Never Give Up: Chris’s journey with Non-Hodgkin’s Lymphoma

Chris Proby has written for us a few times here on Happy Magazine and just recently wrote an update to his initial story for us. In it, Chris shares with us all the details of his diagnosis and treatment for Non-Hodgkin’s Lymphoma, what he’s learnt along the way and how he’s doing now, four years on.

My name is Chris Proby, I’m 35 years old and I’m from the quaint village of Inch, just outside of Gorey in Co. Wexford, but I moved to Dublin in January of 2015 to start a new job.

Your diagnosis story

It was 2015, I wasn’t long living in Dublin after starting a new job that January, I also met my amazing girlfriend soon after moving to Dublin, everything was going great. I was big into running, I completed the Manchester Marathon in a time of 3:06 that April as part of my training with the aim to take on the Cologne Marathon in October to attempt my sub three-hour goal. While training one summer’s evening in June someone in the park accidentally hit me really hard on my leg with a football, I didn’t think anything of it at the time, but over the coming days and weeks I developed severe pains in the same leg that eventually led me to getting an MRI to try and find out the source of the problem.

The MRI revealed a sizeable tumour in my left leg, exactly where I was hit by the football. Further tests indicated that it was cancerous and I was diagnosed with an aggressive form of Non-Hodgkin’s Lymphoma. A full body scan indicated that it had spread throughout my whole body and most worryingly up to my sinus in my head. It turns out that the guy who accidentally hit me with the ball probably saved my life without even knowing it. My specialist said he would have to treat me hard but that success rates were high, he told me he would get me right and I believed him. I told him that he had to get me back running, he said he would, and that is what I held on to every day to get me through.     

How did you feel when you were first diagnosed?

I was in total shock, I nearly didn’t believe it when I was told. I had only run a 3:06 marathon a few months prior to my diagnosis, I was 32 years old, non-smoker, healthy, fit as a fiddle, I just couldn’t understand or believe it, but before I knew it I was admitted and started my treatment. You have to be a pretty fit athlete to run a 3:06 marathon so still to this day it astounds me as to how I managed it considering I had an aggressive cancer taking over my body! It just didn’t seem to make sense to me at all, I seemed so fit and healthy, there were no visible signs or side effects of this awful disease and so I found it hard to come to the realisation of it all. You never think, actually you hope that it will never be you, I would think to myself sure why would it be me, how would it be me when I look after myself so well, but I found out the hard way that it doesn’t matter who you are in this world, cancer takes no prisoners and it wouldn’t think twice about it either.

Your treatment plan?

My treatment plan was exceptionally heavy going due to the aggressiveness of the cancer. My specialist told me that only due to the fact that I was so fit and young at the time was he able to give me such a high dose chemotherapy and radiation treatment plan, but my life depended on it due to the aggressiveness of the cancer.

I needed 7 individual weeks as in an inpatient, one week in hospital followed by two weeks at home recovering. The one week in hospital consisted of chemotherapy for 24 hours a day for 5 days straight so it was tough going. To be hooked up 24 hours a day for 5 days in a row with barely enough time to shower between cycles was incredibly difficult to handle, I like my freedom so I didn’t like that aspect of being connected for basically 5 days solid.

That process took approximately 5 months, and after I had finished the chemotherapy I had three weeks of radiation before being sent home. I got the all clear in March 2016 as practically promised by my specialist, however, just 9 months later I relapsed.

It was December 2016 when I relapsed, I was almost ready to go back to work, my girlfriend and I were just home from a dream three week holiday to Thailand, and ready to start our new life together. Just days after arriving home from Thailand I was admitted to St James’s Hospital with breathing difficulties, we never ever imagined it was because I was relapsing, in fact it was suspected that I picked up some form of foreign virus in Thailand, needless to say it didn’t go my way.

One thing I have learned about hospitals over the last few years is that you need to be proactively in charge of your treatment – your appointments, ongoing and follow-up care (including post cancer care) and scans, the all important scans. If you don’t keep on top of it yourself it won’t always run smoothly, and your life might just depend on it!

How did treatment go for you?

I’ll be honest, I don’t actually remember much about the treatment from St James’s Hospital at all, I think I was so traumatised after relapsing that my brain just wasn’t able to process it, my brain basically shut down, I wasn’t sure I was going to make it, neither was the specialist in the hospital and so my brain just shut down. The specialist in St Vincent’s the first time around was adamant that he would get me better, that the treatment would work, but this time was different, the wording used wasn’t optimistic. It was very much a “we’ll see how it goes” type of wording, and that was scary. I can’t remember what chemotherapy I was on or for how long, but I do know I never really got back out of hospital until the end of March 2017.

