So…crap…cancer is back. Not sure yet what the plan is, but it's back. Hoping that surgery is an option. Should know more in the next few days.Read More
Balancing personal and professional ambition with a NED (no evidence of disease) status is proving to be tougher than I expected, and it has affected a larger part of my life than I expected.Read More
Several months ago, mid treatment, I came up with a list of non cancer projects to distract me. One of them was to record a song for my kids. Well, months later, I can finally tick that particular project off the list.Read More
Got my first surveillance scan results and they were good. Unfortunately many people around the world - some friends - have not been getting such good results. I also know I am just at the beginning of the long and dangerous road of recurrence. Cancer just sucks.Read More
I’ve been very lucky on financial front with respect to my cancer journey, but the monetary cost of cancer is still pretty high. It’s a question I often get so I thought I’d share some of the details here.Read More
After 10 months of cancer treatment a good PET scan has meant an end, for now. Now my doctors are telling me to just “do what I normally do” i.e. get back to normal life…and come back to see them for another scan in 6 months. Which such a big cloud hanging over you, how do you just “get back to normal”.Read More
There are so many people to thank. Too many in fact. However just before I complete my last major surgery in my 1st line treatment journey I thought it was a good time to pause and thank a few key people.Read More
I've completed 1st line treatment and my next PET scan is booked for April 10th. I'd love to say I'm completely relaxed about it ready for any outcome but I'd be lying. I have major scanxiety.Read More
Completing my legacy video library was one of my 'non-cancer' projects so I felt the need to provide an update on my progress. However I've since been asked a couple of times for advice on how to set up these collections by other potentially terminal patients with kids, so I figured I'd turn this into more of a guide for others.Read More
Had post-surgery follow up meetings with surgeon and oncologist yesterday. I don't think we were prepared for them being so depressing. The pathology results are back and they weren't great (after surgery all the resected tissue - colon, liver and lymph nodes - was sent for testing).
The report is 7 pages long and there is a separate genetic screening report. I might do a separate post with the technical detail for those suffering from a similar diagnosis that I know are reading my blog...because I'm going need some advice on chemo and a few other points.
But here are the highlights:
- The good news
- The primary tumor (colon) showed a good response to the pre-surgery treatments.
- The surgery appears to have removed all tumors successfully.
- The bad news
- The primary tumor was treated with both radiation and chemo while the secondary tumors in the liver couldn't be treated with radiation, so we were relying on chemotherapy there. The pathology report showed that the liver tumors were barely impacted by the chemotherapy, which suggests that all of the pre-surgery treatment impact came from the radiation, not from chemotherapy. This is concerning because it suggests that my cancer is not responsive to the chemo drugs I was on (Oxaliplatin and Xeloda), despite being on an extremely high dosage. The reason this is so concerning is that we will be relying on chemotherapy to kill off any residual metastatic cancer cells. The next point makes this doubly concerning.
- They removed 37 lymph nodes in the surgery (that is a lot of nodes to remove - lets try not to think about the long term implications of that). Of these 9 were malignant. To put this in context, when they grade the severity of a cancer one measure they use is the number of impacted lymph nodes - 1 node, 2 nodes etc - but that scale stops at 7 i.e. anything more than 7 impacted nodes is considered in the worst category of spread. This, along with the liver metastasis, suggests I probably have a lot of cancer cells left in my body despite the actual tumors being removed. The original plan was to attack this with a second round of "clean up" chemo, but now everyone is questioning the efficacy of this and the concern is that it's just a matter of time before those 'wild' cancer cells find a new home and spark the growth of a new tumor, which may well turn out to be inoperable or untreatable, depending on where it is.
- The plan from here...
- My oncologist is considering adding another chemo drug to my cocktail (Avastin but Panitumumab or Cetuximab are also being discussed, however oncologist is concerned about side effects of the latter two). Previously he'd thought all I would need was another 3 month 'clean up' cycle on my existing cocktail, but now there is talk of 6 months of additional chemo.
- Because the veins in my arms have retreated due to the initial chemo cycles (and they weren't great to begin with), I need to have a port inserted.
- I also need a procedure to remove the caval filter which was inserted after my pulmonary embolisms to mitigate clotting risk during my major surgery.
- All this new shit starts in January, so I have around 10 days of "normal life" before then. I'm trying to think of something awesome to do in the next 10 days.
Given the relatively bad news from the pathology report I'm also reconsidering several alternative / complimentary treatment options that I'd previously parked pending the conclusion of first line treatment. I'm planning on getting a Curematch (USA) report done on my chemo options to augment my oncologist's own recommendations and I'm looking into the Care Oncology (London) complimentary drug regime. I'm also revisiting diet and supplements. Basically I'm doing whatever I can to stop this cancer spreading because suddenly chemo sounds like it's not going to be much help.
I'll probably have other PET CT scan in February / March to see whether the cancer is still present or, worse, spread post-surgery. Dreading that scan.
