Up and Downs

It's been a little while between posts but when you're riding the ups and downs of the treatment and feeling so exhausted, the thought of stringing even a sentence together seemed too much to ask.
Since the last post I've been in and out of treatment thanks to the white blood cell count constantly fluctuating, one day I was under the minimum at 0.8 and then two days later I was up to 1.8. Even thought it's important to me to keep a routine so I can manage my day, the blood tests are unpredictable and when you walk in to the hospital each day you have no idea whether you're going to staying there or being told to go home and rest up.
The intense treatment was to be administered over 20 week days, 4 weeks, but with the delays it's taken a bit longer than anticipated. Though I am getting used to it, I now manage to sleep through whilst the hospital staff administer the treatment, I can't say I won't be happy to get this stage over with. The week after week of treatment does start to feel as though it's draining you and there now feels as though there is a constant dull ache that lingers. It really takes it out of you each day after the effects of treatment kick in, at night I'm tired and the appetite I used to have just isn't there any more. After today's treatment I thankfully have two more days of intense treatment to go.
In the mornings though when I am almost back to normal I spend the time running errands, helping out a chippie friend with his paperwork and doing the house work so I am mentally occupied and don't spend the time sitting around and over-thinking the entire thing.
I did start out treatment on 44million units but with the white blood cell count constantly fluctuating and holding up the process my dosage was dropped half way through the treatment to 38million units so I could attempt to get through a full week of five consistent days without any interruptions. Week 2 has been the only full week of treatment I've had. Since then I've managed to have treatment for two or three days in a row before another test result holds me up. It's frustrating as I should've been finished with this already but there's no point letting it get to me, if I try to push my limits I could only end up in a worse condition. I had the opportunity to go to this weekend's game between the Cats and Freo but that means with a crowd that big I could face the risk of being around someone who is sick, and as my white blood cells are low that means it's even more likely I could catch something. If I did catch something I'd wind up with an infection and that would send me straight in to hospital to be on a drip, just not worth it. As shattered as I am to be missing out on seeing such a big game as well as the countless other things I've had to forgo whilst on treatment, I tell myself what it is is what it is and I have to make the best out of the situation I have at hand.
On a good note though GO CATS and have a great weekend.

The Set Back

Come mid week, I was starting to get used to the routine of treatment. Every afternoon I would go in to St. John of God, three hours later I would be out and every Monday and Wednesday I'd also get my bloods checked to ensure everything was still running well and on track. Going in Thursday I was expecting just another normal day until I sat down to chat to the oncologist, he told me treatment had to be put on hold. I was disappointed and frustrated. After all this waiting I was hit with a set back only four days into the treatment, how much longer will this take to properly get underway.

In order to have the treatment, my white blood cell count must be at 1.00 or above. The results from Wednesday's test came back that my count was at 0.70. Whilst I was there, I was tested again to see if my count had risen again after the 24hour break but it had dropped. I was down to 0.50. I couldn't help but be a tad disheartened. I wasn't prepared for the treatment to need to stop, let alone this soon into the whole process.

Just to top things off I was practically quarantined, to avoid the risk of infection while my white blood cells were repairing. I was told I couldn't be around people, or large numbers of people, just in case, until Monday when I went back in for a review and to potentially resume treatment. I was shattered. I knew the weekend that was coming up was the weekend that the Geelong Football Club and the Geelong Past Players Association had organised a tin shake at the Geelong v Port Adelaide game to help me out by collecting donations from those going to the footy. Of all weekends. I was really looking forward to going so I could catch up with all of those that were volunteering on the day as well as to say thank you to those who were donating, but because of this set back I couldn't even go near the crowd. That was hard because this whole effort was organised for me and I couldn't even be there to say thanks. Thankfully Noreen and the girls went along to tin shake and help out and pass on my thanks. The best I could do was watch the broadcast whilst sitting at home.

Thankfully the symptoms had settled down at least as I wasn't having treatment, my appetite came back and I wasn't so cold or tired though the weekend of being virtually locked away was a bit testing. 

