There’s a small gallery not far from Alexa’s school that I often walk past. A few weeks ago it had this Banksy print in the window. The caption to the right of the girl reads “There is Always Hope”. Every day I had to blink back tears to order my coffee across the road; and it’s the same now as I write this. We met with Scott’s team at Peter Mac on Tuesday and it turns out there is more than hope. Much more. All the data points to Scott making a full recovery. It will take time, yes, and there may be long term impacts to his lifestyle, but he will be cancer free. The doctors assure us there is no reason he won’t go on to outlive me!
We had three appointments booked for Tuesday afternoon. One by one we grilled the Surgeon, Medical Oncologist and Radiation Oncologist. They had made three 15 minute appointments for us, but we kept the doctors for 3 hours. I don’t imagine we’re much like their regular customers. Apart from the fact that Scott is 15 years younger than most people diagnosed with Bowel Cancer, we surprised them with our intense and informed questioning! Eventually we had to admit to a preliminary briefing by an experienced Colorectal Surgeon, the amazing Karen, who popped over on Sunday night to answer our questions and prepare us for Tuesday.
So here’s what we learned. Scott has what many people would know as Stage 2 Rectal Cancer, though the staging system most commonly used these days calls it T3 N0. That means the tumour in his rectum has grown some way through the wall of the bowel into the fatty tissue surrounding (T3), but has not moved into the lymph nodes in that area (N0). It has not spread to the lymphatic system or any other organs. This was our greatest fear and it was such a relief to have this door mostly closed. Although the doctors can’t be 100% certain from the scans alone, they assure us it is very unlikely, and they don’t expect to find cancer in the lymph nodes when they operate. The tumour itself is no shrinking violet. It’s at least 4cm long and we saw from the scans how it has stretched the rectum wall to accommodate it’s unnatural growth.
As a previous patient at Peter Mac, Scott had been having annual PET scans up until mid 2013. We asked why this tumour didn’t show up at his last check-up, so the radiologist brought up the scan. It wasn’t there. So in less than 20 months a tumour the size of a plum has grown from nothing, to almost block his bowel. Any longer and this would have been an emergency. Please friends, listen to your body when it sends you a message. Scott thought he had irritable bowel, or maybe some after effects of a particularly bad gastro late last year. He only left it a couple of months before deciding it was worth a GP visit. Some people leave it years. We are the lucky ones.
All three doctors see no connection between his last cancer, Hodgkins Lymphoma and this one. The treatment he had back then (chemotherapy and radiotherapy) is known to increase the risk of other blood cancers, but colorectal cancers are not in that category. Given his age, diet and lifestyle, there’s just no reason for him to have this cancer. He’ll undergo a DNA test soon to find out if he has a particular gene that predisposes him to colorectal cancers. If he does we’ll be referred to family counselling to work out what that means for the kids. If not a genetic flaw, then this is just a story about fate, luck or a quirk of the universe that we are yet to understand. We both believe things happen for a reason, and we don’t intend to travel this path blindly.
I’ve been in tears a lot the last few days. I know it’s irrational, but I am overwhelmed by the powerful feeling that I should have been able to do something to prevent this. We changed everything about our lifestyle after Scott’s first cancer. We work less. We spend more time together as a family. We have no toxins in our home. We put no chemicals on our bodies. We eat real, fresh, locally grown, organic food. This should not have happened. Part of me wants to high tail it to McDonalds and stuff down a burger and a coke because it makes no bloody difference. Except it does. We made these changes because they meant something to us; because we wanted to respect our bodies, our souls and our planet. We don’t live chemical and pesticide free to avoid cancer. We just thought it might be a nice side effect. I’m angry though. It’s not fair.
So what happens next? As expected, the doctors recommended chemo and radiotherapy prior to surgery. We approached the discussions with the attitude that we’d seek 2nd or 3rd opinions if anything about the treatment felt wrong to us. We debated every detail, but ultimately Scott is comfortable with their recommendation at the moment and has decided to go ahead. He is having another CT Scan for planning purposes today so they can plot the exact path of radiation through his body for minimal impact on important organs and blood vessels in the pelvis. The planning will take 2 weeks. Around mid April he will start a 6 week period of combined chemotherapy and radiation.
