Cancer is big business

18th November 2015: Sydney, Australia

I am unable to comprehend how the support provided to my mum in certain situations is the exact opposite to what I would be wanting if the roles were reversed. The thinking behind the entry stems from the circumstances I currently find myself within. At present, I am sitting in a chair adjacent to my mum whom is receiving her second round of Chemotherapy. I would love to be more supportive, showing even half the level of support shown to me throughout the many months, however, it seems a total loathing of the setting makes me switch into a mode whereby I close myself off from the world around me. Strangely, the setting is all very modern with attentive staff and a relatively pleasant atmosphere, however, I am unable to overcome the feelings and attitudes held towards the place. The reasoning behind my attitudes may either be the desire to move away on a personal level from the world of Cancer or whether the whole place, including the flight attendant smiles plastered on the face of the nurses combined with the free wifi evoke thoughts about the amount of money made from Cancer. Admittedly, another reason could be identified, namely, the completely cynical stance seemingly emerging within my mindset when thinking about Cancer.

Light at the end of the tunnel

22nd July 2015: Westmeed Hospital, Sydney, Australia

I am awaiting the call for another X-ray before having confirmation I can finally leave. Well, it will be more of a temporary hiatus at home before coming back for the final procedure in just over a week. Overall, the time has been successful, and in all honesty, I am easily able to overlook some of the frustrations when weighed against the actual outcomes obtained thus far. A similar outcome next week will be a fitting end to this entire ordeal, leaving me then in a position to direct my attention on recovery and continual progression towards existing life goals. On the matter of existing goals, my personal goals are to strive towards working to optimal health and well-being. In addition, I have had received interest in regards to the framework I designed for people with Cancer. Therefore, it seems a platform is established to launch the programme in partnership with a reputable national organisation in the attempt to seek positive outcomes for those who attend. To conclude, I must state that I am fairly happy with the awaiting options, and feel this minor slip will only further benefit my knowledge and capacity at managing the many future life obstacles to be encountered.

What is pain?

20th July 2015: Westmeed Hospital, Sydney, Australia

I am writing this entry, awaiting to be called for my first scheduled operation on my right lung. I am nil by mouth, a factor possibly contributing to my seemingly intensified medicated state. To my advantage, the medication is both managing the pain from the two procedures completed thus far whilst stopping any invasive or worrying thoughts affecting my outlook. The day at a close will be rather eventful, particularly when bearing in mind the story below.

At this moment, I should have had only one procedure, however, two drains adjacent to my wound were required three days ago to release a build up of liquid caused by an infection. Samples since taken have showed the procedure was successful, leading to the removal of the drains this morning. Prior to removing the drains, the nursing staff advised me the specific drain typically causes a degree of pain during the removal process. Interestingly though, the whole process was completed with a level of ease, and it was made possible by identifying with the concept of fear. On reflection, it seems I gained an understanding of the correlation between fear and anticipated pain. The term, anticipated pain was used to separate pain into two domains. One whereby obviously it is anticipated and another type of pain, namely, when it results from a sudden or unexpected event. Basically, I came to conclude if there was no fear, then the body would not be preparing itself for pain in the moments leading up to the expected event. Upon applying this theory, I was able to recognise the information provided by the nurses sent me into a state of fear, and therefore, I was expecting to feel pain. Once this was identified, I was able to draw on an inspirational story of Mick Fanning, a surfer who today was able to escape a shark attack unscathed. I envisioned what he must have been feeling before his encounter compared to the removal of two drains. The mental exercise enabled me to place the upcoming events in context, resulting in a distraction/blockage in my mind. In summary, I was not focused on the anticipated/expected feeling in my body, and consequently, any degree of fear dissipated whilst also leading to a removal of pain when the drains were withdrawn.

