MESOTHELIOMA – LIVING THE JOURNEY
I have listed some of the main points that I consider contribute to, and empower sufferers, their carers and loved ones, and those bereaved to move forward and live their journey without regret. I have written from the view point of a person who has lived the mesothelioma journey for a period of over twelve (12) years of living both the Pleural and Peritoneal Mesothelioma journey with my late wife ‘Julie‘, and knowledge gained supporting over 1100 sufferers and their family members as the Support Co-ordinator for the Bernie Banton Foundation. I hope, at least in some small way, it may help make your individual journey go a little more smoothly. – Rod Smith
The only certain thing
Let me start off this discussion by stating: ‘The only thing certain about malignant mesothelioma, is that there is no certainty!‘
First things first
Please take the time to read all the pages in the About Us, the Support and Care, and the Mesothelioma section tabs of this website. Try not to be tempted to spend hours searching the ‘worldwide web‘, you will find many (if not the majority) of mesothelioma or asbestos related disease sites [particularly the USA sites] are fully sponsored (read ‘owned’) by law firms who are either asbestos disease litigators, or who harvest leads for the specialist litigators. Many will offer ‘free’ books – don’t be surprised if you order one, that the book is followed up by a call, or contact from a law firm touting their services for making a claim. It is important when consulting with ‘Dr Google‘ on the ‘Worldwide web‘ to realise you only get told or fed what particular individuals, companies or organisations want to divulge, or want you to read or hear. In Australia, your best source of reference to find out, or keep up to date with what suitable treatments and/or trials are available, is your treating specialist oncologist. If you want to find credible information about what is happening regarding Malignant Mesothelioma the USA or the United Kingdom we would suggest you contact the organisations listed in the International section of the Support Organisations page.
Knowledge empowers you to in some small way to control your journey – ask questions, seek answers, try not to get caught up or lost in the unknown. Many (possibly most) people find it a lot easier to deal with the known, rather than sit wondering. There are many things living a mesothelioma journey that will need de-mystifying. Have you ever asked, been told or know exactly what your form of mesothelioma is, or what it means? Are you concerned or worried about the side effects of treatments, or how you will most likely be as the journey evolves? It normally is very much a case of, if you don’t ask, you wont get told! The best way to alleviate the worry is to seek and find out, or ask and be told.
Who Will Be In Charge
When a person is diagnosed with Malignant Mesothelioma it is really important to know, or establish who is going to be in charge of the medical side of the journey. It really is important to have a clearly defined treating team hierarchy looking after the medical care journey. This normally would be your General Practitioner (GP) plus either the Respiratory Specialist, or treating Specialist Oncologist. We are blessed to have many of the world’s most highly rated clinicians and researchers specialising in malignant mesothelioma, spread across Australia’s capital and main regional cities.
Getting the right medical and legal specialists
When talking either medical or legal, from the outset, It is really important you have, or engage, not only specialists experienced in their field, but also importantly, who you can relate to, and you feel they are batting for you. If you are in a position to make a choice re your medical care and wellbeing, then don’t be afraid to exercise your ability and/or right to make, or ask for change if you feel it is necessary or desirable. If possible, your treating specialist should not only be well credentialed and experienced with treating mesothelioma, but also make you feel comfortable, give you time and answer any questions you throw up. No question is too dumb……. they are the experts after all. The same applies with a specialist litigator.
When engaging specialist medical and legal professionals read up on them, ask questions – do your own due diligence. Importantly, do they have the necessary expertise and experience in the relevant field? Trust your gut feeling – are they someone you feel will look after your best interest, give you the necessary time, and look you straight in the eye when answering your myriad of ongoing questions? Do they constantly look at their watch, and/or are dismissive? Do they give the impression they will be there for you through thick and thin? Do they show respect towards you? Do you feel they will show empathy, compassion and be holistic when dealing with you? This is all about doing your homework and having ‘no regrets‘. If you have doubts…… think about it, perhaps consult further, if you still then have doubts and have the capability to change to another specialist, think about finding someone you feel you will be happy with, or who may satisfy your needs better.
