Only 2 weeks to go :)

A Working Man

I have realised that it’s been about 2 months since my last post, and I guess that’s a reflection on how crazy my life has been over the course of the past few months.

On a really positive note, I returned to work on the 18th of June FULL-TIME after 3 months out sick. I’m so happy about that, it was back in March I was just about to go in for my first week of full time work when I was struck down by Meningitis and so it never happened, but thankfully I’m now back at it and I am hoping that I can get a good run at work going forward. It’s so nice to be back to work Monday to Friday like the rest of my work buddies, I feel I’m just one of them now, back being able to chat and talk about the usual day to day stuff, back to reality. It’s been a long time coming but at least I made it. It is taking a little bit of settling in time getting up to speed, but I know that I’ll be flying in a few weeks.

The Never Give Up 5k/10k

I can’t believe it’s only 2 weeks away! It’s a project I have been working on for a good 9 months now, but it’s safe to say that it’s the last couple of months that I have been working flat out on it. It’s amazing how much needs to be taken care of when organising such a big event. The timing of the event, down to the volunteers, the food, safety measures, advertising, the list goes on and on, and it has kept me very busy indeed. It’s only 2 weeks away now, and I’m very excited about it.

It’s going to be a very special day for myself and my family, as I celebrate my 2 year all clear anniversary, but not just that, it’s going to be a special day for so many other people who are taking part for so many different reasons. I am just so happy to be putting together this special event which will hopefully mark not just a significant day for myself, but for many others too.

The Details

For anyone who hasn’t seen it, it’s a 5k/10k fun run and walk in benefit of the Irish Cancer Society in my home village of Inch, Gorey, Co.Wexford on Sunday the 28th of July . You can walk it, or you can run it, I also have medals for all finishers, a kids dash and face painting for the kids, as well as refreshments after the event, so it’s going to be a really fun family day out.

If you would like to register for the event to support it, the link is below. If you can’t make it on the day but you would like to run the virtual option, you can run a 5k or 10k anywhere you like, anytime during the month of July, and I will post a medal to you. Details are on the same link below.

Never Give Up 5k/10k

If anyone would like to make an online donation, I have included the link below:

https://www.ifundraise.ie/4541_the-never-give-up-5k-10k.html

Only 2 weeks to go and I can’t wait, if any of you plan to come on the day, make sure and say hello to me 🙂

Follow me on FB at:

@nevergiveupchrisp

Thank you for reading 🙂

Meningitis was the better outcome!

Meningitis

You know your life has been through a fairly rough time when you are so unbelievably happy and relieved to be told that you have meningitis. Recent events really led me to reflect on where my life is at the moment, to think that I could be in a position where I’m so overcome with joy and relief to have a doctor tell me that I have meningitis! It’s a thinker.  

Meningitis isn’t exactly something you hear positive things about when you read about it, infact it’s a nasty life threatening disease. I’ll just rewind back to my blog at the end off March and I had mentioned that I had come down with facial shingles. It was the last week of March and the shingles took over my face, to say they were fairly sore would be an understatement, I’m actually still dealing with the pain from them now 6 weeks later.

It was after about a week when I could feel them beginning to get better, I was delighted to finally feel some relief from the agony, I just wasn’t expecting what was to follow next. I woke up one morning expecting to feel the pain continue to ease yet instead I woke up feeling absolutely horrific, and I had a load of new symptoms which concerned me so I dragged myself down to the GP who immediately sent me to A&E. Long story short it turns out I had gone from first having shingles to then having meningitis.

I really hate ending up back in hospital, I just can’t describe to the extreme level of how done I am with hospitals, and having to go through A&E really doesn’t help. I wasn’t at all concerned that it was cancer that had me in there, but along came one of the doctors on duty and after reading my symptoms that were noted in my file he seemed to suggest that I could be relapsing, as one of my symptoms was similar as to when I previously relapsed. Well my heart, I remember my breathing escalated very quickly, I literally put my hand on my heart as I lay there, looked over at my parents with a face glazed over with utter fear and thought to myself, if this is back I’m gone.

I really could have done without that. One of the things I have really had to be resilient about as best as possible over the course of the last year or so is that whenever I have pains in places that were similar to when I was ill or relapsing, I wanted to not let myself feel so anxious about them. I have had to learn to deal with them and create a new association of those pains simply being down to the effect the disease and treatment has had on my body, and to try my best not to associate them with the fear of it being a possible relapse, and it has taken a lot of time and a huge amount of effort to swing the association in the other direction! Needless to say it takes just one worrying look or comment from a doctor to very quickly throw me in to disarray, which is exactly what happened at that point.  