Few pictures from time in hospital

16th July 2015: Westmeed Hospital, Australia

The following pictures were taken by a friend during my stay. An explanation for some of the images is probably needed. Firstly, no I am not auditioning for a part in Game of Thrones in the opening image. The second image was taken when my friend and I were playing around on ward, it was intended to seem as if I was attemoting a break out. I must say, the doctors and nurses were amused at the antics. Finally, apologies for the nudity, my friend was just snapping away throughout the session 😄

image

image

image

Are patients empowered during their hospital stay?

14th July 2015: Westmeed Hospital, Sydney, Australia

I honestly believe the compounding events have resulted in a sense of me feeling like I have lost my voice. For instance, is it ok to not have a warm water when showering? Is it ok to simply submit to the nurses when trying to administer drugs you do not wish to take? Is it ok discard the lecture provided yesterday about having Liver Cancer as just a mistake?

Maybe some leeway is needed on the latter point, however, I strongly feel my input seems to have been removed from most, if not all decisions recently made regarding my health. Furthermore, when putting the circumstances into context, it seems the level of care does not reflect the situation for someone living in Australia with premium private health care. The conundrum then becomes one pondering the type of circumstances for many of those in a less fortunate position. I acknowledge how fortunate I am to have private health care, however, if I feel a loss in my input, then I am curious about the capacity for people to voice their opinion when severely impaired, lacking in support, discriminated against or simply overwhelmed by their circumstances?

To conclude, I hold grave doubts about the intentions behind certain policies when the focus is meant to foster empowerment in people, however, conversely the reality seems to ultimately result in people losing control over their own health. I would greatly appreciate words and other experiences to collate information as a means of gauging the current systems governing us?

Drowning in opiates…

12th July 2015: Westmeed Hospital, Sydney, Australia

I am writing in a dazed and confused state from the events endured last night. The circumstances seem evidence of the obstacles to be faced over the coming period. It commenced at approximately 10pm when a sensation of being utterly lost in a cloud of opiates became overwhelming. Consequently, a negative mindset surfaced whereby I felt extremely vulnerable, and when reflecting it is difficult to describe, however, basically my pain increased to an almost intolerable degree, and it was not till 5am when my medication was changed, knocking me asleep.

I am now awake, have had blood collected twice, feel heavily dazed, and not in a position to do anything except lie in bed focusing on past quotes to keep me balanced. The feeling is a perfect example of what I have been trying to explain to staff members about the need to find the balance between having the capacity that allows me to engage in activities whilst keeping the pain away. Hopefully, someone will soon understand this predicament!

An entry with a twist, please take caution as I don’t wish to offend!

17th April 2015: Sydney, Australia

I do hope people are not offended by the post. My reasoning for being so explicit is to give an accurate account of the harsh reality associated with the uncertainty constantly encountered. Well, here goes, and please remember my intentions are to share, not offend!

I shat myself today. Admittedly, a rather unorthodox start to an entry, however, it seems no other words will explain the embarrassment caused by the events of this morning. The incident is hopefully the final piece of an unfolding puzzle, responsible for causing havoc on my body over the past three days. I am unsure whether a link exists between the recent chain of events and the unfolding circumstances within my life for over a year now. It simply felt like my body needed to shut off from everything, and the 19 hours of sleep on Wednesday is surely evidence of this. A description of the recent feelings could be linked to images of a storm descending on my body to knock all the energy from me. Consequently, I am left curious as to the reasoning behind the sudden shift from feeling a seemingly normal level of health compared to now.

Interestingly, feelings of shame do not register in my thinking when recalling how the incident occurred. Instead, the unconditional support of my mum shines vividly, and helps me to see the situation in a humorous manner. In saying that, I am hopeful the storm passes, opposed to signalling something more severe than an singular, childlike accident. One point considered heavily over the past few days is the similarities to the difficulties had prior to the detection of the tumour 18 months ago. Furthermore, I have considered my possible vulnerability in Indonesia. Thoughts of regret have definitely circulated in my mind in relation to my travel plans, especially considering I am will not be insured due to the costs associated in covering me. In addition, it will not simply be a case of going to St Barts Hospital in London where I am known and receive the necessary treatment. Instead, there is a real possibly I will be in a very remote place, or worse, just need to tolerate the pain and self medicate till appropriate help is sought. Both, not very inviting prospects!

