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.

 

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.

Why are we facing an obesity epidemic?

15th May 2015: Sydney Australia

The rise of obesity within the Western world and the endless nutritional fads promoted within mainstream media are so intriguing. Surely, each factor is the byproduct of the other. For arguments sake, inclusion of movement or physical activity needs to be mentioned. Many facets of this topic arouse my curiosity, most notably, the possible confusion experienced by people resulting from the varying amount of contrasting information relating to what people should eat or how to move. In addition, it is imperative to reference the growth in market size of the broad area of health and wellbeing. A likeminded person would see the connection immediately, of course that is dependent on whether I have been able to accurately convey the intended message.

The point first stuck me whilst listening to a recent podcast, and has since been thought through. Typically, useful information is extracted from the podcast, however, on this occasion, the striking feature was the lack of knowledge the interviewees actually had. Their capacity at quoting health jargon is indisputable, and yes an overwhelming enthusiasm was evident. My quarrel related to how little content they were able to draw upon without referring to their website/blog. The seemingly lack of knowledge lead me to question the truths of the so called health industry, and importantly, I was able to recognise the similarities between the health industry and any other market. Just to note, I applaud people for seeing an opportunity to make a living from their chosen pathway, however, I believe the continual new fads in regards to nutrition and exercise are the cause of confusion for the general public. Ultimately, resulting in personal financial gain for a few people whilst also contributing to the rising rate of obesity and other health concerns for the easily influenced, and at times extremely vulnerable general public.

Obviously, I am unable to influence the market and shift patterns, however, hopefully people can learn to see the importance of seeking reputable sources of knowledge prior to deciding on what strategy they will adopt in their lives to promote their health and well-being.

I am going overseas, so just rip the tooth out!!

9th March 2015: Sydney, Australia

I was correct about the over-reaction to the pain from Thursday. Scans revealed the source of the pain was a swelling of my gums around one of my remaining wisdom teeth. Initially, attempts were made to apply gel to the region, however, three days of pain resulted in the decision to just booking an extraction of the tooth. My thinking was based on two ideas. Firstly, if I am in pain, it is preferable to be in pain knowing the tooth has gone, and secondly, it is far better eliminating potential concerns before travelling overseas during the winter months.

One of the points associated with this process was the delay in getting the tooth extracted, and this derives from the concerns held about the treatment I am receiving. Obviously, it is essential point to be considered, and in all honesty, my Professor made a fairly swift response. It was just another factor reinforcing the restrictions on planning due to my circumstances. Two examples come immediately to mind in regards to this topic. The waiting period as mentioned is one such factor, and the other being the need to be fully equipped for the planned overseas travel to Indonesia over the months of June/July. Factors to consider include a heightened awareness of the food eaten due to concerns and implications with my Cortisol levels should I become ill, the exploration of travel insurance options excluding any Cancer related concerns plus future decisions regarding use of injections and medications whilst away. On reflection, all points should really be factored into travel, so possibly on my behalf it’s more a lack of vigilance in the past.

To conclude, I am completely content with the prospect of being in a pain for another week. My reasoning, I have the knowledge it is simply a tooth ache 😄

Serious questions need to be asked about whether the easiest option is necessarily the best option?

10th February 2014: Sydney Australia

The events last night stained me with memories forming the basis of this entry. It all started with the ever familiar feeling of a nausea crippling all thoughts, motivation, strength and focus. Moreover, these thoughts were compounded by a repulsive odour that was passing throughout my system. An odour, toxic enough to test the fine line between feeling nauseous and vomiting (sorry if too much details). I recall thinking, ‘just one more year’. Fortunately, I soon realised this chain of thinking was not productive, so I pushed through the discomfort in order to complete some mental exercises enabling me to switch the thought process into a state of acceptance. I need to acknowledge the indisputable fact that side-effects will occur whilst also recognising the many flaws that exist in setting a timeframe for when the side-effects will finish, hence, the reason to instead seek for a degree of acceptance with my circumstances.

I stated many flaws could be outlined, and two main limitations will be explored. To commence, the most obvious point surely must relate to a possible scenario of being placed in a situation in a year from now where the recommendation to continue with the course of treatment is received. The reality of the outcome mush be highlighted, especially bearing in mind the mixed input received from varying professionals who have been involved in my care. An overview to portray the previous point entails a recommendation from the team of doctors in the UK who believe I should remain on the medication for a period of five years, with an indication of a maintenance dose for the entirety of my life. Secondly, my case was presented to doctor from the USA who is a specialist in the area, agreeing with a timeframe of no less than five years till review. Thus, as noted, a continuation of the treatment for more than a year could be a very real possibility. If so, what happens when I am feeling like this next year? What sense of hope can be derived from a situation when faced with another loss, especially with no finish line ahead. It is for this reason why an acceptance of uncomfortable and upsetting situations needs to be found within my life. It is not easy, however, it seems a far better approach than setting in place potentially harmful timeframes.

The second point is the growing inclination to use some form of prescription drugs to just sleep at night as a means of taking away any discomfort. A temporary solution in extreme circumstances, however, if taken on every occasion I feel nauseous, then I believe a reliance could easily be integrated into my weekly routine. Furthermore, serious questions need to be asked about whether the easiest option is necessarily the best option? In addition, I am unable to shift my view of seeing the action of taking a pill to relive any suffering as truly not doing all I can to overcome this situation. Again, this point would be contentious, and all people would vary in their approach, however, I feel a testing of my mind and body is definitely in process. Therefore, what reflections can be drawn from me taking the easy option? I am not advocating for suffering, yet, I would prefer a period of difficult is worked through by building my internal resources rather than a temporary remedy is taken in the form of a tablet. Finally, and is probably the primary reason for not considering use of any substance at this stage is due to very likely sedated effect on my body and mind th following mornjng. Therefore, I actually see the decision as counterproductive, and prolonging the period whereby I am incapable of undertaking routine tasks.