All custardy
For a while there, things have been going all custardy. In fact, they probably still are quite eggy, but I'm getting my perspective back and feeling a bit better.
Recovery from the abdominal surgery was so fast, it was amazing. It was literally a two and a half week recovery for something that should have taken six weeks. Given how many people were praying for me, I guess I shouldn't really be suprised :) I am very blessed.
The pain in the neck, however, has been the pain in the neck. It hasn't improved, and started getting worse a couple of weeks ago. Two weeks ago I also developed severe nausea and started vomiting up all my pain and anti-nausea meds. I have so many doctors, and each one prescribed something new, took something else away, and in the end I was on a ridiculously complex cocktail of drugs that something had to be done.
On Tuesday I went to my radiation appointment and was in so much pain I couldn't lie down for it. We spent all day in radiation that day talking to various doctors and their registrars, and in the end I was admitted to hospital so we could sort it all out, and get a grip on what medications I was on and what meds I should be on, and just get back to normal.
Thankfully it worked really well. I'm still on an elaborate cocktail of drugs, but we know it's the right elaborate cocktail of drugs now!
As to my neck, we also did some tests there. It turns out that about a third of my C1 vertebra (the top one that holds my head up) is tumourous and has been eroded. This means that there is a chance it could collapse, in which case I would need a very nasty operation (probably fusing my top two vertebrae together, pretty much killing off any neck mobility). [Note: this is the really custardy bit.] However, the good news is we've already treated this through radiation, so now we're just waiting for the radiation to work over the next six weeks! I ask you to please pray that the radiation treatment is successful, and I have a lot of faith that God will answer this prayer as well. I am very confident here, which is why things don't seem so custardy any more!
It's Sunday morning (early - can't sleep) and I am on weekend leave from the hospital. Yes, they let you out for good behaviour! I have to go back to the hospital tomorrow - I haven't been discharged, I just have something called a 'gatepass'. But hopefully I will be officially discharged tomorrow.
The first week of nausea was spent at home, and unfortunately coincided with the visit of Beata and Sophie. I’m so disappointed that I spent that week so sick and unable to do anything. It would have been nice to do some fun things with them. It was hard for Beata I think, not only because looking after a nauseous and vomiting person is unpleasant, but also because she came down with the express intention of cooking me lots of healthful foods, and I was completely disinterested in anything food-related at all! But it was still wonderful to see them and to spend time with them again – even if Soph does think that Jessie vomiting is just hilarious.
The second week of nausea was spent in hospital – I had already given in and called Mama to ask her to come down; she arrived on the Saturday beforehand. It was a completely crazy week, with plans changing every hour, depending on which doctor we’d seen last. The decision was made (or presented to me, there wasn’t much leeway in it, truth be told) to start chemo early, in January. There was even talk of starting before Christmas, but logistically that was too crazy. This does mean that my travel plans have been put on hold, unfortunately. Not cancelled – it just means we’ll travel after chemo!
I have pretty much decided to undergo my chemo in Brisbane. More on this decision later, there’s a lot behind it, but I don’t want to get into it now! This means that I need to see my medical team in Brisbane before the end of the year – and since it’s Christmas-time at the moment, everything is well and truly crazy! So we have been cancelling flights, changing flights, trying to fit in Christmas and it’s been mad. I wasn’t well enough to go back to Mackay last Friday, which was the original plan, which means that Mama and I didn’t get to go up to Laguna Quays with Dave and John to play golf widows (by the pool, with books and cocktails!). So quite disappointed about that, plus I feel bad that I’m being so disruptive to Mama’s life.
But the new plan (assuming I stay well, the drug cocktail continues to work, and that I’m discharged on Monday) is that Mama and I will fly up to Mackay on Tuesday, and Rich will follow on Friday. None of us have even thought about Christmas, so apologies for lack of Christmas cards, presents and all Christmas-associated things! Hope to get back on track soon, if belatedly. We will have the family Christmas, and then I will fly to Brisbane to see my oncologist there, and then onto Sydney the next day to spend New Year’s Eve with Nik, who’s coming over from Japan! I’m very excited about that and determined to be well enough for that! (Don’t worry, I will be Nik!) I will find out when I’m in Brisbane when I start chemo, so will fly back to Brisbane for that in early January.
In the meantime, did I mention my highly glamorous neck brace I now have to wear? Not all the time, but whenever I’m mobile – so at home where no one can see is fine, but the moment I walk out the door… It’s a cross between Queen Elizabeth I’s ruff and a plastic straightjacket used for dogs!
Thank you so much for your thoughts and prayers, and please forgive the fact that I’m not keeping much in touch at the moment – I do go quite anti-social when things are rough. Please do keep me in your prayers, and please also know that you are in mine, with great gratitude. Please pray specifically that my radiation treatment will be successful, and that I can continue to keep my pain under control. Thank you so much for all your love. I feel so much love from my wonderful family and friends and I know how very blessed I am.
