Spring descended on Auckland this weekend, with glorious warm blue sky days. Chores, laundry, groceries, catching up with friends in familiar places and spaces – it felt good to be outside. I found myself thinking back to spring last year when there was a very different sort of activity in the house: Jared was home from the hospice, Elise was 7.5 months old, the daily rhythms were Jared’s care and Elise’s routines. On one hand, Jared was dying and every day for him was an arduous mountain of fatigue and symptom management punctuated by visits from the hospice, district nurses, pain team, pharmacy, GP….on the other hand we were together again as a family, Jared was where he most wanted to be, and the changing of the seasons was accompanied by a new sense of hope and purpose.
David Williams, previously a stranger to us, had arrived on the scene to help Jared write his book – the book that many who read this blog had encouraged Jared to write. Each day, at 12pm, David would arrive with his iPad and camera, climb the stairs, sit with Jared for an hour and record their conversations. There were 21 conversations in total, covering everything from the story of Jared’s life to the reality of dying to Jared’s hopes and dreams for the book, and for Elise. These conversations, together with excerpts from Jared’s blog, form the basis of “Message to my girl”.
Jared’s commitment to the project was absolute. In many ways this was his “best” hour of the day, or, at least, the one he poured all of his available energy into. While battling pain, muddled thoughts and crippling fatigue, he would press on, aware that this final task was worthy of everything he had. Words can’t express our gratefulness to David for taking on this project. His courage, sensitivity and commitment to seeing Jared’s final dream realised were extraordinary.
“Message to my girl” is told in Jared’s words with his trademark openness, honesty and humour. It is a beautiful account of his life, and the purpose, courage and love that motivated him to the very end. My first copy arrived last weekend – I was struck by how proud Jared would have been that he had co-authored such a book and how precious this gift will be for Elise.
For me, the public release of the book is both exciting and anxiety-provoking – the spotlight was very much easier to share with someone as gregarious as Jared. However we were always united in wanting this story to be told authentically and honestly and the courage I need to gather for the next little while is nothing compared with that Jared displayed in his final weeks.
“Message to my girl” will be in New Zealand bookstores from Monday 28 September. It can be bought online at Fishpond and Mighty Ape (NZ). It is listed with the Book Depository (UK, ships worldwide) and may later be available through Amazon.
The official book launch will be on Monday 28th September at 6.30pm at “Crave”, 25 McDonald St, Morningside, Auckland. We’d love you to come – there will be refreshments, some of the key people telling the story of the book and copies available for purchase.
Finally, Spring presented the opportunity to introduce Elise to the snow. Her frown belies her southern roots….I have great hopes that future snow experiences will be more successful!
Getting sick is a lot like riding a train into a dark tunnel. Its dark and a bit (or maybe a lot) miserable when you first ride into it, but in the distance is a light. That light is what you are targeting, it is what represents coming out the other end, getting better.
When you are palliative, there is no light in the tunnel. You go into the tunnel, become enveloped by darkness, but don’t have anywhere to go, no light so to speak. Each day is a progressive deterioration on the day previous, there is no hope that I’m going to get better. The focus is instead keeping me as comfortable as possible.
Its a bit of major mind shift, because every other time I have been sick, there has been a light. Sometimes dim… but still a light.
Since I last posted I managed to get discharged from hospital into hospice care, with the goal to move from there to home in the longer term, which after two weeks, I also managed to achieve.
One the outstanding issues that was preventing me from moving to hospice in my last post was my ongoing biliary sepsis. With unclamping the PTC tube and antibiotics I have managed to recover from that.
The focus in the hospice was getting myself into a manageable space where pain etc could be managed from home, which I now too have achieved. With so much water having passed under the bridge, I apologise for the lateness of this blog post. I now find myself at home spending my last days with my family, which has been great after close to 7 weeks in hospital and hospice care. I now have my family around me all the time, so they aren’t ‘scheduled’ visits, and it is much nicer to be in a familiar environment.
