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Help Colm Beat Bone Cancer

  • Life After Hospital So Far

      16 May 2017

    Hi all,

    I am really, really, really sorry about such a delay in my update on GiveALittle. I have had a few small ones on my Facebook but no proper ones on Give. My excuse for the delay is mainly that I have been completely tied up with getting used to living at home with a missing limb and sickness along with my family experiencing it too. I also have mostly daily visits from district nurses who change my dressing and assist me with other medical needs which can take up a lot of time alongside regular medical appointments I must attend.

    It's been a strange experience coming home from the hospital, in a way I'm glad I waited this long to provide this update as I've had enough time to properly experience it.

    Leading up to me going home from the hospital it was ALL I wanted, however being truthful once I had been home for a few days I actually wished I was back in the hospital. I was disappointed on returning home and I have been told this is very common for people in my position. I guess I hadn't fully thought it out but I was expecting things just to be better in every way but they weren't obviously. Don't get me wrong, being around my family all the time was the better part and in some ways I was more comfy...but in others I wasn't. You don't realise the support systems and things you have in place at the hospital that you won't have when you get home - even as small a fact as in the hospital I had a temperature controlled room and at home I did not. Lots of things like this contributed towards a feeling of disappointment when returning home due to a drop in comfort when I was already in extreme discomfort and pain, but honestly I feel the biggest contributor was me somehow thinking I would be better when I was in fact not. I was still missing a leg, I still required a ton of medical assistance and dressings, I still could not effectively go to the toilet in any manner, and being in constant high levels of pain and discomfort.

    Since then, which was about 6-8 weeks ago, I have become much happier at home as I've become more adjusted at not having nurses all the time at a whim, and being more independent. Don't get me wrong, my family have not left my side and have been amazing for which I'll always be grateful as they have had to help me with some horrible things however it's not the same as having nurses 24/7 from a press of a button and all my drugs managed for me, and a doctor on hand anytime. You can see the differences.

    So essentially I've gotten much happier at home since becoming more independent and coming to terms with my wound and the situation I'm in and will be for the rest of my life. It was one thing thinking about it at the hospital and I thought I was used to not having a limb already, but it was different once I actually started 'living' when I got home. It's still hard at times when I go someplace I haven't been since before I lost my leg and it's hard to get about, or fit under a table with my wheelchair, or even get in the entrance. It dawns on me even further how much I've changed. To counter balance the negative element I feel with that, I do know that things will change a whole lot once I get more better and also I begin using crutches / a prosthetic instead of wheelchair.

    Anyways, onto the details of my cancer and my wounds. Everything is going well on both fronts. My wounds are pretty much all healed on a basic level except for one small hole which still needs time to fill out. Also my graft donor site wound is still taking time to heal, these can take a while I'm told though. In regards to my cancer I recently had a CT scan and it was clear, showing no cancerous items in my body which is fantastic. I just need to start chemo, however I cannot until my wounds are fully healed (not so much the graft site but my actual wound on my side/back). So we are trying to speed up my healing of the main wound as fast as possible but it's taking it's time.

    Thanks everybody, I apologise again if any of you were waiting for an update or worried.

    I love you all.

    - Colm

    P.S. Chelsea won the f***ing league! Yesssssssss!!!! We are the champions! Bloody brilliant, FA Cup here we come and Champions League see you soon!

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  • Almost home time!

      31 March 2017
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    Okay so, summary ! Everything is healing super well, and there's a small patch of grafted skin that needs a few more days to heal then that's it! The graft went really well and my team is very happy with it.

    The specialists are coming back on Monday and then they will give me the green light for discharge so I expect it will take a day or two after then I will go home !

    I have been disconnected from all IV lines and vacuum kits that were on me, except for my catheter which is getting removed tomorrow.

    My donor site on my thigh where they took my skin for the skin graft is still healing as well but it's getting much better.

    My stitches/sutures are to stay in for another four weeks.

    I have swapped my anti biotics to pills instead of IV drip today, and also my anticoagulant has been swapped from IV drip to a daily injection I must give myself every day for three months. Then I will swap to pills instead for a further 3 months.

    I am looking to begin my chemo ASAP once I leave, an appointment is being organised for me.