Don’t be afraid to make change, if you feel you it is the right thing to do…… this is after all your journey!
Asking how long…..
The first thing most people do when they, or a loved one is diagnosed with malignant mesothelioma is to ask the doctor or treating specialist about the prognosis. Many will get told the average statistic which often quoted as being between one and two years – but the truth is, particularly where a sufferer is relative well, no one can put a definitive time frame on it. Why? The basic answer is at this point in time there is no marker to indicate how well someone will respond to the standard (or non-standard) treatments currently available. The best answer to how long, I believe is to look at the person themselves.
Over the 12 years of living both the Pleural and Peritoneal Mesothelioma journey with my late wife ‘Julie‘, and supporting over 1100 sufferers and their family members as the Support Co-ordinator for the Bernie Banton Foundation, it is evident this is the hardest thing a newly diagnosed family grapple with. It certainly was in our case, we were told, due to the advanced state of both diseases, not to expect longer than 2 months – ‘Julie‘ survived 3 years, 1 month and 7 days.
The truth is though, some sufferers who are diagnosed very late in their mesothelioma journey, do only survive for a number of weeks, others months or years. Some respond so well to the listed chemotherapy treatments and/or other new wave not-listed treatments such as immunotherapy, or to the limited surgery options, it is not that uncommon to know of 5 plus year survivors – officially the malignant mesothelioma 5 year survival rate is between 5% and 7%. You, or your loved one may be one such person.
It is usual these days when be given a mesothelioma diagnosis to be told what ‘Cell type‘ the mesothelioma tumours consist of. Is it good, is it bad? To read more about ‘Cell types‘ read the Mesothelioma – Explained page.
Staging is something doctors and treating specialists are generally a little reluctant to discuss, and hence it is a common subject often asked about. To read more go to the Mesothelioma – Explained page.
What is fluid build up?
One of the most misunderstood things is ‘fluid‘ build up, many people think the cancer causes the fluid, it doesn’t, it causes the build up of the ‘fluid‘. We all produce fluid around our vital organs to lubricate the inner and outer linings (the mesothelium) that surround the likes of the lung (pleura), heart (pericardium), stomach (peritneum), etc. When tumours grow on the linings, they start to dam up fluid, stopping it from naturally escaping through the body. We often hear of ‘fluid on the lung‘ or ‘ascites‘ in the stomach. This basically is trapped fluid in either the cavities between the outer and inner linings of either the thoracic (chest) ‘pleural cavity‘ around the lungs or the abdominal area around the stomach.
Fluid trapped in the pleural cavity decreases the room available for the lung to expand in and out, and causes shortage of breath. When it is trapped in the peritoneal cavity it causes bloating of the stomach and obvious discomfort. There are two basic ways to alleviate the build up of fluid, either drain it or treat the tumours to eliminate, shrink or restrict their growth so the fluid can dissipate. In the case of the pleural cavity (Pleural Mesothelioma) there is a third option, a relative minor operation called a ‘VAT Talc Pleurodesis‘, which is usually carried out at the same time as taking a tissue biopsy sample to confirm a MPM diagnosis. Read more in the Mesothelioma – About + Types section and in the Mesothelioma – Surgery section.
It is important to note, that not everyone diagnosed with any form of malignant mesothelioma will experience fluid build up.
Five things to discuss up front
 Mesothelioma is not lung cancer
Malignant Mesothelioma is not Lung Cancer, neither is it Asbestosis – they are all different diseases with different prognosis and different treatment regimes. Malignant Mesothelioma is a cancer of the linings that surrounds most of our vital organs, including the lungs; the heart; the stomach, the brain and the reproductive organs in both women and men. Asbestosis is not a cancer but rather a hardening of the lungs, caused by asbestos fibres matting and causing the lungs to go hard.
 Do mesothelioma sufferers need oxygen?