I was a week or so in hospital, but thankfully I’m now home recovering. Niamh and I were due to make our way to New York City last Friday for a much needed, well deserved break, a break I had been waiting a very long time for, a break I really needed, a break away Niamh needed, that our relationship really needed, but unfortunately I wasn’t able to recover in time. Niamh and I were looking forward to the sightseeing, the food, the shopping, the buzz, all that comes with New York, just to be away together and enjoying ourselves again because we don’t often get a good run, but it was not to be, however, we’ll make up for it. I really want to give her some sort of normality in our relationship but I haven’t been given much of a chance to provide that, I can only hope that now winter is over and we begin to approach the summer, we can begin to enjoy ourselves again and get back to a bit of normality.

I think I needed a good venting of my feelings towards the last month or two, being so sick, being back in hospital, the severe pain it has caused me. To be honest, the facial shingles have caused me so much pain that I don’t really feel like I have even had the opportunity to come to grips with the fact that I have had meningitis at all, although after recently meeting with my specialist she commented that I was “very sick” with a real tone of seriousness, and actually I think the severity of the situation did hit home with me judging by her facial expression and tone of voice when she said it, even my GP later admitted that he was very concerned that sepsis could have spread to my brain. All in all I count myself very lucky!

Oh the disappointment!

I’m so disappointed about missing the holiday as it was my chance to regenerate and reset myself, to just have a bit of fun and excitement, but that’s ok, we’ll go another time. I have missed nearly 6 weeks of work, the added pressure for me is that I get zero sick pay in my job, so I am stuck between needing to get back to work as soon as absolutely possible, but at the same time ensuring that I am well enough too. Thankfully it looks like I will be back to work next week, and I will finally get to return to full time hours like I was due to at the start of April. I have really missed running too, running is my way of clearing my head, it’s something that helps me both physically and mentally and it is what I love doing most, but I’ll get back to that too, slowly, all in good time.

I rue the fact that I wasn’t able to just move out of winter peacefully and continue what I would consider really positive progress on my end, but that’s just the way it is, it’s another set back but I’m getting over it. Perhaps I was naive to think that after 2 years I wouldn’t be dealing with repercussions like this, but maybe it’s a learning point for me to realise that the recovery may take a lot longer than I expected. I only need to briefly reflect on what my poor body has been through to make sure that I always keep that realisation in mind.

It’s time to move on

I sometimes wonder what else I can do apart from pick myself up and go again, it’s the only thing I am use to doing, and in contemplating that, I’m very thankful that’s it’s always my only focus, to just get back up and go again. 

I’m so thankful to be coming out of it, and we are now in to May, oh rejoice summer here I come! I’m done with venting,  it’s time to start looking forward again. As I’m starting to feel better I can sarcastically joke with Niamh that the positivity parade is making it’s way back around, I can start looking at the positives again. I will be back to work next week, and I am also back walking now a little bit which means in time I will also be back doing a bit of running, I can’t wait to be able to put on my running gear and go out for a little run. We are in to May now which means better weather going forward, mostly anyway, and the summer is coming which means more walking and of course outdoor activities (obviously including eating ice cream).

All roads lead to July 28th

Most importantly we are just 12 weeks away from my Never Give Up 5k/10k fun run and walk! 12 weeks! I have been planning this event in my head since I was first in hospital battling away, so it’s been a long time coming, and I can’t wait!

YES, you can walk the 5k, this event is for everyone, I have many people that will be walking the 5k, so please register (link below) and come along for a really fun morning, walk or run, just take part, and bring the kids. Help me support the fight against cancer. All proceeds are going to the Irish Cancer Society, so please spread the word to help me make this a success, and join me in celebrating what will also be my 2 year year anniversary of getting the all clear.

Thank you for reading, please share my story.

To follow me on Instagram search: PROBYC or Chris Proby

To follow me on Facebook search: NEVER GIVE UP

Don’t forget that I do post more regular smaller updates on my Facebook page, details below if you wish to follow the page.

The Never Give Up 5k/10k

Registration link for my event is below:

Never Give Up 5k/10k

Two years ago today since I was set free!

Freedom!

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.

Thank you for reading, please share my story.

To follow me on Instagram search: PROBYC or Chris Proby

To follow me on Facebook search: NEVER GIVE UP

Don’t forget that I do post more regular smaller updates on my Facebook page, details below if you wish to follow the page.

Please join me on July 28th for this wonderful event for a really great cause. Walk, jog, or run, it’s all about coming together to take part and have fun.

