Tag: radiotherapy

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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Holidays with a disabled partner

Once my wife had recovered enough from the radiotherapy, we were able to look at having a break. The recovery did take a long time though. Because of the location of the tumour being zapped (her liver) and its closeness to the other major organs, she did not feel well for a few weeks. Thankfully the sickness passed, but it could still be triggered by anything, the most violent being a crumb on a biscuit with an ice cream getting stuck in her throat, and the body then deciding to reject the rest of the stomach contents. Not great when we were sat outside an Italian restaurant in Paris without any toilets, leading to her having to quickly find a spot away from other diners. The reaction was impossible to predict, and came on so quickly. It was very embarrassing for her, and yet another indignity this disease has thrown her way.

So we did manage to get to Paris, my daughters dream destination, and a few days at EuroDisney. The whole week was exhausting, with alot of walking, at a time when the weather was heating up the ridiculous heatwave we had last week. Somehow (probably through Disney magic) my wife managed to see all the sights she wanted to, and eat all the food she wanted to try. We were lucky in that we had a card to get assistance, which meant that we could avoid queues, and walk straight onto rides and so on. I felt guilty at times, however there was no way that she could have ever stood and waited, she would have collapsed. Growing up, I always thought that disabled people were in a wheel chair, or had a really obvious mental illness, but now realise that isnt the case. It applies to those who have unseen illness, or have a lack of ability to walk unaided, basically those who cannot be on an even playing field with everyone else. My wife cannot do half of what other people can do, but why should she miss out on the fun those people have? And if anyone wants to complain, I have a list of operations and treatments and drugs they take to be on her level.

The pass helped, but it isnt easy having a disabled partner when away. She has a lack of sight on the left side from her stroke, so crowds can be a real problem, which at a theme park is a regular concern. Her hearing can be restricted, particularly in large busy areas, so we always need to aware of the surroundings. She cant carry too much, so my daughter stepped up to carry a bag along with myself. We needed to check where seating was, and always be aware of the nearest rest room, and have a regular drink to hand. Plus she would get tired and then confused, so we had to ensure that we knew when she was able to respond and when she needed to rest. If it sounds alot like having a child, then that is right, but with the added awareness of someone who used to be exceptionally capable, but now isnt, and is frustrated by that.

On a guilty side note, I notice that when we leave her to rest and I take the children out for a while, the pressure seems to lift, and we can have fun without the reality kicking in for a while. There doesnt have to be worry about lots of people being around, or where the toilets are, or holding her hand to guide around places. The three of us can get on with enjoying things together, and while I enjoy that time, I feel very guilty afterwards, realising that she is missing out, but also that this is how things will be in the future.

Right now she is feeling the effects of the week away, as well as the knowledge of what her latest scan showed. The liver tumour has shrunk slightly, but has some smaller friends with it, and there was mention of the pelvic bone showing signs, which was the first time we recalled hearing that, but does make a little sense from the way her hips hurt alot.

Currently her back is bad, which is mainly from the walking around and then sitting in cars for a long time. She is in agony, and it does cause issues for us. I worry that this is a symptom of worse to come – and that we are on the down hill slide.

As a partner, it is tough as well, though not anywhere near the same. There is no break for us as support, every day has some form of concern, or the need for help walking around somewhere. It is a 24/7 job. Colleagues at work will clock off and head home to relax, but I know will head home to pick up where my wife fell asleep, and make sure she is comfortable, with the knowledge that a pain may mean the need to head to A&E.

This is not a post with any answers, but more a post to let people know that if you have a partner like this, you are not alone. There are lots of people in the same position, some worse, some better, but all doing an amazing job looking after those they love. It is tough, but we need to remember to talk to friends, and try to escape the pressure cooker now and then to recharge and be able to face the task we have. From my other posts you will have seen mention of live music, records, running and a few other things I do to stay sane. Sometimes they work, and sometimes they dont. However, it is important for the carers to be healthy, otherwise they arnt caring.