It is not a given if you are diagnosed with Malignant Pleural Mesothelioma (MPM) that you will end up on oxygen, if fact very few people diagnosed with MPM end up ever needing supplemental oxygen as a standard part of their treatment regime. Bernie Banton for example needed constant supplemental oxygen because he had asbestosis which causes hardening of the lungs – it had nothing to do with being diagnosed with mesothelioma. Read more on the Mesothelioma – Explained page.
Like with virtually everything to do with mesothelioma, whether a sufferer has pain depends on many factors. The truth is some sufferers experience very little pain, yet others do. Pain in the main can be controlled. To find out more go to the Mesothelioma Treatment – Therapies page.
 Being told stories about having chemo
Beware of stories about having chemo told by often very well intentioned family members, friends, neighbours, etc. – and how terrible it is! This is undoubtedly true for some sufferers of some diseases, and can be true for for some sufferers diagnosed with Malignant Mesothelioma……. but it is not necessarily the norm for those suffering malignant mesothelioma! Most people for example, never lose their hair (if they have any) and many people never vomit or are violently ill. Chemo treatment is totally different for Malignant Mesothelioma compared to say, Breast Cancer, as are the side effects. Also the way chemo is administered now compared to years or decades ago is like comparing chalk and cheese. Please read more in the Mesothelioma Treatments – Therapies page.
 Mesothelioma should not be blamed for every pain and ache
One of the most important things ever said to my late wife Julie and I (Julie was diagnosed with Pleural Mesothelioma, separate Peritoneal plus Ovarian Mesothelioma in July 2008) by our amazingly holistic oncologist, Dr (Assoc. Prof) Vinod Ganju at Peninsula and South East Oncology, Frankston, Victoria Australia, was:
“Just because you have been diagnosed with mesothelioma, don’t think every thing that happens to you has to do with the mesothelioma. You are still a normal person subject to normal ills and ailments!”
This was one of the most profound statements anyone could have said. There were many times throughout our three years, one month and seven day journey we may have been tempted not to seek help for something that ended up being nothing to do with mesothelioma and was fully treatable.
I always love telling the story of an elderly (80 plus year) sufferer, an exceedingly crotchety old bugger – whom I got on extremely well with.
I was checking up on him one day and said, “How you going mate?” He said, “I would be fine, I wouldn’t know I had meso, if it wasn’t for the bloody pain in my hip!” I said, ” How long you had that for?” He replied, “About six months!”
I thought to myself, “Hello? Realistically, what has mesothelioma got to do with hip pain?” It made no sense to me! So I told him to see a specialist about it. A month later he rang me back, to thank me, and tell me he was pain free……. it was curable, and never bothered him again! It had nothing whatsoever to do with mesothelioma! Please remember this rather long winded anecdote as you begin, or go through your individual mesothelioma journey.
The Asbestos Dragon
I call malignant mesothelioma cancer the Asbestos Dragon, as at this stage there is no known cure and the premise is it doesn’t matter how well a treatment works, like the mythical Dragon, the cancer can’t be killed off completely and the tumours will start to grow and once again raise their ugly head. Hopefully the treatment will cut the Dragon off at its’ toes and take many years to resurface. But there are no ‘known or givens’ on this – the only thing certain is that the mythical Dragon will again raise its’ ugly head at some stage. With any luck the second regime of treatment will work its’ magic, but generally the second and subsequent treatments will not work as well as the first line of treatment, and only cut the Dragon off at the knees and so on. Sometimes it will not work at all – there simply is no givens.
Treatment is like pushing a car up a hill
Think of treatment like pushing a car up a hill. When you start having treatment, just imagine you start pushing a car up a hill from the base of the hill – when the treatment finishes you pull the handbrake on. Some sufferers pull the hand brake on and the car stays parked on the side of the hill for many years, for others it may be significantly less. The only thing certain is that, as malignant mesothelioma has no known cure, at some point in time a sufferer will need to have more treatment and begin pushing the car further up the hill again. Generally when this happens the handbrake is not held on for as long after each regime of treatment. Eventually the car will reach the top of the hill, and there will be no more treatments available. The thing is no one can really say, but it could take months for the car to reach the top of the hill, or it could take years – I pray and hope for any sufferer or their loved ones reading this, that it is a very slow journey and that the hill turns into a mountain!
