"Carve Your Lyrics Into My Arms" - Coping with the Power of Music

01/23/17 - Something strange happened the week preceding my last MRI scan.  Finally, after a year & a half of much debate & stress over how often my MRI’s should be scheduled, I found myself feeling surprisingly relaxed, whereas normally a healthy dose of “scanxiety” would kick in.  Perhaps it was due to the fact I’d just returned from my fangirl trip of a lifetime, or perhaps it was due to the fact I’d been sick for nearly two months & was simply ecstatic to finally be over what I now believe was the RSV virus (a severe respiratory infection, often mistaken for a heavy cold). Whatever the reason, for the first time in the year & a half since this medical rollercoaster began, I just felt calm.  Could it be that I am finally getting the hang of this being a cancer survivor thing?  Even when I learned receipt of my results would be delayed due to the absence of my oncologist’s administrative assistant, I wasn’t phased.  My realistic self rationalized, if there was a problem, they would’ve had somebody else call me into the sarcoma clinic, so surely they must be fine.  Right?  Right!  I hope…

Well, that was all three weeks ago, and alas, it was a good run while it lasted, but now that the assistant is back at work today, I can feel this doubts creeping in ever so slightly, although much less than with previous scans.  I don’t think it’ll ever go away completely if I’m honest, but it’s been nice having that peace of mind.

Meanwhile, my fangirl trip of a lifetime was everything I’d dreamed & more!  The trip was to see my favourite band Placebo for their 20th anniversary tour all over the UK & Ireland, but for me it meant so much more.  Not only have I been a fan of the band for 20 years, there were times during my battle with sarcoma when the only time I felt true comfort was while lost in the music of Placebo.  Even once I progressed to five months of physiotherapy, Placebo was my soundtrack every wobble along the way.  In fact, I still have my Placebo inspiration board up on my elliptical.  In addition to photos of the band from past shows, it also includes a marquee of the band’s name in lights & a photo of me with friends on the barrier at…you guessed it…another Placebo concert!  Long story short, they were instrumental in getting me through one of the most difficult times of my life.  Now not only have I come out the other side, but I made it through the trip that meant so very much to me, and I even got my second chance to meet the man who is positively my most favourite human ever to grace a stage.  As if that wasn’t fantastic enough, he actually remembered me from when we’d met two years earlier, and he remember where I’m from!  Needless to say, I was & still am on cloud nine, and ready to deal with whatever life throws at me.

Now here I am in 2017 still looking for my next big break on the hamster wheel, praying for “NED” (no evidence of disease), and a little uncertain of the future as a result, BUT I am here I made it!  I don’t know what the future holds, but I’ve learned I'm a lot stronger than I ever could’ve thought.

So, now I’m off to bed to try to get some sleep.  Hopefully, I’ll wake up to good news!

01/24/17 - Well, yesterday has come & gone, and the waiting continues…. Waiting, waiting, waiting…always waiting!  *Deep breath*. *Looks down at the Placebo lyrics etched in my skin*…”Breathe, breathe…Believe, believe…"

*NOTE: Title inspired by a line from Placebo's song "Every You Every Me" from Placebo's 1998 album "Without You I'm Nothing".

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Anniversary Challenges & Mixed Results

