Callum's Story

My tips for sufferers (part one)

Hey all,

Okidokes, I’ve decided to compile a list of the top 10 tips I came across/came up with while I was going through the treatment process. So its not going to be such a labourous task to read through it, I’m going to split it up into three parts (and post it in reverse order). I hope they help and feel free to post your own top tips to help sufferers. So here it goes… 

# 8 Acknowledge and stay true to your emotions - I’m trying to think of a less corny way of saying “There is no ‘right’ way to feel” but I’m drawing blanks. The statement, however corny and lame, is nonetheless true. Some days you’re going to feel okay and other days you wont. While maintaining a positive outlook is highly desirable in any situation, you shouldn’t feel obligated to feel one way or another on any of those days. Sometimes for me, trying too hard to be sunny and happy can have the opposite effect and there were days when I felt like I needed to feel like crap. On my bad days, while I acknowledged the negativity, I felt my competitiveness and outright stubbornness really come to the fore and I simply refused to let it get the better of me. Having said this, however, to say that I never felt irritable, sad, sick, tired, pained, angry or otherwise negative would be an outright lie. But we all have those days, whether we’re sick or not. Thankfully for me, those days were vastly outnumbered by the good days where I made use of some the the tips that will be featured later in the list to help me see the sunnier side of life again. Positivity is your greatest weapon in the fight against cancer yet there might be days when even that simply wont work. Allow yourself to feel the good AND the bad, but never never never let the bad consume you. When you’re feeling negative, talk about it! That is the best way I found to let people know where you’re at emotionally and it helped enormously. More often than not your friends and family would value the chance to be able to support you, so let them! You’re not in this alone.

# 9 Set realistic expectations for yourself - Once treatment has started, nothing will damage your self esteem and effect your positivity like setting unrealistic expectations of yourself and failing. The symptoms of the cancer itself as well its treatments, such as surgery and chemotherapy/radiotherapy, are often severely debilitating and realizing that life wont be exactly as it was before the diagnosis while treatment is continuing is essential. We are not Super-people and it is unfair to expect yourself to be. It is best to have an in depth conversation with your medical team to find out exactly what kind of side effects your treatment plan is likely to yield, that way you will be able to head into it with your eyes open and, hopefully, make arrangements for assistance in tasks you’d have difficulty with while treatment is ongoing. My oncologist was brilliant with this. He told me exactly what to expect (as they all should) and I always left his office feeling empowered with knowledge and a sense of unwavering confidence in his judgement as well as my ability to handle what was coming. Setting smaller, more realistic goals for yourself while undergoing treatment, no matter how intensive, and achieving those goals should do wonders for your confidence and positivity at a time when you need both.

# 10 Accept the diagnosis, not defeat - Its undeniable that when you first hear the word ‘cancer’ a certain level of shock and disbelief is completely understandable and normal. The time it takes to accept the diagnosis and all that it entails physiologically, socially and emotionally can vary greatly depending on the individual, type and staging of the cancer. This is especially so if there were no overt symptoms that we typically associate with cancer (ie: noticeable lumps, changing freckles or moles, pain etc) and/or the diagnosis comes as a complete surprise. It was my experience that after I had accepted my diagnosis and the obligatory shock had worn off, I gained an almost calm rationality and a determination to do whatever it took to defeat the enemy which allowed me to feel as though I was actively participating in the formulation of the ‘battle plan’ with my doctors. Things move exceptionally quickly once the initial diagnosis is made which leads to many people feeling overwhelmed and lost in the process. Unfortunately, there is no recipe for acceptance that I can dole out and it is a road that each individual must navigate for themselves but some great places to start would be talk to other sufferers/survivors and find out how they dealt with being in your situation. You can do that on the AYAC website/facebook page, talk to family/friends who have been in the same situation or discuss it with your medical team who might be able to point you in the right direction and of course I’m happy to help if I can.

Apologies and Objectives =)

My sincerest apologies for my lack of updates since my last post! Between vacations with family, continued Nepal planning and a return to university I have been thoroughly distracted. However, during my absence I’ve been considering exactly what it is I’m hoping to accomplish through this blog and how to go about achieving my objectives. At this preliminary stage, I’ve reached the following fundamental aims:

1) To document the outcomes of my cancer-induced changes in perspectives and goals. 

2) To regularly chronicle my recovery from cancer, both physical and emotional, in order to provide a resource for others in the same/similar position as I was/am. 