The shock of yesterday has also reminded me that I still have work to do on my track 2 planning, so that is part of what I'll be doing in the New Year, because suddenly the odds of track 2 being our reality seem a little firmer. I had been starting to think about a plan to return to normal life - work etc - but now I just don't know how think about this again given all the additional treatment and the associated uncertainty.
Cancer is a bastard.
Ok, so the major surgery is behind me. One liver resection. One colon resection. One pelvic dissection. I have a scar that runs all the way from my breast bone to my pubic bone. It's definitely a relief to have it done and all three of my surgeons seemed pretty happy with the way it went. I'll know more once all the pathology comes back. I spent 11 days in hospital. It was on track to be a shorter stay but then I took a bit of a bad turn which then took a while to get over. I got home last week but sadly I'm back in hospital now due to some complications. Oh it has been such a fun week, I have to share, as usual probably too much...
Just a couple of days after getting home I started to notice some pain when I finished peeing. It got bad enough that I called the hospital after a couple of days and based on my symptoms (and a prior positive urine culture) it was determined that I probably had a urinary tract infection - pretty common after a hospital stay with a catheter. So I went onto some antibiotics and was told it should start to clear up within 48 hours. After another 3 days the pain was only getting worse and I was getting less and less pee out every time I visited the toilet. The hospital asked me to come back in for one night so they could run some tests - blood, urine etc. They were concerned that I might have an infection that could get out of control or that it might be otherwise affecting my recovery from the surgery. All the blood work looked good so I was discharged the next day but put on an additional antibiotic and the dosage of my other one increased. The plan was to wait for the result of a new urine culture to confirm exactly what the infection was. I went home on Saturday morning and we expected the result on the Monday.
Over the weekend the peeing pain just got worse and worse despite all the powerful antibiotics. To be clear, it was so damn painful to pee that I would get nervous when I felt the need coming on. My routine was to sit down for the 1st part of the pee which was generally less painful. Then for the second half, which was always much more painful I'd stand up and put one foot on the toilet bowl - because for some reason this provided some relief and because standing made it easy to breathe through the pain and brace myself. I joked to some friends that if anyone walked in on me in the bathroom I would have looked hilarious - one leg up and heavy breathing.
On Monday the culture results came back and they were negative i.e. I had no infection. Cultures aren't 100% reliable but the result showed my white cells were also totally inconsistent with infection. I was also getting desperate. The pain was persisting between pees now such that it was painful to even walk and it had got so bad that I actually wasn't able to pass urine anymore...at all. While I'd been in hospital my liver surgeon had introduced me to the head of urology "just in case" and he'd suggested that if the infection treatment didn't resolve my issue I should give him a call. So I set up an appointment for the next day and took a load of painkillers to get me through that night.
When I went in for the appointment on Tuesday I was very, very sore. The urology specialist did an ultrasound bladder scan and found a large volume of liquid. The conclusion was that for whatever reason - perhaps nerve damage from the surgery - I was unable to pass enough urine and the retention was causing the pain. They decided I urgently needed a catheter. I've never had a catheter inserted while I'm awake and I hope I never have to do it again. Having anesthetic jelly injected into your penis, and then a tube pushed down your penis into your bladder is not a joyous experience.
And then something strange happened. They were expecting a rush of urine to flow into the catheter but instead hardly anything came out. The new theory was that something else outside my bladder was causing the problem, but for that I'd need more testing. So...cue another hospital admission, more blood tests and yet another CT scan.
The CT scan revealed that I had a large fluid "collection" sitting right next to my bladder and it had grown to the point that so much pressure was being applied to my bladder that I could no longer use it. The ultrasound bladder scan was fooled and was actually picking up the liquid content of the "collection" and not my bladder. The only solution was to drain this fluid. A couple of hours later I'm prepped for surgery and rolled down to theater. I ask why we passed through the anesthetic bay straight into the theatre and the nurse tells me I'll only have light sedation for the procedure - a procedure where they stick a large wire into your abdomen and then a tube to suck out the fluid. Given my fear off all things medical and needles this causes me a mild panic attack but at this point the pain is so bad I'm willing to accept anything that will make it go away. So I lie back and think of Christmas. Luckily it turns out sedation with Fentanyl is pretty damn good and I barely remember the whole thing happening.
The impact was immediate. They removed about 200ml of fluid, which turned out to be blood (technically making this "collection" a hematoma), and the pressure reduction allowed me to pee normally and with much less pain almost right away. I've been sitting in hospital for the 48 hours with a drain to remove more of this fluid but that was removed this morning and I'm hoping that I'll be discharged later today. There is no guarantee that the hematoma won't just grow again and require drainage again, but my doctors think this is unlikely. Fingers crossed, but at least now we know what the problem is.
Next week I meet the oncologist to get my plan for the next rounds of chemo. I'm hoping I get a bit more of a break before it starts because the thought of starting chemo again right now fills me with dread. But such is the cancer game that we must play :)