07/08/16 - Wow, can't believe three months have passed already! Yep, it's that special time again where I get to worry about my latest batch of scan results. But before I get to those which I have already received by the way, a bit about anniversaries. Whether good or bad, optimist or realist, pretty much every cancer survivor has an emotional reaction to their anniversaries of which we have many. First, there’s the diagnosis anniversary of when your world was forever changed. Then comes the anniversary of your first cancer treatment, be it chemo, radiation or surgery. Then, of course, there’s the all important one year anniversary of when you were deemed cancer free. While some celebrate their anniversaries, others find them quite difficult. To my surprise, I fell in the latter - at least for the first batch anyway (diagnosis & chemoversaries).  I say I was surprised, because most of the time despite my obligatory week of stressing prior to scan results, I usually do quite well. I keep myself busy and find things to make myself happy and enjoy this beautiful spring we've been having. However, about three days before my one year anniversary of being diagnosed, I suddenly felt very depressed. I didn't feel like listening to my favourite music, didn't feel like watching TV, didn't feel like being awake, didn’t feel like going out. Basically, I felt numb for three days, unable to move forward.  It wasn't until I forced myself to listen to my favourite music that I was finally able to shake myself out of it, at which time I flipped into super productive mode & got a ton of things done.  I continued to be fine until my one year anniversary of starting chemo, which was exacerbated by the fact my grandpa who also had a rare sarcoma five years ago now has a new cancer, mantle cell lymphoma, and his chemo started almost exactly a year to the day from when I started mine.  To say this messed with my mind would be an understatement.  According to the liposarcoma support group I’m on, sarcoma survivors are more likely to get other forms of cancer.  Seeing my grandpa make this a reality on my own chemoversary amplified that fear.  This time, it took me a week to pick myself up & snap out of it.  I think the challenge with anniversaries, is it brings everything flooding back, and you can’t help but wonder if or when it is going to rear its ugly head again.  You want to plan for the future but you don’t dare because you’re not sure how much of a future you even have.  But then, you dust yourself off, give yourself a shake & think about everything you’re grateful for & how things could be so much worse. Fortunately, that’s the mode I prefer, but every now & then you have those dark days, and for me, anniversaries seem to trigger those big time.  Hopefully, this will get easier with each passing anniversary.  From what I’ve heard from other survivors, the first year is the biggest hurdle, though. If I can make it to anniversary #3 in tact, then I will truly start celebrating, because I’ll be out of that high danger zone for distant metastasis.  Of course, there’s always be a possibility even after three years, but as I’ve mentioned before, if it’s going to happen, it’s usually within the first two to three years after surgery.

Now for my latest batch of results.  It’ll be another month before I meet with my oncologist, however, his assistant emailed me my results this afternoon. First the good news. From what I can tell, my pelvic & abdominal ultrasound’s plus my CT scan are all OK despite the addition of a second/new ovarian cyst, in addition to the previously noted lesions on my T3, thyroid & iliac.  There has been no change in size for any of them other than the addition of a second ovarian cyst, but it’s a simple cyst not likely to be cancerous.  Still, they are recommending it be monitored every six months.  Now for the bad news. It appears my bone scan is inconclusive due to the presence of low grade soft tissue uptake where my sarcoma was removed.  This is most likely due to the surgery or radiation treatment, HOWEVER because my original sarcoma ALSO showed soft tissue uptake, they can not rule out localized recurrence in my thigh at this time based on this bone scan.  The scan also shows degenerative type uptake in my shoulders, lower lumber spine, knees & feet, but there is no evidence of mets to the bones.  What this degenerative type uptake means, I don’t know but they’re suggesting followup.  Over the past month, I’ve been having pains in my right foot even while sedentary & have discovered a lump in the bone not far from where the pains are which isn’t replicated on my left foot, so I’m a bit concerned. I’ve also been experiencing pain in my right shoulder, but I’m hoping it’s related to a previous fracture or previous tendonitis or bursitis I had in that shoulder many years ago.  I’ve also had pains in my right knee, but that was injured at the same time my shoulder was, so again, hoping it’s nothing & that I just need to drink more milk!  But I’m worried about my leg. I’ve noticed over the past month or so that the edema seems to have increased a bit…  I’m going to press for an MRI sooner rather than later, and if he won’t request one, I’ll press my family physician for one.  Given the inconclusive bone scan, though, I’m hoping it won’t be an uphill battle to get an MRI.  I was never a fan of just an annual MRI.  I’d much ratter have one every six months if not every four months.

Now if only they could move my appointment up, but unfortunately my oncologist is going on vacation, so it’s not an option.  I asked if I could see the only other oncologist that specializes in sarcoma in my area but was told it’s better for my original oncologist to go over the results, since he’s more familiar with my case.  Meanwhile, I’ve asked if he’ll be ordering any other tests prior to my appointment, so here’s hoping for that MRI….  Stay tuned….  More info when I have it.

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Almost There!

