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…
Beat Bowel Cancer Aotearoa (BBCA) is an organisation dedicated to raising the awareness of bowel cancer. A few years ago I was asked to be an ambassador for them to help them raise the profile of bowel cancer in NZ as it is one of our biggest killers. Breast and prostate are the fashionable cancers that celebrities get (although no cancer is actually fashionable) and people like to wear ribbons or grow moustaches to raise awareness for. Bowel cancer is a bigger killer than both of them combined and slides under the radar forgotten.
Leading up to Christmas this year, BBCA has launched the ‘I give a crap’ campaign that they hope will get spread via social media and the likes to help raise awareness of bowel cancer. The idea is to help people realise that if you actually catch it early by knowing what symptoms to look for, you can beat this disease. As part of this campaign, BBCA has put two videos together, which you can see here. See if you can spot me in one of them. 🙂
Help raise awareness of this cancer in NZ which only has a 55% survival rate (at 5 years) when compared to 75% in the OECD. Its easy to talk about bowel habits if you give a crap.
I give a crap this Christmas*….
*I probably recorded that line about 20 times till I had it nailed… ahh showbiz..
The radiation has finished.
This post is in actual fact not a fair reflection of when the radiation did finish however. It actually finished two weeks ago, but the business of not working has interfered with getting around to post an update.
Overall, radiation struck me a lot harder than I anticipated. There was some nausea that was tolerable, but the main symptom that really took its toll was an indescribable fatigue. I have now been off work for six weeks. Initially that time off work was like an unexpected holiday, albeit one filled with the irrational excess of slumber required for sub-normal function, but as the days accumulated, it has a become a tedious monotony of fatigue, sleep, and boredom. Having enough energy to be bored, but not enough to sate that boredom is a subtle but effective form of mental torture. I am well and truly ready for a change back to how it used to be. It has only been in the last 4 or 5 days that I have been able to get up in the morning and feel like I can actually make something of the day that goes beyond TV and sleep.
At this stage, I’m not quite up to going back to work, but I anticipate that I will be able to get back to work next week (starting Oct 14). I am really looking forward to be able to get back to doing something I enjoy, and which in itself is energising.
In the next couple of weeks, I will also have a repeat CT to establish the effectiveness of the radiation, and how naughty the liver lesion has been in the absence of chemotherapy. The pencilled in plan is to start chemotherapy again on labour weekend, this time a combination of 5-FU and Oxaliplatin (FOLFOX), but this will be confirmed closer to the time and will depend somewhat on what the CT shows. The management of the liver lesion at this stage has yet to be established, but I suspect that a lot of that will depend on how responsive the retroperitoneal lesions were to the radiation, what the CT shows, and whether or not a further period of stability will need to be established on the altered chemotherapy regime.
For those whom may not have heard yet, as an adjunct to the baby news. Hannah is now (almost) 25 weeks along, and we are having a baby girl. Pink items have already started to become thematically appropriate, and the yet-to-be baby room has now advanced from a box room to just a room (with a nice new stroller in it)…. Its a work in progress.
Until next time…
Last week I began the week as I do any other.
Monday was the 4th fraction of radiotherapy, and Tuesday was the 5th, but as these two days progressed, so too did an unnatural sense of fatigue that began to overwhelmingly take over my body. This culminated in a Tuesday where the exhaustion was no longer able to be ignored. I came home from work on Tuesday night a wreck, falling asleep at the wheel as I was driving myself home from work, and collapsed into a heap, sleeping for most of the next 24 hours. Wednesday was subsequently a day off, so too was Thursday and Friday. I was just too tired.
Meanwhile the radiotherapy treatment continued, 20 minutes out of each day, every day.
On Friday I was supposed to go to Melbourne for the weekend with Hannah. Hannah has a paediatric conference over there at the moment, and the plan was for me to join her for the weekend before it launched into a full schedule. However, on Friday after the radiotherapy, all packed and ready to go straight from the hospital to airport, we had to make a last minute call that I didn’t go. I realised just how miserable I was feeling, and how miserable my weekend in Melbourne would have to be. I drove home with my packed bags, and Hannah drove on with hers to the airport.
I was gutted. Hannah and I had been looking forward to this weekend for a while.
But more than this lost weekend, it raised the question of something bigger… how am I going to continue to work.
After a lot of introspection over a number of days, I have decided to take a leave of absence from work for 5 weeks. I decided, whilst I’m sure I probably could work if I really pressed myself, it wouldn’t be good for me working myself to exhaustion everyday. I have spoken with the RMO unit to arrange the leave, and it will likely be that a chunk of of it will have to be unpaid leave.
So, I now have 5 weeks of freedom to do with what I like, except for the mandatory 20 minutes each day at the hospital receiving treatment, and the increasingly mandatory time I require for extra naps and sleep time at varying times during the day.
I try to think of this a necessary season in my life, one that will hopefully end with the return of a reassuring routine at the end. In the mean time I will keep continuing with the treatment for another 16 fractions and hope that there will be some response.
Until next time…
This week has marked the beginning of a new phase of treatment. On Wednesday, I started radiation therapy of my retroperitoneal lymph nodes. It is a process of technological intrigue where physics and medicine meet to produce the third modality used in treating cancer. I have been subjected to the other two, chemotherapy and surgery, multiple times, but this is my first foray into therapeutic ionising radiation instead of the diagnostic kind. Having said that, I have now had 22 CT scans in the past 4 1/2 years, and the running joke is that it borders on being therapeutic in and of its self.
