ourselves and think about throwing in the towel, the hospital has referred me for an MRI scan which will provide a more accurate picture of the brain than the CT scan can offer. They say that this will either confirm or refute the presence of cancer in my brain and, if present, will show how many spots there are and how big they are. The results of this will both determine my eligibility to remain on the drug and also give the Stereotactic Radiosurgery team in Dunedin hospital a better picture of my brain to assist them with the radiation treatment.
My oncologist has also said they are starting a phase 1 trial of a new kind of drug called an ERK inhibitor which targets a protein further down the chain from the B-RAF inhibitor drugs like Dabrafenib. This new type of inhibitor drug is even newer than the B-RAF inhibitors which have been trialled for the last few years. Auckland hospital is part of a group of hospitals performing these phase 1 trials of the ERK inhibitors so I would truly be a guinea pig for them to test the effectiveness of the drug and any potential side effects, some of which are still unknown.
So I await the results of my upcoming MRI scan and look forward with expectancy to see what miracles God will perform in my body through this. Let the adventure continue!
David
“God will keep in perfect peace all who trust in him, all whose thoughts are fixed on him” – Isaiah 26:3 (NLT)
(Un)common Sense 