03/20/16 - I'm so happy!  The one thing that kept me going through my battle with myxoid round cell liposarcoma is finally upon me!  Or well, it will be in about  eight months!!!  Placebo’s 20th anniversary tour is finally a reality, and my friend & I got tickets for a number of shows this fall!  *Squeeeeeee*  There were times when I feared I wouldn’t be alive to see this day, but here I am!!!  Now the waiting begins...again….eight…long…months…ugh!!!  I still have two more consultations with my oncologist, as well as a crap load of tests to get through between now & then, as we monitor for distant metastasis.  So, now I’m terrified something will go wrong between now & then!  Just wish I could get on a plane tomorrow, but alas the tour doesn’t even start till October! :( There’s something to be said for the rather SHORT notice we got for gigs over the past few years!  This waiting for almost a year for shows is going to drive me nuts!

And so much for my oncologist "spreading out" all my tests over several months!  In June, he's now booked a CT scan, ultrasound & bone scan!  Plus I'm sure he'll order my x-ray in between there, as well, since we're staunchly monitoring for lung metastasis.  I almost don't mind doing them all at once.  When they're spread out, I end up stuck waiting for sometimes two months to see him after a test &/or have to get the receptionist to email me the results...  That's all fine when the results are good news, but what if one day they're not & my appointment isn't for another two months?!  I suppose if that ever happens, they'll obviously move the appointment...  But yeah, cluster the tests.  Radiation or not. :p


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My First Six-Month MRI Tomorrow

01/13/16 - I’ve got my first six-month post-surgery MRI of my thigh & hip tomorrow.  Fortunately, I haven’t experienced the scanxiety I had with my last batch of tests (x-ray & ultrasound).  I’ve been too busy coming to terms wit the death of David Bowie.  Reports are now saying he had liver cancer.  You’d think all this talk of cancer & death would increase my anxiety, but no… I’m just tired!  I’ve been keeping busy working on some material for another blog I have, so perhaps that’s got a lot to do with it.

As for the MRI, this first post-surgery one is to get a baseline image, so that they have something to compare future scans to.  Hopefully, all goes smoothly & there are no nasty surprises.  Here in Canada, our medical system is primarily public, so unlike the private system, I most likely won’t get the results until later next week.  I’ll be sure to post an update then.  I also asked to get a copy of my final pathology report, which they’re going to send along with my MRI results. I’m eager to learn my final round cell count, since the >25% I was originally given was from my pre-surgery biopsy, which only examined three small pieces of the tumour.  The final pathology will be on the entire thing, so it’ll be much more accurate.

Meanwhile, I've added a few Blogger gadgets on the menu to the left to make it easy for people to subscribe or share any posts of interest on Google+.  Besides helping other sarcoma patients & helping myself not go crazier than I already am, my new goal with this blog is to also help spread awareness about this forgotten cancer.  Speaking of awareness, I also added some helpful links, as well as I few sarcoma-related blogs I've come across over the past year.

Well, that’s it for now.  Gotta be up at stupid-o’clock tomorrow to be picked up to go to the hospital!  I swear, they saved me only to try & kill me!  Scans that early should be outlawed!!! Zzzzzzzz...

A Million Little Pieces Come Together - Results Day #2.

04/20/15 - After much waiting & a week's delay, I finally got my consultation to discuss the results from all the many, many tests I've had over the past two months, especially those over the past two weeks.  To my relief, the news was mostly good, though I'm not completely out of the woods yet.  There was so much information covered today, there's no way I'll remember it all to share here.  They estimated the consultation would take approximately two hours - we were at the hospital for nearly FIVE!   That being said, here are some of the more important highlights. :)

First, I have a stage three 25x12x8cm tumour, which currently does not appear to have metastasized. [EDIT: I later learned speaking directly to my oncologist that the resident doctor screwed up, and I was actually stage 2B, GRADE 3, 25x13x8cm!]  However, indeterminate spots WERE found in the bones of my abdomen & spine, plus another unusual spot was found on one of my ovaries.  Now, before you panic - I sure did! - the abnormalities found in the bones of my abdomen & spine can also be found in people who do NOT have & have NEVER had cancer, BUT due to the fact that I do have cancer, they have to be vigilant.  So, for now, my specialist is not overly concerned but will continually monitor them.  As for the ovary, that's another story.  Yep, here comes one more test (an ultrasound) to ensure it's nothing to worry bout.  It's possible it could be related to surgery I had 10 years ago, so it may not be significant, but again, better safe than sorry.  So, that'll be checked out prior to starting my treatment, which has been further delayed.  Looks like it'll probably be another two weeks now.  I'll also need to go in for a more in-depth radiation planning session, where they'll determine the best way to go about the radiation, such as position of my legs, etc.