As alluded to at the beginning of the post, being palliative is quite the change in outlook and mindset. What it essentially boils down to is that I am now waiting to die.
I don’t necessarily want to delay that for as long as possible, I’m not sure what I want to be honest. I’m helpless at the moment. Death will come to me as quick or as slow it decides on it’s own terms.
I know I’m not eating enough to sustain life and that will catch up with me eventually…
I know i’m keeping up with my fluids…
I know that my body is disappearing in front of my eyes, slowing deteriorating bit by bit each day…
I know that death creeps around the corner waiting to pounce.
I know that all of this is beyond my making. Maybe death will pounce next week, maybe in 5 weeks time. He/she will choose their own time.
In the mean time I will enjoy what family time I have, I will catch up and see friends old and recent. I will enjoy what time I have left for whatever blessed time it is that I have it for.
For those following this journey, short or long, I don’t know how much of it there will be left. I will try to update when I can, but the reality of it is that as I deteriorate, it will be harder to do so. I am already on a lot of drugs that dull the mind, it can make writing harder, and make concentration harder still. I want you all to know that I am not unhappy, but content. I am taking each day as it comes, absorbing what it has to bring me and trying to make the most of while I can. This is not to say there aren’t hard days. Hannah and I have had our fair share of shedding tears as our reality comes to home to bite, but that is normal. Who wouldn’t cry when death is just around the corner, but, on the whole we are both at peace, preparing ourselves for what the next chapter will bring.
I am not afraid of death, maybe partly anxious about it’s mechanism, but I have a faith that reassures me however it happens, I will be going to a better place, one where death and suffering will left behind and the resurrection of Christ will become the most apparent it has ever been to me.
Until next time….
In what seems to be a long time since my last post, a lot of water has passed under a very small bridge. I came home on leave with the PTC drain in and went back to hospital so that I could have the stent inserted under a general anaesthetic. This procedure happened the day after I was readmitted and it turned out to be the most painful day of my life. What should have been a 45-60 minute procedure ended up being 3.5 hours long. When I woke up from the general anaesthetic I was in agony. I was in so much pain, I don’t even know how to describe it. The post anaesthetic care team did their best to give me analgesia sufficient to control my pain and they were unable to do this. Over the course of a day, I had 3 x 10mL boluses of Ketamine as well as going through > 2500mcg of Fentanyl. It was established that I needed an epidural but they also needed to establish that there was no other cause for this new pain so it was decided that I would have a CT scan to rule out complications. Fortunately there were no new or concerning features on CT. So I returned to the post-operative care unit and an epidural was placed. My experiences of ketamine boluses were also terrible; its auditory and sensory hallucinatory effects made me feel really trippy and I would not wish that sensation on anyone. Tuesday officially went down as the most painful day of my life. The following two days not much changed with my regimen for pain relief and a trial stop of the epidural occurred on Friday. Unfortunately that too was unsuccessful.
On Friday, Hannah and I, together with the palliative care and oncology teams, had some long and hard conversations around when would be appropriate to stop aggressively pursuing quantity of life. We agreed that whilst I would still happily be treated for small things, we were not going to pursue treatment that would forsake quality of life. My oncologist was of the opinion it was unrealistic to go back on chemotherapy as it was evident the cancer had stopped responding before the period of non-treatment and my overall fitness and health had deteriorated so rapidly over such a short period of time. Based on this we came to the decision that I am now for palliative care only. From now on, our decisions will be based on things that influence my quality rather than quantity of life. How short or long that is is anyone’s guess. My priority is to get home if I possibly can as that is where I want to be.
Going on in the background of all of this has been ongoing fevers that we have yet to identify a source for but whose guilt most likely lies in biliary sepsis. In order for me to get home, the first hurdle is to treat this successfully.