Do existing treatments work?
Many people (including doctors) believe the standard mesothelioma cancer chemotherapy treatment doesn’t work – because it is not a cure, or has not worked when the cancer tumours start to grow again, but the truth is I have known many sufferers who lived for long periods after having existing available chemotherapy treatment options, and what’s more lived with a quality of life!
The relative new wave of treatments including immunotherapies have not reached expectations to date, but have proven to be a useful weapon in the treatment armoury to try, once standard treatments have stopped working or do not work from the outset. There are many people in Australia (and around the world) who have prolonged life, and importantly had quality of life, by trying these very largely unrecognised, and not listed on the Australian Government’s Pharmaceutical Benefits Scheme (PBS) free list of treatments for Malignant Mesothelioma.
Aggressive surgeries, likewise have limited success and only benefit a select few, but for those who do benefit from aggressive surgeries and prolong life whilst maintaining quality of life, most would say it has worked. It should be noted there are different surgeries for the different forms of malignant mesothelioma. Read about the various forms of surgeries on the Mesothelioma Treatment – Surgeries page.
I always find it interesting when doctors and others say there is no point in having a treatment because it is not a cure. But if a person responds well to chemotherapy or another treatment and the tumors shrink or are held at bay for a significant period, and the sufferer maintains a quality of life, surely it can be said the treatment has had a positive impact and thus worked. I have known many sufferers who have had treatment, and the handbrake pulled on their journey for many years. Deciding whether or not existing available treatments work, really is a matter of individual perspective.
Clinical trials are often one of the first things asked about, or talked about. Many people, when told Malignant Mesothelioma has no known cure immediately think, that either they or their loved one should, or needs to go on a ‘Clinical Trial‘. I always think it is worth remembering what a ‘Clinical Trial‘ is all about, basically it is a means to assess whether a drug or treatment is going to work, and if so, how well it will work in comparison to existing treatments or drug. Depending what stage trial it is, importantly a trial is used to find out whether a drug is safe to use on humans, what the side effects are and what dosage the drug can be administered, to be either tolerated or give the best results.
Some sufferers feel, as no existing treatment is touted as a cure [even though existing treatment may extend and give quality of life], they might as well try their ‘luck’ from the onset – if any are available. Others will decide to only go on a trial, if and/or once existing treatments either stop working or don’t work from the outset. Getting on an available trial is not as simple as it may sound or seem, there is always quite a long list of exclusion criteria – it is definitely something to talk to your treating specialist about if you are considering trials. Read more about ‘Clinical Trials‘ by clicking [here]
Should a sufferer have treatment at all
Should a person diagnosed with malignant mesothelioma even have treatment if there is no cure? This is a very individual decision, the option of not having treatment is a very viable option and should be openly discussed with not only a treating specialist, social workers, etc. but particularly with a sufferer’s loved one. A lot may depend on how early or late in the mesothelioma journey life cycle a person is diagnosed on whether they will benefit from having treatment or not. Many sufferers are diagnosed by default when being checked out for a totally unrelated complaint. They often have no symptoms of any kind traditionally associated with any form of mesothelioma. Others have obviously lived with the disease for a long time, it has just gone unrecognised. In some cases if a person is very frail, they may not be offered any kind of treatment, as the side effects of the treatment may be worse than the disease itself.
Making decisions about treatments
In my opinion, when it comes to making decisions regarding having, or not having treatments, there is no such thing as making the wrong decision – providing you make a decision by being fully informed and either knowing or feeling you have read and researched everything you possibly can about what you are deciding on. This includes asking your specialist any questions you have – there is no question too dumb. The decisions you make may not always work out, but if they have been made from the right basis, hopefully you will have ‘no regrets‘.
The mesothelioma journey is not just about the sufferer, it is a journey that does impact everyone involved and close to the sufferer. In particular look after, and be mindful of the carer – theirs is a very fear filled and exceptionally lonely journey.
