Stage 4 Bowel Cancer! No warning. None. Blood tests fine. Bowel movements normal. General health is optimal. Am I feeling positive? Absolutely! Cancer treatment is improving all the time and despite doctors still being very negative when delivering prognosis, there are plenty of encouraging survivor stories out there. When first diagnosed, I found that reading personal accounts from others on a similar journey offered hope and encouragement that doctors largely seemed unwilling or incapable of giving. My own journey through treatment has been such a positive experience. It is my wish that by sharing my own journey through Stage IV bowel cancer and chemotherapy, you will feel more hopeful about your own future. At the very least, you may find a sense of peace.
The Initial Diagnosis
In 2014, my marriage of 30 years came to an end. After much emotional healing, by January of 2016, I was feeling on top of the world! Physically, emotionally, spiritually …… my life could not have been better. In March of 2016, with a renewed belief in my self, I quit my job and headed off on a wonderous month-long journey through exotic India. Upon returning in April, I underwent a laparoscopic hysterectomy due to very mild post menopausal bleeding (although all the test were negative, this is often a red flag to cervical cancer).
A week later, the pathology results came in. Adenocarcinoma of the cervix. Adenocarcinoma is a less common type of cervical cancer which develops from the glandular cells. It’s harder to diagnose because it originates higher in the cervix making it difficult to reach with the brush or spatula used in taking a Pap test. I was relieved to have opted for the hysterectomy because the threat of Cervical cancer was now gone! But the pathology didn’t stop there. They also found metastatic adenocarcinoma of both ovaries. These cancerous cells weren’t associated with the cervix. Those found on the ovaries belonged to a primary somewhere in my body, that had now metastasised!
A subsequent CT scan indicated trouble in the bowel. On May 9th 2016, the day after Mother’s Day to be precise, I found myself in hospital again, now having a large part of my colon removed. There were two growths – one in the Transverse section of the colon (this was the primary), and the second on the lower right portion of the colon. Due to an obstruction, the surgeon did not venture into my stomach, but he was adamant that the cancer would likely have metastasised there as well. When chemo finished, he planned to investigate further.
Three weeks on from my 2 surgeries, on the 1st June 2016, I commenced 6 months of chemotherapy with Folfox. A PET scan prior to commencement indicated no tumorous masses. So for now, Chemo would take care of those pesky cancer cells making their way through my system microscopically. Out of sight but not out of mind!
Hearing the Prognosis
When first diagnosed with Stage IV bowel cancer, the surgeon told me I had 2-3 years to live. Possibility 4 with chemotherapy. I wasn’t prepared to settle for that. Not when I was feeling so well! But I get it…. Doctors are all about science and numbers, not individuals, so there was every chance he was wrong about me. Certainly, I was determined not to become a statistic! Finally my competitive streak was an asset! It is my recommendation that if you are initially given a “fatal” diagnosis, find an oncologist and surgeon who offers more positivity regarding your future. In fact, surround yourself with only positive people in your support team!! Cancer treatment is improving all the time. There’s a lot more reason to stay positive and hopeful than there use to be. In his defense, my surgeon is one of the best in the field, and over the course of my treatment as he could see me doing so well, he became just as positive as I was. I smell a God complex – but who cares.
Given how healthy I was feeling, I’ll admit being initially stumped by the diagnosis and prognosis . To be honest, I was a little angry at first, and drafted a lengthy letter to God asking her to ‘please explain”. That moment of self-pity lasted all of 20 minutes, then I was back to calm resolve. Why me? Well, frankly, why not me? You can read a full account of my spiritual perspective on death and dying in my blog Searching for Meaning After Cancer Diagnosis
Family – The hardest part was telling my kids. Matthew the youngest at 17, Loren 19, and Stacey 24. Their father gathered them together while I was in the hospital. Perhaps a little cowardly of me to assign him the task. They were still processing the breakdown of our family unit, and now this. When I arrived back home, we gathered together to share our feelings and fears. The oldest daughter, while devastated, has the maturity to help her siblings process the news. The younger two cannot speak at all – they refuse to speak in fact – and would like to pretend it’s all just not happening.
It’s a time when teenagers are enjoying the best years of their lives, finally feeling independent and establishing themselves as young adults. To be honest, having studied grief counseling, I am aware that on some level they are inconvenienced by the cancer. Just when they were wanting to escape from family, they may now be pulled back in. My daughter Loren, still feeling the burden of the marriage breakdown, completely abandoned me from the very start of my cancer journey. One year on, and she still has little to do with me. I had such a desire to pull my kids around me and spend as much time with them as possible, but Loren took this to mean that I was making her responsible for me and she was angry about that. At first I was heart-broken beyond measure, however I am at peace now. Since I’m doing so well, I’m getting on with my own busy life and allowing them all to grow into the fine young adults that they are meant to be.
