MANAGING LEUKAEMIA€¦ · thing exists. This also shouldn’t be read as the ‘right’ way to deal with having leukaemia (or any blood cancer). Because while many of the experiences

MANAGING LEUKAEMIAA PATIENT’S PERSPECTIVE…

Version 1, 2019 - Managing Leukaemia©Copyright / 2 Version 1, 2019 - Managing Leukaemia©Copyright / 3

1 Introduction 4

2 How I have dealt with it… 6

3 Getting Organised 10

4 Welcome to Hospital 19

5 The Treatment 22

6 Going Home 25

7 Returning to Part-time Work 29

8 Will it come back? 31

9 Family and Friends 33

10 Preparing Wills 36

11 Claiming Insurance 38

12 Conclusion 42

As a haematologist who cares for people with leukaemia – what advice could I give the prospective reader about Managing Leukaemia: A Patient’s Perspective?

First, this shouldn’t be read as the definitive account of a leukaemia – as no such thing exists. This also shouldn’t be read as the ‘right’ way to deal with having leukaemia (or any blood cancer). Because while many of the experiences described here are ones that everyone with leukaemia will recognise and share - people are different, their circumstances are different and the ways that they cope with all of the challenges that leukaemia and its treatment bring also differ.

But none of this diminishes the value of Managing Leukaemia in any way. For what it provides is a rich and very personal story of how one person coped after being told – ‘You have leukaemia.’ This, in itself, is a reason to read this book, because while doctors, and nurses and allied health professionals may have cared for many people with leukaemia – they have not have been through it themselves. And it is precisely for this reason that stories like that told by Hugh are valuable – because they provide something that medicine cannot describe - a personal account (an ‘autobiography’ or ‘narrative’) of the impact of serious illness on a person’s life, family, work, friendships, hopes and dreams. For as Managing Leukaemia makes very clear, leukaemia has a profound and pervasive impact upon almost every facet of life. It is tough, and arduous, and complex, and sometimes difficult to understand, and deeply unfair. But it is also possible to get through.

This is the other reason why you should read Managing Leukaemia. For, while it provides a moving account of one person’s experience of leukaemia, it offers much more than this. It is also a ‘manual’ or ‘guide’ – providing information that doctors and nurses often don’t talk about and practical tips that may help along the way. What questions to ask. How to have some control over what is happening. Why being organised can help. How to navigate the transition between being an inpatient and outpatient, and between being sick and well. How to talk with friends and family. How to cope with anxiety, disappointment and uncertainty. And how to retain and discover meaning and happiness even in the face of leukaemia.

So pick up Managing Leukaemia – and start to read – and see how it helps.

Professor Ian KerridgeHaematology Department / Royal North Shore Hospital

Table Of Contents

Message From Ian


Introduction

If you have recently been diagnosed with Leukaemia, I am writing this for you.

My goal is to share my experience as a Leukaemia patient by attempting to explain how I managed the process and give you some practical tips which I have used to get through it.

I hope you will find it helpful.

1

Having provided care to those who have received a Bone Marrow Transplant (BMT) for more than 15 years, we appreciate the value and comfort that many people receive in hearing other patient’s stories and experiences of living through and life after a transplant. The power of these shared experiences cannot be underestimated.

Hugh reflects on many aspects of living through treatment for leukaemia, followed by a transplant and what his life has been since. He emphasises that his journey is unique and his own, and he does not suggest that all of what is included will be meaningful or helpful to everyone.

We acknowledge that each of you are unique, and your recovery and experiences following a transplant varies widely. Hugh reflects on many aspects of living through and life after his transplant, generously sharing his insights and practical tips that have helped him along the way, in the hope that others may find something valuable to help them along their journey.

On behalf of the BMT team at Royal North Shore Hospital we owe a huge debt of gratitude to Hugh Williams for spending his valuable time and effort in writing this booklet.

We have no doubt that this personal experience will become a useful resource to supplement the more formalised information that is provided to you. It is hoped that this guide will assist you in making the way forward a little clearer and easier for you.

Cassandra ReidClinical Nurse Consultant – Bone Marrow Transplantation

Julija SipaviciusNurse Practitioner – Bone Marrow TransplantationRoyal North Shore Hospital

Message From Cassandra & Julija


So Many Questions...

Being told that I had a form of cancer is very confronting. It immediately raised many questions for me….

How I Have Dealt With It…

2

I am sure you will agree that being diagnosed with leukaemia is a nasty surprise. Something that we would never have foreseen!

But it is what it is, and we must simply deal with it the best we can. Acceptance is so important. We now have a new reality to adjust to. There is no going back; what was yesterday is yesterday; today, tomorrow and the day after that are all that matter! While it is a great way to lose weight and save money with our hairdresser, it’s not an easy road to travel.

When I was diagnosed, my immediate thought was the next 12 months would be a lot of specialised hospital and medical treatment, the details of which I had no idea. It gave me confidence to know that we live in a great country with excellent doctors, hospitals and health system. This thought helped me to be optimistic about my situation and still does!

I hope that your experience is similar.

» What exactly is leukaemia?

» How serious is my leukaemia?

» Can it be cured?

» What will the treatment be?

» Will the treatment work?

» How long will it take?

» Will it be painful?

» Will I survive?

» How long will I live?

» How will I manage?

» What will my family do?

» How much will it cost?

» How will we manage financially?


1. Hospital admission for tests and chemotherapy treatment to get into remission.

2. Going home with chemotherapy medication, combined with frequent visits to hospital for blood tests, medical treatment and appointments to monitor my progress and keep me in remission.