If you are a carer be prepared to seek out and accept every little bit of help and support you can get – do not be a martyr and try to do it alone.
A question often asked is, ‘Are there any special diets?‘ The answer to that is often quite simple – ‘The one that works for the individual!‘ Personally I think it is wise to consult with a dietician, experienced in dealing with cancer sufferers, to talk about individual circumstances – what’s more, I do think it should be done very early on! That being said, I have put together a few dietary tips I gathered along the way.
- Malignant mesothelioma is a ferocious eater of nutrients, when the Asbestos Dragon takes hold, many sufferers start to loose lots of weight, so it is important for a sufferer to keep up intake nutrients.
- Carers often question whether a sufferer should eat red meat as it is thought by some to promote cancerous cells, this may be so, but it is also full of goodness – and as is often said, the sufferer already has cancer.
- Basically it gets down to, within reason, feed a sufferer what he or she likes and can digest okay – if in doubt check with the treating specialist or dietician, particularly if it is not something the sufferer normally eats on a day to day basis.
- One important tip is not to force feed – smaller meals or snacks more often are the order of the day. Big meals will often turn a sufferer right off eating. I even went to the extreme of buying small dinner plates, so my ‘Julie’ didn’t feel embarrassed about eating less.
- Foods such as slow cooker meals, baked fish, stews, etc, that are soft and easy to digest or swallow without taking a lot of energy are always good.
- Soups, vegetable and fruit smoothies, yoghurt and energy drinks also generally go down well.
- Ploughman lunches, tappa plates, biscuits and things that can be slowly picked on are something to keep in mind.
- Another good tip is pizzas cut into smaller portions and finger sandwiches with the crust cut off.
- It is important provide/eat food when required – the old three meals a day might need to go out the window!
- It is not unusual for a sufferer’s taste to change daily (especially with sufferers undergoing chemo), so do not race out and stock up on particular foods – what is liked today may be hated tomorrow! Yes it can be very, very frustrating.
- To help avoid constipation, keep up the liquids!
- Always consult with your specialist treating physician before taking or using any natural remedies, just in case they will work against any treatments you are having, or they may exacerbate your condition.
- Possibly the most important of all, if you are a carer, is not to neglect your own diet. It is easy to fall into the trap of emulating the person you care for, and only pick – remember, if you are not looking after yourself, it is doubtful you will be looking after your loved one either.
- There is much evidence to indicate maintaining fitness levels as much as possible is one of the best things you can do in your fight against the Asbestos Dragon.
- Register for a Disability Parking Permit – it costs nothing and really is invaluable for both the sufferer and the carer. The permit goes with the sufferer, so can be used wherever the sufferer goes. If you are diagnosed with malignant mesothelioma you will usually qualify…….. it is a must do!
- Utilise every material aid you can to help maintain a quality of life and dignity. A simple proper made for purpose adjustable shower stool, would be the first thing on my list. I think it is something every sufferer should have at their disposal – if you are carer reading this, don’t take no for an answer……. it is a must have!
- It is not uncommon for a mesothelioma sufferer to go through sweats. If this happens, rather than change sheets every hour, buy large towels for the sufferer to lie on. This will also help keep the sufferer dry and be more comfortable.
- Take the time to talk about joining your local hospice or palliative care network – read more by clicking [here]
The importance of having no regrets
The value of going through the malignant mesothelioma journey and having ‘no regrets‘ is not quantifiable, but the value is immense and is one of the main reasons it makes it possible to successfully ‘move forward‘ during any journey, or after a journey ends. I have listed some of the main points that I consider contribute to living the journey, and having no regrets.
- If opportunity presents during periods of wellness, do not put off, or delay doing things you want to do – if you are in a position to, make the most of it. Life in itself is generally uncertain, a malignant mesothelioma diagnosis makes it very much even more so – you never know what tomorrow is going to bring.
- One of the main things that causes people to have regrets is living in denial, or being kept in denial, and thus not being prepared for the future.
