Let’s switch a negative

21st September 2015: Sydney, Australia

I am very conscious my writing has shifted in focus from detailing the associations of my personal Cancer experience to expressing the emotions involved in the battle my mum currently faces. I believe the emphasis placed on my mum accurately portrays the priorities held in my life, and it is rather intriguing to consider how fast the change occurred. Ultimately, I centred directly upon the experiences and impact of my Cancer diagnosis for a period over 12 months till I was confronted with the unexpected news about my mum. One point to draw from the immediacy of the switch is the unfortunate circumstances of experiencing Cancer at a young age from both a direct and indirect position. I will stand by my comments about the circumstances being unfortunate, however, an alternate term to be used can also be unique. I recognise many people are facing hardship in their lives, and empathise with their situation. Furthermore, I am not at all trying to place my position above others. I simply feel my position is unique, and can utilise my situation to better support my mum throughout the upcoming period whilst also serving a purpose in broadening my comprehension about the ways my behaviours, actions and adversities effect those close to me. To conclude, without any selfishness, I have an awareness of the importance of maintaining my wellbeing throughout this period, and the new arising challenge will be to equally balance attention on my personal goals whilst working through the guilt, fear and pain felt in relation to the struggle my mum is enduring.

 

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What is Mitotane

25th August 2015: Sydney, Australia

Research was completed into the claims heard by the young person yesterday who stated, ‘the chemotherapy I am taking is a pesticide’. For anyone wanting to cross reference the above information should note, the drug is called Mitotane, and it does seemingly appear to derive from a pesticide called DDT. For anyone not familiar with the pesticide DDT, should also be made aware of the fact it was banned for human consumption by the USA in 1972.

I am consciously aware of the limitations I have in interpreting the information surrounding how the drug was derived from the pesticide, and what possible implications could be associated with the continual use of the drug. Therefore, an email was sent to my Professor expressing an interest in discussing the matter at the next appointment. Basically, my intentions are to make an informed decision, weighing up the risks versus the advantages, especially considering the original form of the drug is now banned in most parts of the world. Furthermore, the limited research on the drug compounded by the fact of the reoccurrence makes me feel inclined to see no separation between the effectiveness of the drug in comparison to other options. Most notably, use of the Cannabis Oil on planned intervals throughout a year combined with an overhaul of my dietary and lifestyle choices. Obviously, I will not be making any rash decisions, however, my current thinking seems to be fairly evident within the writing thus far.

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.

Family and friends

12th June 2015: Bali, Indonesia

I am still in Bali with the dynamics shifting since the large groups of friends I was staying with decreased to four. Included within the four is my brother who booked tickets at the last minute to join for a week. I’m so happy he made the decision, and importantly, was able to surf quality waves with me whilst generally spending time together. Two of my other best friends come in on Wednesday, so after two days alone, there will be a return to constant laughter and good times with those close to me.

I am uncertain how to interpret my feelings at present, and the two days alone may be testing. The support my friends and brother have provided is outstanding, and the departure of all has become a point more pivotal since hearing news about my Chemotherapy levels. In summary, the therapeutic dose in my body should be between 14-20mg. Therefore, you can imagine the news was not well received when hearing last night that I should immediately stop taking the drugs due to the reading of 28.8mg places me at extreme risk of toxicity. Moreover, it should be remembered that I increased my dose before the last set of blood samples were collected. Ultimately, meaning the results were inaccurate, and I would actually be scoring higher than 28.8mg.

In response, I questioned my doctor why it has only been the most recent period whereby limited side-effects have been experienced. A point difficult to understand when levels deemed dangerous correlate with the resurfacing of a tumour. Personally, it only reinforces the previously proposed thought that now the Chemotherapy is attacking the tumour. Furthermore, with no disrespect to my doctor, it shows the limited knowledge the medical professionals have in treating this type of Cancer. Again, another point making me consider my options post Radiotherapy. Most notably, whether I will remain on Chemotherapy. Hopefully the arranged PET scan will be able to assist the understanding on the tumour, namely, whether it has increased during the five week period or disappeared completely as hoped. To conclude, as you can see, I completely don’t know what to think or how to interpret the situation, and I am just wantmg to continue feeling better than when last posting 😀

What happens when your Cancer returns

26th May 2015: Sydney Australia

It is official. Unfortunately, the rematch, i.e. My fight against Cancer is set to recommence. A meeting was attended with my brother, dad and mum today whereby all the available information was shared, and a plan of action was set. The MRI scan shows a tumour has regrown in the same spot as last year, and failure to do anything would result in my death. Therefore, the plan is to have surgery followed by a course of radiotherapy. It seems harder this time, however, a drive to succeed seems stronger. In addition, an overwhelming feeling of anger being experienced is hard to place. I still feel the situation is somewhat surreal as only yesterday morning I was training in the park, and now I am faced with reality of having Cancer again.