3. Admitted for more hospital chemotherapy which can’t be taken at home.

4. Back home again then back into hospital for my first transplant with my own stem cells.

5. Home again to recover with more chemotherapy, blood tests and hospital outpatient treatment.

6. Back to hospital for chemotherapy, Total Body Irradiation and my second transplant with my brother’s stem cells.

7. Home again waiting for my brother’s stem cells to grow. More chemotherapy at home, blood tests and hospital outpatient treatment.

8. Unscheduled visit to emergency with a bacterial infection and then back home again with more chemotherapy, blood tests and outpatient treatment.

9. Less frequent visits to hospital, managing graft-versus-host issues and returning to part-time work.

10. Going forward, hopefully with ongoing improvement and enjoying life, as much as I can!

Each of us is prescribed different treatment protocols according to our specific needs and circumstances. I find the science and skills of our haematologists truly remarkable in being able do this! To give you an idea, the road map for my many phases of treatment have been:

PATIENTS BEING PATIENT

Like me, you will soon become an expert at waiting. There are lots of appointments, procedures, treatments and recovery time to fill in the hours. Time to think, reflect and entertain ourselves.

We need to be very patient and understanding when appointments are delayed or even cancelled. Becoming annoyed with the hospital staff will not be helpful to anyone, including ourselves, and may actually work against us.

My observation is that doctors, nurses and hospital staff are very dedicated and are doing their very best. I have yet to find an exception to this. In the same breath, I have also observed that almost all leukaemia patients are very respectful and courteous, and very grateful for the professional care we are being given to treat our condition.

There is no point in feeling sorry for ourselves. What’s the point? It doesn’t change anything.

For me, being positive can only help our bodies and minds to do their part in getting us through the treatment and into remission.

Why us? What did I do? Well there is no answer to that. No-one really knows. If they did, we would all be doing something to prevent us contracting leukaemia in the first place. We can’t turn the clock back so dwelling on it seems futile.

If we are fortunate enough to go into remission, we then ask what we can do to avoid it coming back. The only answer I have is to do what we are told, take the medications, exercise, relax, be mindful and make the most of every moment!

Our haematologists are very skilled and resourceful, working together as a team, writing a recipe for each of us. I found the medical science to be simply amazing!!

I never searched the internet for more information. Why? I have always felt that my haematologist, doctor and the specialists within the hospital will always be my best and most trusted source of information. I don’t have a medical background and I am in no position to decide whether an internet article is accurate or even relevant to my situation.

Treatment is very complex and goes through many phases. My advice is to focus on one step at time. This is really important to me. One of my favourite sayings is you climb Mount Everest by climbing the foothills. After a climbing a while, when we look around to take a rest and admire the view, we will suddenly find we are already halfway towards the top! This is how it is with our treatment and the many steps we need to take.

We are given a road map. The first and most important game in town is to get into remission. Once we get there, we then want to stay in remission! Both require a multitude of tests and treatments. It is not always a straight road, sometimes we have to go backwards or sideways before we can move forward again.

I came out of remission midway through my treatment. While it was clearly disappointing, I tried not to dwell on it. Instead I focused on the next phase of my treatment. What do we do about it? What are the options? What’s next?

One Step At A Time…

Why Me? Why Us?


Get Organised3

As you are learning for yourself, treatment is a long winding road and can be very complex.

When you are in hospital, everything is done for you. We are given our medications, our blood tests are done every morning and we are provided with the results.

We are taken from the ward on beds or wheel chairs to have any number of tests done, and we can ask the nurses, doctors and our haematologist to explain our treatment and progress.

When you leave the hospital as an out-patient you need to get organised!

While I was pleased to go home, I admit to feeling apprehensive about leaving the hospital and its wonderful team of doctors and nurses.

I realised from the outset that there was a lot to keep on top of and manage. I found that there were three things I needed to organise from the outset:

1. A hospital carry bag

2. A diary/calendar system

3. A folder

The first thing I bought was a hospital carry bag to take to and from the hospital. It keeps everything in one place and it stops me forgetting to bring things I need to have with me at the hospital and also at my appointments with specialists, medical tests and my General Practitioner.

This includes:

1. My folder with all of my scripts and paperwork.

2. A number of face masks

3. Pens and paper for notes

4. A pair of reading glasses

5. A book and some reading material

6. Something to eat and drink

7. A hat and suncream if I want to venture outside between treatments and appointments


Diary Set Up

It is important to setup a diary. There are many appointments to make, keep track of and attend. These can frequently change. I have done this with the calendar on my phone which is synchronised with my computer calendar software. If this is not you, I suggest that you purchase a weekly diary and a pencil (and eraser) to take with you whenever you visit the hospital.

I also purchased a folder with index pages to manage all of the paperwork! As time went on it filled up and I needed to replace this with a larger folder. So if you want to do the same, I suggest that you start with a large A4 folder.

I showed my folder to another patient and his wife in the early days of my treatment and explained that I found it to be a great help. I met them again recently and they asked whether they could copy my table of contents to help them put together a similar folder of their own.

My folder sections are listed below and I will explain what I have put into each one and why.

1. Haematologist

2. General Practitioner

3. Medication Chart

4. Pharmacy Scripts

5. Blood Test Requests

6. Blood Test Results

7. Other Medical Tests and Appointments

8. Treatment Information

9. Discharge Information

10. Emergency Admission Forms

11. Insurance

12. Clinical Trial

There is nothing more annoying than getting home from my appointment with my haematologist and realising I had forgotten to ask him something.

This is especially frustrating if I need more scripts for my medications and blood tests to last me until I have my next appointment with him.

I now prepare my notes to discuss with him and these can typically cover the following topics:

» A copy of my list of tablets and dosages

» Scripts for blood tests and medication

» Notes about my condition and how I am feeling

» My return to work status

» Vaccination update

» Copies of any medical tests and appointments I have had done

» My questions relating to my treatment program

I now see my doctor every month to six weeks to keep him updated with my condition and treatment program.