So, to better cope with all the endless waiting, stress & yet more delays, I've decided to take advantage of the hospital's individual & group counselling services, in addition to the closely-matched peer support volunteer available through the Canadian Cancer Society.  They also gave me info on courses patients can take through our local cancer centre.  Haven't had a chance to look  through them yet, but once I have, I'll share more info if they seem useful.  Speaking of which, one very useful service they have on offer is a volunteer driver service to get patients to & from appointments.  It's not only free but it's more flexible than the city's shared ride service for people with disabilities, as you don't have to worry about missing your ride home, should your appointment run longer than expected.

In addition to meeting with my orthopaedic oncologist again, I also met my radiologist for the first time, along with the respective resident-physicians for both specialists.  Think of the residents as  extensions of your primary medical team who fill in the gaps when your primary specialists have other patients to attend to, etc.  It was here where I started to get more answers re: treatment & its short-term & long-term side effects.  Now, keep in mind, everyone's different, and not everyone gets the same dose of chemo or radiation, but this is what they're expecting in my case...

Chemo therapy - Despite the low dose & short duration I'll he receiving, there's still an 80% chance I'll lose my hair but only on top of my head.  It is rare for patients to lose ALL their hair (eyebrows, lashes, etc.), although it can happen occasionally.  Despite being well aware hair loss was likely, the high percentage rate sure threw me for a loop!  They also expect fatigue to be an issue, in addition to bruising more easily, risk of infection, nausea,  change in appetite & taste.

Radiation - One of the most significant side effects will be skin soreness, irritation & peeling comparable to that of a sunburn....   My skin will also become darker in colour & become tighter.  Other side effects are likely include fatigue & mouth sores.  Due to the many changes to the skin, they recommend regularly using powder, such as baby powder, in addition to a medically prescribed cream.  Fortunately, they don't anticipate blistering in my case.  Here's hoping they're right!  Given the large size of my tumour, feeling as if I have a sunburn on the posterior & side of my thigh will be more than enough to deal with, thank you very much!

Long-term side effects to keep in mind after treatment will be an increased risk of fracture years down the road due to the tumour removal occurring so close to my bone, as well as the possibility of secondary tumours due to the radiation.  They said these secondary tumours occur in 25% of the individuals, and if cancer were to reoccur, it would most likely be in the same site as my original cancer.  For the first two years once I'm cancer-free, I'll have to be checked every three months.  Then for each of the five years thereafter, it'll be every six months.  While this sounds like a lot, I'm being assured that my work's insurance company will be required to consider this all as part of my original claim, and thus I won't lose a bunch of sick days over all those appointments. :)

Recovery time will largely depend on how well my tumour responds to radiation & how the surgery goes.  It could take anywhere from one to three months to recuperate from the surgery alone.  It is up in the air how much physio therapy will be required, as this will be determined by how much surrounding tissue they'll end up removing.  What I do know, is regardless of this, a large chunk will be removed from my leg, and it'll look as though someone took a bite out it.  Fittingly, the in scission will be large.  They are going to do everything they can to preserve the nerves & muscle surrounding the area but it's impossible to say that this point what the outcome will be.  That being said, I did ask about my eventual ability to once again stand for long periods of time at, say...a general admission concert gig.  Come on, Y'KNOW this question had to be forthcoming!  ;)  The resident physician said although the muscles in that leg will always be weaker, chances were promising, but of course, no guarantees.  Only time will tell!  Better start compiling my physio-workout music playlist now, haha!  2016 20th Anniversary Tour, here I come!!!  Even if I have to waddle like a duck, I'll be there, someway, somehow!!! ;-)

*[NOTE: Post title inspired by Placebo's song "A Million Little Pieces" off their 2013 album, "Loud Like Love".]