Def Con One

Sometimes I don’t get it. I can remember whole lines of raps from Pop Will Eat Itself songs. I can recall the lyrics to chart hits from the 80s and 90s. I can name the Manchester United first team from 1986. But I have to make long lists of tasks I need to do. Post it notes adorn my desk. Bits of paper blu tacked to the wall. Especially tough right now as there are lots of appointments to recall.

Last round of radiotherapy is tomorrow, if she can make it. As I mentioned before, there is a real mental blockage, particularly around entering the hospital, wearing certain clothes, eating certain foods. I have to remember to wash and put away the hospital outfit in the right place, and not mix it up with anything else. I need to recall what food cannot be eaten, and even if drinks need to be taken away out of sight.

She gets physically sick entering and leaving the hospital. And when at home, she is still sitting in bed all day, not able to get comfortable or rest. This treatment is brutal. Poison for the body, poison for the mind.

The rest of us are again in a weird state. Life outside goes on as normal, while behind our front door exists a different reality to everyone else. The children are managing to do their school exams, and are so brave at doing that, dedicated and hard working. I go to work, and it feels odd that people dont mention or ask, despite many of them being aware of what is going on. I guess that you dont always think what is happening in other peoples lives, I know I dont.

Death by a thousand cuts

Four rounds now, and they are starting to bite. She is struggling to get into the car to go to the hospital, let alone get out the other end and have the treatment. Because of the location they are targeting on the liver, which is close to the bowel, every time causes more and more sickness and nausea, sometimes even physically. And then add in the mental aspect as the knowledge of how she will feel afterwards causes anxiety, and she is in a really bad place.

Finding food to eat is tough. She doesnt fancy anything, and when we put something in front of her, she may pick at a bit, but cant eat it. She has lost alot of weight, and looks very weak, and feels trapped in her own body. Unable to go too far without full strength, she is currently lying in bed looking at the ceiling.

I worry about this reaction, as this time round it feels different from before. Yes, she has had a bad reaction to chemo, and has been hospitalised following immunotherapy, but right now she is losing strength, and also losing the will. I see a depression that is staying longer, that is taking over every minute when she is at home, and awake. And that is often, as the pain from her liver makes it hard to get comfortable.

This must be the way that cancer finally gets its victims, by slowly weakening them, until they can face no more. The methods used to try and erase the tumours are so strong, so damaging, that there is now wonder that eventually the patient loses the strength to do any more. Though I hate the analogy that a cancer victim loses their battle (I feel it implies that they didnt do enough), I see the way that cancer is a death by a thousand cuts, taking a little more away every time, not leaving enough time before the next round of treatment, that will weaken a bit more, and then not leave enough time until the next round, and so on, an ever shrinking circle of treatment, then waiting, tormenting the mind, and hurting the body, leaving a permanent worry about what is going to come next.

As you may tell, this feels a very dark time for us as a family. With luck, we may come through, and my wife may gain her strength back, and I really believe that she can (she has beaten so many odds before). There is one more round of treatment, and then a longer break before scans to determine what has happened, when hopefully we will see the results that outweigh the pain.

Gove, Patel and a 2nd Round

I know that the two arnt connected, but yesterday was the 2nd round of my wifes radiotherapy, and it coincided with some quite unbelieveable exhibitions of wankery from certain Tory ministers.

First up was Michael Gove, a living Pob puppet (one for the 80s kids), who went on TV and gave a series of interviews about the cost of living crisis amongst other things. And during this really serious, life threatening topic, this wet wipe of a politician did at least three funny voices that I saw, throwing out his comedy routine like he was on Britons Got Talent. Our leaders should not be demeaning very real issues in such a way. The people who elected him as an MP should be deeply ashamed, and to be honest he should as well, but I suspect that whatever chemical comedown he is undergoing today will take his mind off it.

