I can't even begin to imagine your pain. I caught a glimpse of it when my husband was diagnosed - I have never felt pain like that in my whole life and he is still with me. To lose him, I can't even comprehend it.
You don't want my advice, you don't want my kind words, you just want the pain to stop and for Mark to come back. Everyone deals with grief differently so nothing anyone can say will make it feel better.
Just know that we will listen.
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We are so sorry for your loss and I feel so saddened as you have shared your journey with us. You have people here who care and although we cannot even begin to imagine the grief that you and your beautiful boys must be feeling, know that we are thinking of you and your family.
I'm sending as much comfort your way as possible.
Take care of you and your boys.
Jo and Rob xxx
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Reading this, I cried and my heart breaks for you. To see someone you love so dearly, so deeply, go through something so wretched, would stretch even the most strongest of people.
I don't know what else to say but please know that I'm thinking of you and your family. I'm sorry this had to happen. It's not fair.
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Good to hear from you again. Yeah, I think it's the steriods. Rob was saying that the steriods just made him hungry ALL the time and I remember, he would eat a full meal (something that would keep me full for hours) and then 20 minutes later, be hungry again! His appetite was insatiable but since chemo stopped, has come back to normal again. Thank God, he was getting expensive to feed LOL!
I'm so happy to hear the anti-d's are working for you! You sound calmer and more.. content so I think they are doing wonders for you. Congrats, you deserve some joy and contentedness with all that you have been through!
The past 12 months have been incredibly hard for us, especially me (for a variety of reasons) and I really really want us to take some time out and relax. We both recognise how much we need it so the weekend away is a very welcome retreat from the world.
That's how I feel right now, I want to retreat from the world as much as I possibly can to repair and heal - sometimes doesn't always go to plan.
At least we recognise it and we're trying to make some changes. I'm sure a few more months and things will be a little easier.
Thank you so much for your advice Samex. Oh by the way, the neuropathy is gone from Rob's fingers and is slowly leaving his feet! Did you ever get to look at those Earth shoes? Rob still wears his because they give him better posture!
Take care and hit me up sometime.
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It's been a rough ride and I keep thinking I'll bounce back and get on with things, but I was wrong. Now I've slowed down a little, my body has just kinda fallen in a bit of a heap and plaintively asked me if we can just rest here for a while! Maybe I should just be kinder to myself :)
I'm probably more paranoid than Rob is. But I remember him not being too phased when the stomach cramps started happening and look how that turned out! It's still very new I guess and a part of me is still petrified that I could lose the love of my life. With time, hopefully it will ease off as you said :)
Take care Julie, hope you are doing well!
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Don't you dare stop eating chocolate! It's one of life's little pleasures that we should all afford ourselves, especially given what is going on!
And you know, I think oncology doctors are the only doctors who get excited when you put weight ON. Seriously, you need the weight to help fight your battle so I think you putting some weight on is bloody awesome!
I'm sorry to hear about the spots on your lungs and still with the liver. It's a crappy thing not to know what is going to happen next (oh, life of a cancer sufferer you say? I hear ya). You seem so serene, I can only admire it - me, I'd be pulling hair out, stressing out of my mind and in general, be a total basketcase. You have so much strength!
Every time Rob gets a sore stomach or a headache, I'm all in his face telling him to go to the doctor. Paranoid much? Yes and I reckon I'm allowed to be! :D
Glad you are feeling so healthy! It's a wonderful feeling, isn't it? Please take care of you and enjoy every bloody bit of that chocolate.
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I haven't been around much lately.
Perhaps because I feel I don't deserve to be. Things are going very well for Rob and I, I would feel like a right cow going on about how things are going while people here struggle with old and new battles.
We've had a couple of things come up that we've been able to deal with. Rob's CT, colonoscopy and blood test came back all clear for cancer!! YAY!!! We are in remission!
But, the CT showed that Rob has an enlarged pituitary gland, enough that it concerned his oncology team. An enlarged pituitary gland can happen due to a range of things - stress, hormone imbalances and of course, cancer. A tumour could be growing. 😕 Rob needs to get an MRI done to see if we can find out what is going on.
Both of us have put it down to stress. Denial? Dunno, but I figure we will just see what happens when it happens.
Rob has started to see a dietician due to his weight gain (I thought people lost weight during chemo lol) during chemo and she has given him a list of foods he can't eat due to the portion of his colon that was removed. I completely forgot that the colon absorbs so many nutrients so it was no surprise when she told Rob to take Vitamin B, D and calcium supplements. Rob is devastated - he's Italian and he's not allowed to eat any deli meats and limited servings of pasta. As far as he's concerned, life has ended LOL. So far though, he's lost around 6kgs in 2 weeks. If only I could do that! We're being much healthier now, excerise and food wise and finding we feel much better for it.
I lost some weight while trying to buy our block of land (did the same in the lead up to our wedding) - so much stress, I lost 3kgs in a week! Think I may have put it back on but have since lost 2kgs again over the past few weeks eating healthy.
We've decided to have a healthier lifestyle to prevent the cancer coming back - some onc doctor told Rob that due to him being so young, he has a high chance of the cancer returning. Yeah, thanks for that. Like I don't think about it EVERY SINGLE DAY!
Rob's been catching every bug going around lately due to compromised immune system - he's had more antibiotics than I've had hot dinners lately and I've managed to catch a couple of the bugs so we've both been sick and run down. Not overly happy about any of this but what do you do.
I'm still so tired from our last battle. Am E.X.H.A.U.S.T.E.D. with a capital E. I'm finding it particularly hard to stop, just keep going with all that needs to be done and I think I may be burning out a little. Is perfectly understandable given the 12 months we've just had - losing Rob's grandfather, surgery, diagnosis, wedding, chemo treatment, losing job, finding a new job, starting new job, finishing litigation for my MVA, buying new car, buying our block of land, running household, looking after pets, running our business, working bla bla bla. I feel tired just reading it all.
And people seem to have forgotten what we have been through and still keep asking for favours, calling at all hours of the day wanting Rob to give them car or IT advice. That or wanting him to fix their computers for free etc. People seem to think that they're the only one who calls but it's everyone else as well, including family (extended family giving me the shits but thats another story). Generally not a day that goes past where Rob doesn't get a call from someone wanting something. We are now learning to say no - that or putting a dollar figure on things.
Rob and I have barely spent any time together since he got sick, still planning that honeymoon though. We've booked a night at the Grand Hyatt in a couple of weekends - going to just relax and enjoy each other. I think we've earned it! ROOM SERVICE!!
I've thought of many people here who I've gotten to know and I often hope that things are going ok and your minds are at least, a little more at ease. I know it probably isn't the case because we're all in the same boat, one way or another. Cancer just rips out the rug from under you, shakes you around a shitload and nothing is the same after that. Sometimes it can be good, more often it's just a crock of shit.
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Always welcome Sammy!!
It's a massive step to overcome the stigmas, the indecisiveness (another depression side effect!) and doing something positive in your recovery by deciding to take medication. It can be daunting so you should be damn proud of yourself darl!
Good to hear side effects are starting to wear off. It generally does take a week or two but it's well worth it! And good call on starting during school holidays, wise move there!
Holiday plans are on hold at the moment. I picked up my brand new car yesterday and Rob and I have bought our first block of land a couple of weeks back!!! All very exciting, I'm very proud of us and yes, we will take that holiday now that things are calming down!
Take care Sammy and bloody well good on ya!
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.