A Song to Say Goodbye...for Now - Going on Medical Leave.

04/09/15 - After rising at the crack of dawn for yet more tests, I finally made it into work to pick up a few things, drop stuff off, submit some unrelated  insurance forms, and say my bye-for-nows.

Items I picked up included  photos of my dogs which I plan to take to hospital with me, as well as some of the awards I have one over the years. While that might sound like I am giving up, far from it. But as a realist, I am a planner and so I have to prepare for the possibility that I may not be back  and wanted to ensure my family would have my awards if that is the case.  As I made the rounds to various colleagues, it really started to hit home that it could be a long time before I returned. Things were starting to get real and fast.  I'm not sure who was holding back tears more, them or me. It was a sad day.

As for the tests, this latest batch included a bone scan of my entire body and a CT-scan of my thighs & backside.  Both scans were done in an effort to determine whether or not the cancer has spread to my bones.  First, they injected me with radioactive dye, which needed nearly three hours to set into my system.  So back into the waiting room I went!  Once again, it was a good thing I came prepared with my own entertainment!  I can not stress this enough to anyone about to embark on the same journey!  You're going to be going through lots of tests & lots of waiting, waiting & more waiting.  Waiting in rooms, waiting for rides, waiting for result, waiting for dye, etc....  So, bring a book, bring a smart phone, bring a tablet, etc.  While waiting, the receptionist was also kind enough to fax my short-term income protection application forms through, so  at least that was one item crossed off the day's to-do list. :)

Once the dye had been absorbed by my system, I was brought into a room with a special nuclear camera rotating around me that was able to see the dye inside me while taking images of the bones throughout my body.  It was done in stages, including my head, chest, abdomen, legs, etc.  As they scanned my chest, I had to hold my breath NOT in the inhale but on the exhale, which sounds worse than it actually was. :)  The machine actually talks to you, telling you when to breathe, when to hold, when to exhale & so on.  Other than that, the test was totally painless - apart fro the injection needle.  In fact, I even dozed off a few times despite having both my feet & arms bound, so that I could fit in the machine without limbs getting in the way! Who would've thought a bone scan would involve bondage, LOL!!! ;)  Kidding aside, it took longer for the dye to set in than it did for the tests themselves, which only took an hour as opposed to the three hours for the dye!  Afterwards, they did a quick CT-scan of my leg & backside, which involved me sitting on a special bench that was a camera.  Again, no pain whatsoever.  These were probably the two easiest tests of all the tests I've been through, and as always, the staff were excellent in describing what to expect.

And finally, the call I'd been waiting for came through with news they were able to schedule my last batch of tests for the next day.. As for getting the results, this may have to wait as the clinic is very full. Still crossing my fingers that I might get lucky and be able to get in this coming Monday.  If not, then it'll be the following week, as they only hold this particular cancer clinic on Mondays.   Ahh, the never-ending waiting!  Good thing I'm a patient person most of the time!

*[NOTE: The title of this post was inspired by the Placebo song "Song to Say Goodbye" off their 2006 album, "Meds".]

"The Bitter End" - Crashing Back to Reality (Back from the UK)

03/31/15 - So, after spending nearly two amazing & crazy weeks in the UK with friends following our favourite band, Placebo, life came crashing back to reality upon my return home last Thursday!  Not only did I come back with a cold & possible food poisoning, I finally got news of my biopsy, which took place today, giving me almost no time to arrange things with work, since my return to work was scheduled for yesterday!  In the end, I ended up taking yesterday off due to being up all night with a cough but fortunately I was still able to arrange some last minute vacation time in order to preserve my sick leave, which I'll most certainly be needing in the near future.  I also had to get last minute blood work done (yes, MORE blood tests!) the day after returning from overseas, all whilst feeling like death warmed over!  Welcome back home to me!  :p

