Dealing with Mesothelioma and The Reality of this Disease

• Joseph Belluck
• Faces of Mesothelioma

The sad thing about having any illness, be it cancer or arthritis, is that no one tells you how it will really affect you. Having mesothelioma is no different. There are thousands of websites out there telling you how you will be diagnosed, the outcome of the cancer and the treatments available, but no one tells you the ins and outs of what to really expect.

I have tried over the years to convey how I am feeling through my blog – “Mesothelioma – Jan’s Journey.” I didn’t write my blog when I was originally diagnosed or when I was on chemotherapy for the first two cycles. In a way I am pleased I didn’t because I went through a living hell, but that was me, not everyone is the same. Unfortunately, a lot of sites don’t truly represent that you may go through this or that.

I know there are several discussion groups on line these days, boy do I wish they had been there in my early days. The internet has helped many get answers, but still the sites we hope will give us the information we desperately seek, sometimes don’t.

Mesothelioma is a strange cancer, it is the second most painful to endure, the first being bone cancer. Over the years I have surfed the net to see if anyone was having the same symptoms as I was going through, but many times I was left with no answers.

I am glad to share my story on MesotheliomaHelp because this site is unique by offering the perspectives of a caregiver (Jennifer Gelsick), a nurse (Lisa Hyde-Barrett) and a patient. I know that all the information presented is thoroughly researched, and they turn to me sometimes to get “real information.” I hope that by sharing my information here, I can help others find the reality of what happens to people with mesothelioma.

I was quite happy believing that mesothelioma was what they classed as a local cancer, that means it didn’t travel to other areas but stayed in the area it was found. In my case, it is in my left lung. Now we know that mesothelioma can travel, in some cases it has even traveled to the brain. But this isn’t what this article is about, it’s about the lack of knowing what to expect.

Many of us mesothelioma patients have had fluid at one time or another, either in our lung or abdomen, depending on which site the cancer has flourished. In those articles we read it doesn’t say that the fluid can make you feel unwell. Usually you can’t describe how you feel other than you are clammy, sweaty, maybe your temperature is up and you feel like you are getting a chill. If this happens, you should go to your doctor immediately.

If you have flown recently and feel this way it could be fluid, a pneumothorax or a DVT.  Where does it tell you this? Nowhere, but now you know.

Recently, I noticed my stomach was increasing in size, when I returned from holidays not only could I not zip up my jeans, but they didn’t even come close to fitting me. My stomach had ballooned. I had mentioned the growth of my stomach to my doctor prior to my holiday, and I was told that the excessive weight I had on my stomach was probably middle age spread, even though I am relatively slender.

One morning, a couple days after I returned home, I felt as I described above, clammy, etc., and I went to my doctor who sent me for an X-ray. The doctor there had me admitted to another hospital. At first they were only interested in my lung, my good lung now had fluid. I just happened to mention my stomach. On examination they found it was full of fluid, it had probably been accumulating for months and whether the flight had exasperated this or not I will never know. Although it felt like a struggle to get results, finally I had nearly 4 litres of fluid drained from my abdomen, and it is just now slowly returning to a more normal size.

Trying to research whether this was normal for someone with pleural mesothelioma was a dead end. Once again, now you know because of my experiences. I don’t know if it is normal, perhaps nothing that happens with mesothelioma is normal, but it can and does happen.

People writing about their own experiences can help those who aren’t sure if what they are going through is part of the disease. Does this happen? Should I feel this way? These questions are only answered on discussions or by those willing to share what they have gone through.

With mesothelioma it is hard to say this could or couldn’t happen. My illness has given me totally different symptoms to many that I know, while theirs has acted differently to mine. Do most people want to know what they may have to face while dealing with this deadly killer?

By going to the personal blogs out there like Lou’s, Mavis, Tess, and Linda’s [other mesothelioma warriors who blog about their experiences] to name but a few, we know people are looking for more information. Information on how to survive and whether what they feel is what becomes normal.  On my own blog, many search keywords come up like How Do you die from mesothelioma? Can you feel it growing?

I think it is important for mesothelioma patients and their families to know the medical facts of the disease, but it is almost more important to understand the reality of the disease. Perhaps by sharing the “raw” details of what I have gone through for so many years I can allay some of the fears of others, and give them a place to go for what they are up against.