All of the information I keep in my folder helps him to accurately update my file on his computer during each visit. He also checks my skin to remove anything that could become cancerous as some of our treatment can increase the risk of this happening.

My doctor also organises my vaccinations following my bone marrow transplant as instructed by my haematologist.

My list of topics to discuss with him are:

» Any questions I have in relation to my treatment

» Vaccinations I need to have done

» Skin checks

» Any health concerns which are not directly related to my leukaemia treatment.

Haematologist

General Practitioner


MEDICATION CHART – UPDATED: DD/MM/YY

MEDICATION DOSAGE TABLET SUPPLY & SCRIPTS

Days Breakfast Dinner Tablets left

Tablets Per Week

Weeks Left

Remaining Scripts

MEDICATION WWW Daily 50mg 50mg 100 14/week 7 2 repeats

MEDICATION XXX Daily 100mg 50mg 90 21/week 4 2 repeats

MEDICATION YYY Daily 500mg - 50 7/week 7 1 repeat

MEDICATION ZZZ Mon/Thurs 960mg 960mg 25 4/week 6 0 repeats

VITAMIN XYZ Daily 500mg - 140 7/week 10 Not required

CREAM XYZ Daily Apply Apply - - - Not required

Etc...

BLOOD TESTS 3 repeats

As I mentioned earlier, as a patient in the hospital ward, all of our medications are organised by the nurses. Some in the morning, others at night and also at various times during the day. When we go home, this becomes our responsibility.

When we are discharged from hospital, we are given a “starter-pack” of tablets (and sometimes injections) to take home with a handout explaining the dosage and purpose of each medication.

We have a lot to organise, as we need to:

1. Know what tablets or injections we need to take, how many, when to take them and whether before or after meals.

2. Ensure we do not run out.

To help with all of this, I have prepared the following table.

I have found that this table is very helpful, in that:

1. I take the correct medication.2. I don’t run out of tablets and scripts3. I can give this to the doctors and specialists when they ask what I am taking.

Medications

In this section I keep the pharmacy scripts and receipts. I simply have them two-holed punched and clipped into the folder.

There are two types of pharmacy purchases.

1. The hospital pharmacy dispenses a range of medications which are subsidised by Medicare.

2. All non-subsidised medications must be purchased from pharmacies which are not run by the hospitals. I purchase most of these items from the independent pharmacy located within the hospital as they stock most of the items I need and are familiar with the requirements of Leukaemia patients.

As we are given many scripts and some have multiple items on the one script, it is important to keep track of how many repeats are remaining after each purchase. I find it to be very helpful to have them all in one place. When I am confused with the status of the script repeats, I simply pull them all out and go through them with the pharmacist to find out which ones need to be renewed.

Each month, I update my script repeats listed on my medication chart to ensure I have these renewed when I discuss this with my haematologist.

I have often been asked by the doctors, specialists and sometimes nurses, to explain my current medication protocol. This is extremely important when specialists (such as a cardiologist) are prescribing additional medication for a new condition that requires treatment, as they want to be sure that it will be compatible with what else we are taking.

I simply give them my Medication Chart and it updates them straight away. It automatically provides them with the correct name and dosage of each medication, which can be complex and difficult to remember. It is also useful to keep the outdated Medication Charts in the folder to provide them with our medication history as we can be asked “for how long”, “how often” and “how much” of a specific medication we have been taking.

At home, I have a large box for all of my tablets. This is my “storage unit”. I prepare my medications every week using two sets of 7-day tablet portion control dispensers which I purchased from the pharmacy. One set of 7 days is for mornings and the second set in a different colour is for evenings. This helps me to take the correct combination of tablets for each day of the week. I keep the dispensers near our kitchen bench to remind me to take them. Make sure they are kept in a safe place and out of reach from children. Very useful.

Pharmacy Scripts


Blood Test Requests

Other Medical Tests and Appointments

We are always asked to complete blood tests before we visit our haematologist as this gives him or her very important information relating to how our treatment is progressing.

Therefore we need to ensure that we do not run out of the blood test requests which we give to the Pathologists. Most of these are provided to us with repeats.

I keep them together in this section of the folder so it is easy to keep track of them and provide them to the pathologists on each visit.

I include the status of my Blood Test Requests in my list of items to discuss with my haematologist.

Blood Test Results

When possible, I like to ask for a copy of my blood test results to put into the folder.

I like to track how the key indices change over time. This helps me to monitor my own progress and give to my doctor and/or other specialists when asked.

Throughout our treatment program, we are often referred to specialists to complete further tests which monitor how our health is being impacted. In my case it has included the following:

We are given the list and the phone numbers we need to call to make the appointments. This takes a little planning to try and group the appointments on the same day. The earlier this is done the better as there can be long waiting times and our preferred appointment times may not be available. Some of these tests, reviews and assessments are repeated to compare the results over a period of time.

My general practitioner has asked me to request that the test results are also sent to him so he can monitor my progress and update my file. The haematologist or requesting doctor will always be sent the results.

I have filed the test results that are given to me on the day in this section of the folder with the referrals.

» Bone Mineral Density » Cardiac Assessment » Dental Review » Dermatology Review (skin) » Lung Function Test

» Endocrine Review (hormones and glands)

» Nutritional Review » Ophthalmology Review (eyes) » Psychosocial Review

We are given comprehensive handouts explaining our treatment protocols prior to starting each phase. When I was first admitted to hospital my “Initial Treatment Protocol” explained:

» What the treatment protocol was called » The drugs that were to be used in the protocol » How and when they are to be given » Their purpose and side effects. » How they could make us feel. » Answers to a number of frequently asked questions. » A daily plan outlining what is expected to occur while I was in the hospital.

