Desicions about chemotherapy

24th August 2015: Sydney, Australia
Today, I made contact with a young person who is also overseen by my Professor. The young person had a reoccurrence of Adrenal Cancer (ACC) that spread to his lungs, however, now, approximately five years since finishing a course of Mitotane (chemotherapy for ACC), he is completing his first year at University. It is excellent to hear he is pursuing his studies, especially after being forced to face the journey at such a young age.

Interestingly, the conversation left me more confused about what actions to pursue in the future, namely, whether the course of Mitotane should continue. The young person had strong negative views about the drug, labelling it as a pesticide. Honestly, there is no surprise about his views after hearing the difficulty he endured over the period of 18 months. In terms of my own body, it is a decision I need to make, and whilst seemingly appearing to continue living without major disturbances from any side-effects, there appears to be a safety net associated with taking the drug. There is some irony in seeing the drug as a safety net, especially when bearing in mind my levels were so high, they were actually within a range deemed toxic before the Cancer resurfaced. The question surely becomes why is it viewed a safety net, especially when little success was achieved? I believe the matter could be debated long and hard, particularly being aware a lot of people would proclaim the drugs may be detrimental to my immune system and overall capacity to heal. In response, the only point coming to mind is the thought of not giving myself every opportunity to life should the drugs discontinue.

A hospital room or scene from Kill Bill

11th July 2015: Westmeed Hospital, Sydney Australia

It has been two days since surgery, and honestly there is no comparison to the healing process post-surgery last time. An overview of my circumstances demonstrates an increased mobility, awareness and energy whilst having an appetite. Furthermore, my bodily functions have already reconnected, meaning there is no need for any concern about a possible future enema 😄

So, some details about the procedure and the planning will assist in grasping the current situation. Firstly, two similarities exist between the recent surgery and the previous surgery 18 months ago. Namely, the expected waiting time for my family exceeding the estimation by approximately eighth hours. Secondary, the epidural did not work, meaning a fair bit of pain was experienced when the anaesthetic wore off. In addition, the news I later received was that the operation was reminiscent of a scene from a Quentin Tarantino film with blood bursting out everywhere. My doctor actually stated, ‘the outcome seemed positive, it just reminded me of how surgery was completed 20 years ago’. Upon hearing the news caused little bother, the reassurance the surgery was successful nullified any concern for how the procedure was completed. In summary, I am very outcomes based, so am extremely happy hearing the end result seemed positive, regardless of the amount of blood spurting from my body. The next steps include, two more procedures under local anaesthetic to remove the spread of the little buggers to both my lungs. I have said it once, and believe the latest antics only demonstrate my previous thoughts about Cancer being quite the narcissistic character!

How is best communicate with doctors?

10th October 2014: Sydney, Australia

Yesterday was considered a day of rest, and the manuscript seems to have been followed as planned with almost 13 hours of sleep had last night. Unfortunately, a sour look still graced my face upon waking, leaving me thinking another quiet day is needed for my body to heal and recover.

I am still yet to have the 100% clearance from the radiographer, however, reassurance of being healthy was obtained by jointly reviewing the MRI results with my doctor immediately following the MRI scan. An example of a key factor contributing to furthering the doctor/patient relationship as a sense of control and care is evident. I know my outlook is not shared by all those around me. I guess, the phrase coming to mind is ‘choosing your battles to fight’. Although, I have never had to fight my cause, and admittedly I can be somewhat demanding at times of stress or concern. The example above provides insight into my approach on what matters are prioritised, and ultimately how I follow through certain concerns with my doctor whilst happily waiting for my doctor to make contact in relation to other matters deemed less important. Expansion on this concept highlights the emphasis on ensuring my doctor is not overloaded with requests. In this instance, I’m fairly confident the results will be positive, thus, I see little value in pushing the matter. I know it’s a fairly basic concept, however, it seems concerns, such as Cancer can lead people to become overly eager and demanding of their doctor. Ultimately, I believe such an approach can be counterproductive as constant pressure normalises each request, not marking the times when contact is essential and should be prioritised.

