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….
A planning CT was undertaken on the Monday just been. This makes 21 CT scans over the past 4 1/2 years. The purpose of this scan is to help the radiation oncologists to plan for the radiotherapy. It involves aligning me up with lasers, putting tiny ball bearings on my skin so they show up in the scan, and then tattooing a mark on my skin in three places so that they can re-align me the next time I come in for treatment. The idea being that they have external landmarks that give an internal location as to where they target the radiation.
The plan for treatment has also changed a little bit, now they are going to do the radiation over 5 weeks. It is now 45 Gray over 25 fractions; slightly more total radiation, but less per fraction. The reason for this is because there are some other suspicious looking nodes that are near major organs that they want to include in the radiation field, but they want to reduce the damage to those organs as much as possible (namely the duodenum and the stomach).
The official start date is next Wednesday at 2pm. The timing can’t come soon enough, because over the past 5 days I have been progressively getting more significant malignant pain. Initially on the left side of my abdomen and radiating to the back, and now predominantly on the right side, also radiating to the back. The pain has been bad enough that it has kept me off work for a number of days this week while I am trying to get my pain management properly established. I have woken up over the last two mornings with excruciating pain, that is only relieved with oxycodone (an opiate based analgesic). I am now experimenting with combinations of long and short acting oxycodone alongside ibuprofen and paracetamol. Hopefully I’ll be back at work next week with relatively good pain control. The radiotherapy should also hopefully help with this by neutralising the source of it.
This is the first time that the cancer has directly affected my quality of life since my diagnosis. The major effects I have had so far have been indirect, namely the side effects associated with chemotherapy. The reality of my diagnosis has never escaped me, but now somehow feels a little more real. I’m hoping the radiotherapy will be better tolerated than chemotherapy (the consensus from other people who have experienced both say this), and that I will work all the way through the treatment.
This is a critical turning point in my disease that requires critical treatment. Hannah and I are really hoping that the radiotherapy will really give the cancer a good kick and keep it at bay for much longer… at least until January, and hopefully longer than that.
Until next time…
Last weekend I was admitted to hospital with severe abdominal pain. The pain had progressively worsened since my last round of chemotherapy (round 66) to the point where on Friday last week I had to leave work early. By the Saturday morning, the pain was bad enough that I thought I should get it checked out. At the time, I was worried about the possibility of bowel obstruction or even a small perforation of the bowel given just how bad it was. Once admitted, I soaked up a reasonable quantity of opiates in order to gain some control of the pain, and it was decided that a CT scan was in order given just how much pain their was.
By Sunday morning, the pain had improved greatly and the CT showed that there was no obstruction, just an incidental finding that there was a significant amount of growth in one of my retroperitoneal lymph nodes since the previous scan 3 weeks earlier. There was also some associated stranding around that area which means there is some kind of inflammatory process going on. It was unclear at the weekend what the significance of what that was, but it was thought I had a small bleed into one of the cancerous lymph nodes and that may have been responsible for the pain. Given that it had improved fairly significantly, I was discharged.
Two days later, after some extensive discussion between the liver surgeon looking after me and some senior radiologists, the interpretation of that scan changed, and with that change came significant implications.
That cancer has dedifferentiated and there are multiple nodes with extensive growth in the three weeks between scans…..
It has stopped responding to chemotherapy….
The pain that I have is malignant pain from the cancer, and the day I was expecting to come for a number of years now has just arrived……
This is a major game changer for my treatment, and what has become apparent over the past couple of days is that a large number of senior clinicians in surgery, radiology, medical oncology and radiation oncology have spent a considerable amount of time in creating a plan to address this new development. I’ve survived 66 rounds of chemotherapy, it is uncharted territory, and we are in the realms of best guess treatment. I have no doubt for a second that I am in the hands of some of the best clinicians in the country, and their response to this new development is aggressive.
Chemotherapy for now has been stopped. In the next two weeks I am starting on a 3 week course of radiotherapy. It is intense stereotactic ionising radiation focused on the area of the retroperitoneal lymph growth (40 gray over 15 fractions). The goal is to get that under control, and if that is successful, then start back on chemotherapy, this time FOLFOX. This is a combination of agents previously used, 5-fluoro-uracil, and oxaliplatin. And if that is successful, then we will see what can be done about the liver lesion from a surgical perspective. The potential of ablation (as we previously planned prior to this week) will be back on the table.
This latest development is somewhat bittersweet. We are revelling in the fact that Hannah and I will be parents for the first time in January, and that I have recently been offered a general surgical registrar position, yet at the same time having the bitter reality of my diagnosis rubbed into my face. It is a juxtaposition of highs and lows, one where the lows reveal just how high the great moments in life are. I find it surreal that I am already in love with a child I have not met, and the recent events in my life highlight just how precious bringing new life into this world is. This child may not know me, but I pray to God that he or she will have the opportunity to know just how special they are in his or her parents eyes.
The brutal reality of life reveals just how beautiful it can be as well; if it wasn’t for the lows, then I would never appreciate the highs as much as I do.
Despite the outcome of all these events, this child will be loved more than he or she will ever know…
Until next time….