December 2012
Been a hard day and just feel like I need to scream!
Withdrawal sucks sucks sucks! I've just gotta keep going..... I've already gotten off endone, dexamethasone, prednisone. Down to 5mg of oxycontin at night.......
Had a fight with my hubby..... Sucks as we don't fight often! Through this while process we have been so supportive of each other. But today I let him down, I made a stupid decision that affects him too and I didn't even consider his needs! I'm disappointed in myself for being so selfish :'(
Finding out u have cancer is only a small hurdle in the crazy cancer rollercoaster! Again today all I want to do is scream!
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December 2012
Hi Joe,
Firstly welcome to the site! I hope it is able to provide a listening ear and support when u most need it.
I totally agree with all of Marks points - definitely don't google ur cancer and prognosis. The bad stories are black and white in ur face, it will only increase ur fears!
Whenever I had questions I would wrote then down and I'd be sure my gp or specialists/oncologist would answer them in a way I could understand.
And people survive cancer all the time! I am 9 mths in from my diagnosis, finished chemo in Nov and have recently gotten cancer free scans (im stage 4 lung cancer). I was an idiot and Google's everything at the start (i was terrified I would die ).
I have recently read an article on cancer which covered that cancer is an environmental, emotional and physical disease - it explained having a realistic and positive outlook is over half
the battle of fighting cancer and surviving! So I guess I'm saying its ok to be scared, sad, angry, overwhelmed and confused while still remaining realistic and positive.
This is an amazing site filled with wonderful supports. Don't be afraid to be vent or ask questions. I've always gotten great advice and support from here.
Take care Rubes
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December 2012
Hi lorelei,
I am so sorry for your loss!
Although I am on the otherwise (the patient) I can relate to the shock of when cancer spreads - its very frightening and unpredictable.
You mentioned its Trevs brthday on Christmas eve - how about u do something nice that is a way to say hello to him. For example getting some helium and balloons and writing a special message on them; then let them go into the sky. Or lighting a candle around his pictures and saying a prayer. Or doing something he loved/ you both loved and taking a moment of silence to remember him/tell him u love him.
These are just ideas and may not be helpful to your situation. Grief takes people on an extreme rollercoaster ride where there are no rules and no boundaries. Take each day one at a time and remember to be kind to yourself.
Take care
Rubes
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December 2012
Hi Pamela,
I was surprised about the doses however upon further thinking it made sense. My pain was unbearable I was getting back pain, chest pain, organ pain and bone pain. As the cancer had spread and initially the prognosis was not so great I think comfort was the main priority.
As my treatment continued I asked the chemo Dr how do people manage getting off these drugs. He took a moment to be silent and said "most people with stage 4 cancersespecially lung cancer don't get a chance to come off them" (ie pain management til they pass away).
Once I got the good results in Nov I took no time to waste. However due to side effects the GP has recommended another week on 10mg a day. So I will start 5mg on Monday 24th Dec.
To kj, it may seem like I'm dissing these drugs but I don't know how I would have gotten through without them. After my surgery I took the endone and oxycontin for 2 wks then stopped for 2 wks. It was hard but I know I can do it. Funnily enough I thought being so young I needed to be strong and cope with pain (like youth should make me more able to fight pain). In reality pain is pain - when its unbearable no one is able to cope!.
Thanks everyone for ur contributions.
Rubes
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December 2012
Hi maddie,
I surely understand what u mean about a high and they take away all your emotional pain too! As time went on I needed more and more to achieve the same feeling/relief. Then I noticed when I was having an emotional day id find myself taking an endone to get through.
Thing is no one ever questioned the doses I took and they would write 100 tab a time for the endone. I was allowed o take up to 8 a day if required. I would usually take 2 a day on top of my oxycontin.
I guess hindsight can be a bitch! I wish I never got to such high doses.... But with a lot of determination I'm just about to start another reduction so ill be off them soon.
I found then very useful for pain relief but very addictive....... Was like walking a tight rope where depending on ur personality u could become addicted for life or super determined to get off them. Thank goodness I am one of the lucky ones who wants off 🙂
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December 2012
I've been aboard the oxycontin slice of hell for many months now.... After my surgery it was necessary to deal with pain and then all the secondary pain from the cancer. It helped also once starting my chemoto manage all the side effects.
