Well, it finally happened. Completely exhausted, my body has decided enough is enough, thrown down it's defences and picked up the first germy bug it could find. Sick as a dog. My pain levels kinda skyrocketed too, enough to have me sitting on the floor in tears. I know, I know, I should be looking after myself but it's a little difficult to look after one's self when there is a house to be run, work to attend, bills to be paid, pets to be cared for, a patient who refuses to do as he's told, a business to run, Christmas and all the mini crises in between all this. I had nearly 10 days off over Christmas but all I did was run around for Christmas, catch up with people, clean, do work for our business and stress about stuff that had to be done but couldn't because we had to wait on people. Not to mention chemo and making sure Rob is looked after. I think I finally snapped when I got called into work on my day off. I don't work Mondays but work Saturdays instead. It means I can do chemo with Rob and care for him when we get home. Last Monday, I'm driving Rob home from chemo and my boss calls. A team member called in sick (yeah right, he's still recovering from NYE), can you please come in for a few hours? First, I say no but then she persuades me to come in at 5 and work until 9. OK fine. I get there, there is hardly any work to do, J is fine and doesn't need any backup and then my boss comes back in at 6. What the hell am I doing there then? I barely got any sleep the night before, I've sat through 5 hours of chemo etc with Rob and now I have to sit there and do nothing? Me coming in on a Monday also means I'll have to work 6 days instead of 5. Fantastic. Next day, my body told me to go screw myself and I'm where I am now. Sick, sore and pretty much, kinda useless. And I couldn't go with Rob to his oncologist appointment yesterday as I didn't want to sit in a room full of cancer patients with my germs. That's just not fair to them. Some good news though. Rob finishes chemo middle of February! Hurrah! He'll have a colonoscopy and a couple of CTs to make sure the cancer hasn't decided to spread anywhere else and then it's blood tests every 3 months and a CT every 6 months. I know I'm gonna be absolutely shitting my pants when they do the scans etc - I pray to God that it's gone. Please, please, please. If there is one thing that goes right in our lives, let it be this. In the meantime, I'm just gonna crawl into bed and hope to heaven my sinuses don't explode! *sniffle* Jo xxx
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Hi Jo, So glad that Rob is nearly there. when I was close I got really excited for a while but then the final rounds were just so exhausting that all i did was collapse in a heap after the 5FU jetpack came off each fortnight. My onc had warned me that the final stretch would be tough. He was right but we made it!Just a quiet warning for these last few weeks. Rob is lucky to have you go to the long treatment with him. I used to do the first couple of hours on my own but my parents always came up for the last coupole of hours and chatted while we watched the stuff drip through! They then took me to lunch before I was too sick to eat anything! One of the hardest things I found was the sense of being disconnected when I finished treatment. You may have noticed this sentiment being expressed before. You seem much more astute to feelings than my family was so I am sure that you will be aware that "back to normal" doesn't exist. I am now up to 12 month CT scans but annual colonoscopies and 6 month checkups. I am still scared S******s every time.Bloods due in MArch. Can you, Rob and your lovely boys manage to get away for a holiday when Rob is more settled? I promised myself somewhere that I could "swim with the pretty fishies" as I was really dirty about not being able to swim all summer 2007/8 due to the picc line. We went to Hamilton Island and it was perfect. For now, you stay in bed, drink plenty of green tea and take copious amounts of vitamin C. HAng in there, S
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Hope you take time out and feel better soon. Nicole
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Thanks Nicole! Oh I feel so silly having a whinge now. I'm still sick but I'm resting today so should be better soon! Hurray! Take care - I've been thinking about you lately. Message me if you need someone to talk to. Jo xxx