3) Most importantly, to assist other sufferers/survivors in any way I can

For me, cancer completely changed my outlook on life. Rather than being ‘happy’ simply existing, I am now determined to actually LIVE my life and do, see and experience everything I possibly can. I have already got some ideas for some trips after Nepal which I am intending to blog about on here in order to demonstrate some of the possibilities of post-recovery life and, with any luck, provide a positive ‘light at the end of the tunnel’ story with my own personal experiences. 

Now that I am just over three months from departing for Nepal, I am anticipating a return to the gym in order to physically prepare for what I am sure is going to be one of, if not the most, physically demanding adventures I’m ever likely to face. I’ll be sure to post about how things are going in that department and any progress I’m making on the road to recovery both physically and psychologically (which is equally as important, yet often overlooked).

In terms of assisting survivors/sufferers, I aim to blog about certain issues that the cancer experience can bring up for people. I hope I can create and maintain an open dialogue about issues and show that none of us are alone. Most of us bound by some common consequences incurred in the battle against cancer and I hope to be able to pass along some of the tips I came up with to deal with them and share other tidbits that I have picked up along the way. I’m always open to suggestions so if you can think of anything else that would help, I’m happy to oblige.

Watch this space!

Callum 

My Story (Part one)

Cancer and I

Hey there, I’m Callum. I’m a social science student majoring in sociology and anthropology. I love to travel (as some of my photo’s will attest), read, spend time with my friends, listen to music and generally experience life. My main motivation for blogging for the Australian Youth Against Cancer organisation is to create a dialogue/resource for guys to learn about testicular cancer, something that men should be very aware of yet the subject seems to lack a fair amount of public attention. It is also a massive goal of mine to help provide support for sufferers and survivors of all kinds of cancer alike. So, here it goes…

 My story begins in February 2011 when I noticed that things weren’t sitting right down stairs. Before this, I had noticed a change in size but I wasn’t sure if I was imagining it or not and even if I wasn’t, I’d heard that a slight disparity in size was common so I thought nothing of it. It wasn’t until February that I performed a self examination after I’d consciously realized that something was amiss. Through that, I detected a nodule that wasn’t there before, several bumps and that the entire testicle had solidified. I went on google (the preeminent source of information for any youth!) and looked up my symptoms. Even though I found many other causes which I considered far more likely, I decided to make an appointment with my GP as I couldn’t rule out the possibility of cancer and early detection is VITAL. 

(^ My friend Alice and I in Trafalgar Square, London)

Seeing the GP

My GP sent me for scans of that region and my groin. The scans were fairly awkward, I won’t lie, but considering the risks it is vital that they’re done anyway. We picked up the scans and I made another appointment with my GP to discuss the findings. In the meantime I went about my daily business, even paying for a trek to Everest Base Camp in the Nepalese Himalayas and a beach vacation in Southern Thailand for later in the year. Confident that I’d be exonerated of anything too serious, I went by myself for my appointment a few days later. This is where, for me, things got a bit more serious. He told me that the scans had detected two neoplasms (tumors) and that the consulting radiologist and queried testicular cancer. From here, my GP asked me to wait in the surgery for the office nurse to start work and we’d go from there. I called my mother to let her know of the developments and she came from work to be there. The nurse made an appointment for me to get urgent scans of my pelvis, abdomen and chest and an emergency consult with a surgical urologist. My doctor was careful to say that all this was purely precautionary at this stage and that I’d find out more from the specialist, though that did little to stem my growing concern.

My Story (part two)

The Specialist

It took just over a week to get into the specialist, but he was well worth the wait! The wait itself, however, was thoroughly unpleasant as it is hard to stop the shock, disbelief and eventually the natural fear and concern from pervading your daily thoughts. Thankfully, my second batch of scans had come through clear of any other tumors so if this was cancer (and at this stage it still was an ‘if’) at least I’d caught it early which did ease the worrying somewhat. When I got into see my urologist, he told me that in the overwhelming majority of cases that present like mine, cancer was the cause. He also told me that I was in the prime age category for testicular cancer (14-30 y/o), which dumfounded me completely. How could I have not known about this? He then showed me the scans and for the first time, I was able to see and understand what I was up against. The entire testicle was now cancer, the nodule I initially felt (which is what I thought was the cancer itself) was in fact a second tumor and the bumps were calcifications of the cancer. He said that the only way to be certain of this diagnosis was to have an operation called a radical inguinal orchidectomy which would remove the tumors in order for them to be biopsied and would include the placement of a prosthesis. He scheduled me in for surgery the following Tuesday (which was in 6 days time) and sent me to get some urgent blood tests.