My treatment included Autologous and Allogeneic Haemopoietic stem cell transplants and was provided with handouts explaining each one. The autologous transplant used my own stem cells while the allogeneic transplant uses a donor’s stem cells. In my case, I was very fortunate in being able to use my brother’s cells.

These are excellent handouts and explain most of what you need to know including:

» An explanation of the blood and how it is produced in the bone marrow » What a transplant is, how it works and why it is given to leukaemia patients » How to prepare » The expected outcomes and side effects » What will happen while we are in hospital and what we should do to help » The medications and treatments we will be given during the transplant period » The risk of infections, how to avoid them and what to do if we have one » Discharge medications and what we need to do at home

Treatment Information

The discharge handouts summarise our hospital treatment, tests and outcomes. Most importantly, we are given a list of discharge medications which we need to organise, purchase and take at home. This explains:

» The medication » Dosage » When and how to take each one

Discharge Information


Clinical Trial

Also included is a discharge plan which tells us what happens next and what we need to do over the coming weeks.

I have kept all of these handouts in the folder. This makes it easier for me to explain to my General Practitioner and the specialists who are conducting and analysing the numerous medical tests listed above. I also occasionally read through them to check on specific drugs and understand what they do and the side effects that can arise through their use.

When we have had chemotherapy our immune system is compromised and we can very easily catch an infection. When we do, this can be very serious and we can become dangerously ill very quickly, needing urgent medical care.

We are given a special form to give to the hospital Emergency Department if we develop a fever or high temperature. I keep these forms in this section of the folder so I know where they are should I need them.

During my treatment, I did get a bacterial infection and I can assert that we become seriously sick very quickly. I was in the hospital at the time and found myself in Emergency within minutes.

Emergency Admission Forms

I have been fortunate to have an insurance policy to cover chronic illnesses which include Leukaemia.

I keep any medical-related requests and correspondence from my insurer in this section of my folder. This includes any forms I need to give to my haematologist to complete to update my insurer on my condition and progress.

I am also participating in a Clinical Trial which is examining the benefits of exercise and mindfulness while in remission. I am a strong advocate of both.

The handouts and correspondence relating to this trial are kept in this section of my folder.

Insurance

Welcome To Hospital

4

Until I was diagnosed with Leukaemia I spent very little time in hospital.

I had seen the new Royal North Shore Public Hospital from the distance and often wondered what it was like inside. Little did I know that I was about to find out…

After being diagnosed, I was very keen to be admitted into hospital and get my treatment started as soon as possible! Since then the hospital has become my second home.

Great service, fantastic staff, hospitality and medical technology. Simply amazing, rating ten out of ten! Not so sure about the food though…definitely not a-la-carte and a great incentive to not overstay our welcome!


As you may already know, the Leukaemia ward is very special.

When we receive treatment, our immune system goes on a holiday and leaves us vulnerable. Our haematologists have ensured that the ward has been designed with strict controls to prevent infection which include a filtered air conditioning system. Most of us will have our own room, but this can change as it did in my case, when the single rooms are required by patients who are in greater need.

Each time I came into hospital I became better organised.

You really don’t know what you can eat until the treatment starts. I found simple, natural, unprocessed food to be the best. I initially was far too ambitious as to what I thought I could eat. I was determined to eat something nutritious. During my most recent visit to hospital my breakfast, lunch and dinner menu featured porridge, boiled eggs and freshly squeezed carrot juice brought in by my very concerned and supportive wife. I must admit to not having much of any of these items since…

It can get boring in hospital. In fact, I will correct that, it does get boring in hospital. I was marking off the days on the white board. I remember looking out the window and reflecting how lucky the mailman was as he climbed into his postal van!

While great to have, I could not watch much television. I read and played games and crosswords with my visitors. I also brought in music on my last visit, a great move! If there is a next time, I will bring in a radio as I enjoy listening to different programs. Anything to pass the time!!

My haematologist was on my case from the very beginning: “I don’t want you staying in bed! Get dressed, sit-up and go for walks around the ward”. This might sound simple and can be a real effort, but well worth it!

I did laps of the ward three times a day. I named my little intravenous stand which comes with four wheels, “Sid”. Sid would always come with me on my walks. He was quite attached to me! One of the nurses took pity on Sid during one of my stays and traded him in for another which had much better wheels. We also went outside when I was permitted to do so. It was great to enjoy the fresh air, even with my face mask on! I did not care what people thought!

It can be noisy in hospital and we get woken up early and through the night for medications. I tried to go to bed early to get enough sleep as I stayed out of bed during the day.

What To Bring

What To Do

I remember having an ear operation years ago and making the comment to the nurse as I was being wheeled into the operating theatre that “this feels like a factory!” She replied with a smile, “Well, I hope it is a good one!” I agreed.

We are extremely fortunate to live in Australia and have such wonderful hospitals, haematologists, doctors, nurses and hospital staff. Medicare is also an unbelievable financial support for our treatment costs. This gives us hope and the reason to be confident that we are giving ourselves the best possible chance!

Also encouraging to know is that our haematologists work together as a team. They discuss our cases with their hospital colleagues each week and refer difficult cases to their peers in other hospitals. How very fortunate we are to have all of this specialised knowledge and care to help each of us!

How Lucky We Are


The Treatment5

We are fortunate to have so many books and publications explaining our treatment.

At the outset, I read through much of this informative material with my family, but it wasn’t until I started discussing it with the doctors and nurses who were treating me that I really started to fully understand it all.