Second in my list of Tory ministers being absolute loathsome creatures is perennial ranking officer of the dark side, Priti Patel, refusing to engage in debate with her opposite number, and sitting making faces during a session in parliament. The way some of these entitled buffoons act when in the Commons makes your eyes bleed. If they engaged in that type of behaviour in any other jobs they would have been shown the door years ago. It is behaviour that small school children grow out off very quickly, as they learn what respect and dignity are, which then develops into a professional attitude. There is nothing professional of dignified in the way our so called leaders act right now, treating the country as their personal play thing, laughing at the very people who elected them in the hope that their lives would be improved. It is deplorable, and they should be deeply ashamed, but obviously wont be.

And I havent even mentioned the sack of shit in a cheap suit that is the Prime Minister. Another day, another rant at a priviliged over promoted wank sock will come at a different time.

This all coincided with the second round of radiotherapy, which went about as well as you could hope. The anticipation meant that she was not in the best frame of mind going into it, feeling sick, and then the inevitable delays meant that she was longer in the hospital, and was then ill when she came out. She has lost alot of weight, and looks very frail. It breaks my heart that there is nothing I can do but watch as my family and loved one falls apart in front of my eyes, seeing the fear in her eyes, and trying hard to make things comfortable for her.

These are the issues that real people are dealing with, and yet the names mentioned above live in a different world, where everything can be treated as a joke, and where there are no consequences. The way people are treated now makes my blood boil, and it is amazing how little empathy they have.

10th May

The radiotherapy has started this week, and so far she has had alot of tiredness and nausea, so the it hasnt gone well. We didnt expect it to be quite so tough so soon, but apparently the location of targeting the liver so close to the bowel makes it tricky. The specialists had given us the potential side effects, and these were on there, however like most people we had kind of thought it wouldnt start so soon. Kind of thought it would be a cumulative effect as opposed to instantaneous.

Obviously this will make the remaining trips to the hospital much harder, as now the psychological aspect will manifest itself. Already she has problems with certain foods and clothing associated with previous trips, and this is only going to make it worse. We have to ensure that certain containers or bottles are not around when she is in the room, as she will almost have physical response. I’m not a scientist, and so struggle to understand the full concept, but can understand on a basic level.

What has also made it harder to accept has been a couple of social events we have attended recently. One was a party on Saturday night, the other a school awards ceremony today. Luckily we could both get there, but due to the current situation were not able to fully enjoy the events. Saturday night was particularly hard, as everyone there was dressed to the nines, drinking and chatting away, while we were able to talk to a few people before my wife got too tired and had to sit in a corner, before leaving early. It doesnt feel fair, that after so long of us having this diagnosis and sentence hanging over us, we are still dealing with it, while the world has now come out of a pandemic and is coming back to life.

Interestingly, there is a theory that post the Spanish Flu, people were determined to let their hair down and enjoy life to the max, and that this led to the ‘Roaring 20s’, and that we may see something similar now (cost of living crisis allowing), and I did feel that at the party we attended that was the case. It thus felt very frustrating to not be able to do that, and also have the knowledge that for us life hasnt changed back.

Next round is tomorrow, and this should be quicker as they know the dose to give. But lets hope the side effects dont build on today.

Radiotherapy on the liver

Latest news is that scans have shown that the cancer has spread further to the liver, and quite big at that. 6cm, which when I look at guides on line, is stage 3. I take this as being pretty bad, and that was echoed in the speed that the specialists moved to arrange radiotherapy to attack it.

First up was a trip to get the gold markers put in. These show the technicians where to aim the radiotherapy beams, and make sure they dont miss. This was quite quick, but left her feeling achy, and her side was hurting. It felt like a stretching at times, and coupled with the noticeable swelling shows that this treatment is not before time.

Then today was the first session. It was a bit longer than hopefully it will be going forward, as the scientists had to do lots of calculations to ensure they gave the correct dosage. But eventually I got the message to say she was out, and on her way home, thankfully. Tired, and again aching. But home, and so far, no other side effects. But I suspect it will be cumulative, so we wait and see.

It has been a stressful time, as the children have exams. The youngest started SATs today, while the eldest has GCSEs starting in earnest next week. Not the greatest of timings to begin a new round and type of treatment.