June 14th – My official anniversary

June 14th

I never thought I would have an anniversary like this one to celebrate, but yesterday was the one year anniversary of my 100 day post transplant scan when I got the all clear. It was an incredibly important scan, it was the scan to determine whether or not the transplant worked, and for my sake it absolutely has to work, and I’m incredibly lucky that it did.

It’s a very special day, I didn’t make it a year before relapsing the first time I was diagnosed with cancer but I have made it a year now, the first milestone, and it’s a milestone that my girlfriend and I will celebrate every single year. My specialist explained to me that if I make it to the two year mark then my chances of relapsing are very low, but that she is already quite optimistic with me having made it this far. Having had the recent cancer relapse scare I think it made yesterday even more special, but just to make it this far is very positive seeing as how aggressive my cancer was!

I still have such a long way to go in my recovery, but at the same time I realise just how far I’ve come since leaving the transplant ward on March 30th last year, to just be able to go out for dinner and a drink to celebrate yesterday evening was incredibly humbling. My battle to get through the transplant in hospital ended on March 30th last year, but I’m still battling the effect cancer has had on me on a mental and physical level every single day.

Last night was such an enjoyable night, a great reason to celebrate, and a night we will celebrate every year. My girlfriend said some pretty special things to me as we celebrated, about how I battled through the last couple of years, it meant a lot to me to hear it, to hear someone so close to you actually tell you how awesome you are for getting through something like that, something so dam difficult.

At the end of the day when you find someone that special, someone who you know you want to spend the rest of your life with, you’ll battle harder than you ever believed you could.

I got the all clear!!!

Phew, I need to take a deep breath, where do I start…

The last month has been an absolute roller coaster, well I say the last month or so but the last few years really when I think about it! What started as a dry throat last month turned in to severe fatigue and exhaustion, it was so bad that I could barely make it up the stairs without taking a break half way up. It was the reason why I had to pull out of the Terenure 5 Mile and it was the reason why I had to come home early from Berlin.

I can handle the tiredness and fatigue fairly ok, but when I begin to get symptoms reflective of when I was first diagnosed or similar to when I relapsed then it gets a bit more difficult to cope with. I began getting pains in my leg where the tumor was, and pains behind my eyes just like when I was first diagnosed, I was also getting chest pains reminiscent of when I relapsed and that just made it too hard to cope with. When I was reviewed in hospital they said a full body pet ct scan was needed due to the symptoms I was having even though I was told only a month ago that I wouldn’t be scanned anymore, but of course this was a special circumstance.

While at home one of the nights my breathing got so bad that I could barely talk, then the panic set in, how can I be out of breath sitting on the couch! I went to bed but not long after it got so bad that my parents had to call an ambulance to take me to hospital, that was scary, not my idea of a relaxing night at home. I was brought to St Vincent’s and after spending the night being monitored I was moved to St Ann’s Ward, the cancer ward I actually began my chemotherapy treatment in back in 2015, I did not like that one bit, to make it worse, I was actually put in the same room that I started in! I had to keep reminding myself that I wasn’t in there for treatment, that this was different, hoping that whatever had me unwell wasn’t cancer.

Thankfully I was discharged on Tuesday morning with my scan due yesterday, something my girlfriend and I, my family, and my friends were all dreading! It’s so hard on me going through all of this but when I see the effect it has on those around me it makes it even more difficult, but that’s just how it is, I’m just so incredibly lucky to have such supportive people around me. On Tuesday afternoon I got a call saying there was a cancellation and my scan was moved to Wednesday, the next day, I made the difficult decision to not tell my girlfriend in the hope that when she got home from work on Thursday evening I would have good news for her, as opposed to spending Thursday evening worrying about the scan which was supposed to be the next day.

It was something I really didn’t like keeping from her but it turns out that it was totally the right decision to make because on Thursday afternoon I got the call from hospital saying I got the all clear! Wow. I got the all clear. It went my way. It went my way. Ironically, getting the all clear on the 7th of June is exactly 6 months to the day since I got my last all clear!

I can’t believe it, all the stress, the worry, the heartache, the upset, the fear, but it came good, it went my way, I wanted to keep believing it would but when your body is being beaten down and reminding you of what happened so recently it was just so hard to remain positive.

So in walked my girlfriend expecting to spend the night trying to not think about the scan to find a bunch of flowers and a little card from me apologising to her for not telling her, and that I got the all clear, and wow was she shocked, and certainly not mad 🙂

Even though I still feel unwell, l couldn’t resist a cold beer on our balcony to calm the nerves!