For me, waiting was and still is the most horrible part of the experience. I hated not knowing what I was dealing with, if it was benign, malignant or if it was even cancer in the first place! I knew that if I just had some idea of what it was, I could deal with it. Up until this point, I had not told my family (aside from my mum) about any of this under fear of worrying everyone unnecessarily, however, now with a more concrete diagnosis the time had come. I let mum do it as it was not something I particularly wanted to deal with at this stage, I had so much to process. Things were moving so quickly, it was quite overwhelming. A few weeks ago, I’d only noticed a slight change in positioning and now I was scheduled for surgery for what was likely cancer! It is a lot to take in during such a short time. Growing up, I was very close to an aunt who had battled bowel cancer for thirteen years before it claimed her life in 2009 so I drew inspiration and courage from her memory which helped an enormous amount. I also began reading as much as I could on testicular cancer and finding out about all the treatment strategies. Through this, I discovered that compared to the likes of breast and prostate cancer there was little information or awareness on the risks of testicular cancer. If I didn’t know half the information I was now learning, it is highly likely that other men didn’t either! I had also decided to watch as many medical programs as possible in the hopes of catching a story about testicular cancer (though I would settle for any kind of cancer to gain an idea of what treatment could be like for me) and it was because of this I happened to be watching the episode of ‘RPA: Where are they now?’ that featured Chris Boyd’s story and how he founded AYAC. I was inspired by AYAC’s goals and decided to join the facebook group and through that I started talking to Chris himself which set this whole thing in motion.

(^ Myself and three awesome friends I met on my eurotrip)

My Story (part three)

The Surgery

Thankfully, my amateur research had made the time go much faster and before I knew it I was sitting in the surgery waiting room of Gosford Hospital with mum. To say that I was nervous would be putting it mildly. Up until this point, I had never been sick in my life! I’d only needed blood tests one or twice and my only bother was the occasional cold during flu season. When my name was called, my stomach dropped but I knew what had to be done. Having a slight phobia against veins, I was dreading the cannula more than anything but it was over (relatively pain free) and I was hopeful that I wouldn’t end up remembering it thanks to the anesthesia anyway. However, much to my chagrin, this did not end up being the case. The last thing I remember was being wheeled into the OR, and my surgeon later told me that I was in very high (anesthesia induced) spirits. 

I woke up in the recovery ward about an hour or two after this point. The surgery itself is fairly routine and only takes roughly an hour. I was in absolutely no pain at this stage, thanks to the very awesome pain meds they’d given me. I was required to stay in hospital overnight which I was quite undaunted by, keen for the new experience. My nurses and doctors were awesome. My pain was managed very well and it wasn’t until that night that I felt any pain at all. I needed to go to the bathroom and, ambitiously, I decided to walk there unaided. I would advise against this! It hurt! But it did give me some indication as to what the next few weeks would be like. I saw my surgeon before I was discharged and she said that the operation was a complete success, the tumors had been removed and a prosthesis had been substituted in its place. I was given strict instructions to limit my movements once home and take plenty of rest. She also said that by the looks of the tumors, they more than likely were cancerous but that I’d need to wait for the biopsy results for conformation. 

(^ High in the Swiss Alps)

Post-Surgery Waiting

This was undoubtedly the worst part of my entire experience. I absolutely HATE waiting. The pain was thoroughly unpleasant and I was required to take panadine forte to combat it and  antibiotics in order to stave off an infection around the wound or prosthesis. Moving (even a few inches) was very uncomfortable and walking could only be done at a slow, shuffling pace. I was ambitious and tried to get up and move whenever I needed to but I strongly suggest that you work from your own pace and be very aware of your new temporary limitations. The worst part was still not knowing though. It was all well and good to have an idea of what you’re up against but a definitive diagnosis makes a huge difference. I don’t deal well with uncertainty or ambiguity. After what seemed like an eternity (in reality, two weeks), it was time for my follow up appointment. My wound was healing nicely which was a relief, but I was primarily after my results. Seminoma. The answer at last! I never thought that relief would be what I felt after hearing that I’d had malignant cancer growing inside me but by that stage, for me, any news was good news! After getting the all clear from the surgeon, I was told I was being referred to an oncologist where adjunctive therapies (‘further treatment’ in regular English) would be discussed. I left the hospital and I had a name, an enemy, something to fight and that is what made all the difference. 