I had gone up to 50mg a day and was becoming a zombie...... Once finishing my chemo my gp agreed I could start reducing my dose. So slowly I have been reducing my dose. I am now down to 10mg a day (high five to me) however it has been a hell of severe side effects.
These withdrawal effects include: nausea, vommiting, stomach cramps, agitation, anxiety, flu like symptoms, aches and pains, lack of energy, insomnia. Next wk I drop to 5mg and will expect the side effects to become worse and dread the thought of once I have stopped.
Luckily due to my clinical experience as a drug + alcohol consellor I know what is to come once I've finished...... Withdrawal effects can last 2wks to 8wks. I really wish someone would have gone through these withdrawal affects prior to commencing! Now my husband understands why i fought so hard to not start them.....but when the pain became unbearable I gave in....
So its going to be a joyful few wks to month ahead. BUT Once its done I am heading back to work in feb with a new found level of wisdom. :)
"Turn your wounds into wisdom" Oprah Winfrey
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December 2012
Maddie86,
Wow this really is a cruel world we live in...... I am so sorry for ur loss of ur husband. Cancer is such a horrible disease that distroys lives, familes, hopes and dreams. It is cruel and unforgiving in those who it decies it will take.
No one should have to deal with this kind of pain, let alone someone of such a young age and when u have just recently been married.
I can only assume to understand ur pain..... All I can do is wish u well, let u know i am thinking of u and sending u support at this very trying time.
When u are grieving u let urself be whatever it is u need to be and know in time life will become a little more bearable.
Look after yourself - sending hugs ur way.
Rubes
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November 2012
Hi Jan52,
I am so sorry for the loss of John, I hope he is resting in peace.
Unfortunately I do not have the words or wisdom u desire - I am on the otherside (fighting cancer). I guess all u can do is take each minute as it comes - cry, yell, swear, remember, pray and just be as u need to be.
I hope the minutes get easier and I will be thinking of you.
Take care, Rubes.
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November 2012
Jules
that is amazing and makes me smile - shows that nothing is ever in concrete. I love knowing when people defy the odds, it makes me feel stronger knowing anything is possible!
May many healthy yrs be in ur future. 🙂
Rubes
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November 2012
Wow its been a while since I updated what's been happening in my world.
* on 25th Oct I had my last chemo (only 2 days before wedding), I had problems with bloods that needed redoing, then I had my 4hr chemo, then I had an allergic to chemo and had to spend hrs at hospital under observation. So dinner plans with family (prior to wedding) were cancelled.
* 26th Oct was filled with last min wedding plans and stress+++. The bestman drank way too much, I lost my cool and we had massive fight. He packed up and took off. We did all we could to fix that drama, I apologised but he didn't respond. Both Dan and I hoped things would settle and he'd show up at wedding (but he didn't - he boarded a plane to Perth and still hasn't spoken to us since). 😞 been very hard for Dan as he thought they were bestmates....
* 27th Oct Dan and I got married, we had an amazing day that was magical in everyway i could have imagined! Truly amazing, makes me smile just remembering the day and how I get to call the love of my life my husband.
* Dan and I were blessed with an amazing gift for wedding 2 nights away just us and a very small break away from treatment, cancer and doom/gloom! We had best time, first break away since I became sick.
* 9th Nov we saw oncologist to find out scan results and where to from here..... We received fab news the scans were cancerfree (yes u heard me right cancerfree). So the cancer hasn't spread and the cancer in chest, liver and bone has gone (yes gone). She was very clear this is not cured and I'm not in remission - the chemo has worked for now and this has bought us time. The cancer can and most likely will return in future.
* I got my picc line out on 9th Nov and had a proper shower for the first time since my surgery (6mths ago), best shower ever!
* I've started reducing pain meds and steroids in last wk - its been a massive up and down, loads withdrawal effects. But I'm staying strong and I wish to return to work in early 2013.
* I've been mulling over our news and feeling very blah; hard to believe it is true. I've been plagued with mixed emotions - happiness, relief, fear, guilt and sadness. Why is it that I am blessed at another chance when so many others are not... It doesn't seem fair........ I will definitely need to learn to live with this news and reality that the grimreaper could be just around corner for us. But for now I will just continue living!
"All the art of living lies in a fine mingling of letting go and holding on".
Havelock Ellis
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