I had a bone marrow transplant at the beginning of March 2017, which thankfully proved to be successful. To get me to the life-saving transplant I had to get the ‘all clear’ from cancer first, so I was basically given high levels of chemotherapy and full body radiation which luckily for me worked. If you can think about that situation, I needed a life-saving bone marrow transplant, to have the transplant I needed to be cancer free, so it was all up to the pre-transplant treatment to get me there, then there was the scan to determine if I was cancer-free and ready for the transplant, which may or may not work, I just can’t describe enough the thoughts that go through your mind, the anxiety, stress and pressure of it all.

The bone marrow transplant meant I was isolated to my room for 5 weeks solid, and that was what I found toughest, along with the side effects of the treatment of course. Not being able to go for a walk outside to clear my head or to breathe fresh air was really difficult, needless to say it was the most amazing feeling walking out of the hospital after those 5 long weeks.

Worst/best part of treatment?

The worst part about treatment for me would be the side effects, but it’s important to note that there are so many different types of chemotherapy treatments, that everyone’s differ. Hospitals can provide a tablet for pretty much any side effect you have which does help, but ultimately I did find the side effects the most difficult part of the treatment, and one which still affects me to this day is fatigue, fatigue is awful. It’s a world beyond tiredness, it’s something that affected me so badly post treatment but thankfully gets better with time, and when you learn to manage it in the right way.

I also found the isolation very difficult, being in a room for so long and not being allowed to go outside, to get fresh air, I experienced horrendous anxiety and panic attacks at times as a result of being so isolated, but it is something I just learned to cope with and work through as best as I could using a few different techniques, such as breathing exercises or by listening to calming music.

I can’t say there was a “best part” about the treatment, however, it was the treatment I received that has me here today, so I guess that is the best part about the treatment. It does remind me of when I first started receiving chemotherapy, I would look at the bags of chemotherapy hanging beside me being dripped in to my body and I felt so angry, angry that these chemicals were taking over my body. I had to realise and come to terms in my own head that these chemicals were the chemicals that were actually killing something far worse in my body to keep me alive, and that was something quite important for me to come to adjust to.

What got you through treatment?

My family, my friends, my girlfriend, loved ones, they helped me through the treatment, they were there for me every single day, I actually can’t get over the support I had. I was not a single day in hospital without someone being by my side, holding my hand, sitting by my bed while I slept, while I received treatment. Sometimes people would have come and gone while I mostly slept, just to be there for me, I count myself incredibly lucky to have all these amazing people in my life who helped me through it all.

My specialist. The nurses. Treasure them! I could not have come through this without them, they are amazing, I can’t thank them enough. I have seen first hand just how sizeable a task they have to cope with on a daily basis, they have been incredible. They are there for you all day every day, they see you on your good days and your bad, I can only imagine the physical and emotional strain they have to deal with every day, just as patients have, we are in this together.    

Battling through cancer is an incredibly emotional time, it’s an emotional rollercoaster, highs and lows, but something important to mention was that I was on a huge amount of medication every day which I found would really play around with my emotions. I eventually learned as best as I could how to deal with those emotions I was experiencing, if I found myself really upset at something that normally wouldn’t upset me I would just tell myself that it was the tablets and I’ll be ok in a while, and that really helped me.

Getting back running was also one of the main tools I used to get me through the treatment, my goal was to basically get back running after I was better, and I guess I probably used that to avoid thinking about what I was really going through or how difficult of a situation I was in. I would literally think about how I was going to get back on track with my running, or what events I would run first when I got back fit, and that really helped me. Having that goal, a focus, something to hold on to, even if they were unrealistic goals I still set them because they just kept me so motivated and determined, determined to get through the treatment and show people what I’m made of, and to show others that it can be done, that cancer can be beaten and that you can get back to what you love doing most. I had my three marathon medals hanging from my drip stand and pictures of me at my favourite running events on the whiteboard in my room, that was my motivation, and a great conversation starter with the nurses and doctors. It was my way of ensuring I wasn’t seen as just a chart number, I was a runner, a person.   

Single best advice that helped

I will always recall my sister coming up with the idea of a “carrot” to look forward to at the end of each treatment. She basically said to me that after each cycle of treatment I should have something to look forward to when I got home, something which would help me get through the week. It could be as simple as buying a few cream buns, or going out for lunch or dinner somewhere nice, a massage, a night away, a movie night at home, anything, just something nice to focus on each week, and that really helped me get through each cycle, one step at a time.