I went back in yesterday, Monday, to see where I was at and I got the good news that I could resume treatment. It was a relief to know the set back was only short term and I could pick back up where I last finished. I'm back into my routine of treatment and the side effects are making their way back but I'm just happy that I'm back on track. Today when I went in I was told I didn't need the Saline flush so I was out an hour earlier, that was certainly a welcomed surprise. No one likes being in hospitals longer than they have to. I'm hoping that was my one and only set back and I can now keep moving forward with all of this.

Day 3 of Treatment

The last week has been quite the experience. After having the Hickmans line inserted last Thursday, I got to start my Interferon treatment this week. I was extremely relieved that it was finally underway. I was nervous in the lead up, I didn't know what to expect or how I would react, physically or mentally, to all of this but I knew I had the love and support of Noreen and my three girls so things would be okay.

Walking into the St John of God's hospital I came to terms that this would be almost like a second home to me for a good part of the year ahead, it's daunting, but I keep reminding myself that this has to be done and that I'm in good hands so everything will work out. I went in for my first round of treatment on Monday. I will be going in every day now for the next month and then less frequently after that. The process takes around three hours all up, it starts with a Saline flush of the Hickmans line, an anti-nausea drug, Panadol, the Interferon - which takes thirty minutes to administer, then to finish one litre of Saline - which takes another hour. It's a long process but after a few days of it I'm now used to it and I've accepted the fact that this will be a part of life for the moment. The fact that the atmosphere at the St John of God hospital is so great and that the staff and patients are really friendly makes the world of difference.. They're all happy to have a chat and discuss their treatment and that certainly makes it much easier to go in every day.

Once I'm finished at the hospital, that's where the fun begins with side effects. By the time I get home the shakes have started to kick in. Almost like clockwork, six hours later the hot flushes and spikes in temperatures hit, anything over 38degrees means I have to start monitoring my temperature to ensure it doesn't stay above that for a prolonged period of time, though all of this, plus the persistent head aches and lack of appetite are all standard when being treated with this type of drug. It really knocks you around each day and at night once you start to get tired and are looking for bed it's normally time for some more medication to ease the pain. I normally wake up a couple of hours later in a muck of sweat and have to get up to get changed but that's all part of the process.

Once I get up in the morning I am nearly back to normal, I'm keen to have a good breakfast so I'm full before treatment starts and I loose my appetite again. To keep on track I focus on maintaining a routine by getting myself up and my beautiful wife and daughters lunches ready for work and school before I do the school run. Then I start to get myself ready for the next day of treatment. One day seems to roll into the next at the moment, and as the weeks roll on the side effects won't change too much but I need to be very vigilant about how I'm feeling as one of the bigger side effects from the Interferon is depression. That's something I very much want to avoid as it could be a terrible downward spiral that could make this whole process a whole lot worse than it already is. I keep reminding myself that staying positive and putting things in to perspective is important to get through this.

If anyone reading this is feeling a bit down please know that there are avenues for you to seek professional help. 

The Hickmans Line

On Thursday I had the Hickmans line inserted. The line was inserted through the base of my neck and exits through my chest - parallel to the positioning of my heart. Sitting in the waiting room, I was understandably nervous but at the same time I was very much looking forward to starting it all. I knew that once this was underway, I could relax a little knowing that the entire process was all systems go.

The surgery itself was a touch uncomfortable. Even though I was under local anaesthetic, I could still feel the odd sensation of having the line pulled through under my chest, it was like something I've never felt before and would probably not want to ever feel again. The procedure was all done and dusted within half an hour. Post surgery I had a follow up discussion with the oncologist to cover the care practices I needed to employee while at home like what to eat and the fact that I now can't use metal forks and knives - the plastic set from the picnic bag is all I can use to avoid the metallic taste in my mouth, what I symptoms or reactions I needed to look out for and how I needed to treat the dressings. I felt good after the procedure, I was expecting to feel a lot worse. Having the piece attached was naturally uncomfortable to deal with in the first instance but now that I'm used to it it's not so bad.