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Hey Samex!! Thanks for the warning and you were right! Rob just finished cycle 9 and he is absolutely exhausted. More so than ever before. I'm going to talk to him about giving work up until treatment is finished because he's just too tired to even do normal stuff, let alone work! I have skipped a couple of chemo rounds with Rob, not because I've wanted to but because Rob asked me to. He sees how emotionally draining it is for me (I'm an empath so I cop a double whammy!)and has told me to stay home and rest. Before Cycle 9, he's coped well enough to go on his own but the last cycles, I will go with him to make sure he's ok. Thankfully his appetite has only increased with chemo (he's put on weight, not lost it!!) but I do make a point of going to lunch with him or eating something 'naughty' afterwards. Rob has decided that he wants to hold a BBQ in March to thank all his friends and family for supporting him through treatment. And he's already making plans to go back to work normally for middle of March - I'm not sure how he will go. I fear he may come unstuck a little as his shifts are 12 hours long. But I also think that he wants to go back to work to help him feel as if things are going back to normal, although you and I both know that that 'normal' no longer exists. I will just wait and see, monitor him and make sure he's not floundering too much. Given that we didn't get to take a honeymoon (Rob started treatment 2 days after we married), we always said that we would holiday properly once treatment was finished! So we are going to stay with my family in Perth for a week early in March and we are planning our honeymoon for later in the year! I can't wait!!! We're going to Bali! Still sick but I'm resting today - I have three days off work so enough time for me to recover 🙂 Thank you for your advice! Take care Jo xxx
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Hi Jo, I have no idea how he is still working!I'm a teacher and gave up after 3 rounds!I am still only working 4 days a week as even though I am Ok with the workload I couldn't cope with the stress. 4 days is great. I put on heaps of weight. You gotta love the steroids. I am still fighting (18 months later)to get it off. 7 kilos gone and about 15 to go. I was a bit overweight to start and the doctors are pretty thingy about weight, exercise and recurrence. How wonderful to be going to Bali- one of my favourite places. Glad you are resting and hope you are feeling alittle better. S
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To be honest, I have no idea either! But funny how I replied to your post, then Rob and I spoke tonight. He's thinking about taking more time off before treatment finishes because his symptoms are worse now. And I said to him that he should ease back into work - it's not going to be as easy as he thinks and I don't want him to burn out. He seemed to see some sense in that... Well I need to lose a heap of weight too - I put on 30kgs since my smash 4 years ago. Unfortunately, because of the damage, I'm unable to really do much but walk. But Rob and I need to be healthier for our.. well health! His oncologist said his weight gain, increased appetite, insomnia, mouth ulcers etc were from the steroids so for the rest of treatment, he won't be doing the take home steriods. Hopefully his appetite will go back to normal, he's getting expensive to feed! LOL We've never been overseas and we were really looking forward to our honeymoon but had to cancel after Rob's diagnosis. Now we really have something to look forward to and I can't wait! Jo xxx
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Excellent that Rob is thinking of slowing down. The problem with the steroids was that all I felt like eating was cake, chocolate and my mum's baked custard. Pity it didn't make me feel like fruit and veg or I may have not been in this predicament(weight wise)! Can you swim with the problems from your accident? I'm a bit of a water baby and I find swimming breaks up the monotony of walking every day. Rob may find that some days the exercise is just too much and maybe even just walking 4 houses down and back is enough.The heat is also a problem with the sun sensitivity etc. Both of you take it easy and keep thinking of that wonderful holiday. S
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Oh I hear you. Rob's italian and his mum is a trained chef so our waistbands have just ballooned. Rob just wants to eat junk all the time so I'm hoping now he's not taking the steriods, that will settle a little. I love swimming, was brought up on the beach. I tried to do swimming to get some exercise but found after about 3-4 laps of the pool, my arm started to ache from the cold. Arthritis is started to set into the damaged joints in my left and temperature changes seems to set it off. I was really disappointed because I love the water. I might try again and see if I can brave the pain - this summer is going to be so hot! I bought a treadmill the other day so I'm hoping that will help Rob and I to lose some weight and also so Rob can exercise yet if he gets a fatigue wave, he can just lay straight down! LOL Take care! Jo xxx
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Jo have you guys tried biotene mouthwash for the ulcers. It is expensive but it works. T got ulcers after the first dose of steroids and I found that at the chemist. After he started using it not one single ulcer for the rest of the treatment!!! There is also a toothpaste which I bought as well. Really worth the money :-)
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Hey Alana The chemo nurses gave us Difflam for the ulcers but then Rob's oncologist prescribed him these special lozenges which are working a treat! Now that Rob's not going to be taking the steroids anymore, hopefully the ulcers will disappear. Rob also got horrible mouth thrush from chemo too! So he's on Nilstat for that. Makes it reaaaaaaally hard to wanna kiss him 😕 Blerg. Do you have the name of the toothpaste though? Rob's gums are sensitive... How are you doing? Things any better? I hope so. Take care darl Jo xxx