Where are you now/how are you now?

I’m actually now two years since I was discharged after the transplant, being honest, I naively expected that things would be running a lot more smoothly by now but that wasn’t to be the case. I’m certainly getting stronger and stronger as time passes, but I can’t deny that it has been a very bumpy two years!

The winters have been most difficult as my immune system attempts to rebuild itself, I just seem to keep getting knocked back, incidentally just as I thought I was finally going to clear this winter it turns out there were other plans in store for me. At the end of March I came down with sinusitis, and from that I ended up with facial shingles, a common post-transplant issue it seems. It was a fairly painful and tiring experience, and then came the final kick in the teeth, as the shingles began to clear I took a turn and was sent to hospital and it turns out I had contracted viral meningitis, so it has certainly been a very stressful end to the winter for me. It seems like it’s one step forward followed by two steps back, at the same time, when I get downbeat about it, I just remind myself what my body has had to fight through since I was first diagnosed, and the great progress I have made over the past two years.

On that positive note, after a long phased in period with work, I am about to return to full-time hours. There are times when I think back on what I have been through and feel that the fact I am back in work at all after what I have been put through is an achievement in itself. Cancer can take such an incredible toll on a person’s mental and physical state, that I can see how any person that has gone through it could find it difficult to return to work. Thankfully I have got myself back in to a position where all I want to be is back working, back to normality and the routine of what my life was before I took ill.

I’m also delighted to be able to say that I have built myself up to a balanced consistency of going out for a run approximately three times a week, most weeks anyway depending on my energy levels. I find it hugely important to ensure I balance my working week with any exercise. My priority is making sure I have plenty of energy for work, however, running is my most loved hobby and it keeps my mind and my body happy, so it’s as important for me to get out for a run, it’s just finding the right balance and tweaking it as I go that keeps me ticking over nicely.

How do you feel about your cancer experience now?

My cancer experience has been a really difficult part of my life, and it’s important to note that it doesn’t just go away after you get the all clear, it’s something you have to continue to work through in different ways on a daily basis going forward. In a way I found that I needed the support of those around me more so after I finished treatment and was discharged from hospital than when I was actually in hospital, as you have been removed from that safety bubble of round the clock care that you were so used to. I found it a bit daunting being sent back out in to the real world to rebuild your life, but like everything, it just takes some time.

Admittedly I do have a certain amount of post cancer guilt and I find that difficult to deal with sometimes. It’s guilt I feel when I see the effect my illness has had on those around me. Obviously it’s not something I had a choice with, and I’m incredibly lucky to have so many wonderful people in my life, but when I see or think about the effect it’s had on them I find it particularly difficult. I don’t think there is a whole lot I can do to make it easier for them apart from being there when they need someone, as they did for me.

My cancer experience is one that I wanted something positive to come from, and one thing I promised to do was to try and help others that might be going through a similar situation. One way I thought might help others is by telling my story, the story of a runner taken down by cancer twice but still managed to pick himself back up and get back out running, and so that’s basically how my own blog came about.

I’m also in the middle of organising a big event in aid of the Irish Cancer Society in my home village of Inch in July of this summer. It is an event that I have been planning since I was first battling cancer in hospital. I’ll be honest, when I relapsed at the end of 2016 I started to wonder was it going to end up being a memorial run as opposed to a fun run, thankfully I will be there not only as the race director, but as a participant too.

The event is a family friendly 5k/10k run and walk, I also have a kids dash for the little ones and face painting too, so I’m very excited about it. Most importantly I’m just so delighted to be bringing everyone together for a great event in aid of a great cause. It’s a really positive project to come out of something so difficult, and I can’t wait for it.

Has cancer changed you, if yes, how?

People often say to me “oh you must have such a big appreciation for life now”, and to be honest it’s something that I didn’t like to hear because I always had a huge appreciation for my life before I took ill, for my life, and of course an appreciation for those who I have around me. It got me thinking a bit though, I definitely do appreciate things more, things we might even sometimes take for granted. I went for a walk in the park recently and at the end of the walk I lay on the grass and closed my eyes, I could feel the breeze blowing and the sun shining as I lay there breathing in the lovely fresh air, something I couldn’t do for so long while in hospital. I had days, weeks, sometimes months on end where I wasn’t able to go outside, to breathe fresh air, even times when I couldn’t see the sky from my room, I would long to be outside, to be free, to be alive again, and now I am, I am lucky enough to be here to go outside and breathe fresh air and be free again, I had to fight hard for it but it was worth the fight.

