How I Managed Mesothelioma HIPEC Surgery Side Effects

Stories from Survivors

When I was 21 years old, I was diagnosed with peritoneal mesothelioma. As a cancer survivor, I know firsthand what it’s like to navigate all the different treatment options and side effects that go along with them.

I remember when I was given the option of the HIPEC procedure as my treatment. I was relieved and at the same time excited that there was a solution to get rid of the mesothelioma. Being that I was pumped about the surgery and not having cancer anymore, when the doctor went over the various symptoms and side effects it was all a blur.

My doctor told me the impact the surgery can have on your kidneys and the possibility I would not be able to have more children. At that time it didn’t phase me. It’s kind of like you’re weighing the pros and cons. On one hand if you don’t have the surgery you could still have cancer, and on the other hand if you have the surgery to get rid of the cancer you could possibly have all these different side effects.

I advise other cancer patients to not do like I did. Don’t gloss over the side effects conversation. Make sure you’re attentive and ask questions. Yes, every patient is different, so all patients won’t experience the same symptoms and side effects. This is one reason why it’s vital to ask questions, no matter how insignificant you may think they are.

HIPEC: First Comes Surgery, Then Recovery

It took about 10 hours for my HIPEC surgery to be complete and then I was taken to a step-down unit from ICU. Once I got into a regular room, oh boy! I was in horrible pain. I had pain in my stomach, back, buttocks, you name it.

When you are in surgery for a long time it takes your organs awhile to wake up afterward. Especially your bowels, bladder and kidneys. Once your bowels start to awaken, here comes the gas pain, and it feels like labor pains, if you can relate.

It took about three days for my kidneys to wake up. My doctor had already put in orders for temporary dialysis to jump-start them. But miraculously when he checked my creatinine levels they were within normal levels.

If you have had or may be having the HIPEC procedure, some of the side effects your doctor may mention are bleeding, urinary tract infections, bowel obstruction, delayed wound healing, disruption of normal bowel motility, etc. As I mentioned earlier, this can vary depending on the individual patient.

Tips for Coping After HIPEC Surgery

I didn’t have the side effects mentioned above, but I did have some that are worth talking about. The following are different side effects that I noted during my recovery from surgery and how I coped.

Fatigue

It took some months for me to really get my strength back. I didn’t rush it, just did what I could and didn’t push myself to the limit. It also helps when you have someone assisting you with your daily tasks such as bathing and cooking. I would get out of breath just taking a shower.

Gas Pain & Constipation

The gas pains were horrible, and they would come and go and make their mark. One thing the nurses had me do was walk. This helped a lot by moving the gas, but it still was painful. I also would place a warm compress on my stomach and that helped, too.

Constipation is something I had before the surgery, but it was magnified afterward. Taking things like fiber supplements and Colace pills were a big help for me, but always check with your doctor first. Also make sure you’re eating the right things.

Incision Pain & Burning

I could pinpoint this pain because it was right where my incision was. Just for reference, my incision was from below my breastbone all the way down to my bikini line. This was a pain that I had never had before. It felt like my stomach was pulling itself apart, especially when I moved, sat up or even walked.

The way I managed it was by taking my pain medication at the prescribed scheduled times. I also carried a small pillow around with me. I would place the pillow right on my stomach and just hold it there. This was like a comfort and security thing for me as well. I did that for months.

Appetite Changes

This can be very common with surgery. I really didn’t have the appetite to eat what I would normally eat, but with this it takes time. It’s good to start off with a bland diet such as clear liquids and soups. Nothing too spicy or heavily seasoned.

Elevated Creatinine Levels

The levels of creatinine in your bloodstream reveal your kidney function. It is one of the substances that your kidneys gets rid of. If your levels are too high that can mean your kidneys are not working properly. My levels were slighted elevated and I had to be monitored, which I still am today.

I drink lots of water, cranberry juices and I don’t drink alcohol. Over the past 14 years or so my creatinine levels have stabilized at a slightly higher than normal level. My doctors show no concern, but it is something they are keeping their eyes on.

Anxiety

Last but not least, anxiety is something a lot of people don’t talk about. Our mental health is just as important as our physical health. When you go through a cancer battle, you’re experiencing trauma! It’s no walk in the park and it impacts not only your physical health but your mental health as well.

I am currently figuring out ways to combat this anxiety. Some things that help me are praying, therapy, taking deep breaths and medication. Even though you may be a cancer survivor, in remission, or the family member of someone with cancer, it’s always in the back of your mind. But reminding yourself that you are OK and you’re going to be OK will help you get through the days when the anxiety is high.

All patients are different, but I do hope these tips are helpful to you as you go through your journey with mesothelioma.

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