    Physio is going well and I am learning how to transfer from the wheelchair to seats and beds etc, I still need to learn crutches and low frames however. Hopefully I can do this before I get discharged, and if not then I will try to work on it from home until chemo is over, then get back into Physio as we can't do Physio whilst I'm on chemo.

    Good news all around and I'm in great spirits!

    See attached a picture of my wound all nice bandaged up - very tidy!

    Thanks

    - Colm

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  • Skin Graft then I'm all done!

      21 March 2017
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    Hi all,

    Okay update from my Ortho team, Mr Deo and Mr Flint this morning!

    Skin graft surgery on Thursday, they take the dressings off 5 days later to check it and then generally takes another 10 days before fully healed from when the dressing is taken off, during that 10 days they probably will put another vacuum dressing on it so it collects any liquid and helps the healing. They will be taking the skin from my thigh.

    Then I can go and see my Oncologist and get straight back on chemo once all healed.

    So we are looking at an estimate date of 7th of April - 7/4/17 - for me to be fully healed. Not sure if I will be discharged then but it seems like it. I will then be able to head over to Auckland hospital to get my chemo and hopefully be home and in my own room!

    Thanks everyone. Also see the attached photo of me standing with my Mum. It's the first time she saw me stand.

    - Colm

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  • The end of my hospital stay is in sight!

      18 March 2017
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    Hi all,

    I haven't done a GiveALittle update in a while, the past two have been by my beautiful sister Saorla, which I truly appreciate her doing them. I wasn't in a position at times to write full updates - I did a few small updates on Facebook from my phone but operating my laptop with full focus and comfort (sitting up is a bit painful but getting better) was difficult. I am now on my laptop and sitting up however!

    I've been so lucky with my amazing and caring family, I've never felt so loved. My parents have been alternating days and seeing me, so there's never a day where I don't see someone, my brother Tadhg has started seeing me after his University lectures finish, and my sister Saorla comes and sees me on her days off from work. On-top of all this I have had multiple family members come out to see me all the way from the UK to here in New Zealand and stay, which has been fantastic. I currently have one of my Aunts, my Dad's sister Ann, who was here a few months ago when I was on chemo, and has come again to stay here for 8 weeks! I cannot thank my family enough for how much time they have committed to staying by my side. My friends have also been brilliant, coming to see me on lunch breaks, and their non-work days - bringing me snacks and juice which has been amazing.

    Thank you to everyone who continues to support me by sending wonderful messages and cards, it brings me to tears when I see how many people care about my unfortunate and unlucky situation.

    Since I came into hospital I've pretty much hit every bump in the road possible, and came close to dying at one point after my initial surgery. Following this I had many complications. Finally, over the past 4 weeks we have been seeing more and more positive improvements and progress. Just this week I had a surgery to close up the bottom flap of my wound, so I now only have the larger top open wound to deal with. The skin has healed at such a good rate that it is ready for a skin graft far sooner than expected! We are looking at this Thursday coming, 23/3/17, for the plastics surgical team to do a skin graft and close the final part of the wound. This hopefully will be my last operation if all goes well and the skin graft is accepted by my skin at the wound site - fingers crossed!

    I am eating lots more now, and my appetite has returned nearly to what it was before all of this which is great. The doctors were surprised as I am healing at twice the rate they expected currently. All signs are looking very positive and once the skin graft is completed and fully healed I will be able to go home! That's hopefully in about 2-4 weeks, which is brilliant.

    I've managed to stand up a few times, and even get in my wheelchair, with the physio team. We will be working on this until I leave the hospital, building my strength up in my leg. I currently will be using a frame to get about but need a bit more practice I think! It's very exciting however and I'm looking forward to it.

    I just wanted to provide an update on where I am at, and what is happening. I'm as positive and optimistic as ever, and am looking forward to going home and taking on the next challenge.

    Thanks to everyone for any donations made, I really appreciate it still more than ever.

    Lastly, I've attached a photo of me, my Mum, and my Aunt all celebrating St. Patrick's Day in the hospital with me! My Dad was there too, we had a great time.

    Thank you again.

    - Colm

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  • Next big step: V2!!