What we can manage changes day by day and each of us has different treatment protocols and needs.

Powerline Device

Shortly after my treatment started, I was provided with a powerline which is a “central venous access device”. It is a great way for us to receive our intravenous drip medication as the nurses can simply connect the drips to this device instead of having to setup and use a cannula each time. You may already have one.

It was under my shirt and I hardly noticed wearing it.

When I was discharged as an outpatient I returned to the hospital each week to have my powerline flushed and dressed to prevent it from becoming a source of infection. I tried to keep it dry when I had a shower and I did not go swimming while I was wearing it either.

Despite this, somehow my Powerline did become infected and I ended up in emergency and intensive care to have a bacteria called “Elizabeth Something” removed (I was amused by the name).

This can always happen, and with that experience, I must encourage you to keep your Powerline as clean and as dry as you can and have it dressed by the nurses each week to minimise the risk of it carrying a bacterial infection.

Bone Marrow Biopsy

As you may have already discovered, this particular test is not a holiday.

I don’t like to spend too much time thinking about it. I think I have had four of them so far.

I concluded that they were very necessary and had to happen. Worrying about them and getting stressed was simply not going to help. In fact, it might make things worse for the specialist nurse and doctor who are carrying out the procedure.

I decided that the best thing to do is to simply relax.

This worked well and my advice is that you should try to do the same. It’s all over in a few split seconds. Job done until next time.


Going Home

6

It’s always good to get home!

Definitely more comfortable and much quieter. The food is better at home…

We don’t have a big house, but it felt very small after spending time in hospital. Quite a strange feeling.

Transplants

If you are using your own stem cells in the transplant, you will need to take some injections to stimulate your bone marrow to make additional stem cells. This can hurt a little. It affected me for one day and it felt like I had put my back out. The pain soon passed.

The actual transplant procedure is painless. Blood goes out one arm, into a “spin drier” where the stem cells are separated by weight and collected into a little plastic bag. The rest of the blood goes back into the other arm. I can’t say the same for the chemotherapy, however. The transplant medication can be quite severe and does cause quite a bit of chaos and discomfort. It affects us all differently.

Having a distraction is helpful. Something to listen to or read is useful. You may find television a better option. It is really important to be positive and be kind to yourself. It is a very tough couple of weeks.

However, if this is what it takes to get us into remission, it is well worth it.

The days seemed to go slowly while waiting for the graft to work. I crossed them off on the white board. But they do eventually pass. At the time, my focus was “bring on October”! This was when we were hoping my new stem cells would have sorted themselves out in their new home. Me!


New Routine

Treatment and Medications

When I returned home, we had to create a totally new routine.

Before contracting Leukaemia, I would leave early and return home around 7pm each weekday. No more of that for a while, if ever. Weekends also changed as I was much more limited in what I could do.

Responsibilities change. Simple things such as shopping, cleaning, cooking, gardening, maintenance, feeding the worms, putting the garbage out and paying bills need to be reorganised.

Over time, I have become stronger and less vulnerable to infection. Consequently I can do more to help which makes it easier for the whole household.

As I explained in the previous section, we need to organise all of our medications. My two sets of tablet portion control dispensers became my portion control. We have a special box in the kitchen which looks less unsightly than my initial medication basket with all of the boxes and bottles.

Hospital visits and blood tests need to be organised and take a lot of time. Obviously it is best to try to organise as many as possible on the same day. I put all of my appointments into my phone and computer calendar. These become less frequent over time. I was initially going to the hospital at least twice a week and now it is once a month unless I have to see a specialist.

Food

What to eat became the next challenge.

When I arrived home, my wife and I tried to progressively expand the menu as much as we could. Our medication can make us feel nauseous. My wife has been wonderful. She is the quality (and quantity) control department in our household.

I psyched myself into what I expected each item to taste like. If it didn’t, I found myself in trouble and had to try something else. It was a good strategy. As I explained to my dear wife, simple is best. If it looks like chicken or a banana, it really must taste like chicken or a banana and not a variation with lots of herbs and condiments.

This approach really worked well and I encourage you to try it.

Infections

Coping With Fatigue

It is not only our health we have to focus on, but also the health of our family and friends come into focus. When we first go home we are very vulnerable to viruses and infections of any sort.

As you will be told when you are discharged from hospital, we need to avoid contact with other people who have any illness, especially colds and flus. Our immune systems cannot protect us and if we get a temperature we need to go straight to hospital without delay. Viruses and bacteria can become serious and life-threatening very quickly.

Our immune system is equivalent to that of a baby! I ended up catching a baby cold with my baby immune system and it took me weeks to get rid of it! As our blood is starting all over again we need to have all the immunisations we received as children. I am almost through these now with only the 24 month boosters to go. It’s a big shame that the rest of our bodies are not being refreshed too; wouldn’t that be great!

As I mentioned earlier, my powerline became infected with bacteria which was discovered while I was having it flushed and dressed during my weekly visit to the hospital. I was quickly admitted to Emergency for a couple of hours before being transferred to Intensive Care for further treatment and then going back to revisit the many doctors and nurses I knew in the Ward.

Meanwhile, in the car park, my car had a very lonely and unexpected four day wait instead of its normal 4-6 hours visit. I was very pleased to be able to take it home at the end of our stay.

I have discovered that all of my treatment causes me to tire more than I used to. I can imagine that you will have a similar experience. In my current phase of treatment, recovery and remission, I have “Graft versus Host Disease” (GVH).

I explain this to my friends and family as my brother’s blood trying to work out where it is and my body trying to work out who has turned up! This arrangement is complex, but very beneficial. As my haematologist explains, if my brother’s blood is unhappy, not only will it be causing havoc with my body, but it will also be even more upset should it meet any uninvited and very unwelcome Leukaemia cells.

