How Serious It Is

By now you’ve probably read a few of my posts here, so let me be completely honest with you about my condition. The type of cancer I have is, and you’ve read this already, is neuroendricine cancer (tumors). It is stage IV, class 1. Which means it has metastasis from my primary tumor in my small intestines to other parts of my body. The class 1 means that they are low grade or slow growing tumors, my ki67 rate is 3% and that is the rate of cell proliferation, so a more aggressive type cancer would have a much higher number. So, that being said I’m fortunate to have a low number there, although now the hard part. Like I said it has spread from the primary location to many other parts of me and that was all confirmed this December when I went to have a Gallium68 scan at the Princess Margaret Hospital in Toronto, I will explain all these different procedures in an up-coming post. The scan revealed that the cancer is still in my small intestines, I already knew that because of where the primary sat was on a blood supply and the surgeon was unable to get clean margins without doing more damage to me. There is also tumors in lymph nodes in my abdomen and on the lining of my abdomen wall, there is multiple tumors in my liver, it’s in the lining of my lung and in my bones specifically on my third rib up on my right side and also in a vertebra in the middle of my back. So ya it’s made it’s way to a lot of places.

So ya it’s pretty serious, I tend to keep a calm and easy going demeanour when I’m out and socially and talking about how my life is now, but believe me this never leaves my mind. I guess I should mention that during surgery they also removed 3′ of intestines and 44 lymph nodes, 22 which were cancerous. Because of my missing intestines I now may suffer what is called mal-absortion, which is I don’t necessarily get all vitamins, minerals and such from my food and I’m still constantly trying to sort that out.

For the most part I’m pretty fortunate and able to live a normal life, many who have this type of cancer suffer from symptoms called carcinoid syndrome. Once again because of the various ways the body is attacked by this disease, many patients are affected in different ways. Symptoms range from the common type like skin flushing and diarrhea, to facial skin lesions, difficulty breathing and a rapid hearatbeat. Chronic fatigue is other one and the list keeps going as Doctors learn more about the disease. Carcinoid syndrome is caused by tumors secreting serotonin or other chemicals into the bloodstream, now the liver can neutralize a lot of the chemicals. If the tumors have spread to the liver or downstream from it that is when the symptoms become more prevalent .

Now explaining this medical stuff isn’t my strong suit, and hope I did a okay job, as that is quick condensed part of the problems that come from this cancer. I will explain more as we go along, this was more or less to tell you what my specific diagnosis is. Now as I finish up writing this post I’m just home from the hospital from a complication I deal with due to my bowel surgery and tumor load. So, just quickly here, before I knew I had this disease I know now that I did have carcinoid syndrome. I would get flushing of the skin from time to time and what chased my into the hospital for the first time, a very sore and bloated abdomen. I originally thought this was all caused just by getting older or maybe developed a food allergy, boy was I wrong. After surgery and the primary tumor was mostly removed any type of syndrome I had seemed to go away and once healed up, I felt better then I had in years and any gut pain I used to get was gone.

Bowel obstruction, I was told this could occur after the surgery, but as weeks turned into months and I returned to work and more of a normal life I wasn’t to worried. Now an obstruction for me is caused by the scarring tissue in my intestines finding each other and basically sticking together is the easiest way to explain it and when that happens look out! My first attack happen at work in August 2020, I had no idea what was happening, the night before I’d had a small gut ache and felt no to bad in the morning. About mid morning out of nowhere I broke into a sweat and a nauseous feeling flowed through me. I ended up getting sick in the work bathroom, what a great place to hang you head, over the work toilet….nice. Got sick one more time outside, before getting a ride home from some caring and thoughtful co-workers. I still figured I’d maybe eaten something bad and had a rest and slept for about an hour, only to wake and rush to the safety of my home toilet this time. I wretched until this vile liquid and smell was coming out of me, the room was spinning and I felt I was about to pass out. I called out to my youngest son to call an ambulance, and quote ” I think my dying”. I still feel awful for putting him through this. I had Tracy on the phone listening the whole time this is going on, I can only imagine the panic she must have felt. The rest is a blur, the paramedics came and remember being assisted to the ambulance for the short three block ride to BGH, vomiting along the way.

It’s weird to have an emergency room doctor look at you, look at the chart, look back at you and say ” I’ll be right back”. By now I had some pain killer in me and have calmed down a bit, the Dr then returned with the general surgeon. Who put his hand on my shoulder and reassured me, ” Don’t worry Mr. Medhurst, we know all about you. ” Those are words I would never have dreamed I’d ever hear come from a Doctor. He confirmed to me that I did indeed have a bowel obstruction and that I would be admitted for observation and recovery. For the most part the treatment for this is no food or drink for 2 to 3 days and rest in hopes the obstruction sorts itself out, which in both my cases it did. Then to slowly introduce liquids and easy to digest foods for about a week and then back to my regular diet, which I will discuss in an upcoming post.

Now the latest episode happened only a little over a week ago in April of 2021 and although awful, wasn’t as quite as severe. Started with stomach pain and moved to getting sick. Now, Tracy wanted me to go to hospital right away, but as stubborn as I am I insisted this time was different and it was just something I ate. So…..a few hours later she delivers at SGH emergency. This time I’m not getting as sick, but I’m sent for scans and yes, I have another obstruction in the same place. I won’t bore you with all the same details, everything is basically the same except this time an NG tube is inserted through my nose. As you can imagine it’s not very comfortable and gives you a sore throat, was taken out after a day. The obstruction cleared itself and I was released onto Tracy’s care and sent home for a couple weeks rest and recovery.

Now you may ask yourself why don’t they fix this so it won’t happen again, well the simple answer is there’s no fix. More surgery would only lead to more scarring tissue and the chances off more issues, so this is something I will have to live with. Not even changing to a softer food type diet can prevent this. Now the only time surgery would be done is if the scarring tissue meets and sticks together causing the obstruction and then twists. That would be a life threatening condition and something would have to be done. I pray it never comes to that!

OK, so that pretty much sums up my condition and why it is serious. It’s funny cause just a couple days ago I was messaged by a friend asking me what was going on and thought that I was doing well and healthy, because I’m fit and always running. That’s the deceiving aspect of this cancer most of us do look well on the outside, it’s inside were the battle is happening and can flare up at any time. We all have slightly different symptoms and diagnosis, which is why it’s hard to detect, hiding in wait until you least expect it. Then it attacks, and life isn’t and never will be the same….

7 thoughts on “How Serious It Is

  1. Jennifer Kelly-Evans April 17, 2021 — 7:47 pm

    Great job on your blog 🙌🏼 So sorry to hear everything you are going through.

    Liked by 1 person

    1. Thanks Jen, it”s good to hear from you. Right now I feel fine, that’s kind of how I roll these days. Keep in touch!

      Like

  2. Thank you for helping share awareness on NET cancer.

    Liked by 1 person

    1. Thanks, hoping to just help others maybe have a chance at early diagnosis.

      Like

  3. I always tell everyone “I look great in the outside-it’s the insides that suck”
    Great job on writing and thanks for sharing your story.
    Joanne

    Like

    1. Yes, during our support group zoom meetings unless you know why your there everyone looks, for the most part, healthy. Thanks for reading and commenting. Feel free to share! Hope all is well. Cheers.

      Like

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