February 2010
Teach,
Wow! your writing is powerful.
I don't have the eloquence of phrase or the clarity of thought that Harker and yourself have, nor do I have the experience of Julie........ I just want to say you have a huge load on your plate right now and I wish you all the strength you need to get through it.
I hope you can have some moments of relief from the mountains of questions that are likely to go through your head between now and Tuesday.
I hope you have clear thoughts and the calmness required to process what is raised in the appt with your oncologist.
My thoughts are with you and sending hugz too,
Jill
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February 2010
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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February 2010
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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February 2010
Hi Lyn,
Welcome (I always feel awkward about saying that on here because in reality, none of us wish that we even needed to know the site existed).
You are so right, this is a great site and is definitely able to provide friendship, understanding and inspiration. It is really useful when those down days occur. Visit frequently!!
All the best,
Jill.
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February 2010
Hi Helen37,
My husband is also terminal, his primary cancer was oesophageal with secondaries in his abdomen/peritoneum(spelling?) and a secondary tumour on the brain was discovered in early December.
The unknown time frame is very distressing, we were given a prognosis in December of 2-3 months, obviously we hope they are wrong.
I feel like I am walking a tightrope, trying to keep the balance between being 'too real' and 'being too hopeful'. I am scared of getting my hopes up too high as then I will have further to fall.
Talk with your boyfriend's oncologist/medical team about all the questions that you have, they may not be able to give you all the answers, but if you don't ask, they're not likely to tell you anything.
It is exhausting being the partner/carer, try to remember to take time out for yourself too. A very hard lesson to learn, I know, I am still working on that myself!!
Thinking of you and sending you strength and courage,
Jill.
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February 2010
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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Hi Willow,
It is a common thread here about the triviality issues of people who haven't walked in our shoes.
I can also relate to the jealousy that you refer to, I feel extremely jealous that they can all continue on with their 'happy families' and my own family is never going to be the same again.
I actually find it quite difficult to be with several of the school mums who are my main support base (and who I really do appreciate for all that they have done for us) because they are a classic example of what our family was and it causes me pain and sadness to think of the difference in our futures.
I'm not pleased that I feel that way, but I have to acknowledge it and know that it is just the way I feel, it's not right and it's not wrong, it just is.
I hope that tomorrow is a better day and that you can find clarity in your thoughts, give yourself time and trust your instincts.
Hugz to you,
Jill xo
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February 2010
Thanks Willow,
Children certainly are amazing! Our boys seem to be coping fairly well, most of the time they are pretty 'normal'.
Last night at dinner, our youngest told us he didn't want to go to see the counsellor anymore. I told him I understood that going there was very hard because we were talking about stuff that is scary and sad. I said to him that even if we didn't go to see her, we would still have to deal with the scary and sad stuff about Daddy and that she had helped lots of other people who have had someone in their family die, so it would be good for her to be able to help us too.
I said the more people we have to help us and talk about our feelings with, the better it will be for us to manage.
He said, 'when will stop going to see her, when Daddy dies?'
I said I think we will need to see her for a while after he dies to help us with those new feelings.
This was the first time he had raised anything about Greg without any prompting/questioning by us. He must be thinking about it a bit which is good that he is not just burying it away.
Thanks so much for your kind words, hope you are feeling a bit brighter today, the trivial stuff that others find all-consuming can be very frustrating and draining.
Jill xo
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February 2010
Alana,
Just wondering if the bottle you were opening was for you or someone else, I'm guessing even if it was for you, given the turn of events you didn't get to drink it anyway.
Switch to twist caps!!!
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