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The toothpaste is also biotene. Know what you mean about the thrush! Although intimacy took a seat at the back of the bus during chemo and pretty much until the ostomy reversal. Weird to say but it did not bother me in the slightest. Wasnt until we thought about it later that I realised how long it had been!!!! Had to much else going on quite obviously with T, the kids, the house and all my fundraising. Things are no better really Jo. Some days are just ok and others are as I described previously. We spent a couple of hours just the two of hours yesterday. Would you believe I cant remember the last time we were together without anyone else that did not involve chemo, specialists etc? Of course it had to involve beer or it would never happen 😞 Take what you can I guess. Hope the biotene helps Alana
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Thanks for that - I might get some for Rob. The thrush is just ewwww. Intimacy was ok for us in early stages of chemo but now, dead in the water. And like you said, I'm not overly phased about it either. I'm far too exhausted and busy with everything else to give a crap. I'm sorry to hear things aren't improving. I understand how hard it must be for you and I can feel your sadness. I hope once treatment finishes, you can maybe start repairing your marriage. You can chat to me whenever you need to. Take care Jo xxx
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Thanks Jo, treatment finished in August. OP was early October. This is just the way it is I guess. And there is nothing wrong with him. Us girls just like to 'create drama' apparently. Little one was the target last night. She is the more vocal out of all three so by the time I got home from picking up the eldest, there was war. She does not hold back when she has something to say, so she gave it to him with both barrels. He didn't hear any of it as you dont when there is yelling. Anyway, we will work it out one way or another. Must go get ready to take Bj to the beach. I have been so sick the past five days I have hardly spent anytime with her. Take care Alana
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Perhaps T needs to go see a therapist if he's still struggling with everything. But then, how do you tell a man that he should go talk to a shrink? Your youngest sounds like a fiesty little girl, good on her! Have a lovely time at the beach - Melbourne is having a little heatwave so I'm staying with the air con! Well, until I have to go to work this afternoon - and yep, like you, I've been so sick and I'm still sick. CBF'd going :/ Take care and have fun at the beach! I'm jealous! Jo xxx
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We will, thanks 🙂 Bj is never happier than when she is around water or pretty much nature in general!! I have suggested counselling a few times and thats when I get the you just like to create drama reply. Don't wanna say I give up butits getting close to that point for sure. Thursday was a year since my Grandad passed away from leukemia and a week today is the first anniversary of my best friends death due to suicide (brain damage after a motor accident resulted in an 8 year quest to end his life :-{). Thats how 2009 started. We found out T's diagnosis on my best friends birthday. (a bit spooky) So I myself am struggling and have been working with my gp who is also a trained psychologist. So according to T this is the reason for my thinking something is wrong with him, you know that old paranoia that counsellors 'put' things in your head. Will put it out of mine for the moment and enjoy my daughter. Catch up soon Alana
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Hi there, Just thought I would mention a product Greg used which was very helpful, Amosan, it is a mouthwash in a sachet, found it in the toothpaste section of the pharmacy, Biotene didn't work for Greg but the Amosan was great. Jill.
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Just a quick one. I actually found that a bicarb mix with water was really good. Didn't taste great and tou had to make sure that you didn't swallow it, but it was cheap and worked really well for the ulcers and general sensitivity. Hope all is going OK. S
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Hi Alana, I totally get the 'spooky' bit of significant events eg. diagnosis, happening on other significant dates. Greg was diagnosed on my Dad's birthday, and so many other things since have happened on a 'significant' date. Hope you had some quiet moments of reflection of your Grandad and were able to find some memories of him that were able to bring you some joy amongst the sadness. Will be thinking of you Tuesday (19th??) on what I imagine will be a very difficult day for you. Take care, Jill.
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