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….