Cancer

[two sheds jackson 3]

I'm not really sure what's possessed me to post this thread; I don't really know anyone here, and theres not much anyone can do to help me. I hope it doesn't seem like an appeal for sympathy, because that's not what I'm after. I guess there's just alot of things I need to verbalize and get off my chest, and some things are actually easier to say to a bunch of strangers than to the people you care about most.

Early in the year, I found a lump just in front of my ear. I went and saw a doctor about it, and he assured me it was only a cyst, but told me to watch it for the next month or so and to get an ultrasound if it didn't go down, not because it was possibly cancerous, but because the type of cyst he diagnosed it as can get painful if left untreated. It didn't go down, so I went to a radiology clinic, had an ultra-sound and was told that it was not a cyst but a tumor in the salivary gland; I was told not to worry about it too much, that the overwhelming odds were that the tumor was benign, but that I would need a biopsy to confirm it. I was [censored] myself at this point, and absolutely rushed to get a biopsy, but it still ended up taking about a month to get one; the health-care system is a joke: the radiology clinic told me I needed a referral from a GP so that I can go back to that same radiology clinic and get a biopsy, and so I went to the GP, got the referral, went back to the same radiology clinic and, when I was literally on the table about to have the biopsy performed, the doctor read through my file, saw that I hadn't seen a private specialist, and told me I would need to go back to the same GP, get them to give me a referral to a private specialist, who in turn would have to give me a referral for the biopsy. This was important, they explained, because it would eliminate the risk of performing a biopsy if I do not need one. I'm still kind of ashamed of myself for having fell for it; everybody could see I needed a biopsy, but theres obviously some tacit general agreement in place between these types of clinics and private cancer specialists to do this type of thing, because it's the specialists bread and butter. I ended up paying the specialist $140 for a five minute appointment in which he told me precisely what the GP and radiology clinicians told me; that I have a tumor and need a biopsy. If you're EVER in this situation (and I hope to god none of you ever are), and you're about to have a biopsy done and the doctor tells you you need a specialists referral, please, in the politest possible way, say "either perform the biopsy, or have me arrested and thrown out of here". Don't fall for their [censored].

Anyway, eventually I had the biopsy done, and it came back benign. However, by this point the tumor had grown huge, had begun to impinge on a nerve and I had some restricted facial movements. I was told that in the operation to remove it, they would have to take the facial nerve, meaning I would lose movement in the right half of my face. This was obviously a massive, massive blow, especially given the type of field I want to work in- I'm 23 years old and have been trying to figure out what to do with myself since I was 18, but have turned things around dramatically in the last year. About a year ago I switched to a media course majoring in radio, after basically flunking out of a very unfulfilling BA course. I'd put together two really good semesters, getting a credit average in one and a distinction average in the other, and was actually enjoying uni and becoming passionate about radio, but there was a chance my speech would be effected after the operation. I'd also started taking an interest in stand-up comedy, having entered a comp at the start of the year (the Raw Comedy competition for peoples who are in the know) and done well, and performing a few shows since then, I'd begun to seriously consider making a real commitment to it, maybe even making a career of it if I'm good enough. I do a character-based routine, and its obviously a bit hard to play a range of characters with half a face. So, going into the operation, I was feeling a mixture of huge relief (because I'm not going to die) and utter devastation. Days before the operation, I was told that they'd perform a nerve graft, taking nerves from my leg and putting them in my face, so there was a good chance I would regain most of my facial movement over the course of two years or so. This lifted my spirits a bit.

Had the operation on the 22nd of last month. When they cut me open, they found out the tumor was actually either malignant, or a highly aggressive form of benign tumor. They conducted an extremely aggressive, 14 hour operation -the swelling hasn't even fully gone down, yet- and I was in hospital for 7 days. It took a while to get used to not being able to move the right side of my face, but either the graft worked better than expected or the damage wasn't as bad: I was told that I would be unable to close my right eye, but I have full movement, I was also told that my face would drop (similar to alot of stroke victims) but that hasn't happened. If I'm not being expressive, I basically just look normal. So that was a relief, but now I'm once again worried that I have a life-threatening illness, even though at this point they were pretty confident they got it all. I healed quicker than expected; was up and walking around on my third day in hospital (the doctors said they'd actually never seen anything like that) and could have probably been discharged on the 5th day, but they kept me in as a precaution. It's not uncommon for people to spend 10 days in hospital for that sort of operation, apparently.

Anyway, a week after being discharged, I had a PET scan and they were absolutely shocked to find a whole bunch of little dots in both of my lungs. It's been an absolute nightmare since then; I went into hospital a week ago and had a lung biopsy (pretty full-on stuff; they perform a sort of keyhole surgery where they go in, take out a bit of your lung and stick it under a microscope) and it confirmed that the cancer had spread to my lungs. I was told that what I have is terminal and inoperable, I asked for some idea how long I had, and the doctor told me it was impossible to say, but on average, about a year or two.

