Just when I think that everything is back 'under control' and I can 'relax' a bit........along comes another issue to deal with. We've been reducing Greg's 'dex' medication over a period of time with the aim being to get him off it altogether, it is causing him to lose muscle strength, a lot of bloating/stomach distention/fluid build up and is probably mostly responsible for Greg's high blood sugar level. So, we're down to 1/2 a dex every second day, 3 days into that regime he gets a headache. One of the downsides of reducing the dex is that we might have swelling on the brain occur again (the dex is to control the swelling). I am warned to look out for the signs he was experiencing before we found the tumour, headache/vagueness/fatigue/confusion. His fatigue has increased over the 10 days, he hadn't been having any rests/sleeps during the day for weeks but last week started needing to lie down a few times a day. So that is one thing on the list. The day before he told me about the headache starting we had been at our neighbours in the afternoon for the kids to have a swim. Greg was very 'subdued' didn't contribute much to the conversation at all, didn't eat, didn't drink, basically just sat there. I was concerned as that was more like he was just before the tumour was found, but I also thought 'everyone is entitled to an off day and maybe this is his'. When he tells me about the headache, it feels like there is a pattern developing. I ring our GP and he agrees we should take a step back on the dex regime and increase it back to the step before of 1/2 tablet daily. This was on Monday and we were to have our weekly appt with him on Thursday, if I needed to call him before Thursday do so, otherwise we would see him then. Wednesday night as I get into bed I can feel that Greg is very hot. I take his temp and of course it is up. Thursday morning it is still up, when we see our GP he immediately organizes full blood tests, urine test for culturing and a chest x-ray. I'm feeling like we're heading down the same path as early December. I didn't get a phone call from the GP yesterday afternoon about the report from the chest x-ray, so am hoping that that is OK. The other results won't be through until sometime today but they are going to our oncologist. Greg spent the day sleeping yesterday with the exception of when he went for his 5km walk before breakfast and the 2hr period that we were out to go to the Dr and have the x-ray done. He got up about 5ish yesterday afternoon, had very little dinner and then was in bed by 9pm. I slept in the spare room so that my body heat didn't make him worse (and to try and get some decent sleep myself). I checked on him during the night, his temp was a little lower at 3.15am, I heard him heading out the door for his walk at 6am and asked if he had checked his temp. He hadn't, I did, it was 38.4C. BUT HE STILL WENT ON HIS WALK!! So now I sit here wondering what it all means, where it is all heading and what kind of day is he going to have today? My Dad is taking Greg to have his port flushed and then they are supposed to be heading to Greg's old work to meet a colleague for lunch. The boys have cricket tonight and I don't want him to be totally knackered for that......time will tell. Aaaaaggghhhhhh
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The blood and urine tests have come back clear as has the chest x-ray. At the day suite for his port flush, they took a blood sample from his port to see if there is any infection brewing there. The Resident also saw him and told him he wanted him to wait at the hospital for the Oncologist to see him. 2 hours later Dad rings me to say that the Oncologist has rung and told them he doesn't want to see Greg and they can leave! All good news.............but doesn't tell us why he has the temp. Feeling a bit more relaxed than earlier today, but still wondering what is going on??
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hugsss Jill, it must be so hard to have to try and be all the things you are having to be at the moment. Your amazing!!!! Oh, have you had your pedicure yet? :) Julie xo
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Hi Julie, No pedicure yet, but I am going to the movies and dinner with a couple of girlfriends tonight. Whoo hoo!! I'm really looking forward to getting out and switching off for a while (well as much as I can anyway). Greg's temp is a bit lower today, he has gone out to watch a mate playing golf, he will hire a cart and ride around being caddy. I've had a sleep in and our eldest son JK offered to make me brekky in bed! Very touching. Some of the Mums at school chipped in for a voucher for a full body massage for me, which is lovely, so I will have that to look forward to. My body really is so achy due to its permanent feeling of tension/tightness. Sometimes it actually really hurts to lie down in bed and feel it start to 'relax'. Jill xo
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Hey Jill Glad to hear you are going out with the girl and i hope you have a fun night and can relax for a bit. Even a small bit will make a difference to you!! I am wondering if you would be able to access the solaris centre that is at charlie g's. If so you could try some pranic healing or reiki. Both are just lovely i have found and very relaxing. the centre is run by volunteers, it might be worth a phone call to see if you are eligible. I really think that carers should be able to get some help aswell as patients. I am just wondering if i still have the phone number. hmmm now where did i leave my mobile .. lol My daily exercise hunting for the mobile. Ok, found mobile with no number ... apologies. Oh i know its on the cc website, if you search for solaris it should come up. Worth a try and if you are allowed you an have something once a week. Julie xo
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Hi Julie, Have only had reiki once and certainly did find it relaxing, maybe too relaxing!!! I was wiped out by it and there is no way I would take the chance of driving after it. Charlies is probably a bit too far away given that I would need someone else to come with me to do the driving.......but you've reminded me that my 'local' cancer support lady has mentioned it's available up at Kalamunda hospital (I think) and if so, I could probably drive to my Mum's place and get her to drop me off and then pick me up. If I time it right I could go back to her place and have a sleep before I had to drive home. Thanks! You've got me thinking!!!
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Ahhh yw Jill ... i just went to edit my post to say i am a muddle headed wombat today so anything i say that doesnt make sense that is why!!! haha Fingers crossed you can find something local to you. Get ringing girl and find out 😄 and enjoy!! I find i sleep very well after i have had reiki. Mostly i am a bit spacey straight after it but then i have energy - later that night is when i sleep well. We are all different and things affect us differently. :) Ok, i need to go and repair this very stupid thing i have done. I have pulled everything out of my linen cupboard and dumped it on the floor and am wading my way through sorting and washing everything. haha Julie xo
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Julie, You've just reminded me I'm s'posed to be doing washing too!!! Good luck with yours, I hope you don't have a really big linen cupboard!!! I remember a book from when I was little called "The Muddle-headed Wombat", I'm sure I quite liked it!! See ya, Jill.
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Hi Jill Good to hear the test results have come back clear....hopefully they will find out what is causing the temperatures...but if not they may just disappear without explanation as sometimes things do? Nice to hear that you are taking timeout for yourself. Enjoy ......love and best wishes, Willow xo xo
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