The Never Give Up 5k/10k

Registration link for my event is below:

https://www.popupraces.ie/race/never-give-up-5k-10k/

 

Beating the January blues 👍🏼

Christmas Overindulgence

I was so happy to be at home for Christmas this year, and most importantly well enough to be able to enjoy it. I was able to take part, to help out my Mum and Dad, to be able to visit and spend time with my friends and my family, and to just be able to take it all in and enjoy the simple things about Christmas.

As the darker colder weather begins to creep in from September onwards it’s somehow easier to endure and put aside that change in weather because of the whole exciting lead up to Christmas, however, it’s after Christmas when I tend to begin to struggle. January and February are so dark, cold, wet, and just so dreary, the January blues definitely start to kick in, once Christmas is over I feel I really need something to keep me going until March when Spring is upon us and it starts to get brighter, warmer and cheerier.

I have to say I really over indulged with junk food during Christmas, I absolutely fell in to the “Ah sure it’s Christmas” mentality and it really backfired on me. As soon as December arrived any resilience I had just disappeared, my sugar cravings worsened due to a bad spell of fatigue. By the time Christmas came around it was actually beginning to really get me down, I was eating so much junk food, it was time to make a plan! I didn’t want to be stuck in a rut with January looming. People often say how Christmas is all about over indulging and I do agree with that, but if it’s a case it starts affecting your mental health then it’s definitely food for thought.

Exercise & Healthy Eating

It’s quite simple, after the overindulgence of Christmas my plan was to use healthy eating and exercise as a way to give myself that boost I needed. My aim for January in terms of exercise was for 3 runs a week for the month of January. As for the healthy eating, no crisps, sweets, chocolate or alcohol for the month of January, I guess alcohol doesn’t really count because I very rarely drink anyway, but still, the challenge was set, and I did it!

The challenge went great! To be honest I found it relatively easy, the exercise part was never a doubt unless I was feeling unwell. I managed to get my 3 runs a week in for the month of January so I’m absolutely delighted with that. I feel like my body is finally starting to get stronger, and importantly I feel that I can trust it a lot more now. Needless to say I’ll still have bumps along the way but if it is a case that I come down with a cold or flu, I have more confidence that my body will fight it that bit better than it would have last year! My specialist told me that it would be 2 years after the transplant before I would have any sort of an immune system, so I just need to clear this winter and I’m there.

As for the healthy eating, I found it quite easy, I had no treats whatsoever during the month of January, just healthy eating, healthy snacking, and any sugar was down to natural sugars from fruit. I might just keep it going for another few weeks too until I have that day where I feel it’s time to treat myself!

I can’t tell you how much better I feel after such a positive month, the healthy eating and exercise has really given me the boost I was looking for! I’m delighted with my consistency with my running, and feel happier now that I have returned to healthy eating. I was really not looking forward to January as I thought it would just be a disastrous month but it’s actually turned out to be such a positive one. Roll on February now, I hope to pretty much do the same, and just hope that I can maintain that consistency with the running.

February

February is a very significant month for my girlfriend and I. The 23rd of February will mark 2 years since I was admitted to St James’s Hospital for 5 weeks to have my bone marrow transplant, the last resort to getting me cancer free again!

The 28th of February will mark my 4 year anniversary with Niamh, to think we were together just 6 months when I was first diagnosed, here we are now after my 2 battles with cancer, having had to fight an extremely difficult time in our lives and our relationship and we’re still going strong, we really didn’t have it easy but we’ve managed to come out the other side and we are now starting to enjoy our lives again and really trying to live it up, as they say, we’re not here for a long time, we’re here for a good time.

I often say that getting out running outside puts me in such good form, it’s what keeps me going most days and something I really look forward to. At the end of every single run I do I always make sure to stop, and do my cool down stretching in the fresh air looking back over the park and just enjoying being here and being able. As you can see from the picture below, I’m a happy runner right now, I achieved my January goals, now roll on February.

I hope to run the Lusk 4 Mile road race at the end of this month as my first race of 2019, so that’s my next target. I have a number of small targets set each month leading up to my Never Give Up 5k, so time will tell how it all pans out, but it’s definitely been the start to 2019 I had hoped for 🙂

Don’t forget that I do post more regular smaller updates on my Facebook page, details below if you wish to follow the page.

Thank you for reading, please share my story.

To follow me on Instagram search: PROBYC or Chris Proby

To follow me on Facebook search: NEVER GIVE UP

The Never Give Up 5k/10k

Registration link for my event is below: