chemo - mywifehascancer.blog

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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Freedom Day

It seems like a good day to put up my next post. It has been a while, I will admit that, but the impetus just hasnt been there. My wife has now re-started her chemo, and has had three rounds, with a fourth to come this week.

It has been tough, she has a cycle of three weeks, which means in practice a few days worrying about the upcoming treatment, then the few days of hospital visits, and then a week or so feeling rubbish, and hopefully a few days in between when things feel better. She doesnt sleep because of the steroids, and then doesnt sleep when coming off the steroids, she feels sick, she struggles with eating some foods, and the list could go on.

On top has been the worry of build up to the end of Covid. Whats that you say? Yes, it is over the UK – Freedom Day, no more reason for masks or social distancing! Hopefully most people are like us, and realise that the measures going on now are not sensible. We will still keep our masks on (I like being able to swear under my breath in a shop and no one knows), will keep our distance and try our hardest to have some personal responsibility. My wife is still vulnerable after all, and having seen one time of her losing her lung capacity, and be put into a coma to breath, I do not want another experience like that.

We have been able to cautiously see family – I took my children to stay with my parents for the first time since Christmas 2019. It was great, they had a brilliant time. We are now trying to arrange more meet ups before the inevitable lock down later this year. I feel like a bad prophet, but I have seen 28 Days Later, and am sure that given a few weeks of people acting like nothing is wrong, we will be back at square one. Please hope I am wrong.

The children are coming to the end of school for this year – and have shown remarkable resilience. They have both had great reports, and have even been able to do some trips, and out of school activities. We have been lucky that there have been no close positive cases for them.

I may be going back to my office soon as well. At first I didnt want to, but now think I need some time with other people I work with. It will be phased however, and with no pressure, so depending how my wife is, we may have to be careful. Got to find the work clothes now – I am going to guess that I may have found the trousers have shrunk while in the wardrobe!

We had the Euros – and what a time for England. My son is nine, so for him this was amazing, a successful England team is all he knows. He was devastated at the end of penalties though – but so proud of the team. It has inspired us to play more – he is in a team, but we have been doing extra with his friends. And let me tell you – 8 and 9 year olds are much fitter than a slightly overweight 46 year old with bad knees! I was knackered for days!

And thats all for now – hopefully this weeks treatment goes well. Time to leave with my favourite tune of the last few months – James with All The Colours Of You. They are such a great band, and I feel this and the accompanying album are career highs. If you only know Sit Down or Laid (and if you dont know those tunes shame on you), check this out.

Spring Heatwave

Strange day yesterday. We had a mini heatwave in the UK, and the temp hit 19 degrees. My daughter was off for Easter hols, while my son was still in school, a difference that always causes friction. I even went for a run in the heat, which was a bit silly.

No, the strange thing was how tired my wife got. She hadnt done a great deal all day, had a friend round in the garden as per the new guidelines, and done some tidying, but by 8 pm she was out for the count, lying in bed, fast asleep.

We are seeing an increase in her tiredness. Most evenings she will fall asleep early, and be struggling to get up in the morning. Along with a sick feeling, things are not looking good. Her symptoms are very similar to when she was originally diagnose. Her belly even looks a bit swollen, which happened before when the acites built up in the peritoneal cavity, caused by the tumours.

If she doesnt start chemo by the end of May, I will be very surprised.

I have said before but it is affecting the kids, and we are having my son not sleeping well. He wakes in the night, but at least now I have got him to come to me and not my wife. Hopefully the start of outdoor sports will help as football training starts tonight.

We are taking a break over Easter, and getting away for a few days (within the guidelines), and the change will do us the world of good. We have had over a year at home together, and we need a new space to be trapped in. Being in our house means that all the DIY jobs that need doing become more pressing all the time, and dissatisfaction kicks in. Personally I want to get some fresh air, and hopefully a full nights sleep.

Coming out of my cage

It’s been a while since I have written here. No, denying, covid lockdown has been tough. And long, so very long.

But now, both my wife and I had the jab. Astra Zeneca if you must know. I had what felt like flu for a day and my wife was a little worse, but that was to be expected with no spleen. So far no long term side effects, but the radio does buzz when I pass by. Waiting for my instructions from Bill Gates though.

But mentally things are still hard. My wife still can’t drive and that is doing her head in, extreme depression from the awful situation has kicked in. This is how life will be, her feeling nauseous and tired every evening.

The latest results show some progression in tumour growth, and will probably mean treatment by the end of May. We are not looking forward to that.

Sometimes I wish the scans were more conclusive, rather than this delaying all the time, wait a month we will do more scans, maybe treatment in a few weeks. Some one said it is the waiting that is the hardest for carers, and I agree. I feel we can’t move on with our lives with this hanging over us, five years of intense pressure while our world is on hold. It feels bad to say but I sometimes wish it had ended a few years ago.

The children are feeling it too. My son is very clingy, and knows she isn’t well. He is waking in the night, and that doesn’t help us.

End of lockdown should be a joyous time for people as we can see loved ones, but for us it will be a return to the awful reality that has been hidden and obscured by covid.

Trying times

We headed into the New Year with the knowledge that they needed to redo all the tests and re consent for the trial, due to the steroids my wife was taking. This was bloody annoying as it meant three more days in various hospitals, with numerous bloods being taken, and an awful lot of hanging around (what is it with hospitals and waiting around?).

But the trial has started today. She went in this morning, and had the two injections and blood tests and whatever else. I wasn’t there, my mother in law took her as I had to take care of our children. She will be in over night, being monitored. The trial is for a form of radiotherapy, mixed with other drugs.

The most worrying thing though is the potential risks. This is phase one, so really early days, and we have no way of knowing if it will have any benefit. But we also know it may have considerable downsides, and this could lead to the only other option (chemo) not being available (if she gets sick from the trial). It is damned if you do, and damned if you don’t.

So mentally it hasn’t been a great few weeks. Let’s see how the drugs go.

Trials and Tribulations

It’s been a while since I updated this, so first, Happy Christmas to all. We had a nice time, usual rushing around visiting relatives, but we have managed to get some rest. It is hard – my wife doesn’t have the same energy as she used to, and also struggles with having people staying – she likes things just so, and not having people mess things up!

The big news came just after the last lot of scans (see my last post). My wife was called to say there could be a place on a clinical trial. This could be massive – apart from this the only option might be chemo. One person had dropped out (reaction to the drug and nothing sinister), and so my wife had to go in for scans, and blood tests. It was two days in the Marsden – which was quite stressful for her, as she had mentally come to terms with no more trips in. The trial itself would entail an overnight stay every 6 weeks, and then a weekly visit to have bloods taken. A big commitment, but hopefully worth the time.

We were unsure at first – this is Phase 1, so very early days, and obviously means no guarantees of what the reactions might be, how major the side effects could be, and no knowing what the mental impact would be. My wife really struggles mentally with going into the Marsden, and so this could be a last straw.

After the usual delays, and issues with blood taking and results, we are now waiting to know whether she will be accepted. We hope she will, and have mentally come to terms with the potential process.

So we will start the new year with some hope. Fingers crossed 2020 will bring some good progress – it would be a change for the new decade.

Kicking the can down the road?

As planned we met with the specialist. The meeting is always delayed, so we sit in the waiting room, desperately trying not to make eye contact with other patients, while making idle small talk.

I think it was good news, but it is hard to know what is good, when the parameters are so off from normal. Anyone else with the measures, and amount of tumours my wife has would be straight in hospital. But in her context, some growth, but no spreading to other areas is seen as good. Bad for us is spread of disease elsewhere.

How can that be? Good should be “Great news, it’s all gone”, not “Well, at least you don’t need chemo right away”. It’s messed up.

It also makes the week stressful. Family say it’s good, but inside we are saying it isn’t. We just have to wait another couple of months.

Sometimes not having a definitive move is really tough. Having an action to take is easier, definitely on your mental state. Again, I don’t know how to react, what to do, what to say. I don’t know what is going on in my wife’s mind. And then just when we have got to grips with the latest, another round of scans will come along.

Like six rounds in the ring…

In the end she had six rounds of Chemo, once every month, with pills to take in between. These were to stop the sickness, and to counteract all the other nasty side effects.

She had to eat properly – we would buy high protein drinks, some even on prescription, so that we had a cupboard full (they got thrown away eventually as she couldn’t stand them). I had late night trips to buy angel delight (splodge as my childhood fondly called it), and came adept at cooking pancakes. Anything to keep her strength up.

After three rounds we had had a scan, and a meeting with our specialist. Thankfully the pain was doing the job, and we were seeing shrinkage of the tumours. This was amazing news, as it meant the aim of surgery might be coming.

It was also around this time that we had a battle with our life insurance company. Now, we had taken out cover fortuitously only a couple of years ago, and thought we were covered for an event like this – don’t we all. But oh, no, we weren’t, at least not easily.

There is a distinction between terminal illness cover and critical illness cover – and we had only got terminal. This meant that while hoping beyond all hope that the treatment was doing some good, and our specialist doing the same, we had to give evidence to the insurance company that showed a twelve month or less life expectancy. Always check the small print…

But after all that, the six rounds of treatment did work, the tumours had reduced, and she could take a break to get some strength. We took a short holiday with our children, and prepared to enjoy Christmas, in the knowledge that the probable next step was a peritonectomy.

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.