      7 March 2017
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    Hey teamies! Saorla here! (Colm's little sister!)

    Colm's been making good progress! (Finally) and he's started to have is wound changed in the ward, his appetite it coming back, and has even started to stand! (yeyyyaa)

    In the coming weeks, hopefully the docs will be closing up one of his wounds that he has, (he has two!) and then after that, skin grafting the final wound, which is the main one.

    We've had some downs though, he had a trouble with a blood clot, and its still around but with the help of medication it is shrinking! And in terms of infection and everything like that, there hasn't been any issues!

    He's got a great mind state, he's positive and it makes everyone around him positive. Plenty of netflix, audio-books, and time with his friends and family.

    Going online uses too much energy and takes too much from him, so he has been somewhat avoiding it, but hopefully the next update will be done by the man himself!

    Colm and our parents have been long time supporters and true fans of Bruce Springsteen, and the man himself met with my parents and sent Colm his well wishes, (actually sent him his love) as well has some signed merchandise which is totally radicalllll! So that brought a bit of sunshine for us all through this storm!!!

    Thank you for the support, there are more frequent updates on Colm's personal facebook, but if you want to send any personal messages and or have any questions, contact me! Saorla Brennan - just on facebook!

    Thanks guys!

    xx

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  • Next big step.

      31 January 2017

    Hello team! Colm's younger sister here, Saorla!

    Been a while since an update on here, we have been active on my brother's facebook, but I'd thought I'd give a run down on whats happened.

    Where to begin!

    Well, Colm's surgery to remove the tumor was a success! They got the bugger out and that was what was important. But we have had a major slip up.

    Colms leg didn't respond to the circulation, and began to deteriorate. It began to kill him. So as of yesterday (30th of Jan 2017) He lost his entire left leg, including the area around his hip.

    The next 24 hours are the most crucial hours he will ever have to endure. He has had a couple of run ins with blood clots, which will be the next big concern for him. as well as infection in his wound etc as his body is having a hard time healing.

    Colm has been fighting so hard, even though he hasn't been awake for the past 6 days, I can sense it in him, he's always been like that. He's my warrior.

    This isn't the end. This is just a new step in a brand new direction that none of us are prepared for, but with the love and support we have been reviving from everyone, whether it be donations, or just a simple message, it all helps us all as one big family get through this battle with cancer, and rise above it all.

    Thank you again for the donations, it helps my family so so much.

    To have more up to date posts about my brother condition, check out his facebook or even mine, feel free to send a message to any of us. Thank you

    Saorla Brennan

    xx

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    • 05/02/2017 by Anne

      You and your family have been amazing through all of this, Saorla. Huge hugs to all-especially Colm.

  • Surgery Time

      25 January 2017
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    Hi all,

    It's surgery time! My surgery begins in two hours and I'm on my way to the hospital as I write this. It's dawn and it's beautiful, as you can see in the photo I've attached.

    I'm nervous, and scared, but also optimistic that this surgery will go well despite all the things that could go wrong. I'm on the road to recovery and this is the next major stop, which is a great thing.

    Thanks everyone for the supportive messages leading up to my surgery, I really appreciate it.

    It's going to be a long recovery but will be worth it.

    Love you all,

    Colm

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  • Surgery Time!

      18 January 2017

    Hi all,

    So, following on from my previous update the panel of experts met and also decided there were no traces of cancer on my lungs meaning that it did not spread - which is my true life saver.

    Great news there, and I'm not going to lie me and the family needed it - it was genuinely the most nervous and scared I had been. The thought of cancer spreading to my lungs/chest was pretty scary but thankfully we don't have to deal with that (right now at least haha!).

    I have seen my surgeon, and the surgery is still the same as we planned originally despite the slight growth of the tumour. This means I get to keep my leg! Yahoooo! I'm incredibly happy about this. The surgery is on 25/1, with my pre-admit on 24/1. I should be in hospital for about 2-3 weeks after the surgery if all goes well. The surgery itself is about 15+ hours, and there are four surgeons operating on me.

    It's a major and dangerous operation, as it's not just removing my tumour we are also taking half of my pelvis out, a chunk of my hip and also the lower part of my sacrum (so part of my spine) which is all pretty mental.

