I’m due to go back to work full time in April, it seems a little bit poignant that today is also the exact day 2 years ago that the shackles came off, my discharge forms were signed and I was finally allowed to go outside, to leave hospital, I was finally allowed to go home. It sounds like I’m talking about prison, and in a way it actually was, although to be fair the food in prison is probably much better. It was March 20th, I got to tick the last day off my calendar, my transplant was over and I was allowed to go home, well, to be specific I was only allowed to go to my girlfriend’s family home as it was within 20 minutes to the hospital, I wasn’t allowed to be further from the hospital incase of an emergency, but it was my home away from home.
The day after being discharged Niamh asked me if I wanted to go for food nearby as a celebration for being finished and my very quick response was that I waned PIZZA! Off we went to enjoy some awesome pizza to celebrate not just me being discharged from hospital, but a celebration for us as a couple, being able to be together again outside of hospital, getting a little bit of a taste of some normal relationship stuff!
I remember leaving St. James’s Hospital, stopping for a brief moment before walking out the main door, my suitcase in tow, I was very aware of the apprehension of actually going outside in to the real world, in to the fresh air. Out I went, I was free, I was done, done with chemotherapy, done with radiation, done with the transplant, it was time to go home. I looked up at the sky while taking a deep breath of fresh air, something I wasn’t able to do for 5 solid weeks, and thought to myself how lucky, relieved, and thankful I was to be going home.
Returning to full time hours
It’s a huge achievement for me personally returning to work full time, and I feel more than ready for it, not to say that it’s going to be a walk in the park either. Some days when I reflect on what I’ve been through, or a memory of something that happened while I was in hospital strikes fear in to my mind or my body, I think to myself, the fact that I’m back in work at all is an achievement in itself.
I was actually due to start back full time on Monday, the start of April, however I picked up a bad case of sinusitis and because my body was low due to the infection I actually came down with facial shingles! It is the first time I have ever had shingles and for anyone else out there that has had them before, I feel your pain, I have been in utter agony the last week, I didn’t make it in to work, and my full time start date has been pushed out 2 weeks due to it. The shingles is apparently a common side effect in the first year or to for any post transplant/chemotherapy patient, cancer seems to be the gift that just keeps giving.
Every now and then while out with a friend or chatting to someone I hear the comment “I don’t know how you did it, I couldn’t have gone through what you had to go through” it sometimes resurfaces and shines through the enormity of what I did actually have to go through, and I have to say, it’s incredibly nice to hear, because it just makes me more and more proud to have come as far as I have done from the deep depths of darkness.
Appearances can be deceiving
Mentioning above about what I had to go through, it’s an interesting point and one that has bothered me since the beginning, the lack of choice. One of things I absolutely hated most about cancer was that lack of choice, my freedom of choice was ripped away from me. If you don’t have this chemotherapy you won’t make it, if you don’t have this radiation therapy there is a good chance the cancer will come back and you won’t make it, the full body radiation may cause you to get other types of cancer in the future i.e. skin cancer or lung cancer (The radiation specialist kindly (had to) listed out all the different types of cancer I might get in the future due to the full body radiation I had to have, including % of likeliness), but if you don’t have it now the cancer may come back and you won’t make it, you need the bone marrow transplant otherwise you won’t make it. I’m not really sure where my freedom of choice was in any of those scenarios, well taking in to consideration that I value my life and want to make the absolute most of it so would rather be here to do that. That was tough, and to be fair it still is. Cancer doesn’t just go away after you get the all clear, it’s evilness lingers, I guess as time passes it will drift further and further away, however it’s evil head will still follow from a distance, just waiting to remind you of that fear or doubt anytime you just don’t feel right.
I’m two years on but yet I am still having to deal with what I’ve gone through on both a physical and a mental basis far too often for my liking. Perhaps I was quite naive to think that after 2 years I would be very well recovered, and that I wouldn’t have to be dealing with the physical repercussions of what my body went through that much at this point, yet I was sadly mistaken. I think I just need to remind myself of what my body had to go through over the course of the last few years to ground myself again.
People often tell me how well I look now, or how great it is that I’m back out running, how right they are, at the same time I want, or rather I need people to know that the physical and mental battle continue in a big way for me, it’s just something that I don’t talk about as much anymore. I know that we all have our own stuff going on and I’m very aware of that, but I guess what I’m trying to say is that no matter how well I look or how it may appear to everyone on the outside, the battle rages on on the inside, and like everyone, I still have my tough days. At the same time, I know that those close to me naturally refrained from opening up to me about their struggles for such a long time due to what I was going through, but I’m so happy to be able to be there for those people now, to help those who have helped me, after all, that’s what it’s all about, helping each other through the hard times.
I thought last summer was going to be my summer, my summer of recuperation and my leap forward in to a season of improvement and strengthening, and around this time last year I was flying, but once April arrived so did my post transplant 6 month inoculation plan, and that was that. Due to the process of the bone marrow transplant I essentially had the body of a new born baby and with that the immune system of one, all my previous inoculations throughout my whole life wiped out, and therefore I needed to receive every inoculation I’ve ever had once again over a 6 month period. It literally wiped me out for the 6 months, then came winter and with that so did the attack on my already weakened immune system.
I quickly realised there is no leaping forward when recovering from cancer, it’s slow progress with a lot more bumps than I anticipated. On a positive note, I am getting better, I am getting stronger, my running is improving, and I have certainly noticed that I need less recovery time as I did a year ago because my immune system is rebuilding all the time. Now that winter is just about over, maybe this summer will be my summer, my summer of moving forward, no leaping, but slow progression in to a better life, we will see.
New York City!
In exactly 4 weeks time Niamh and I are off to New York for a week, we absolutely cannot wait, we deserve this trip so much, a week to catch up with each other, our relationship, and as I said to her only yesterday, it is hopefully our long awaited fresh start, an awesome trip followed by the summer! We are together over 4 years now yet 3.5 years of that time has been a constant struggle, we need a break from it all, some happiness, we could do with that fresh start, we deserve it, she deserves it!
I feel we still haven’t had that fresh start we need. To think that we had to “celebrate” our 2 year anniversary in St. James’s Hospital days before my bone marrow transplant, our 2 year anniversary and I was already battling cancer for the 2nd time, battling to stay alive so that I could be there to give her that happy life she deserves. My heart breaks for her because after all she has had to go through, she deserves to now finally be able to enjoy our time together as we look to move forward.
So roll on New York, we can’t wait for it, to see the sights, do some shopping, eat some awesome food, have a drink or two in some funky bars around the city, and needless to say, I’ll be taking my runners with me to hopefully catch a sneaky run or two while we are there.
June 14th 2019
On the 14th of June it will mark 2 years to the day since I got my 100 day post transplant scan all clear result, the result that my life depended on, the result that would answer the question of whether or not the transplant worked, needless to say I will forever be both relieved and thankful that it went my way, I had to fight hard for it, we all did, but it went my way.
Every post cancer patient has their time target, that number of years you have to manage to stay alive until you can be considered in remission, or for it to be considered a time where you can be deemed as safe as you will ever be. June 14th of this year is that time for me, my specialist told me that if I make it 2 years from my post transplant all clear scan, I would have a 95% chance of survival. I asked if my bone marrow transplant was just something that would keep me alive for a particular number of years or if it was supposed to be a for life type of scenario, thankfully her response was that the transplant was due to be for life!
Every year Niamh and I will celebrate on June 14th, but this year will be extra special as it’s my target, after that we can only hope that life is fair to me, to us, to my family and friends, because it’s not just me that has had to go through this battle, it’s all of us.
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