We always knew it would come to this at some stage, but perhaps not so soon. For some reason it always seemed to be a few months down the track. For whatever reason I have managed to outlive anyone’s predictions for the past five years. But now the chickens seem to have come home to roost.
I intend to keep blogging through this process as I document the journey to death and I hope and pray that it gives Elise something to read so that she can get a glimpse of who her father was.
Until next time…
During this current admission I had a CT scan (that I mentioned in a the previous post) to assess where things are at with regards to my bowel obstruction and the current issue of obstructive Jaundice.
What I didn’t mention is what it found with regards to my cancer, and unfortunately, its not good.
There is significant progression of the liver disease over a very short period of time. The dominant large lesion is in segment 7 of the liver has doubled in size and there are multiple new lesions in the 0.5-1cm range throughout the liver, with existing lesions also increasing in size. There is also further development in the lymphadenopathy around the renal arteries and in the general retro-peritoneal area, including increasing lymphadenopathy around the hilum of the liver. The infiltrative disease around the liver could well be responsible for the biliary obstruction that I have, and may have been responsible for the duodenal obstruction as well.
Basically its pretty bad. I have missed three rounds of chemotherapy now due to the complications and hospital admissions over the past month, and that is likely to be a big contributor as to why my disease has progressed. However, it is of such rapid disease progression that my oncologist tends to think that it may have starting progressing under chemo, even thought my last scan was stable (and relatively recent).
So what does all this mean???
Well, basically it means I need to get back on to chemotherapy as quick as possible in the hope we can slow down the growth. If in fact regrowth was beginning to happen whilst on chemo, it suggests that chemo is losing its efficacy, and that means i’m starting to run out of options.
In the mean time I have to get past the current main issue, which is my biliary obstruction.
On Thursday I had my ERCP under a general anaesthetic and it unfortunately it wasn’t successful as they couldn’t get access to the ampulla at all due to the duodenal stent being in the way. This means that I have had to go for a PTC drain insertion best described in the video below rather than by me.
This procedure was due to go ahead on Thursday afternoon until I spiked a fever of 39.0 degrees. It was deferred and I was started on IV antibiotics in case this was choleangitis. Choleangitis is an infection of the biliary system and can be a very rapid onset sepsis and can lead to septic shock. The fever I had was absolutely miserable with rigors and lasting for about 5 hours. I haven’t had one since thankfully, and the thinking now is that instead of choleangitis, it was probably a septic shower as result of manipulation around the biliary system in the failed ERCP. Fortunately the latter as a diagnosis is much better than choleangitis.
On Friday I went for my PTC insertion under light sedation and they got as far as getting the drain into the duodenum via my liver. It was a difficult access just because of the location of the left lobe of my liver relative to my ribcage, so they weren’t able to get the stent in. The plan is to go back under general anaesthetic and put the stent in so that I have internal and external biliary drainage. I am currently biding my time in hospital until that can happen early next week and then all things going to plan start chemotherapy the week after that.
So as you can see, there has been a lot happening over the past few days, both in terms of medical management and developments, as well as the processing of the CT report and what that actually means. What it really means is that I am getting down the last ditch therapies now for treating this cancer, and it has established that if you give it an inch, it will take a few dozen miles with that liberty. What treatments are left as options are really speculative, and whether or not I will get response is equally as speculative. Hannah and I have processed this and understand that it means I am unlikely to make Christmas this year, and my time could be up sooner rather later as the decision to go palliative is getting closer and closer.
In someways this hasn’t been as hard to process as you might think, and I think that is in large part due to the fact that I have had the better part of 5 1/2 years with this illness to do this processing. It is however, a brutal shock back to the reality I face, as it has seemed like the past 6 months has been a holiday, as we have seen Elise’s first few months of adventures in this world. It has been an awesome escape from reality as we watch new life blossom…
But now the holiday is now over, and I have to get back to the business of dying. I plan to do that the best way possible, as not everyone has the privilege of anticipating their own end. So often people’s end times are full of regrets and catching up with bucket lists. I don’t have either of those, I am grateful for the life I have lived, I have been given extraordinary opportunities to embrace it in all its beauty, God has blessed me enormously. I plan to enjoy every last moment, savour its delight and its low times. It’s all part of the package.
Until next time..
A lot has happened since I last updated this blog. I have spent time in hospital and I have had all sorts of investigations.
Firstly, I don’t have a gastric ulcer, which was where I left things off in the last post. I had the gastroscopy, and it showed a perfectly normal looking mucosa lining my stomach. It did however suggest that the stomach and the first part of the duodenum are bigger than normal, so it was decided I should have a barium swallow to investigate further since I still had symptoms of pain, nausea, and vomiting.
The barium swallow showed a hugely distended stomach as well as the first 2 parts of the duodenum. The barium only partially moved beyond D3 (3rd part of duodenum), indicating that there was a partial obstruction at that location. We didn’t know how long or narrow that obstruction was though.
It was decided that using a duodenoscope, a gastroenterologist would get down to the obstruction and pass a cannula through it injecting contrast under fluoroscopy (x-ray guidance) in order the characterise it’s nature. An intrinsic obstruction might suggest stricture from radiation, or perhaps even adhesions from multiple previous surgeries. An extrinsic obstruction might suggest there was a lymph node or a mass pressing onto the duodenum from outside the gut and compressing it. It ended up being unclear, but it seemed more likely to be a radiation stricture than anything else, so a stent was inserted in order to open up that part of the gut again. This was all done under the same proceduce, although it was the second attempt as I didn’t tolerate the procedure well the first time under light sedation. The second time was done under a proper general anaesthetic.
That was done last Tuesday morning, and in the afternoon, I developed severe new onset right upper quadrant pain in my abdomen, with pain radiating to my right shoulder. It was unclear what the cause of this pain was, but I was x-rayed as perforation is a potential complication of stent insertion. The x-ray showed no evidence of free air in my peritoneum, reassuring us that it was unlikely to be a perforation. It also showed that the stent was open and patent, which was good news. The pain continued through the night and I soaked up some industrial levels of pain relievers in order to be comfortable. It was decided not to investigate further as the pain on the whole was improving the next day and I was able to eat and drink again for the first time in 3 weeks without vomiting. During that time I had been put on TPN (Total Paraenteral Nutrition), which is IV nutrition, in order to prevent me from getting malnourished and from deconditioning any further.
I was discharged on Friday, with a working stent and a new lease on life…. or so I thought.
One of my last blood tests in the hospital showed that my bilirubin had jumped from 12 to 51 within a day, and this had been overlooked. I noticed the result on my discharge summary that night after getting home and thought it was a bit odd. On Saturday morning, sure enough, Hannah noticed that the whites in my eyes were going yellow. I had Jaundice.
So on Monday, I was readmitted back to hospital with obstructive jaundice and a bilirubin of 95. My skin is now starting to turn yellow.
One of the risks of obstructive jaundice is that it can potentially become septic. This is called choleangitis and it is usually characterised by aggressive sepsis and septic shock. It is life threatening.
Today I had a CT scan to try and help find the cause of whatever is causing the obstruction of my bile getting from my liver into my gut. The scan showed both intra and extra-hepatic duct dilation, suggesting there is an obstruction outside of the liver, but it didn’t identify what that obstruction is, i.e. is it malignent, or stent related etc. The stent is however up against the ampulla, so could be contributing to the problem. The gastroenterologists have decided to go ahead and do an ERCP (endoscopic retrograde cholangiopancreatograph) this thursday to see if they can identify the cause, and then hopefully relieve the obstruction. This would be a best case scenario, as the alternative would be to go and put in a PTC tube (percutaneous transhepatic cholangiostomy), where they put a tube from your skin, into the liver, and then into the bile ducts to relieve the obstruction from behind. This is not an ideal solution as it doesn’t actually fix the source of the obstruction, it just relieves it (and that tube stays there to continually drain it).