    Just moving forward now and focusing on this as the next step towards recovery. Thanks for all the support still everyone! I will be at Middlemore hospital incase anyone wants to visit. I will be updating this whilst in hospital.

    I love you all.

    Colm

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  • Half Way Reached

      11 January 2017

    Hey all,

    So, I've reached half way. My first three chemo rounds have been completed and now I'm awaiting surgery - however this isn't 100% confirmed yet.

    The past few weeks have been difficult to say the least. Unfortunately we found in an MRI scan that the chemotherapy to-date has not worked and failed to be effective. My tumour has actually grown in size by 2cm, it's gone from 12cm across to 14cm. This also meant there was a good chance that it had spread to my chest. We have since completed a chest scan and my lungs did come up with changes however the experts so far that have looked at it cannot see any cancer. Instead it appears my lungs may have been seriously damaged by the first round of chemo - if you remember it was a overly strong dose. Apparently this does happen time-to-time and lungs can be affected by strong doses of chemotherapy.

    This Thursday a panel of experts will hopefully agree with the previous expert and confirm that there are no traces of cancer in my lungs. From there, we will move onto surgery.

    I am expecting a consultation with my surgeon at this point and I will update everyone. I can only imagine the surgery will become even more invasive due to the tumour getting bigger but we shall see.

    Thanks everyone.

    Love,

    Colm

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  • Cycle 3 Day 3 - Nearing half way!

      21 December 2016
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    Hi everybody,

    Firstly apologies for the longer wait time for the update - I've been meaning to update for the past two weeks but I just haven't gotten around to it. Well, here it is now!

    I started my third cycle on 19/12/2016, so I'm writing this in the early hours of 21/12/2016, I've got my third day of chemo tomorrow morning. Then that's me for another 18 days.

    So, we've got Christmas coming up and New Years, then I've got the all important MRI scan on 04/01/2017. This MRI will show exactly where the tumour has gotten to during my three rounds of chemo, and where my surgeon is going to operate. So, we are looking at my surgery pretty much as soon as my third cycle ends. My third cycle ends on 11/01/2017, so my surgery will be the following week most likely. I will have be having a consultation with my surgeon before this time obviously and have finer details then. I have to get my MRI completed first however.

    The second cycle was awesome compared to the first, the 20% decrease in potency was really needed. Chemo does get progressively worse so I'm still weary on the third cycle I've just started but it will still not be anywhere near the first cycle's level of awfulness.

    I'm as positive as ever, and as ever appreciative of all donations made to me to help me along the way. I have government support now, which is a small financial weekly amount I get to assist with living - it's not a lot but enough for me to help my family take care of me a bit. I'd also like to say thanks to Ritesh and Mike for coming along to my chemo today, it was nice to have someone other than family take me and even though it was a short session it was good! Thanks boys!

    Now, I'll try to update as much as possible moving towards my surgery and the MRI so everyone is kept in the loop. My life is going to change pretty drastically in certain physical ways once my surgery is completed, so I think I will be looking to writing a lot more about this whole experience during that period. Not to mention emotional changes!

    Anyways, I just want everyone to know I'm as strong as ever and am excited that I am reaching the half way point - surgery - so I'm excited (albeit nervous as well) but keen to get this all moving on. I am having a further three cycles of chemo once I've had 3-4 weeks of surgery recovery, so that's next on the menu!

    Thanks everyone, I love you all, and I'll try to update this more soon.

    - Colm

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  • Cycle 2 Day 4 - Second round of chemo has begun!

      1 December 2016
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    Hi all,

    Sorry for a delay in the updates recently, as you may know from my last update I had an extra week to recover from my overly powerful lot of chemo so I spent the entire week feeling great and getting out and about! My uncle was over from the UK (sadly he just went back) and we had a brilliant time.

    So, just quickly I'd like to say a massive thank you to my awesome group of Movember mates that managed to somehow (!?!?!) raise $4,275.00 with their mo's! Absolutely incredible and I can't begin to thank them, and everyone who donated to them enough. It was listed as a fundraiser under this GiveALittle, so feel free to take a look and see what an awesome job they did for me.

    Now, I've started by second round of chemo as of 28/11, and it's now 1/12, so I'm on Day 4! My dosage is 20% weaker this time, but I'm still on the very 'strong' end of the chemo spectrum strength. I can already feel my throat and mouth side effects coming back, however we are more prepared this time - mentally and also physically with the correct attack plan and drugs. It will be hard, and it always gets harder apparently the further in you get but I will get through this round like the last, but even stronger I'm hoping. I know between days 8 and 16 I was VERY bad, so, fingers crossed we can target those days and power through them.

    I don't have much else other to say than just thank you everyone for all the love and support to-date, it has made this difficult journey so much easier for me.

    Thank you, and I love you all still so much.

    - Colm

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  • Cycle 1 Day 18 - First chemo review with my oncologist

      18 November 2016
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    Hi everyone,

    Day 18 already and I feel a bit better still, nice trend going here!

    I thought it important to provide an update after my first review with my medical oncologist George today.

    Just before that I'd like to say that I've found keeping my GiveALittle updated alongside Facebook has been a great outlet for me. I talk everyday to my friends and family about what is going on in my life, and the process we are all going through to deal with my illness - however it is has been a great experience sharing this with whoever else wants to hear. So thank again for even taking the time to hear my updates.

    Now, in my update yesterday I stated I hadn't lost any hair yet...very typically right after I posted that update half of my Movember handlebar just wiped off like it was nothing. Then, my mother decided to try the other side and it was the same...hahaha! I have a few patches in my short hair too missing, so, it's happening. I'm just trying to avoid touching my eyelashes or eyebrows haha!

    So, that's Movember over for me ladies and gents, I made it to the 17/11, that's good enough effort for me and I'm sure the rest of the boys can make up for my slack!

    My hair is slowly randomly coming out - expect baby look-a-like Colm. Maybe Gollum.

    Now, back to the important matters at hand. My chemo review. George advised that there is a ceiling up to where your body can take the chemo and I was over that ceiling, and from what I experienced we have made the decision to reduce the dosages by 20% - I am basically going from above what any person can take, to nearly what anyone can take. It's good news. I'm not above the max amount anymore. It's still nearly max. Just not more than that.

    George is going to give me an extra 7 days of recovery before my next slightly reduced chemo dose which will begin 27/11 (instead of 20/11). It is important that I recovery fully from these side effects as further cycles at the current dosage would just increase the current side effects. The meeting went well and we can't see any negatives other that what I went through would get worse if we didn't change. I am due an MRI in 5 weeks to fully assess it.

    I also found out with the side effect of ringing in the ears is unfortunate and will make me deaf if we continued with the old dosage. Which we obviously don't want that, so that's scary stuff as losing my hearing would be a huge price.

    The tumour has not gotten any worse, and I can actually sit better better than before for certain long periods time. All good signs, we are continuing with chemo just slightly lower dose by 20%.

    I'm going to WINZ tomorrow to see assistance regarding disability etc, so hopefully that goes well.

    Lastly one of my uncles for the UK arrived today, he is here for a couple weeks which is awesome. I had my first proper OUT OF THE HOUSE meal today. We got ribs down at Deep Creek in Browns Bay, and I could taste MOST of it - it was brilliant.

    Thanks everyone, as always.

    - Colm

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  • Cycle 1 Day 17 - Finally starting to feel better

      16 November 2016
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    Hi all,

    Here's a new GiveALittle update again for you! It's my first cycle's day 17 of 21 at the moment and as of day 15 I started finally feeling a little bit better day-by-day.

    I would say days 12 to 14 I plateaued and it stopped getting worse and had hit it's peak, and I knew then that was the worst I was going to have to deal with. I'm not going to lie when I say it was definitely the most horrific thing I've had to deal with in my life - although we got the morning 'process' down to a well oiled machine and despite a lot of pain and discomfort I was able to deal with the worst of it on the last two days with the help of a large amount of drugs and well planning.

    I feel prepared and ready to take on the next cycle already - don't get me wrong I'm sad/anxious I only have a few more days until I start my next cycle and I feel like I won't have fully recovered yet but I go into the next round knowing what is ahead of me. The first cycle is always iffy, as you never know what it is going to be like and the chemo dose may not be correct for you.

    The side effects I've experienced are extreme ulceration of the mouth, throat, and inner chest. General fatigue and aches. Also tinnitus, a constant ringing in my ears for a week now (and before that, on and off ringing). Also I wouldn't have having chemo if I didn't have diarrhea right? That's the cherry on-top, haha! Thankfully I've avoided any other side effects *crosses fingers*.

    I had a hearing appointment yesterday and they confirmed the chemotherapy has given me tinnitus, which is fairly common with the Cisplatin, it's currently just removing my high-frequency pitch detection and should go away once I stop chemo however there isn't any medical fix to stop it. I've gotten used to the ringing now anyway. The frequencies I'm losing I would have naturally lost between the ages of 30 and 40 anyway. I'll continue to have checks as I go along to ensure it doesn't effect my middle-ear hearing (normal pitches).

    I've lost a lot of weight, seemingly all muscle so far. In 17 days I've gone from 80KG to 71KG, which is pretty crazy and I can see it. Now the muscle is gone, maybe a bit of the fat can go too haha.

    So the big update really is that I am starting to feel a bit better over the past 3 days, with a little improvement every day. I can't say my body has it's immune system back yet, as it isn't and the ulcers haven't healed or anything - but overall wellness has increased and I have now been able to eat for the past 3 days in a row! Small amounts, and with the help of a lot of throat numbing drugs, but none-the-less it beats me not being able to eat anything and barely drink any liquids from Day 11 to 14.

    I'm still trucking on with the Mo, and I haven't had any hair fall out yet (on my head, or face!) which is good. I need it to grow a little bit more on the right side as that's the slower side, but the handlebar is still being rocked. I will attach another update photo to this, and I'm sure the boys with the Movember fundraiser going will do an update shortly as well!

    On a more a serious note, I have my first follow-up tomorrow with my Oncologist since starting my chemotherapy. We will review how the chemo has effected me, and whether there need to be any dosage adjustments. However more importantly we will review whether my tumour has gotten worse, or hopefully stopped growing or even better shrunk. If we do find that the chemo has not worked, and the tumour has continued to grow then we will unfortunately have my surgery moved up to immediately - and the surgery that will take place will likely be very invasive. So we are hoping that in the very least the chemo has stopped the growth so far. I'm not nervous however, I'm confident to move forward and tackle this thing.

    It's been a really, really, really hard process to go through and I wouldn't wish this upon anyone - and I've had my moments where I've broken down, but I'm still here and still fighting and going to get through this like I know I can.

    Thanks to everyone for the support as always, especially my family who have been incredible to me.

    - Colm

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  • Cycle 1 Day 13 - This is it

      12 November 2016
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    Hey all,

    I'm on day 13 of 21 with my first cycle now, and now I can see how hard chemotherapy can be. Generally it's advised that between days 7 to 12 is when you are at your worst due to your white blood cell count being next to nothing around these days. I can certainly say the past 5 days have been near hell on earth levels of pain with one of my side effects.

    I have extreme dryness and ulceration from my lips, to inside my mouth, on my tongue, down my throat to the centre of my chest. This has combined with my 'metal mouth' and unfortunately I now can't eat or drink anything except water. I could drink milk and eat skinless apple until yesterday but now the ulcers are so extreme that it causes me horrific pain for anything to go in my mouth or down my throat.

    The good thing about today is it is the only day it hasn't gotten worse, so I should hopefully see some improvements over the coming days.

    Not the nicest update I know, but it is the reality of the worst of what I will experience. The Oncology unit have advised that this is just what I have to deal with. The doctors have given me a load of sprays and one particular drug which helps numb the pain a lot, which are brilliant but it only mildy helps for a short period of time. Waking up in the morning is the hardest to deal with, I'm essentially a drooling zombie that's in severe pain whilst my family try to hydrate me - it ain't pretty!

    I'm still positive and determined to get through this though, and now I know what to expect I can better prepare myself for it which is great. I'd still kill for a cheeseburger though....

    Lastly I'd like to mention that a group of my mates have setup a fundraiser under my GiveALittle page for Movember. They have already raised a heap of donations which is awesome, they are an awesome bunch of dudes and I feel honoured to have them as mates. I am also jumping in on the Mo train, trying to rock a handle bar / chopper. See the photo I'll attach for my one week effort!

    Thanks again everyone, for everything.

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  • Cycle 1 Day 6 - So far...

      5 November 2016

    Hey all,

    It's been a few days since I updated properly, in all honestly it's because the past three days have been very challenging due to the effect of the chemotherapy on my system.

    The first three days where I was actually receiving my doses weren't so bad, I did feel fatigued but nothing much else (besides my ongoing nerve pain).

    Day 4 and day 5 were brutal to be honest, I really got my butt kicked about. I'm on day 6 now, and I feel a bit better but definitely can tell there is poison in my system.

    It's a strange feeling, I go through periods of overwhelming exhaustion, and just feeling completely run down. I have not felt nauseas once however, which is great - the drugs are working there.

    The two side effects from the chemo that I'm experiencing at the moment is ringing in my ears and all my taste is gone in my mouth.

    The ringing is something that I will be investigating with my medical team, as it's something to monitor as we go.

    The 'metal' mouth and everything tasting burnt except for sweet things is the mouth side effect.

    During this first cycle I will get to grips with what to expect moving forward, as I've said in previous posts chemo effects everyone differently. I'm expecting it to get worse over the coming week, then hopefully a bit better as I head towards my next cycle - then the fun starts again!

    Anyways, I just wanted to update everyone, I'm still here and I'm still completely amazed at the incredible support I've been receiving through messages, phone calls, visits and donations.

    I love each and everyone of you. Thank you.

    Staying strong!

    - Colm

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  • Cycle 1 Day 2 - Chemo

      1 November 2016

    Hey everybody!

    I survived yesterday, it turns out I was taking both chemo drugs yesterday. I'm all done with my Cisplatin however, that was just yesterday, and I just take Doxorubicin today for an hour and an hour tomorrow. I did also have Doxorubicin yesterday as well.

    The chemo went well, the anti-nausea drugs stopped me from feeling sick however by the end of the day I did feel completely empty/zapped.

    It was like being drunk, without the good drunk part. it isn't a nice experience, but I'm all good.

    I had a good sleep last night, and am ready for today!

    Moving forward, and fast, ladies and gentlemen.

    Thank you, love you all.

    - Colm

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  • Cycle 1 Day 1 - Chemotherapy starts today!

      31 October 2016
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    Hi all,

    On my way to my first chemotherapy session as I write this, it's the longer day - 8 hours. Whereas tomorrow and the following day are only 1 hour each! That's me done for another 18 days, then I get my second cycle.

    The chemo drug I'm taking today is called Cisplatin. The drug itself will be completely in my system after 2 hours, but then I have to stay on IV fluids for the following 6 hours to clean my kidneys as the Cisplatin is very high in platinum (hint is in the name!). Platinum being a metal, it means it's important to keep flushing my system to avoid damage.

    Tomorrow, and the following day, I'm taking the second chemo drug which sessions are only an hour each. There isn't any extra flushing required. That drug is called Doxorubicin.

    Thank you everyone for your support, today is the next step in my recovery journey and I am excited to begin.

    Chemotherapy effects everyone differently, I will be very sick, but we can hope that it doesn't completely destroy me! Even if so, I promise my positive and confidence will not be diminished and I will persevere.

    I went to the cinema last night, to see Dr Strange, it was the first time I've been properly out since dealing with my chronic pain 8 weeks ago. We went gold class and ate my fat ass full with burgers and ice cream. What can I say, my body is a temple! See the photo attached to the update for beautiful evidence of my indulgence.

    Thanks everyone, I love all of you.

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  • Chemotherapy Starts On Monday

      29 October 2016
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    Hi all, another update for my journey to hopeful recovery.

    Today I met my Medical Oncologist, a wonderful man called Dr George Laking. I also met my Young Adult Cancer Nurse Specialist, Tracey Vincent, who was equally wonderful.

    I went to Auckland Central Hospital, and visited the oncology building where my chemotherapy begins on Monday at 8am.

    My chemo therapy cycles last 21 days each, I am in on the first Monday for 8 hours, then for one hour on the following Tuesday and Wednesday. I then have 18 days at home, then I repeat this cycle two more times leading up to surgery.