The chemotherapy component will be given 24/7 by a PICC line (peripherally inserted central catheter) in his arm. He’ll be completely mobile during that time, as the chemotherapy will be in a small bag, strapped to his body. It can’t be immersed in water, but apart from that, he’ll be free to do whatever he likes. Initially there may be little or no impact on how he feels, but fatigue and nausea will build over time. It’s supposed to be a mild chemotherapy course, and with a bit of luck he will be able to get on with normal life for a good part of it. For this particular type of cancer, the chemo drugs are given to make the cancer cells more receptive to radiation. The radiation will be given for 10 minutes a day, 5 days a week over the 6 week period. He’ll go into Peter Mac each morning and they will line him up precisely inside the ‘Radiation Machine’ (I think it’s called a Linear Accelerator!) using little blue dots which he’ll have tattooed onto his body next week. This means they can radiate him in exactly the same spot every day for maximal effectiveness and minimal collateral damage.
After 6 weeks there will be a 10 week break while the chemo and radiation continue to work on the cancer, peaking a few weeks after the treatment ends. This is when Scott is likely to feel worst (sometime in June). Around 4 weeks later Scott will have another PET scan to see how the cancer has responded. The doctors have told us many patients show no signs of cancer at this point. If this happens it will be difficult to proceed to the surgery which they assure us is still necessary. Although scans may not detect any cancerous cells, there is still as much as a 30% chance that some rogue cells may remain in the lymph nodes. The only way they can be absolutely certain he is cancer free is to remove the entire rectum, which is what they recommend. Yes, the entire rectum.
This is the hardest part. Are you ready to discuss poo?? Sometime in August, Scott will have an operation to remove his rectum. The operation itself will be minor, done by laparoscopy (keyhole surgery). With the rectum removed, the colon will be rejoined to the top of the anus and a temporary stoma (bag) fed out through the side of his stomach. The bag is necessary so that the wound inside has time to heal properly. He will spend a week in hospital but should be up and about within a few days. Recovery is fast, with the trickiest part getting used to the stoma. Once he has adjusted, there is no reason Scott can’t live normally for a while. After a couple of months the stoma will be removed and his bowel rejoined. From the advice we’ve been given so far, it will take several months for Scott to learn his body’s new signals for needing to go to the toilet. They may be subtle, and urgent. He will almost certainly need to go a lot more frequently and he’ll have to manage this and incorporate some changes into his lifestyle. Apparently a roll of toilet paper and a small shovel will be a requisite part of the cycling kit from now on 😉
Oh man, the poo jokes.
Reality is settling in now. For the last 4 weeks we lived in a state of limbo; holding onto hope and dread simultaneously. There is relief, because it could have been worse. But it could have been better too and that hope is gone now. Now it’s starkly real and the reality feels difficult and overwhelming and painful. I feel exhausted. The emotional roller coaster has taken its toll and I just want to crawl under a doona and cry all day. I used to handle difficult situations by being in control. That’s what I did last time. Lists, research, facts and solutions were my denial. Denial can be helpful in the short term, but I’m not up for it this time. There are long term repercussions of holding painful emotions within. It’s not worth it. Besides, apparently repressed emotions cause cancer and who’d want that??
It may be a year or more before Scott is back to his normal self after the stoma is removed. We’re looking at life being pretty different for the rest of 2015 and into 2016. I hope I don’t have to cry the whole time. My days right now are made up of stoic moments of getting on with it, wine-induced moments of forgetting about it and overwhelming moments of feeling it deeply. Being emotionally authentic is more difficult than I could ever have imagined. I can’t sustain it for more than a few hours at a time. I want to be present in each moment and experience both the joy and the sadness in those moments. Being present today means being sad, but I hope it won’t be like that every day. It’s going to be a long road. But that’s the point I think. We want to have a long road ahead of us, because any kind of road is better than no road.