PLEASE NOTE: VIDEO BELOW CONTAINS IMAGES OF THE SURGICAL PROCEDURE. VIEWER DISCRETION IS ADVISED.

The Journey So Far

This all started after finding a small lump under my right arm. Not sure if this was by fluke or thanks to someone being vigilant about checking their body but for peace of mind I went to my GP the following day to discuss what could be the cause of it.

During the check-up he advised me that due to my work as a builder the lump could very well just be an infection caused by a splinter or something similar. He told me that if it's still there in five or six weeks that it would be best to get an ultrasound and biopsy done to cover all bases.
It was still there after six weeks. I was booked in to have the ultrasound and biopsy. The results came through and it determined that the cells under my arm were now considered suspicious. It's not what you want to hear but it was important to still be in good spirits as I have a wife, Noreen, and three daughters and I needed to stay strong for them, and after all the worse was not yet confirmed.

After finding out the cells were suspicious I was booked in to have a Pet scan and CT scan. These scans confirmed my worse fears, it confirmed that I had Cancer. It was naturally devastating as my whole world had now turned upside down, I could no longer work, my wife Noreen had to now go back to full time work to provide for the family and I had a good stint of treatment ahead of me. Though as I got on to the lump quick enough, I was lucky that it was only confined to my right arm pit, which in the scheme of things was a great relief.
Surgery followed on the Friday 7th June to remove 33 lymph nodes. The surgery went well and when I woke up in recovery I had a lymphatic drain inserted up into my arm pit to drain the excess fluid from the lymph nodes. I had a bag attached to the end of the drainage tube which I had to carry around with me everywhere, to work when I was calling football matches for K-Rock, to the shops and to pick up my girls from school. It wasn't ideal but I knew it was short term so I put up with it. After three and a half weeks the surgeon was happy with how much fluid had drained and removed the tube and bag.

Since then all has gone well. I've started physiotherapy and have had regular check-ups with the surgeon to monitor my progress. For the next stage of treatment I was referred to oncologist Adam Broad to be advised on what was due to happen next. He outlined what was necessary and told me that there would be at least a year of treatment ahead. The treatment I will be having is Interferon and it's administered through a Hickman's Line, which I had inserted through the lower side of my neck today. I must admit that it came as a bit of a shock to be told that the treatment would last that long. It really begun to sink in how big this had become.

I had naturally told my family and close friends what had been going on but word was starting to get out in the local community as I guess I'm a familiar name after playing football for local AFL team, the Geelong Cats and a special comments speaker for football matches on the local radio station K-Rock.
I thought the best way to approach this was to go public with my news, so everyone would understand exactly what has been going on and primarily so I could use the small platform I had to raise awareness in the community of the risk of Skin Cancer and how important it was to have regular check-ups to avoid something like this.

I was given the opportunity to share my news before calling a Geelong Cats football game on K-Rock. K-Rock also announced the news on Facebook and the messages of support that flooded in was overwhelming but I was so grateful for all the kind words from friends, associates and strangers. After the announcement, I was asked for an interview with the local paper, the Geelong Advertiser, and requests for interviews with television news crews followed as well. It was a bit full on but I knew it was the right thing to do in order to reach the maximum audience and gain greater awareness about the risks of Skin Cancer and how to potentially avoid it.

I've had a few weeks in between all this waiting out for my treatment to start and to avoid dwelling on the negatives I've kept myself busy with assisting mates, who are also builders, with paperwork and signing up to study business management through the footy club as well as doing things I've never had the opportunity to do such as be the one to get my girls ready and take them to school. I knew it was important to stay positive about this for my family and for myself. At this stage there is looking to be a light at the end of the tunnel so I need to keep focusing on that.

Having the Hickman's Line inserted today, was the start of my preparation for treatment and on Monday 5th August, I will start my awaited treatment. After Monday I will require check-ups five days a week for the first four weeks. This will be very intense but I am hoping to document the good and bad experiences of my journey so you can understand just how important it is to take the precautions to avoid something like this. I'm very much looking forward to starting this part of my journey and jumping on the road to recovery.