Fears for the future

I have a few fears for the future, aside from the obvious one. I am fully aware that we will lose my wife at some point. There have been times when I thought that time had come and we have got past it, but realistically it will happen.

The first worry I have is how I will tell the children. They are currently 11 and 17, and have lived with this for over 6 years, but when it does happen, I have no idea how I will tell them. I have no concept of how to start that conversation, or how to comfort them. And that isnt because we are not a loving family, but because I have never had any experience of that level of magnitude. We have dealt with alot over the years, and have come through, but even with the major experience advantage I have over many dads, I still dont know how I will manage at that time. I’m not ashamed to admit I have had nervous breakdowns trying to imagine it (usually after a few beers to be fair). I always feel my main role in life is to try and protect my family from things, and this disease has shown that that is not possible. I cant shield them or my wife from this horror.

The next fear is for my wife. I have been there when she has been told she will be put into a coma, and have seen the fear in her eyes behind an oxygen mask. I have seen her lying in that coma, and others way too often. I cant even imagine what goes on in her head, and how she copes after all of this. How can she keep going, and look after us all, when her brain has been effectively rewired by a stroke, and her body literally cut open and changed by surgeons, and cells destroyed by drugs and radiation and nuclear isotopes. After all those horrendous and scary and disabling experiences can a person even get out of bed in the morning? I know they say that after a near death experience people have a renewed vigour, but I’m not going to lie – that would need a hell of alot of vigour to get over. I struggle after a heavy night on the ale.

I also worry for the rest of the family. My mother in law has devoted so much to the care of my wife over the years, and I dont know how she will cope. Other immediate relatives are close and the fabric of our whole family will be ripped apart. Friends also will be lost to us I’m sure – I’m useless at keeping in touch with people.

My final worry is for me. I’m now 47, and have now been a carer for 6 years. I have friends, and a job, and the children to look after and worry about, but I also need companionship. While my wife has been ill, our marriage has evolved and whilst it is still loving, we dont have the sort of relationship other people may have. We dont do date nights – my wife would probably fall asleep early, and she cant eat a wide variety of food, or drink alcohol. She is in pain quite alot, an ongoing back problem adding to the other concerns, and so a physical relationship is out of the question. All this means that in a selfish way I feel I am missing out on a fair amount of living, but also do not know how I will ever get that back in the future. The things loving couples do together are now realistically gone from our marriage. I dont think we will ever have them back in our lives, and I also dont know if I will ever find that again in the future. The disease has robbed me of most of my life, and left the identity of the man with the sick wife, the family always seen with concern, the first question always how is she?

Starting out in life, as a young couple you have hopes and dreams, and build a life together to try and achieve that. Cancer has come along into our lives, and taken that away from us, and despite amazing medical science extending the time we have together, there is always the knowledge in our minds that it could change at any second – a cough may be something more nefarious, a routine scan could show a spread of disease, and in seconds things could change again. This is my final fear, that just when things feel they are going well, we find out that no, they are not, and the reality will suddenly drop again, and we will be cast back to hospital rooms, and operations and horrible treatment. There is a feeling of waiting for the inevitable to happen, and it is the anticipation that hurts so much for the rest of us.

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.

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Definitely Maybe

Some close friends of ours have found out that the wife has to go back for more treatment, after nearly two years in remission. Our hearts g out to them, and I know exactly what the husband is feeling.

I briefly spoke to him yesterday, and his comment that stuck with me was that you just want to know something definite. The path forward is not clear, and unlike most illnesses, where you go to your doctor and they give you some pills, or an operation, or cream, and they can almost guarantee that it will clear up, with cancer you don’t have that. You can think you are clear, only for something aggressive to come rushing back at you.

I firmly believe that is a big factor in the final stages of some people – they effectively get worn down by the constant worry, and their bodies can’t cope. Stress and constant worry can be seriously debilitating, even with the harshness of the disease itself.

First Treatment

It wasn’t long after the diagnosis that we had met with a very specialised cancer doctor. Unfortunately my wife has a form of cancer caused by asbestos (so we found out later), a mesothelioma of the peritoneum. This is usually associated with the lungs (people breathe in the asbestos fibres), but here the tumours were forming on the wall of the cavity surrounding all the organs in the lower abdomen. God knows how that happened.

We were told there were a couple of approaches to try and get rid of this. One was surgery – a ten or twelve hour operation to open up the cavity and remove all the tumours. But the scans seemed to show this would not be possible – the bulk of disease appeared too great.

So that left chemo.

Now I had only ever met one person who had had chemo, and so wasn’t all that aware of what it entailed.

I soon found out.

My wife was very brave – she had a special outfit picked out, to show that the disease was going to be beaten. And she went with her mother for the treatment, six hours in the ‘chair’.

I don’t recall the specific drug, but it was tough and strong, and should help to reduce the cancer.

But the chemo also destroys everything else around it, and has severe side effects. In my wife’s case, hallucinations, great big bloody dragons in our room, watching over us. And a lack of appetite on top of the vomiting – they say to bulk up before hand, but the disease had made that hard, hence the rush to get the chemo started.

And then there were the mental impacts – eventually certain foods, and clothes would have adverse memories attached to them, and even walking into the hospital was a struggle. It was devastating, watching her lose weight, strength, happiness.

For six rounds – once every month, this went on. And not even knowing if it was doing what we hoped and reducing the disease. All we could see was the deterioration of a person.