My wife has mesothelioma- here I explain what that is

I talk about the cancer my wife has, but havent really spoken about what it is, or what they suspect causes it. I’m not a doctor, but unfortunately I have learned a fair amount over the last few years, and so will attempt to put some of that learning down on paper, and explain what it means.

Cancer itself is a disease where the bodys cells grow uncontrollably, and spread to other parts of the body. These cancerous cells will invade and and destroy the other cells of the body. It can start anywhere in the body (we are made up of trillions of cells), and can spread quickly if not controlled through either a form of treatment or a medical procedure to cut it out. The side effects can be horrendous, including lumps, bleeding, weight loss, coughs amongst others.

There are about 100 different forms of cancer that can affect humans, but as I mentioned before my wifes has mesothelioma. This is a type of cancer associated primarily with exposure to asbestos (over 80% of cases apparently), and will often be seen in the lungs of people who have breathed in the fibres. In this case it will be known as Pleural Mesothelioma. My wife is slightly different in that hers has developed in the peritoneum which is the tissue that lines the abdominal wall and pelvic cavity. Life expectancy of this type of cancer can be around 12 months, so in many ways we can count our blessings that she has managed so long.

Symptoms from my wife were very similar to a stomach disorder, like a gluten allergy. She had stomach aches for a few months, and then a bloated stomach. This was caused by the build up of ascites, a fluid caused by the aggravation that the tumours are bringing. This fluid gathers in the abdomen, and she needed it to be drained off. 

Other symptoms included shortness of breath, weight loss and extreme tiredness. These have continued throughout her various treatments, and have gotten much worse over time, especially the fatigue which can lead to her being fully tired very early in the day, and tired to the point of not being able to move.

Treatment can be tough to do. The peritoneal wall becomes covered in these tumours, like cottage cheese I was told. Initially she had chemotherapy, which destroys everything including the healthy cells, but for six rounds did cause her to lose alot of weight, and gain various mental issues in relation to going into hospitals. Even food and smells became associated with the treatment, so much so that we have to be careful what we do around her.

The first course did mean that for her, they were able to use a physical treatment. This was a peritonectomy, which involved cutting her open, and basically scooping out the tumours, and taking out various organs that had been infected, or were in danger. In the main torso of your body this is alot of organs, and includes the spleen (which helps with immunity), the reproductive organs (which brought on an early menopause), and appendix, while being very lucky that they didnt have to take out any of the bowel and leave her with a colostomy bag.

Further treatment has included the immunotherapy that works a little more with the body and then radiotherapy, which blasts targeted radiation. None of these are easy, just degrees of pain.

Mesothelioma is often misdiagnosed, and so a good doctor is needed. And early consultation if any of the symptoms I described are seen is vital. Cancer is a horrible disease, that impacts everyone around the sufferer, and causes untold hurt and pain.

When we first started on this journey (horrible phrase, but I’ll let it ride for now) we struggled to find information. The lung disease was more prevalent in the UK (lots of miners and so one over the years), and the peritoneal less so, and we felt we were learning every time we met a doctor. However, I have now found some great resources for information.

One site I have recently been made aware of is https://www.asbestos.com/mesothelioma/. They are based in Florida (regular readers will know our trips to Florida have had to be stopped due to the disease, so I am very jealous of their location), and the website has some great resource I havent seen before.

Some brilliant information about what the disease actually is (better than my laymans attempt above), and also some invaluable resource on what to expect for treatment, and unfortunately prognosis. This is something I often look for in my down times, trying to understand what we are looking at and for how long, the kind of info doctors can be reticent about handing out.

I would recommend taking a look if you need some info. Look hard enough and you will also see my wife mentioned on a couple of pages.

Thanks

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