The last week or so has been absolutely indescribable. You know how, with victims of trauma (Vietnam vets, refugees etc) they say that going to sleep can be absolute hell, because you're letting go of all your ability to distinguish past from present, fantasy from reality, and you find yourself thrust into this sort of hyper-realistic nightmare where you have to relive the experience? I've kind of been the opposite; when I WAKE UP I'm thrust into a nightmare, reality itself IS the nightmare. I know that sounds kind of like a sob story, but I desperately needed to say that, and I couldn't say it to my own family, because it would [censored] torture them to hear it. I actually havn't even been coming on here much (I used to come on every day and stay up to date with all things Melbourne-related), the reason being that I found it completely depressing; the line of thinking was, "Melbourne will be a fantastic side in 5 year time, and I wont even be around to see it". Reading all about Watts, Jurrah, Scully etc just depressed me.

Went to Peter McCallum yesterday and talked to the chemo doctors. It actually went pretty well. They stressed that the difference between "incurable" and "untreatable" is not just semantic; they can hit this thing with chemo and, if it reacts well, it is absolutely impossible to say how long it could stay down for; it could be any number of years. The only thing keeping me going in the past week was the hope that I'd hear something that would give me some hope -a story about someone who lived with this same type of cancer, a prospect of a cure, anything that gave me some hope that I might grow old. I kind of got that yesterday; at least I feel like there's a bit of a fight now, and I'm not just sitting around waiting for the inevitable.

Again, theres no particular point to this thread and I wont be upset or embarrassed if nobody replies, I just really felt the need to get the story down in words.

[H_T 3,049]

Two sheds jackson, sincerely I can't believe that you're going through all of this at just 23. Shocked. I've enjoyed reading all of your posts and I hope to read many, many more. You give well balanced and very articulate views IMO. I enjoy reading them.

May you draw some inspiration from our MFC President Jim Stynes and his own personal battle, and fight it, don't wait for the inevitable.

It's taken great courage to share your thoughts, your personal battle. Now you have got that off your chest, you now know where to channel your courage and energy.

[Cards13 9,117]

Geebus H Christ! That is bloody horrible!

I have absolutely no idea what you're going through or what to say to you. The only reference I have is my old man getting "Jack Dancer" a few years ago. Hard enough but I just can't imagine being the one with it. Plenty of sympathy but no real answers and bugger all options.

All I can say is I hope you have lots of people around you who care and love you, to be there for you and for you farken live it as much you can.

[Redleg 41,432]

All the very best. You are a brave boy to share this and I hope things improve for you and that the Dees have success that you can share in soon.

I hope you keep your spirits up and know that many of us here will be thinking of you and hoping that there is always hope for these types of things and that cures and new treatments are being found.

[Longsufferingnomore 1,640]

I wish I knew what to say. I don't know you but we can all hear your pain. Let your family help you. They will be devastated but equally they will want to do this with you. Seeing a counsellor with your family may halp but most of all fight it and be positive because good things do happen. Keep reading the forum if for nothing but a good laugh at some of the idiotic things people post here (myself included) Good luck and best wishes to you and your family.

[Hellaintabadplacetobe 4,294]

Hey Two Sheds,

Mate I really don`t know what to write but just felt I had to respond to you. I think it is probably a good thing that you have shared your story even though you were not quite sure why you were doing it. You must be feeling so many different emotions and I think writing and sharing is a small way of releasing some pain, anger and frustration.

Stay positive mate, the mind is a truly powerful thing and you can beat this thing if you believe! Your story makes me realise how precious life is and not to take anything for granted. I think many of us take life far too seriously sometimes and what you have just written will be a wake up call for a lot of us Demonlanders.

Be strong mate! Thankyou for sharing!

[Damo 3,374]

Dear Two Sheds,

I have always admired your Moniker and your avatar of tom Waits.

Your posts have been pretty much worth reading(to me) and your input thought provoking.

i dont post as much as i used to but am glad, though shocked to read your post.

Please battle on and try to keep yourself healthy.

Although I know you arent, Dont give up.

Keeping a stiff upper lip to family and relatives is difficult.

I hope I would have the courage you have shown in writing that post, the most personally confronting i have read on Demonland.

Is it possible that you could update now and again?

I think you may find a rich vein of support from many on here and I guess a few will have PM'd you as well.

Are you in inner Melbourne? Do you have a partner? Please let us know,

ThankYou for sharing your battle and thoughts, I really will be thinking of you and hoping for the best.

Good luck

Damien(franky)

[LeBron James 41]

That's shocking mate.

Being around the same age i can't even begin to imagine what you are going through. Hopefully your body reacts well to the chemo and it keeps the cancer at bay for many years to come.

Good luck mate & all the best.

[Toot182 7]

Wow. Just, Wow.

Mate, I can't begin to imagine, even after reading that, how you are holding together - i can only send my wishes and let you know my thoughts are with you.

I too am the same age, and reading about your life can completely relate to the position you were in a few months before this struck.

Keep being strong and utilize your support networks as much as you can, they will be there for you when you need the most.

And keep coming back here. The Dees are clearly doing something for you, and I'm sure you have the love and support from everyone on this forum.

All the best.