    From there, I will continue with further chemotherapy once recovered from surgery.

    We went over all the possible side effects of my particular chemotherapy drugs, and I feel fully informed and ready to go for Monday.

    I'd like to thank everyone again for the continued messages of support and donations received, I'm still completely overwhelmed in the most incredible way.

    I've decided to give myself a slightly shorter hair cut than usual (went from a 1 to a wet shave now!) as you can see in the photo with this update.

    Thanks.

    - Colm

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  • Surgery Consultation Update

      25 October 2016

    Hi everyone again!

    I’ve got some news on my cancer treatment. Today I met with the surgeon who will be performing surgery on me at a later date. I have not seen my chemotherapy/medical doctor yet, however I am due to see him this Friday, the 28th October.

    During my consolation today we covered a lot of stuff, there are some details around chemo I don’t know yet that the chemo doctor will explain/go over with me.

    I am now going to lay out what the plan is moving forward, and I’m not going to sugar coat it as I need to be confident and strong in the face of this horrible situation.

    Firstly, it is a very, very, very bad and rare cancer – in fact one of the rarest you can get full stop. It is very aggressive – however it has not spread yet out of the area yet.

    The good news is that it IS curable at its current stage, however it is bordering on being too big to save my leg and hip so we have to act immediately.

    Unfortunately, I will be losing all feeling from my left knee downwards. This is going to happen no matter what, even if chemo shrinks the tumour. I will be paralysed from the knee down on my left leg. If the chemotherapy does not stop the tumour the surgeon will be forced to remove my entire left hip and leg.

    I’m not going to begin assuming whether chemo will work or not, however I can say the survival rate of this particular cancer after 10 years is 70%, which is quite low compared to other types of cancer – although I would still bet on 7/10!

    I will be starting with 3 cycles of chemotherapy; from there the goal is that the tumour doesn’t grow any larger. In some cases, it even shrinks, but the goal is to stop it and also kill any microscopic cancer cells that the surgery can’t get. We will then have surgery (either just a part of hip removed, or the full hip and pelvis), and have further chemo after that.

    As long as the tumour doesn’t get any bigger or spread at all, I’m looking at about a month of being in the hospital, then a further 12 months for basic rehabilitation. We are then looking at 3-5 years of me working up the point where I can potentially walk (with a hobble!). That is the end goal, and what we are aiming for.

    We are unsure how badly the chemo will affect me, all we know is that I will most likely be very unwell. Everyone reacts different, and because I’m below 30 years old they can afford to give me extra strong doses as my body should be able to take it. I will get the chemo once a week for three weeks, that is considered a cycle. I potentially need anywhere between 3-12 cycles.

    I hope this news doesn’t shock anyone too much I just want you all to know that I am strong, confident, and positive still. The news is awful, but there are positives and the chance of me having a semi-normal life is there! Hopefully I can get to it.

    I just want to thank everyone again for all the amazing support, donations, and messages I’ve received – it has truly touched my heart and I feel incredibly loved.

    Thanks,

    Colm

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  • Overwhelming Incredible Support

      25 October 2016

    Hi everyone, I'm honestly lost for words at the huge level of generosity and support I've received since putting the GiveALittle donation page up.

    All I can say to each and everyone one of you is that I thank you deep from my heart. Any donations I receive will help keep me ticking along and ensure I'm not rushed back to work whilst still dealing with cancer, and nerve/surgery recovery - it is going to be a huge help to me and I hope I can find a way to repay all of you one day. I also want to say thank you as you've helped my family out as well, as they no longer have my entire financial burden on them.

    Now for updates on my journey!

    I am going for pre-chemo and pre-surgery consultations this week (26/10 and 28/10) with the goal of starting chemo on Monday 31st October. I'm nervous, but also positive to get the ball rolling quickly on this.

    I will continue to provide updates via GiveALittle, and my Facebook.

    I've had a few people ask if they can organise bake sales or compete in a cancer fun run for me, and I just wanted to say I am fine with anyone doing whatever fund raising they want! Whatever or however you help is massively appreciated.

    Thanks again.

    - Colm

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