I wish to relive the feeling of being Wolverine….

image

30th December 2014: Sydney

I am currently waiting for pictures taken from the MRI scan just completed, and passing aside the hunger due to fasting I am actually feeling fairly relaxed. Whilst lying in the tiny compounds, listening to a voice instructing me when to breathe, I noticed that the noises and discomfort associated with the scan do not lead to any irritation, rather the overall process is relaxing whereby my eyes close for approximately 45 minutes, completely focusing internally on my bodily functions. Also, the mechanisms of the process evoke my imagination to circulate images of Wolverine from X-Men whereby my body is in the process of rebuilding to a place previously unforeseen. Obviously, this view contrast popular opinion about the MRI symbolising a weakness or deficit, a typical correlation to such circumstances. It could easily be seen as a delusion, and it may well be justifiable to share this opinion, however, the importance of a source of inspiration, regardless of how believable it is, seems essential to the continual recreation of a positive narrative about my life and the direction I am heading.

The surrealism involved in using the unrealistic image of a character such as Wolverine may be an unconscious tactic used to handle the overall environment of this hospital. Numerous times I have noted the annoyance and frustration experienced with the hospital, more specifically the pharmacy department. The feelings stem from the incompetence and rudeness that seems to govern this particular section of the hospital. It is not uncommon to switch from a positive mindset into one filled with negativity and anger. At present the writing is a true portrayal of the transformation in my thinking. Initially, I was envisioning a Wolverine version of myself undergoing testing to determine strength and longevity, and now whilst sitting in an overcrowded room I am fantasying about my death. In addition, I am cooling down from a slight outburst at the repeated response when attempting to obtain my medication. I have encountered rudeness and total incompetence each time I have visited this section, and today after knowing my supplies had arrived I was again faced with the response “oh, I don’t think we have that”. My response, admittedly completely inappropriate was “fucking c#*ts”. As noted, I am aware this is completely unacceptable, and doesn’t make it any better that it wasn’t directed at him as people were waiting behind me. I could attempt to provide reasoning for the statement, however, I need to take responsibility for my actions, noting the unacceptability of my behaviour.

I also acknowledge further explanation is required on the previous statement made about the fantasy of death. Firstly, the reasoning for the phrase fantasy? A rather strange choice of words as it would imply a desire to achieve such an outcome, and the thoughts circulating throughout my mind would suggest my death was a desired outcome. Obviously, this is far from the case, and it’s just a very negative thought pattern allowed to spread like a fire blazing throughout bushland on a hot summer day, however, similar to a building wind engulfing the flames of a fire the whole environment was intensifying this chain of thought. It consisted of me being told the Cancer had reoccurred and my response was to not opt for surgery or further treatment and instead fight the growth via alternate methods, involving a bucket list type of possibilities that ultimately were not successful, and resulted in my death. All details were not mapped out, however, the concept of a funeral was. My idea was to hold a celebration, not advising people what is was about and putting on an excellent night for all. The result would be me delivering a speech to others about what I am grateful for, and my idea to search for alternative ways to treat my situation, hence, this opportunity may be the last time I see everyone in the room. It all sounds very dramatic writing about it now, and may not be the best way to proceed, however, it is a perfect example of a self-destructive chain of thoughts that could be the dominant pattern if a different mindset and narrative were not instilled in my thinking. Lastly, I wish to relive the feeling of being Wolverine, so some exercise will be completed immediately after leaving here to clear my mind whilst having the knowledge of being in the right frame of mind to equip myself for my future.