Go out for dinner, meet friends for a coffee or lunch, spend lots of time with your family, with loved ones, go for a massage, go on holidays, treat yourself, treat others, live for now, live for today, because you never know when it might get taken away from you. The old saying is that you only live once, but the new saying is that we live everyday, we only die once. I stand by that, make the most of everyday!   

Chris and girlfriend Niamh

Have you changed anything in your life as a result of cancer, if yes, what and how?

I’m not too sure about that one because I feel I’m still re-adjusting to life, to normality, but one thing for sure is that I have come to realise how short life actually is and that you need to make the most of it because you never know when it might be taken away from you. I don’t use the term “bucket list” as I really don’t like it as I feel the word just has an association with death, but I think every day about where can I travel to next, or what I want to do next, whether it’s this week or next year, it’s something I’m often thinking of, things that I would love to do or places I would love to see, whatever makes me happy. I want to live every day and I want to make sure I have no regrets.   

What helps you now if you have a difficult day?

My saying is “don’t be alone, get up, get out”. I find talking helps, whether it’s talking about day to day stuff, or something specific that’s bothering you. It’s being able to open up to someone to let it out, whether it’s your partner, family, friend, it helps to just get it off the chest. It’s being able to say to someone that you’re having a bad day. It’s ok to not be ok, but when we’re not ok I find it important to let someone know, to vent, to make sure we don’t bottle it up.

Importantly, I find I just want to get off the couch and do something productive. I notice that I can get quite lethargic if I just slouch on the couch, more often than not it makes me feel a lot more tired than I truly am, and that really doesn’t help when I’m having a bad day. I tend to force myself up off the couch and do something productive, even if it’s a little job I wanted to get done around the house that’s been bugging me, and when I do something productive it definitely provides me with a little sense of positivity.

Exercise is an important one for me too, getting some exercise in the fresh air really gives me a boost. At the end of the day it’s the simple things that cheer me up, such as going out for some exercise in the fresh air or meeting a friend for some chats over chocolate and a cuppa. I’m pretty sure we all comfort eat to a certain degree sometimes and I do enjoy it, but I limit it as I find that if I overdo it, I notice that it can have a negative effect on my mental health. Yes I think it’s ok to treat myself to the treats especially on the days I feel I want or need to, but at the same time making sure it’s not too much, as I say, healthy body healthy mind.

I have also found my local Park Run in Tymon Park, Co Dublin to be a very helpful piece in my physical and mental recovery. The Park Run is an initiative where you can walk or run a 5k every Saturday morning around many different parks throughout Ireland, and indeed around the world. I enjoy going down to either walk, run, or volunteer on the day, I find it a great way to get outside, and to meet and chat to other people, I would definitely recommend it as it is for anyone. Don’t be alone, get up, get out.

Single best purchase that helped you through cancer

Honestly I have picked up a number of things along the way, but I would have to say that buying a new laptop with headphones was something I used most. It was great being able to watch stuff on Netflix, play games and just keep me occupied. I treated myself to a number of things while I was ill to help get me through the tough times. On the one year anniversary of getting the all clear post transplant scan I bought myself a drone which I find really fun, and it definitely puts a smile on my face. I love flying it and taking some amazing pictures and videos.

If you could give one piece of advice to someone recently diagnosed, what would it be?

Find a goal to concentrate and focus on for after your treatment, something you would love to do, or somewhere you would love to go and use that as a motivational tool to get through the treatment, have that “carrot” to look forward to. My girlfriend and I planned a nice holiday for when I was recovered enough after the treatment for some rest and relaxation. I would also make sure to have plenty of little “carrots” to keep you going along the way too.

Don’t forget to talk, to be open, talk to someone whether it be a friend or a family member, perhaps someone who has been through cancer already. I actually find even to this day that talking to someone who has also been through the experience of cancer is particularly helpful as they just know, they know what it’s truly like. They have so many relatable experiences or thought processes, so I really do find that helpful, and for that reason, that’s what I want to do for people now.

I want to be a person someone can talk to, a person who has fought through the most difficult chapter someone might face in life and come out the other side. It’s why I write my blog, and also why I have volunteered to be a support person for the Irish Cancer Society, to be available for someone diagnosed with cancer to chat to, and hopefully to motivate or inspire them to look forward with positivity and to never ever give up, as my motto goes #NEVERGIVEUP.

Thank you Chris for sharing your story with us.

You can find out more about Chris and his Never Give Up race on his website www.nevergiveup.ie

1 Comment

  1. May 5, 2019 / 10:05 am

    A great life story, very inspiring!

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