With much love and thanks,
Jessie xoxoxo
Recovery from the abdominal surgery was so fast, it was amazing. It was literally a two and a half week recovery for something that should have taken six weeks. Given how many people were praying for me, I guess I shouldn't really be suprised :) I am very blessed.
The pain in the neck, however, has been the pain in the neck. It hasn't improved, and started getting worse a couple of weeks ago. Two weeks ago I also developed severe nausea and started vomiting up all my pain and anti-nausea meds. I have so many doctors, and each one prescribed something new, took something else away, and in the end I was on a ridiculously complex cocktail of drugs that something had to be done.
On Tuesday I went to my radiation appointment and was in so much pain I couldn't lie down for it. We spent all day in radiation that day talking to various doctors and their registrars, and in the end I was admitted to hospital so we could sort it all out, and get a grip on what medications I was on and what meds I should be on, and just get back to normal.
Thankfully it worked really well. I'm still on an elaborate cocktail of drugs, but we know it's the right elaborate cocktail of drugs now!
As to my neck, we also did some tests there. It turns out that about a third of my C1 vertebra (the top one that holds my head up) is tumourous and has been eroded. This means that there is a chance it could collapse, in which case I would need a very nasty operation (probably fusing my top two vertebrae together, pretty much killing off any neck mobility). [Note: this is the really custardy bit.] However, the good news is we've already treated this through radiation, so now we're just waiting for the radiation to work over the next six weeks! I ask you to please pray that the radiation treatment is successful, and I have a lot of faith that God will answer this prayer as well. I am very confident here, which is why things don't seem so custardy any more!
It's Sunday morning (early - can't sleep) and I am on weekend leave from the hospital. Yes, they let you out for good behaviour! I have to go back to the hospital tomorrow - I haven't been discharged, I just have something called a 'gatepass'. But hopefully I will be officially discharged tomorrow.
The first week of nausea was spent at home, and unfortunately coincided with the visit of Beata and Sophie. I’m so disappointed that I spent that week so sick and unable to do anything. It would have been nice to do some fun things with them. It was hard for Beata I think, not only because looking after a nauseous and vomiting person is unpleasant, but also because she came down with the express intention of cooking me lots of healthful foods, and I was completely disinterested in anything food-related at all! But it was still wonderful to see them and to spend time with them again – even if Soph does think that Jessie vomiting is just hilarious.
The second week of nausea was spent in hospital – I had already given in and called Mama to ask her to come down; she arrived on the Saturday beforehand. It was a completely crazy week, with plans changing every hour, depending on which doctor we’d seen last. The decision was made (or presented to me, there wasn’t much leeway in it, truth be told) to start chemo early, in January. There was even talk of starting before Christmas, but logistically that was too crazy. This does mean that my travel plans have been put on hold, unfortunately. Not cancelled – it just means we’ll travel after chemo!
I have pretty much decided to undergo my chemo in Brisbane. More on this decision later, there’s a lot behind it, but I don’t want to get into it now! This means that I need to see my medical team in Brisbane before the end of the year – and since it’s Christmas-time at the moment, everything is well and truly crazy! So we have been cancelling flights, changing flights, trying to fit in Christmas and it’s been mad. I wasn’t well enough to go back to Mackay last Friday, which was the original plan, which means that Mama and I didn’t get to go up to Laguna Quays with Dave and John to play golf widows (by the pool, with books and cocktails!). So quite disappointed about that, plus I feel bad that I’m being so disruptive to Mama’s life.
But the new plan (assuming I stay well, the drug cocktail continues to work, and that I’m discharged on Monday) is that Mama and I will fly up to Mackay on Tuesday, and Rich will follow on Friday. None of us have even thought about Christmas, so apologies for lack of Christmas cards, presents and all Christmas-associated things! Hope to get back on track soon, if belatedly. We will have the family Christmas, and then I will fly to Brisbane to see my oncologist there, and then onto Sydney the next day to spend New Year’s Eve with Nik, who’s coming over from Japan! I’m very excited about that and determined to be well enough for that! (Don’t worry, I will be Nik!) I will find out when I’m in Brisbane when I start chemo, so will fly back to Brisbane for that in early January.
In the meantime, did I mention my highly glamorous neck brace I now have to wear? Not all the time, but whenever I’m mobile – so at home where no one can see is fine, but the moment I walk out the door… It’s a cross between Queen Elizabeth I’s ruff and a plastic straightjacket used for dogs!
Thank you so much for your thoughts and prayers, and please forgive the fact that I’m not keeping much in touch at the moment – I do go quite anti-social when things are rough. Please do keep me in your prayers, and please also know that you are in mine, with great gratitude. Please pray specifically that my radiation treatment will be successful, and that I can continue to keep my pain under control. Thank you so much for all your love. I feel so much love from my wonderful family and friends and I know how very blessed I am.
With much love and thanks,
Jessie xoxoxo
posted by Jessie at 5:54 am
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