So, I am in hospital , waiting for the ERCP under another general anaesthetic this Thursday and hoping it will fix the jaundice. Then, I can go back on chemo and try to get some stability back into my life again. 🙂
I shall keep you all updated as things progress…
Last week I had my 25th CT scan and it was good news.
I haven’t had eyes on the scan yet myself, but basically it looks the same as the previous scan I had back in February. This means that the disease is stable, which is about the best we can hope for with Avastin, and it means the Avastin is working. So far I have had 89 rounds of chemotherapy total, 15 of which include Avastin, meaning I have spent close to $90,000 on my chemotherapy over the past 6 months.
The advice, since the Avastin is working, is that I should continue with it. It really begins to put into perspective what the impact of last years fundraising effort has had. At the time 60k seemed like a huge target that couldn’t be reached. As time has progressed, it has proved to be only the tip of the iceberg, and the money raised has enabled me to continue for a lot longer. At some point however, we will reach a point when the money runs out, and we will be left with the decision over whether to continue with treatment (in a debt based way), or to stop and let nature take it’s course. As regular readers of the this blog know, I’ve long since accepted the final outcome, so its not too much of a stretch for me to let nature take its course rather than to bankrupt family and friends with the ongoing ridiculous costs of my treatment, but that is a bridge we will cross when we get to it.
In other semi-related news, it would seem that I have developed a gastric ulcer over the past week, which means I missed my most recent scheduled round of chemotherapy. 5-FU is an agent that gives me mucositis along the entire length of the gastrointestinal tract, so the stomach not withstanding, has subsequently ulcerated. Avastin can also impair healing as well, so its likely the combo of the two has led to mucosal erosion and then impaired healing. I have since started on high dose Omeprazole (a Proton Pump Inhibitor) to help reduce the acidity of my stomach and therefore help with it’s healing. The last week has involved persistent nausea, epigastric pain and multiple episodes of vomiting at all hours of the day, so it has been a bit of a miserable time. I am scheduled for a gastroscopy this coming Wednesday to get a firmer diagnosis and to rule out other possibilities for my symptoms in the context metastatic disease.
Oh the joys of cancer… 🙂
Until next time…
Life can be interesting in how it provides opportunities that you may not have foreseen in your life when you were younger. Throughout medical school and before, I would never have envisaged that I would be playing the role of raising awareness about bowel cancer. Cancer in general was that disease that I treat, and the thing that ‘other’ people had to deal with. Being diagnosed at the age of 27 was a paradigm shift, a disease concept was all of a sudden a very real part of my life, one that I have had to live with ever since.
I have been an ambassador for Beat Bowel Cancer for three years now. Their goal as an organisation is to raise awareness of an unglamorous disease that is often underplayed and not widely known about. They are also advocates for bowel cancer related screening and treatment. An interesting point which for me validates the effort of this organisation is that when someone famous is diagnosed with breast or prostate cancer, we all know about it, but when it is bowel cancer, the media often just report it as ‘cancer’, a term that is nebulous and unhelpful. To me it typifies the aversion that we seem to have in talking about this particular disease. When you hear that bowel cancer kills more people than prostate and breast cancer combined, you realise the imbalance in our understanding of this. Hence, as an ambassador, I see it as my responsibility (given my diagnosis) to do what I can, while I can, in the hopes that it will save lives. As with any cancer, the earlier you catch it, the higher the likelihood of successful treatment. If we can raise awareness, implement a screening program, and have treatment options that are comparable to the rest of the developed world (don’t get me started on the availability of Avastin… ), we can make some serious headway into the mortality of this disease.
Last week, as part of the campaign to raise awareness, I was invited to be interviewed on Good Morning.
It should be noted that due to the way TVNZ on demand works, this link will only be available for another 13 days!! So it won’t be available come July. 😦
Until next time…