The anger felt seems to connect with an ever feeling of loss correlating with my future options. For example, questions posed to myself relating to whether I will have kids or if employment again features in my future story. It just seems my whole plans have been turned upside down, and the only way I can conceptualise the situation is by seeing it as another test of my character, strength and will. Undoubtedly, I am upset and afraid, and the continuous stream of tears is a clear example of the impact it is having on me.

I would say one of the many lessons learned is the realisation of how crying greatly assists my capacity at managing my feelings. Similar to past occasions, certain pieces of information bring the tears flowing, and today they poured when hearing it is very unlikely of me living to a ripe old age of anything else but the disease I have. Some may think the comments are too severe, however, I disagree, and am thankful for the way the information is provided. It has always cemented the reality of the circumstances whilst also acting in some strange way as a source of belief. Honestly, with everything to be faced, I know there are going to be very some extremely difficult times ahead, however, ultimately, I do believe in my survival and capacity in finally claiming victory.

People with Cancer and Cancer Survivors in the same group?

22nd May 2015, Sydney Australia

I am in the car outside the hospital awaiting my next MRI scan. Honestly, there was no stress or thought directed to the outcomes prior to sleeping last night. I can only think and hope that overtime, the procedure is comparable to routine visits with the dentist. Usually, not deemed a favourite place to attend, yet, essential to ensuring everything is ok.

Strangely, a conversation from the initial consulting stage of my project has just come to mind involving an Associate Professor from Sydney University. The relevance of the discussion to my current circumstances links with the planning whereby I toyed with the idea of having people with Cancer and Cancer Survivors in the same group. My reasoning was that both groups could benefit from the exchanges, namely, the creation of group dynamics where survivors are made to feel empowered through their journey whilst the other group can learn and be equipped by the shared stories. Logic prevailed on the matter, realising a separation of the groups was a better option, and this point is only strengthened by days when visiting the hospital for the MRI scan. Admittedly, I am still on treatment and had surgery 15 months ago, however, wish to put this chapter of life behind me, and feel that time passes this period will be seen as a key moment in my life, however, not a moment I hold onto for ever. Therefore, the decision to focus on one particular group was made, and currently being pursued.

Cancer, chemo and a return date to work

19th May 2015: Sydney, Australia

It appears my body has fought off the infection calling a return to usual activity. I am confident of saying the early symptoms were detected on Thursday morning before heading to the park to complete the calisthenic training I have been doing recently. The question is two fold. Would a day of rest prevented the symptoms from eventuating? If so, was the period more tolerable knowing my training schedule for the week was not impacted, with the two planned sessions already completed?

I am unable to accurately answer the initial question, however, in response to the latter point, I can definitely state the period was much more tolerable knowing my exercise schedule for the week had been implemented according to the plan. In fact, measuring the level of stress placed on my mind and body should I have not chosen to train last Thursday morning weighed against training is not comparable. I can understand the response contradicts previous entires whereby the importance of rest is highlighted. I think context is required though, especially bearing in mind the learning undertaking over the past 18 months in discovering what works best for my mind and body. Furthermore, it is evident that rest is seen as a pivotal part of my planning. The scheduled period into each of my ten week plans and the fact of allowing my body to completely rest for the remainder of the week demonstrates the attention placed on the area.

I recognise many may not share my opinion, however, movement is at the core of my health. Regardless of whether I am on treatment or when the time arrives for it to conclude, movement/physical exercise will always play a crucial role in my life. I think it is reasonable to suggest some people may suggest if I am capable of moving in a park, surfing or completing yoga, then I would be fit for work. I disagree completely, and would strongly voice my opinion to those who wish to draw flaws in my argument. In the first instance, the fluctuating side-effects experienced would be mentioned, then I would support my point of view with reference to the increasing amount of literature highlighting the importance of moving for people who are receiving treatment. Furthermore, factoring in the pressure and stressors involved in work compound all the points to make me physically, emotionally and mentally incapable of performing to the best of my ability at work. To conclude, I only see a detrimental outcome of entering work too early, and a total separation between moving for the better of my health and having the energy to undertake all the tasks involved in a job.