This ongoing internal battle makes me feel tired and I need to rest. It mostly affects me in the afternoons and evenings. I approach this on the basis of what I can do, rather than what I can’t do, seeing how I actually feel each day rather than how I might feel.


Back On The Road Again

Exercising And Keeping Mentally And Physically Fit

When we are discharged from hospital after receiving treatment, we are not allowed to drive.

However, all is not lost! The Leukaemia Foundation has teams of rostered volunteer drivers who can take us to and from the hospital in cars generously supplied by sponsoring companies.

All you need to do is call and make a booking with the helpful coordinators. They will confirm the booking and let you know the pick-up time for our appointments. It is a free service... how fantastic is that!

The Leukaemia Foundation’s service is not available on the weekends or late in the afternoons as the drivers need to return the cars to the depot. At these times we need to rely upon family, friends and taxis for transport.

I can now drive myself, but I really appreciated the Foundation’s generous help when I came out of hospital. The Leukaemia Foundation are wonderful people, very understanding and giving with their time!

The fitter we are, the better the treatment options. I have observed that the first thing the haematologists do is to have tests done to see how fit and healthy we are so they know which medications and treatments we can cope with.

Mental and physical fitness improves our chances of success. Keeping fit and regaining our strength is very important to our recovery, sense of well-being and future treatment, should we need it.

Returning to Part-time Work

7

Going back to work is not just about the money.

It is also about helping to keep a positive mental attitude, routine and outlook on life. Unless you are already retired, I have found that returning to part-time work has been very beneficial, both mentally and financially.

I have continued to work as much as I can throughout the whole period. As I am self-employed, I have needed to keep in contact with as many of my clients as much as possible.

They have been extremely supportive and understanding. Exceptionally so. But it is also important that I continue to be interested in what they are doing and to provide them with support, even if this is in a minor way.

I cope with fatigue by accepting it as the status quo, taking rest when I need it, and planning my activities for the mornings as much as possible. My preference is to get-up early to exercise before breakfast, complete my work through the day, rest in the late afternoon and go to bed early at night. This routine seems to work.


Finding The Balance

For those of us who have been working, trying to work part-time helps to transition back to a more “normal life”, although with a much reduced intensity. This is not bad for me as I may have been overdoing things.

At the same time it is important not to compromise our health. We need to find a new balance which changes over time. I find I tire easily and this needs to be given the respect my body and treatment deserves. As a result, I start work later and finish earlier, working half days instead of full days.

Will It Come Back?

8

I am a great believer in enjoying a glass half full rather than worrying about a glass half empty. We all know that there is a risk that our leukaemia may return, but there is also the possibility that it will not!

I have given this quite a bit of thought and it is far too easy to start worrying about something that may not even happen.

This negativity can potentially stop us enjoying each day and it can also cloud how we see our future. As a result, I have stepped back and made the following mental commitment to myself.

My glass half full approach has enabled me to confront any worrying negativity which might arise from time to time. It allows me to focus on living and enjoying my new lifestyle and believe that this is what will take me into my future years.

If this does not eventuate, so be it. I will deal with that then, rather than worry about it now.


Before I was diagnosed with leukaemia, my expectation was that I would live into my 80’s.

Now that I am in remission, while acknowledging that my body has been compromised, I hold the view that I will still live into my 80’s.

When a negative or worrying thought enters my mind, I visualise and concentrate on the number “80” and use this technique to block it. I find this to be a very simple and effective tool which works well for me. It’s a strong number and easy to picture. You might be more ambitious and decide on “90”!! If so, go for it, why not?

Project managing my health has now become a very new and important focus and undertaking for me. As my appointed “Project Manager” I have defined a new role in my life which has clear direction and purpose. This responsibility provides me with greater mental strength, sense of control, resolve and the confidence to succeed. I encourage you to do the same as much as you can.

I know that I will now always need to give more time and effort into caring for my health, exercising, resting and looking after my immune system, not letting myself get run-down. Being responsible for project managing my health and making this important addition to my lifestyle is the very best thing I can do to ensure that I will in fact live a long healthy life! It makes the prospect of living into my 80’s much more credible!

How we communicate with our family and friends and appreciate their love and support needs careful thought, empathy and understanding. This is at a time when we are still trying to sort out our own feelings on the matter.

It is important to really think how the news of our leukaemia will be received by them. How could it potentially impact upon their lives and what would be their main worries and concerns?

It’s not just about us!

I am very fortunate in having a wife and teenage son, family and friends. My mother, sisters and brother all live in the country and my wife’s family live in Germany. Our friends live locally, interstate and overseas.

Telling family and closest friends that we have leukaemia is a delicate process. In many ways, we are in the driver’s seat. If we are very upset, it will be very difficult for those who love us the most, not to be upset too. Just like us, they want reassurance that we will be all right and they also want to know what the treatment will be and how long it will take.

What will be our chances?

These are important questions.

Family & Friends9


Family

As I mentioned earlier, for whatever reason, I did not get upset myself. I immediately realised that I would have at least twelve months of treatment. I had no idea what that would be and whether it would be successful.

No point in getting upset, the best thing to do was to find out as much as I could and simply get started. I think this practical approach also helped my family and especially my wife, son and mother.

Friends And Texting

I have Leukaemia to thank for really introducing me to the world of texting!

I have never in my life received or sent as many texts! My big clumsy fingers had to find a way to navigate my mobile key pad.

I always responded to texts from friends and I deliberately tried to keep as much focus on what they were doing in their lives as much as giving them my latest updates and trying to explain what a bone-marrow transplant was and how it worked.

Some friends visited me in hospital but I tended to limit this as much as possible, especially during my transplants. But I always appreciated their concern and the effort they made to visit me.

Close friends all offered to help. I did ask them to assist with driving me to and from the hospital from time to time. That was during the period when I was not allowed to drive and I could not organise transport with the Leukaemia Foundation.

My family and I have been keen not to broadcast my condition. It is only now that I might tell people I don’t know so well, that I have had Leukaemia in the knowledge that while it could return, I am trying to live a normal lifestyle as much as possible.

Now that I am in remission, I rarely discuss my condition unless I am asked by someone who is genuinely interested.

My wife was obviously very upset when I received the news that I had contracted leukaemia. She came with me to my appointment with the haematologist after I had already met with my General Practitioner who was the first to tell me. My haematologist confirmed the diagnosis, explained I would need to be admitted into hospital and thought that my condition was curable.

My teenage son had two questions. “Dad, will you be all right?” and “what will happen to my schooling?” I was able to tell him that the specialist doctor said my condition is “curable”. This is different from “we can cure you”. I also explained that my insurance will protect our income and his schooling. This is the reassurance he needed. We told very few families and friends at his school as my wife and I felt that this should be entirely his decision. We met with the school principal and form teachers who also helped us to keep the knowledge of my condition within a closed circle. My son did not want others to feel sorry for him and my wife and I were keen that he should continue attending school as normally as possible.

As a parent, I quickly realised that my mother would be extremely concerned. She came to Sydney and I encouraged her to visit me in hospital as frequently as she wanted. This provided her with what she needed, which was to know what was happening and to see how I was progressing.

My sisters and brothers were also anxious to know what was happening. One sister came to Sydney too and visited me in hospital with my mother. She kept everyone else in the family updated.

My brother was also a very important visitor. I now have him to thank for my new stem cells! I joked with him that should I suddenly get red curly hair, I would need to have a chat…. Some transplant patients finish their treatment with totally different hair! I understand that one lady came in as a blond and no one recognised her when she returned with a forest of curly brunette hair!

My wife’s overseas family was also concerned. Their concern obviously extended to how my wife and son were coping. My wife spoke to them very frequently on the telephone.


Preparing WillsSuccess is the

sum of small efforts.

Repeated day-in and day-out.

10

My leukaemia motivated us to update our wills.

It is one of those things we tend to put off.

My wife and I were recommended to a solicitor who specialised in this area of law and she came to our house a couple of times to discuss what we wanted and present us with the draft and final documents.

While we were about it, we also organised our Enduring Powers of Attorney and Enduring Guardian documents.

If my health deteriorates, it is reassuring to know that these documents have been prepared.


Claiming Insurance

11

Fortunately we have always taken out private health insurance with BUPA which included hospital cover.

This has helped us with many of the costs associated with my treatment.

As a self-employed person, I have also taken out loss of income, business expense and trauma insurances before contracting Leukaemia.

It cost a lot of money but has been well worth it. I never really expected to make a claim.

Lodging My Claims With My Insurance Broker

Understanding The Policy Documents

When I was diagnosed with leukaemia, one of the first calls I made was to my insurance broker.

I asked him to help me to prepare the various forms and send them to the insurance companies. I found that this was a good decision as he knew what was required and could contact the insurance company claims officers directly. This was his expertise, not mine. I also concluded that the insurance companies would take more notice of him than me. After all, he is a professional and the insurers want to protect their reputations with the brokers who recommend and sell their insurance policies.

When you take out insurance we are given complex policy documents with lots of inclusions, exclusions, terms and conditions. I admit to not really reading them thoroughly or understanding it all at the time. I took out insurance thinking that it was the prudent thing to do and I would be covered.

While waiting for various hospital appointments I started to read through the policies. I discovered that the most important things to understand are:

» What are the policy “definitions” which list the medical conditions that are included in the cover? Luckily for me, Leukaemia was one of them.

» How the payments are calculated, what is the formula? I needed figures from my accountant and his help to work this out.

» When will the first payment be made? How long would I have to wait?

» What payments will be made when I return to work and most importantly, how and when is this also calculated and paid?

When I speak to people who are thinking about taking out these types of insurances, I suggest that they discuss these points with their insurance broker, to compare and fully understand the differences between policies.

If you have a very old policy, you may discover, as I did, that the insurer has updated the document with better definitions, terms and conditions. I made a request for them to send me the most recent version to make sure I wasn’t wasting my time trying to understand the wrong one.


Working With My Insurer’s Claims Officer

Once the claim had been approved, I then made contact with the claims officers. I have always found and regarded them to be very approachable and helpful. As they have shown empathy for my situation, I have also respected and appreciated their position.

How could I expect them to understand the complexity of my condition and treatment if I could barely understand it myself? As a result I have made every effort to explain the complexity of the treatment process, what it tries to achieve, how it works, how it is administered and how it affects me. This includes the chemotherapy, the Total Body Irradiation, transplants and the graft versus host disease.

My claims officer and I agreed that the standard monthly reporting forms designed by the insurance company are not very suited to providing effective updates as our treatment is very complex and repetitive.

We agreed that I should provide monthly summaries of my condition and treatment along with updated copies of my list of medications which I keep in my folder. I also make a point of ringing my claims officer each month after I have emailed my updates to explain what I have sent and answer any questions. This helps me to maintain a good rapport with my claims officers and help them to understand what is going on and to trust and support me the best they can.

With my haematologist’s permission, I have provided my insurer with his contact details and given my permission for my case manager to speak with him directly. This has avoided the need for him to tediously complete the insurer’s standard forms every couple of months.

Both of my insurers (AIA and AMP) have been excellent in their support!

AMP made out-of-policy adjustments with my business insurance to help me to cover the cost of continuing my business and retaining my clients. They also generously gave my family a food voucher, an unexpected surprise!

I strongly recommend that when you make a claim, it is advisable to initially gain help from your broker and try to establish a positive rapport with your insurer’s case manager. This approach has certainly been beneficial for me.

Organising Travel Insurance

When I was twelve months in remission, I had the audacity to ask my haematologist whether I could travel overseas to Germany to visit my wife’s family.

To my surprise, he immediately supported the idea. He advised that I should visit the University teaching hospitals if my health required it and that I should wear special stockings during my flights. I quite like my haematologist’s view of the world!

The next step was to see if anyone would provide me with travel insurance. I met with success!

I approached my local Flight Centre office who are agents for Cover-More Travel Insurance. I had to answer a series of medical questions relating to the type of leukaemia (and mine is aggressive), dates, current condition, length of journey and whether I was travelling against medical advice. I had my quote approved within minutes! Amazing.

I can report that my family and I enjoyed a wonderful four week holiday without incident. It was a great break after what we had just been through!


I hope you have found some of what I have written to be helpful.

Before I was diagnosed with leukaemia, I always tried to look after my health.

Now I need to Project Manage it with all of the self-discipline that requires. This, in itself, is good thing.

What could be more important?

Conclusion12

Main Points

The main points that I would like to share with you are:

1. Get organised with a hospital carry bag, diary and folder

2. Remain positive

3. Project-manage each phase of your treatment as best you can

I sincerely hope that your treatment will be very successful and that you will soon be in remission and remain there!

As much as possible, keep your sense of humour, there is a funny side to this… I have finally lost some weight, saved a fortune on haircuts and I became quite attached to my four wheeled companion Sid during my hospital stay!

It’s a fascinating science provided by wonderful people and has become an integral part of my life experience.

It is a bit of a journey into the wilderness, but I hope you are on the scenic tour…

Climb the foothills and you will soon reach the top of the mountain!!

The view is well worth it!


The Author

Hugh is currently in remission from his leukaemia. He has chronic graft versus host disease (GVH) which requires regular reviews by his haematologist and monthly treatment as an outpatient.

Since his transplant Hugh has required some brief hospital admissions to manage infection, however his health since the transplant is generally good and continues to improve. As part of his ongoing health and follow-up after transplant, Hugh continues to attend regular appointments with his haematologist, general practitioner and various medical specialists – which he project-manages himself.

He knows his health is vulnerable and that he needs to take good care of it.

Hugh has returned to work with a 50% workload, ensuring that he balances this with exercising, resting, attending appointments and taking the medications as instructed by his medical professionals. He is very fortunate in having excellent support from his family and friends.

He now is living and enjoying his life as best he can, very appreciative of how fortunate he has been to have experienced, shared and endured such a challenging journey.

Hugh Williams was diagnosed with leukaemia in March 2015 following a routine blood test. He was subsequently admitted to the Royal North Shore public hospital (RNSH) in Sydney for chemotherapy.

His treatment program has included an autologous bone marrow transplant using his own stem cells, followed by an allogeneic bone marrow transplant using his brother’s stem cells.

I would like to take this opportunity to acknowledge and thank the many people who have helped in drafting this book and for supporting me on my challenging journey.

Preparation of this bookI have produced this free book as a “give-back” to the leukaemia community, perhaps bringing change to people with blood cancers. I believe it would help anyone that has had a stem cell transplant. It has been prepared with the generous contribution of time, expertise and guidance from the following people:

» Professor Ian Kerridge, Julija Sipavicius, Cassandra Reid and Melissa Pigot for reviewing the content, text and appropriateness of the book.

» Tony Ronaldson and my family for their feedback and for correcting my grammar and spelling.

» Alana Sargent, my niece from Sweet Lemon Design for volunteering to create the wonderful easy-to-read design and professional layout.

My TreatmentThere are many fine and dedicated professional people who have all been an integral part of my treatment, care and recovery. It is profoundly difficult to find the words that adequately express the admiration, respect and gratitude I have for them. Their care, dedication, skills and professionalism are simply outstanding. They have much to be proud of, as there is much for me to thank them for.

» My haematologist, Dr Will Stevenson and his team.

» The many dedicated hospital specialists, doctors, nurses, carers, patient support services, volunteers and administration have all been exceptional. This includes in-patient, outpatient, ambulatory care, respiratory, pathology, emergency, radiology, apheresis, diagnostic and short-term-stay wards. I seem to have been everywhere in RNSH and my treatment and care experience has been excellent without exception.

» The hospital pharmacist and his staff as well as my general practitioner, Dr Les Brown.

Acknowledgements


Leukaemia Foundation

Insurers

Family And Friends

The Leukaemia Foundation provided free transport for my many hospital appointments when I could not drive.

» The highly competent coordinator was amazing in organising transport for so many people.

» The many volunteer drivers who gave up their time, always friendly, helpful and obliging.

» The sponsor companies who generously fund the organisation and the transport vehicles.

My insurance companies, AMP and AIA have been extremely understanding and helpful in processing and administering my claims. The claims managers have always been very friendly, understanding and professional and demonstrated their genuine concern for my health.

The love, care and support of my family and friends has been wonderful throughout this whole difficult and challenging period. It has been a confronting learning experience for us all, as I have explained in this book, it is not all about me.

IntroductionCover How I have dealt with it…

Getting Organised

Going Home

Family and Friends

Welcome to Hospital

Returning to Part-time Work

Preparing Wills

The Treatment

Will it come back?

Claiming Insurance

Conclusion The Author

www.leukaemia.org.au

MANAGING LEUKAEMIAA PATIENT’S PERSPECTIVE…