Chemotherapy – June 1st 2016
Prior to starting chemo, a portacath was inserted under the skin of my chest. While this required surgery, it was minor surgery and the port being under my skin meant it was unseen, except for a flat, rounded bump about the size of a button. The port is an access point which feeds a catheter tube that is inserted into a superior vein so the chemicals could be fed directly into my bloodstream. Part of the Folfox treatment also involves the drug being administered over 48hrs through a bottle which stays attached via a tube to the portacath. You go home with it attached to you and return on day three to have it removed. My mother-in-law made me some really great shoulder bags in colors to suit my clothes so that I could hide the bottle in a very stylish manner. Lucky me.
Fortunately I can boast that I inherited a very strong body through my family line. So despite having advanced cancer, I journeyed through 6 months of chemo with very few side effects. Mild neuropathy in tips of fingers when I didn’t protect myself from the cold, and a metallic taste in my mouth that stretched out for several days towards the end of treatment (due to the accumulative effect). This made it difficult to eat or drink so I lost a few kilo in the last few months. But I had no mouth sores, no nausea, no vomiting, and very little hair thinning. People who didn’t know I had cancer couldn’t believe I was undergoing chemo as I looked and felt very healthy.
Admittedly, of the 3 medications used in Folfox, there was one that caused me a reaction in the beginning, so the oncologist stopped administering it after the third session. The effect was like a mild panic attack which wore off within an hour or so, but he decided it wasnt necessarily giving me any benefit and so he cut it from my regimen.
On two occasions, my platelets were so low that he wanted to send me home without chemo. This would have meant rescheduling all future social engagements I had planned, and drawing out the end date for chemo. I wasn’t going to have a bar of it! I simply refused to go home, and in the end, the oncologist gave in. As it was, chemo ended the week before my sons year 12 graduation. What a perfect way to celebrate the end of this journey!
Before, During and After Chemotherapy
I was already fit and healthy before I started chemo so this held me in good stead. If you’ve got time, get started asap. During treatment, I exercised up to 2hrs per day (only walking and yoga) which helped keep my energy levels up so that tiredness wasn’t a problem. Exercise also helped with my emotional well-being – if I missed a day I felt quite down by the end of the day. When chemo finished, I didn’t let up on my diet and exercise (although I only exercise for one hour a day now and dont worry if I miss one). I also headed off to India for a month of detoxing in January 2017. For information on my Chemo diet and exercise you can visit my blog A realistic Approach to Your Chemo Diet
Support – Recent studies in fact are now suggesting that a persons positive road to recovery from any form or ill-health is largely a product of having a strong network of support around them. I’m fortunate enough to be surrounded by family, friends, neighbours, community who make their offers of support and prayers available without me asking. Having always been so independent and somewhat private in nature, the experience of allowing people ‘in’ is humbling to be sure. If you don’t have people around you to offer same, I would urge you to make use of your local cancer networks or start a local group of your own.
Every 6 months I will undergo a Laparoscopic investigation with my Bowel surgeon (checking stomach and lower intestinal area), and see the Oncologist for a CT scan every 6 months. Basically, every 3 months as they will alternate their procedures. As I may need chemotherapy down the track, the portacath will stay inserted under my skin. Every 6 weeks I return to the chemo centre for a flush of the port – this prevents risk of infection at the port site. If cancer does return, I’ll be administered ‘targeted’ chemo. This is where warm chemo is inserted directly into the affected cavity during surgery. It’s left there for an hour, then drained out. Following this, I would be placed on life-time chemo maintenance, whereby I have a low dose chemo session every 3 weeks and tablets every day (no take-home chemo bottle).
Schedule of Post Chemo Tests & Results
December 19th 2016 – 6th month post diagnosis Llaparoscopic investigation with Bowel Surgeon
January 4th 2017 – All blood counts back into the normal range.
January 15th 2017 – I’m off to a Ayurvedic Panchakarma Detox clinic in India for one month. I’ll be sure to Blog!
March 3rd 2017 – Returned from Indian detox. Blood tests still good (but not amazing considering the detox I just
went through!). Both oncologist and bowel surgeon are amazed at how well I’m doing. They are
both taking credit for the absence of cancer in my system.
May 5th 2017 – Experiencing stabbing pain on left side under ribs (like I’ve been lanced with a spear). 6mnth CT
scan shows no sign of cancer – pain appears to be from scar tissue. This is very common.
July 10th 2017 – 12th month post diagnosis Laparoscopic investigation with the Bowel Surgeon,
October, 18th – 12th month post diagnosis CT scan with Oncologist.
Understanding your Pathology Report
Oncologist are aware that cancer patients want to play a more active role in the course of treatment. Knowing what your pathology report actually says will help you ask all the right questions before seeing your oncologist. I found this thorough web site which explains all the terminology you will find on your bowel cancer pathology report in simple understandable language. If you’d like to look it up, you can check it out here…Oncolink
I do hope you’ll walk the path with me and that you’ll find hope and inspiration in my blogs. Please also feel free to share your own stories of hope.
Much love to you all ♥
Your humble servant,
footnote: Dr Peterson is one of the best in the field and I credit my perfect colorectomy to his expertise.