The process of getting radiotherapy is a fairly straight forward one, and involves more work behind the scenes by professionals that it does by the patient. My involvement is largely relegated to learning how to lie still for 10-20 min each day in the exact same position. A week before the therapy started, a planning scan was done to help plan how they administer the radiation. The radiation I am getting is called intensity modulated radiotherapy, where multiple radiation fields are used to focus on the targeted area whilst minimizing damage to the surrounding organs. It is a fascinating process where the beam is not static as there is a continually changing window through which the beam passes through to dynamically adjust the dose of radiation to the targeted areas in real time. The scientist in me has been intrigued.
As far as side effects go, I am yet to really feel them. I am told that nausea and fatigue are the most common, as well as local side effects depending on the area of the body being targeted. After each fraction, I have felt for 2-3 hours a sense of deep burning inside of me. It’s hard to know how much of that is imagined or real, but when I asked about it, I was told that it is probably the sensation of an acute inflammatory response in the area that has just been irradiated. Talking to people who have experienced both radiotherapy and chemotherapy before, it seems that radiotherapy is overall far better tolerated. The toxicity does tend to be more accumulative, so I expect that I will feel a lot worse towards the end of the 25 fractions than I do now.
In the interim, I intend to continue to work through the treatment as long as possible, realising that there is a fairly high chance I will have to take a few weeks off work towards the end as toxicity escalates. Certainly the early stages of treatment are basically a non-event in terms of impacting quality of life when I compare it to chemo. I am looking forward to the point where some of the therapeutic benefit is realised by reducing the metastatic pain that I still get. I am keen to reduce my reliance on pain medication to keep me functioning throughout the days.
The upside of all of this is the absence of chemotherapy in my life at the moment. I am enjoying having my weekends back for leisure rather than for nausea, of course the downside is that I am having shave far more often than the once every 5 days that I could get away with on chemo.
Until next time….
This is a belated update of a CT scan that was done back in mid December. The reason for the delay has largely been due to waiting to find out it’s implications.
The scan showed ongoing stable disease, with further reduction of the hepatic lesion we noticed on PET back in May last year. The retroperitoneal node has increased by about 2mm, but within the margin of error, and there is some questionable new lymphadenopathy around the superior mesenteric artery and the inferior mesenteric artery of unknown significance. It is called unknown significance because it could be reactive, or it could be malignant, and only time will tell which it is.
The implications are that because this is disseminated disease, surgery would not realistically be an option. Surgery is largely reserved for localised focussed disease, and would likely cause more problems than it would solve in the current situation. This doesn’t mean surgery is off the cards permanently, as with all things, there is always ongoing review, but with all things being equal, surgery is unlikely to present itself as an option again except in a palliative setting.
So the plan for the time being is ongoing chemotherapy until the cancer stops responding to it. The rounds have been progressively getting rougher, so at some point toxicity will come into play as well. My next scan should be around mid March, which is fairly soon, and as always will help direct the next 3-6 months of my life.
Until next time…
Well, again I have been slow to update. In large part it has been because between rounds of chemo I have been working long hours and burning the candle at both ends. The net result has been lack of time or energy. Paradoxically, the long hours whilst in part exhausting when run in parallel with chemotherapy, have been satisfying. I am learning that I am increasingly finding an affinity for general surgery as a specialty, and that it would be the career I would embark on if not for current health limitations. Having said that, there are workings underfoot that may come into play once I know the outcome of my next CT scan and have a little more certainty about my expiry date.
The last two rounds of chemo have involved some experimentation of my anti-emetic medications, and to somewhat limited success. Prior to round 45, I took my apprepitant a little earlier before my round, and arrived late so commenced chemo a little later than normal. What I discovered was that for the hour before chemo when I had taken the apprepitant, I experience some fairly horrendous anticipatory nausea, and chemo hadn’t even started yet. So, in the spirit of the scientific method round 46 was a trial involving no apprepitant as this anti-nausea tablet seemed to be ironically causing nausea.
… This trial of sample size n=1 was a complete failure. Round 46 was easily the WORST round of chemotherapy I have had to date. Dry retching became vomiting, and vomiting became regular. I spent a lot of time with my head in the toilet, learning that tim-tams aren’t the best to regurgitate, and lemon powerade retains its flavour for quite sometime after being ingested. The irony of such a terrible round was that I recovered fairly well afterwards, perhaps even better than previously. The lesson for this failed experiment is that my apprepitant will be maintaining a permanent fixture in my anti-emetic regime.
Currently, I’m doing a small set of night shifts for work, and this weekend marks the crossover from my surgical run to an ED run next quarter. ED will only be 0.5 full-time, but since there are plenty of vacancies still, I will have the chance to fill in the gaps with a few locum shifts.
In other unrelated news, Hannah and I are only 3 and 1/2 weeks away from a 3 week holiday in Italy. We are really looking forward to that. Also I have a CT scan in a few weeks which will be a major stop/go intersection for the future ahead. Is the cancer responding, or is it progressing…..
Only time will tell…
Until next time.