[Carn dees 108]

Hey, after reading that i had to send my best wishes.

I wish you all the best and lets hope you see a few more demon premierships in the near future.

All the best mate, stay strong and enjoy what you can!

Edited November 15, 2009 by Carn dees

[Einstein 1]

Two Sheds mate, got to say that was really touching. All I can do is wish you all the best. Try to keep positive. You never know how these things can turn out.

My thoughts are with you mate. Stay strong.

[Guest delicious jurrah coffee]

thats shocking mate, i will pray for you tonight, stay strong son.

[Guest sticksmorton]

Good luck mate

I hope you get through it alright, stay positive...

[BVI Demon 26]

I was really saddened to hear your news. You have my best wishes. Keep fighting!

[MikeyJ 60]

Hang in there mate, you never know what can happen.

I had a family member who was told they had six months; they lived for another seven years and defied every prognosis in that time.

The power of a positive mind is an incredible thing. As others have said, fight with everything you've got and make every moment count. I wish you all the courage and strength in the world, and I hope sharing your story has given you some relief.

All the very best, mate.

Edited September 15, 2009 by MikeyJ

[Nasher 33,617]

I read this thread and wished I could find something profound to say in response to such a touching article, but I've got nothing. All I can say is that I sincerely wish you all the best and hope that your obvious bravery holds you in good stead for your fight.

I also have to add that I find it a terrifying reality check that this is happening to someone very close to me in age and circumstances.

[Sir Why You Little 37,128]

I have a 27 year old friend going thru her 2nd round of chemo. So i sympathize man. You will be around to see our next flag...stay positive.

[Jock Strap 197]

I've been coming to this site for a year or two now .... and have never signed up ... just a lazy consumer! However, i read your post last night and i needed to sign-up to reach out and wish you the best of luck on your journey, and all the strenght in the world to deal with your ongoing pain and frustration. Bloody terrible situation. FYI, my mother has 'incurable' cancer too, but she's been able to fight it off a few times and is now 10 years down the track. So i understand the situation you and your family are going through. Hang in there mate ...

[45HG 1,559]

Like many others in this thread, I thought long and hard before posting anything (and a few deleted attempts) but just couldn't think of anything profound or even helpful.

My thoughts and best wishes are right behind you, as I'm sure they are from everybody else on thie site and who knows you.

Times like this can get the best out of people, and you seem like a very brave, strong person.

[JACKATTACK 17]

Best wishes and all the luck and strength in the world.

[Axis of Bob 11,844]

I expected to read this and see a story about Jimmy's fight and I didn't open it until now because I hate even thinking about that sort of thing. Eventually I opened it and found a powerful tale a million times more confronting than I could ever have dreamt in my most horrible nightmare.

I am 27 and my attitude is always one of accepting the current situation and working out the next best step from there. But that just smacks me in the face and I am utterly speechless.

The best I have got is that I wish you as much luck and success in your fight as is humanly possible.

[The Emblem 1]

Two sheds,

I sent you a pm re this...did you get it?

[Hannabal 4]

Carmelites

Good luck.

[two sheds jackson 3]

Just got back from a pretty big night out, I'm a bit [censored], so I'll keep this as brief as possibl so as not to make too much of a [censored] of myself. Thanks to everyone whose given me support via this thread or in PMs (and to everyone I havn't gotten back to yet, especially AFI and It's A Nightmare, I'm sorry and will do so in the next couple days, swear to God).

Just thought I'd give a brief update. As I said, when I was originally diagnosed, they did an x-ray and found a bunch of small dots (which turned out to be tumors) in my lungs; the largest was about 4x4cm. Since then I've had two bouts of chemo, which actually hasnt been too bad, I've lost my hair and for the first three days after each treatment I've felt pretty tired, but I havn't got sick from it, and three days after I get a dose I feel completely normal. Anyway, I had a CT scan the other day to see how the treatment is going, and it went way better than expected; alot of the dots arent even showing up anymore at all, and the biggest tumor has shrunk by more than half- the doctor said about the biggest tumor "we think it's still technically measurable, but we're not even sure about that, definitely less than a cm", so yeah, after two treatments the biggest tumor is barely measurable. And I still have another four treatments to go. The doctors didn't expect anywhere near this good of a result; when I started treatment, they told me that if the tumor didn't shrink but didn't grow, they would consider the treatment extremely successful (and by the sound of it, they would have been surprised even by that). This is after two doses. I have another four to go.

The type of cancer I have is slow-growing, and slow-growing cancers don't generally respond that well to chemo (although this one obviously has). But it's also a pretty rare cancer, and it's a bit of an unknown quantity since theres not much data available yet (from what I remember, the specific type I have accounts for about 2% of salivary gland tumors, and of that 2%, only 10% turn out malignant: I pretty much did the opposite of winning the lottery). So I figure [censored] it, every illness in the world was incurable at one stage until somebody survived it, and I'm [censored] well going to survive this [censored].

Again, thanks so much to everybody for the encouragement, I'm feeling [censored] terrific right now.

[45HG 1,559]

Bloody oath you will!