Is a MRI scan like sitting in a coffin for an hour with a gun shot, drill, school alarm and some weird techno beat all simultaneously ringing

image

8th October 2014: Sydney, Australia

A sleepless night was had, strangely though, my thinking wasn’t based on questions of ‘what if’. Rather, an unidentifiable feeling of unease had overtaken me. After finally drifting off, my eyes would open to reveal the sleep was only short lived, showing only an hour had passed, and it wasn’t till birds started to chirp whereby I released the lack had over the course of the night. Throughout the restless night, I wasn’t directly thinking about the upcoming MRI scan, blood test, results or anything else. It was almost like my mind didn’t have to have to worry about what going to happen as my body was already switched on and operating at such a charged and rapid pace.

I had my day planned. Get up early, with no eating of course due to the MRI, and drive out to the hospital to avoid the traffic. Once there, I would have the scan, meet with my doctor, get my blood taken, then collect my next round of chemo before returning back. All sounds relatively straight forward, probably would be if the flu didn’t rear it’s head with a vengeance, staging another showdown before it passes on. My eyes were almost closing on the drive home whilst my mind dreamed of arriving safely at home to fall into bed. All my concentration was required on the drive, with assistance from the brisk fresh air from the outside to keep my eyes open. Oddly, the only relaxing moment of the day was the 45 minutes spent inside the MRI machine. If you have ever had one, you’d understand why this is odd. I remember the first MRI left me feeling like I had been sitting in a coffin for an hour with a gun shot, drill, school alarm and some weird techno beat all simultaneously ringing in my ears. Now, I find the sounds almost relaxing, maybe because I know my immediate fate is to be determined within the next few hours.

In regards to the big days associated with the Cancer journey, support can be viewed as one of the fundamental components in assisting the process. It’s days like today where I’m grateful for the support around me, contact from friends, girlfriend and parents make it all the more bearable. Before setting off the drive in the morning, a food and medication box was prepared, courtesy of my mum to simply take a few stressors out of my day whilst ensuring I had my post-MRI fix. I use the term fix as me without food can be comparable to an agitated addict searching for the next hit. Literally, I’m a nightmare, and that’s speaking in the first person, imagine living with me! A packed lunch may not seem as significant to other forms of support, but it’s the little things that matter the most. The care, thought, and not to mention the tastes within the prepared food box are some of those little things in life that make living a hell of a lot easier.

Support is also about medical assistance, and agin today was an example of the reason for my mum and I walking out of the hospital after our first meeting both knowing that we were with the right doctor. I’ve had a fair bit on my mind leading up this test, maybe a tad dramatic on some issues, however, I was given ample time to speak about what has been on my mind, then had my checks completed and left with the reassurance of knowing I’m going to be ok. To say I didn’t have nerves would be lying, especially when my doctor was explaining his observations of the MRI results in the appointment room. At this moment, I was totally unaware about the differing objects and structures within my body so was looking for any gestures or body language that would contradict the verbal communication received. The reassurance I received was that no abnormalities were evident, indicating the second check is clear, and I am working towards my goal of long term health and wellness. Confirmation from the radiographer will confirm this, and to celebrate a dinner will be held to mark the occasion. I have told my family and friends that it now seems I have four birthdays a year as I always want to celebrate the day when finding out positive news.

In concluding, the exhausting long day and lack of sleep from last night has left me short of words and energy so will need to continue writing tomorrow. To finish, I must say, the sore throat and fatigue fought hard but the smile that was shining when leaving that hospital today means victory is coming. When exactly, I am yet to answer, however, I do know that many smiles will be appear in my long future still to be lived.