I was informed that the procedure I'd be having was a CT-scan-guided biopsy with a recovery time ranging anywhere from two to four hours!  Having had a simple biopsy on a mole years ago, where I was in & out in under 30 minutes, the news of a possible four hour recovery time scared the crap out of me!  I started to wonder if this biopsy would be very painful during or after.  While they did explain this was more of a precaution, as recovery times vary, they failed to mention that this is more so due to whether or not you end up needing sedation.  So, in the end, it wasn't nearly as bad as I'd feared it would be!  :)  All the hospital staff were wonderful, clearly explaining the effects of the procedure, what I could expect & feel at various stages, etc.  Yes, there was pain involved, but it was similar to what you feel during blood tests - perhaps slightly worse but not by much.  The procedure itself was over in less than an hour.  It took longer to GET to the hospital than it did to have the biopsy itself!  As for my recovery time, it ended up being two hours, just to ensure I didn't have any reactions to the meds, procedure or excess bleeding.  They even gave me breakfast, or rather brunch, since by the time I finally got to eat, it was after 1:00pm! :p

So, as mentioned, this wasn't just a simple biopsy.  For those going through something similar, I'll explain in more depth what it entailed, so you have an idea of  what to expect.  First, no eating or drinking at all four hours before.  Period. Not even water!  Hence the aforementioned brunch!  :)  After having me change into a hospital gown, they had me lay on my stomach, on a bed that was hard but curved on the edges & surprisingly comfortable - MUCH more so than the one I experienced during my MRI!  They gave me pillows to prop up my head & they elevated my feet so that I was as comfortable as possible.  Oxygen was administered, followed by an IV, into which they first injected water & then eventually the dye, which makes you feel REALLY WEIRD!  First your limbs feel all hot & then you feel like you're peeing yourself, but in reality you're not, thankfully!  :)  My chest also felt kind of odd, which worried me a bit, since they did warn me of anaphylactic shock in rare instances.  Luckily, this was not the case for me!  After a minute or so, things started to calm down internally, and they moved on to injecting the localized freezing.  And so queue in the painful bit!  It only hurt for about a minute or two, and then I only felt light pressure from that moment on.  As they took samples, a clicking sound could be heard, and as they took pictures of the tumour, they all leave the room for a minute & then return.  It was over in less than an hour!  Then they stuck me in the hallway for a bit where the nurse kept checking up on me, eventually moving me up to recovery for two hours, where I played around on my phone listening to music & chatted with my mom!  I do have a bandage I'm required to keep on for two days to avoid infection, and have to be very careful about keeping the area clean.  Other than that, I have a bit of irritation & pain when I walk or get up or down from a chair, but it's more than manageable. :)

So now the waiting continues...  Todays' procedure was done by a radiologist.  Next comes the orthopaedic surgeon.  A week from today the waiting will finally be over, and I'll learn whether or not I have cancer.  Uhhh...yay?  The first thing anyone who's been through serious medical issues like this will tell you, is that waiting in limbo is the worst part...  So, at least I'll know...  Y'know?

To be continued...

PS - Many, many thanks to my wonderful mom who swapped her days off so that she could support me today.

PPS - I also want to say a huge thank you to Placebo for all their wonderful shows & amazing music!  I couldn't have gotten through the past month without it, and words can not express the strength your music & gigs have given to me as I ride this medical roller coaster!  While I'm not much for religion, I'm praying to the universe that a miracle comes my way, so that regardless of what happens, I'll be able to make it to your 20th anniversary tour in 2016!  *crossing every appendage possible* Much love from one of your many loyal Canadian fans!  <3

*[NOTE: The title of this post was inspired by the Placebo track "The Bitter End", which can be found on their 2003 album, "Sleeping With Ghosts".]

Still Waiting for the "Kings of Medicine" to Call...

03/13/15 - So, it's been nearly two weeks since I first saw my family physician but still no word on when my biopsy will be...  However, I am getting my blood work done tomorrow.  Re: the biopsy, I called a few days ago & they said they're still waiting for a specialist to "take my case" but said it was "nothing to worry about" & that it was "just due to their workload".  Um...yeah.  Don't worry my ass, I only have a freakin' "alien" growing in my leg (that's how I feel a lot of the time, I just want *it* out of me!), but whatever!  I have two weeks of my favourite band & singer in the world to distract me - and oh...what a beautiful distraction he is!!!  ;-)

*[Note: The title of this post was inspired by the Placebo song "Kings of Medicine" off their "Battle For The Sun" album, one of my favourite albums of all time.]