Bedlam continued…

image

3rd October 2014: Sydney, Australia

The initial days of waiting in hospital left me wondering why I was still there, especially with frequent reports within the media about the lack of hospital beds. Surely, I was taking up valuable space needed for people who really required attention and were actually unwell! The collection of other men in the ward consisted of two beds remaining occupied whilst a revolving process of inpatients for the others. There was one guy, a recovering alcoholic from South Africa, in the bed opposite me who remained in the hospital throughout my duration. A very good guy, and together hours of backgammon were played to pass time. After four days of staying in the hospital, I was finally collected and taken for the first of many scans. I have to come to consider it the hierarchy of scans as it was just an ultrasound. Easy! I lay there, had a warm gel placed on my stomach and was able to see the insides of my anatomy. Neither intrusive nor uncomfortable but fairly interesting, especially as I could see the screen. Sure enough, I curiously watched the images, wondering if I would be able to see the wormlike creature causing havoc within my body. Between the games of backgammon, samples of blood taken and the food trolley alleviating a hunger possible fuelled through routine and boredom, I had occasionally been flicking through a book detailing the anatomy of the body. In some ways, I could be referred to as outcome focused, thinking I had to take something from the days in hospital.Therefore, the scan was a place to test some of my learned knowledge.

The screen was showing the insides of my body, a narration of the images by Sir David Attenborough would not have seemed unusual. It wasn’t till the scan passed across one area of my body that quickly my brain switched to thinking about what organ occupied that specific area. Nothing came to mind, so I asked, ‘what is that’. The response, ‘I’m actually not sure… It’s not unusual for us to have differing anatomies’ would usually cause concern and maybe subconsciously it did, however, I was able to overlook the seriousness of this obscurity. I departed the room back to the my bed, j aware the whole game had now changed. Almost immediately, the doctors came into my room, closed the curtains and told me the findings. two points were known. Within thirty minutes I would be transported by ambulance from Bedlam to a specialist endocrinology ward within St Bartholomew’s hospital. My new own room was in the centre of London, with a view overlooking St Paul’s Cathedral! Again, I blocked out the reasoning for me having my own room, and thought that I would be closer to some of my mates who worked in the city, could pop out to grab some decent food and would be able to get a good night of rest. Stupidly, the thought didn’t occur why these arrangements were in place.

Will I be one of the 30% who survive?

1st October 2014: Sydney, Australia
The flu symptoms are still continuing to have a firm grip on my mind and body. I can only describe it as what I imagine a forceful wrestling movement deployed by trained military personnel would feel like when being dragged into submission. My body is immobilised, throat gagged, mind numbed and aching from head to toe. Yes, a massive over-exaggeration, and simply just the common symptoms felt when struck by a cold. It is testing my will though, particularly as a churning in my stomach and a whisper of the fear lingers in my consciousness. The fear derives from thoughts about the likeness of the current bodily sensations compared to the period leading up to being placed in what I deem a modern age Bedlam.

Modern age Bedlam! Details won’t be disclosed about the location of the hospital nor will criticism follow, yet, the sharing of a ward with five other men, two of which who had dementia are just the beginnings of a picture built to portray the surroundings of the hospital I was first admitted to after last experiencing a sore throat, bodily aches and fatigue. It should be mentioned that a stabbing sharp pain in my stomach also was factoring into the decision to be hospitalised, and I recognise this is not present, however, an uncontrolled mind can entertain the possibility of certain signs holding much greater significance then just a cold or flu.

The certainty believed in knowing it is just the flu is an underlying feature of my Sunflower framework, particularly the focus on a clear and directed mindset. The question to be posed though would entail the degree of hypocrisy attached to only knowing I am ok when the MRI scheduled for next week produces these results. Is that not a contradiction to having a certainty built in my mindset? I had a feeling of invincibility when approaching my last scan, with a certainty of my body not under any attack, however, the flu and shoulder problems have both placed me in a position whereby I am looking forward to the MRI next week. A positive result will enable me in the future to have the knowledge to normalise certain circumstances whilst reinforcing the positive belief held that I will fall into the 30% of people who survive the type of Cancer previously inside me.