- Always involve and keep loved ones and those close informed, this includes children or grandchildren. Denying loved ones the chance to be involved in a mesothelioma journey often means they have unanswered questions and ‘if only’ thoughts for the rest of their lives.
- Finally: No one has a mortgage on life, we are all in the process of dying from the moment we are born and come into this world. A person diagnosed with malignant mesothelioma, their loved ones, family and friends have been given the heads up – they can either make the most of the journey or the worst of it…….
Read an expanded version and more on living your journey without regret by clicking [here]
What happens if treatment stops?
What happens if treatments stop working or don’t work from the onset, or a sufferer either elects to have no treatment, or is deemed unsuitable for treatment? Inevitably, there becomes a time in a sufferer’s journey surviving with mesothelioma, when the illness prevails and treatments stop working.
Remember my analogy of treatment being like pushing a car up a hill? I always refer to the time when there are no longer viable treatment options as when the sufferer reaches the top of the hill, or the mountain as the case may be. The fact is when he or she reaches the top, they are never quick enough to pull the hand brake on, the unknown factor is whether a sufferer will plunge over the top of a cliff face or slowly coast down the other side. This is very much an unknown factor, as are most things involved with the mesothelioma journey.
It is very evident a lot has to do with the individual, and which type of mesothelioma a sufferer has, and whether it has progressed (metastasized) into other areas. Another factor often overlooked is the presence of underlying conditions, this can, and often does have a major bearing on final timelines. Over the years, I have noticed Pleural Mesothelioma sufferers tend to plunge over the edge rather than slowly slide away, whereas often Peritoneal Mesothelioma sufferers will slowly, literally fade away – but there are no givens whatsoever! Unfortunately this really is the time when you will never know what tomorrow will bring, let alone next week or next year!
Things can change really quickly
The hardest thing is preparing carers and other loved ones for how quickly the tide can turn. Not many people can fully appreciate when the top of the mythical hill or mountain, is reached, how quickly circumstances can, and often do change – it is one of the many times during a mesothelioma journey, I wish there was a crystal ball available. I guess I can only stress to you, please don’t underestimate how individual circumstances can change literally at the drop of a hat! This is very much, really the time when all loved ones, family and friends should be kept informed. Not being kept informed, and having an opportunity to tell someone how much you love them, is in my experience the main reason loved ones in particular have regrets.
The difference between ‘moving on’ and ‘moving forward’
Many people with a terminal illness, or those bereaved, do not appreciate the difference between ‘moving on‘ and ‘moving forward‘. The differences are quite pronounced:
- ‘Moving on‘ is what you do if you leave a job or get divorced – you move away from that period of your life and commence a new life – in many cases without wanting to, or looking back.
- ‘Moving forward‘ is very a much something a bereaved person does, and I believe should do. It is not unusual for sufferers to be resentful or fearful at the thought of their loved one ‘moving on‘ with a perceived vision of being forgotten or replaced. Many people who have lost a loved one are told by family and friends, or other well meaning people, that they should ‘move on‘. Likewise ‘moving on‘ is something many of us who have been bereaved, are reluctant to do, and wont do – yet are burdened with feeling we should! ‘Moving forward‘ is very different, it is where you get on with life but never really move away, or on from the memory of your loved one or of your life together. To successfully ‘move forward‘ you need to give yourself permission to ‘move forward’, without feeling the need to necessarily ‘move on‘. ‘Moving forward‘ gives you the ability to continue on in life with your loved one forever being a significant part of your life – even if you start another relationship or remarry. There is never a day in my life where my ‘Julie‘ isn’t thought about or mentioned, likewise there isn’t a day where both Karen Banton’s late husbands ‘Doug‘ and ‘Bernie‘ aren’t thought about or spoken off. BTW: I have been blessed to have been able to ‘move forward’ …….. in case you didn’t know, I am exceeding blessed to be married to Karen Banton-Smith!
I hope you have found the information within this page of help, however, please don’t rely on it – please ensure you contact qualified medical, care and legal professionals to advise and help you get through what is without a doubt one of the most difficult journeys! Please also take the time to read the Support & Care section.