My Story (part four)

A Change for the better

I now had to wait for the oncologist appointment but it was not nearly as bad as waiting for the follow up appointment with the surgeons. This is the point where my cancer journey turned from being a huge inconvenience to what I now consider to be among the greatest experiences of my life. Now I had my foe, I found determination and a fighting spirit I never knew I had. Rather than cancel my end of year trip to Nepal and Thailand, I was now resolute in my desire to defeat the cancer, regain my health and still go on my trek. I have never been more certain of anything in this life. My perspective on things changed, as cliche as it sounds, as one cannot help but reflect upon their life up until this point and decide on the direction of their future. Things seemed clearer to me and I couldn’t help but feel positivity and invigoration permeating from my very core. I discovered a previously dormant love of challenges that I knew I needed to explore and would help me through this experience. But most of all, I found a steely determination to make 2011 the greatest year of my life!

Chemo

I went in for my oncology appointment about a month after the post-surgery follow-up still possessing the incredible new attitude I’d discovered in the meantime. My fantastic oncologist outlined my treatment options, he said that since my cancer had not had a chance to spread elsewhere I now had the choice of whether or not to have chemotherapy. The benefit of having the one off dose of carboplatin chemotherapy would be that the chance of reoccurrence would diminish from roughly 30% to as little as 1-2% though it would be likely to affect my fertility and could have other unseen repercussions. He also outlined the sperm banking option which would act as a fail-safe should I proceed with chemotherapy and wish to have children later. I would highly recommend that someone in my position take this option! I decided upon having the chemotherapy. I was fortunate in that I was able to get into have it just before Easter, after seeing my oncologist one more time for him to give me the final okay. I was given a cocktail of drugs for after my treatment; Emends, Motillium and Dexamethasone mainly to fight the nausea. 

(^ Monaco)

The morning of my chemotherapy, I took my Emends as instructed and made my way to the hospital. The nurses put the cannula in and I started treatment. To be perfectly honest, I don’t remember much about the chemotherapy itself. After I was given phenergan, I was so drowsy that I drifted off for most of the treatment. After it was done, I was taken home looking like Voldemort (with hair and a nose of course) and I’d never felt so weak and tired in my life. By the afternoon, I started to feel sick. Thankfully the medication prevented any food I had from reemerging on me but I constantly felt like I was on the verge of vomiting. In the following days, I had nausea and headaches but both seemed to ease by the fourth day and weirdly enough, my appetite actually increased during this period. It was like my body was telling me what it needed to recover and I was more than happy to give it to it. From then my main issue was with lethargy and ‘chemo brain’ but after a few weeks, both have dissipated significantly. 

My Story (part five)

The Road to recovery

As I type this, it has been roughly a month since I’ve had chemotherapy and roughly four months since my self-examination started this whole saga. I had my oncologist appointment eight days ago (10/7/11) during which he revealed that my tumor markers have returned to their normal range and my white cells are replenishing nicely. At this stage, it looks like I’ve defeated the cancer. There will always be a small chance of recurrence and it is something that I’m going to need to remain vigilant of for the rest of my life. I’ve started to try to regain my vastly damaged fitness by going for walks and hikes. I know it is going to be a long road ahead but with my new positive attitude I know that anything is possible. I still plan to make it to Everest Base Camp in November and I cannot wait to take on that next challenge. Cancer sucks, that is undeniable, and I was incredibly lucky that I acted as soon as I did which prevented my situation from getting a great deal worse (I cannot stress enough the importance of early detection! Remain vigilant). I guess I tried to make the best of a really lousy situation and I consider myself successful in that task. All in all, I count this as among the most powerful experiences of my life. The positives that I have gained from this experience: a new appreciation for my amazing friends and family, a great new perspective on life and a brand new passionate desire to actually live my life and help others, make all the negatives I have endured in the last four months totally worth it. I can now proceed in life with a sense of purpose and knowledge that I can overcome whatever challenges lay ahead for me and for that, I’ll always be thankful.

I hope my story helps.

Callum