I’ve spent the last few weeks trying to avoid thinking about what I would do if it was back, I was asking myself questions that nobody should ever have to ask themselves, especially not at the age of 34. I won’t even get in to them as I want to put them behind me now, but I guess you can all imagine, at the end of the day, if I only had a certain amount of days left on this planet I would want to spend them outside enjoying it, not in a hospital.

I have said it before and I’ll say it again, enjoy being free, enjoy being outside, enjoy your time with family and friends. Put down that phone, start looking up at what is around you and at the person in front of you! Enjoy those little moments, the small things that make you happy because you just never know. I haven’t been able to go out for a run in about a month now which is a pain, but I’ll get back there.

I feel like I definitely deserved to treat myself to something awesome after what I’ve been through and had been saving for a while to buy it, so the first thing I did the day after getting the all clear was go out and buy myself a drone, life is just too short, and it was totally worth the wait to buy it.

Up next is Thursday the 14th of June, my one year anniversary celebrating when I got the all clear from my 100 day post transplant pet ct scan last year, the scan that confirmed that the bone marrow transplant was a success. It is a date that my girlfriend and I are going to celebrate every year, and this year is the first one, one we can really enjoy knowing now that I am officially currently cancer free! A bit of bubbly and a nice meal out in Dublin is planned so we can really celebrate it.

#NEVERGIVEUP #ALLCLEARMYDEAR

A quick update!

So I got to ride in an ambulance last night! Just before midnight last night my breathing was deteriorating quite badly and so came the time to make that call and order an ambulance. Strict instructions from hospital in these types of circumstances.

It certainly wasn’t the way I wanted things to happen with A few days rest at home planned but there you go. I was transported up to St Vincent’s Hospital and after being checked over and monitored throughout the night I was moved in to a ward this morning.

The ward, infact, the room I was moved in to is actually the very first room I started my treatment in back in 2015 so I have to say it really brought back some horrific memories, I never thought I would be stepping foot in this building again, nevermind this ward.

However, for now it is not for the same reasons as last time so I just have to try and soldier on until they figure out what’s wrong with me, hope and pray next week’s scan goes well, and in the meantime thankfully my breathing has calmed down.

Another full body Pet CT Scan!

I feel like it’s been a long time since my last post, well it has been. I’ve had a lot going on and yesterday I began to write a fairly long blog about it all but realised I didn’t have it in me to keep writing with the way things are.

So here it is in short, after pulling out of the Terenure 5 Mile with what we thought was an infection or virus things just didn’t start picking up. I was in with GP for my second round of vaccinations soon after and my body seemed to just continue declining, and with my trip to Berlin planned for later that week I was starting to doubt whether I would make it or not. I decided to head over to Berlin but only lasted a few days and had to make the disappointing and difficult decision to come home early.

I was having pains behind my eyes and pains where my tumor was, just as they felt when I was first diagnosed with cancer in 2015, I was also having pains in my chest and difficulty breathing similar to what I experienced in December 2016 when I relapsed, take all those pains along with the fatigue and absolute exhaustion I just haven’t been feeling well at all, not to mention the anxiety and stress all this is causing me! It is just all too similar to what has happened to me over the past couple of years and it has really made the last few weeks incredibly difficult to handle.

I went straight to the GP on my return home, and although he wasn’t overly concerned he did refer me back to my specialist in hospital. Is a virus causing all of this? Was it the vaccinations? Is it a combination of both? Or is it what I absolutely dread to think. The doctor on the team after seeing me conferred with my specialist and they made the decision that I do infact need a full body pet ct scan asap.

Although there is so much more to write about this, I don’t have it in me to go through it at the moment but there sure is a lot to tell. So I’ve basically been sitting here, exhausted, in pain, waiting to be called in for a scan since last Friday, and I’ve actually just found out that I have a scan date now, finally, for next Friday the 8th of June. That’s it, nothing I can do now but wait and pray that it’s nothing serious. I can’t tell you how much stress and upset this has caused me, not only for me but for all of those around me too, it has had a huge impact on those close to me.

It’s a bit ironic all this is happening now because on June 14th which is just two weeks away, my girlfriend and I are due to go out for a huge celebration night to celebrate my one year anniversary of getting my all clear on the 100 day post transplant scan last year! So please god we will have even more to celebrate now! It just can’t go any other way, it just can’t!

So for the next week it’s a continuation of this week, trying to keep myself as distracted as possible but with no energy to do a whole lot. It’s hard to relax, it’s hard to breathe, it’s hard to cope, but what can I do? What can I do…

I haven’t had the strength or will to talk much about this recently so to those who are close to me, friends, anyone that I hadn’t told yet, it wasn’t on purpose ❤