Communicating with Doctors

3rd September 2914: London, United Kingdom

Relationships were mentioned last week. Essential to any relationship is communication, and for people experiencing Cancer, this is a pivotal matter. Personally, a degree of frustration was experienced today, yet, some points can also be highlighted from this chain of events to form a discussion. A quick summary of the situation results from my current stay in London, and the need to visit St Bartholomew’s Hospital for checks, particualrly when high levels of nausea and lethargy for a period deem a check essential. Both points ultimately lead to a worry about the illness returning or toxicity from chemotherapy. Results from tests undertaken showed that the form of chemotherapy I receive (Mitotane) was not within a recommended therapeutic guideline. Consequently, the doctors in London instructed me to increase my dose. Rather than following the advice, I informed the staff in the first instance I would prefer the point discussed with my doctor in Sydney. My reasoning being that I am in a research project, with the specific objective to ensure I receive optimal levels of Mitotane. Furthermore, the message reinforced my alignment to the doctor whilst also showing a respect for his professional opinion. The only issue was that a response from Australia had not been obtained for eight days, maybe not so long, however, it seems an eternity during times whereby I am crippled with nausea accompanied with feelings of fear. I have always wanted to ensure any follow up related to my care and treatment is addressed at the nearest possible time. Over the period of eight days, the London team had sent one email and I had sent two emails, one included his secretary into communication. On the eighth day, the following email was exchanged, immediately relieving my stress due to my objectives being achieved. Just to note, I have blocked out both all names for purposes of confidentiality.

Dear Professor,

Just a follow up note to convey I am aware of the demands you have from your role and recognise there are many people who would be requesting information and assistance from you.

I am not expecting an immediate response every time I have a query, however, am hoping for some clarity specifically on the matter of increasing the Mitotane. The email from the registrar at St Bart’s showed my current Mitotane levels were below the therapeutic guidelines. I am aware the plan was to slowly increase this dose, and now after approximately four months, I am concerned that the drugs that I am putting into my body aren’t performing their intended function.

Obviously, I have no knowledge about this so am just asking for clarity and reassurance, as I’m not certain whether a clearance is needed from Newcastle prior to the increase in dose, whether the recommended therapeutic dose is at all applicable (previous conversation about there being no-standardised level for Mitotane use) or if there is another reason I am unaware of?

Similar to previous requests, I do not intend to come across in a critical manner. I would just like to be more informed about my care and treatment, as understandably feeling uncertain on specific matters causes me to experience a level of stress.

Thank you for your time

It is not my intention to suggest this is the best example available. Rather a basis to show how I went about getting my objectives completed and to also outline some points for others to consider when communicating with doctors:
– Direct contact with the doctor is desired in comparison to communicating via a secretary or administrative worker. This is not always going to be possible. Ask at an early stage to obtain the mobile phone, email and what to do in emergencies.
– Providing a request in writing allows you the time to put together your points without missing any information. At times, you can hangup the phone, then have the moment of ‘ahh, I didn’t say’.
– An email allows you to get someone to check it prior to sending for corrections and suggestions and is a reference point, with clarity on timeframes for when it was sent, the content of the email and what was agreed.
– The email example above shows an understanding of the competing demands of the doctor all requiring his/her immediate attention. Therefore, it is essential to be mindful of how you get your message across as you don’t know what sort of emergencies he/she has to encounter.
– Be concise, assertive and use specific questioning to outline what is concerning you. Hostility is not going to achieve anything, nor is a lengthy document. Keep it short, clear and simple, assuming that he/she has a number of patients to see plus all the emails that will be waiting in the inbox.
– Don’t be afraid to follow up on points when you don’t feel the response has been adequate or the timeframe in getting back to you is too slow.

Some points to consider in face to face meetings include:
– Be prepared, having notes and a folder containing all your information. One of the most important points is that you need to be your expert, of course you are not to have all the medical knowledge, however, extensive reading of your specific area of inquiry and numerous quesitons should be asked in each appointment.
– Ask those around you for points about what you plan to say and ask for suggestions for anything you may have missed.
– Explore research possibilities, it is better for you and the Cancer community should you be involved in a study.
– Explore what other care and treatment options are available, including other treating practitioners.
– Think about the varying people providing support along the journey. Consider taking someone, close, i.e. spouse/parent/sibling/son/daughter/relative or friend with you to each appointment.
– Finally, remember it is your body so take charge and utilise the medical knowledge available plus look to increasing your knowledge about other factors to be discussed at later stages, i.e. nutrition, movement/exercise, meditation/mindfulness, stress reduction, relationships, religion/spirituality & the surrounding environment.

Decision to commence journalling

27th August 2014: London, United Kingdom

The date of the entry is fairy self-explanatory, marking today as the starting point for sharing the thoughts and feelings collected over the past eight months. My reason bending sharing these entries mirror the feelings for embarking on a mission to track the experiences of haing Cancer (a point to be later revealed). With that short introduction finished, the below content and future entries all follow a chronoligical order recorded on the date provided at the beginning of each entry.

Prior to commencing a number of points need to be established. Firstly. I’m not going to have rules governing the entries in this process, i.e. everyday an entry needs to be made, the content needs to relate to my situation or a sequential pattern needs to be followed. A prime example of not adhering to a sequential order will be demonstrted by not following immediately with a second or third point, and instead look more closely at indirect reference made above. ‘My situation’ is otherwise known as the Cancer that was inside my body at the start of the year. By not labelling it as Cancer questions whether I have accepted the reality of the situation or if the terminology is used as a strategy to undermine it’s influence whilst enhancing my own control. From this very initial paragraph it is evident that this and many other topics require continuous revisiting and also establishes a theme about the somewhat subtle and more direct attempts I make at finding a stratergy to manage my health and overall life.

Second point, and being brutally honest is about the audience and purpose of these entries. Yes, the use of ‘these entries’ indicates a commitment to continuing this process, which then leads me to wonder whether my ego is largely at play here, screaming “it’s showtime, lets put this together to write a book or use a guide when running the groups that I have envisioned”. The group is a seperate idea whereby focusing on supporting individuals with Cancer and ideas for how individuals & carers both understand, process and prepare for their upcoming or present situations arising from their Cancer diagnosis. I am fully aware that the idea requires timescales and deadlines to actually see the idea become a reality. Otherwise, it will is just be like the market stall in London, the creation of an app or numerous other ideas that have gained my full attention than faded quickly into a past of thinking ‘what if’.
So back to the journal, the purpose/audience and the need for honesty. I would like to think that it may be useful to collect some of my thoughts and then someday, who knows, why not dream big and think that groups will be running and a selfhelp book can be published. Already, a degree of fear is noticed whilst writing this first entry. Consciously I will write, ‘how I will use the material’ opposed to ‘how the material will be used’. I feel this terminology places me in a position that creates a future for me, a future of life and to hijack words by others, a future of survival. All sounding very dramatic, however, it is the features of my stratergy to work towards achieving long-term health and well-being. Furthermore, in a more pragmatic view, it can be used to track my thoughts, reactions, celebrations and challenges to equip me for future scenarios.

Third point, the timing of the journal. Why didn’t I start writing once ‘my situaiton’ started? Well, it seems rather simple, and is clearly demonstrated by two key words, motivation and meaning! Many direct/subtle remarks about writing a journal were made from the very beginning. Plus, the message was reinforced in a book read from Dr Ian Gawler (how to cure cancer), however, there was a lack of any motivation in undertaking the activity. Furthermore, it had no meaning in my life. Interestingly, I have tracked the physical exercises completed, symptoms and my eating/drinking habits prior to the escalation of hearing the news that I had Caner, yet, I didn’t have the need or could not find purpose in writing a journal. The logical question surely then must be, why now? I think as noted before, it is whether I use this for personal reflection to track how I was thinking and what I have applied throughout the process or if this in someway takes shape to help others. Already, a sense is felt whereby both examples outline the main obstacle requiring attention. The obstacle is whether I am going to survive. The response must entail a level of normality in these thoughts, however, recognising that I cannot entertain them. Instead, I need to create, dream and focus on that loving, happy, wholesome and healthy life awaiting me.

A shift off topic occurred again. Maybe the prior passage speaks for itself, i.e. that my motivation wasn’t focused on writing a journal. Rather, my belief and energy was directed completely to getting through it all. The reason for writing now, well, is it optimistic to think further entries will follow symbolising a future and the realisation of my dreams. Also, the thought came to me and like many aspects of our lives, there needs to be a number of elements in place to the formation of a tangible item, whatever that may be. So why now, eight months after surgery did I start writing? It followed a discussion with a manager at work. Before we got onto the speaking about cases, we were having one of those engaging conversaitons where you can bounce all the accummulated informaition onto someone and also listen to what they are saying. Mind you, he has also had a close personal encounter with Cancer. Therefore, a degree of comfort is found, and he simply asked whether I am writing any or all of this down, to which I replied no. When leaving, the thought came to my mind and seemed like a completely necessary task to start working on.