Shout the good news, spin the bad...
At the end of all this, I think I'm going to go into politics. I've spent a week trying to work out the best way to spin this news. If Therese Rein needs a spin doctor, someone let me know. If not, there's probably still a market for it in the Palace with the corgis...
So, the good news first! And it is good news. Just because I have a bit of bad news does not mean I don't get to celebrate the good news.
It was all worth it! The months of nausea, pain, dislike of chocolate and all the rest of the chemo bleughness was all worth it. My scans came back last week and the results were better than anyone expected. All tumours in my system have shrunk - the scans can only pick up a couple of tiny tumours in my lymph nodes - about 6mm in size. There is only one tumour left in my adrenal system, and it's 13mm - again, tiny. So chemo has been a glorious success, much more successful than expected by anyone. Hurrah!
What are the implications of this? (Especially since there are still tumours, albeit small.) I have been looking forward to what I affectionately term my 'window' for a long time now - my window is the time that everything is normal, I can go back to work and be nice and normal (got to stop using that word, it doesn't mean anything). I'm in window at the moment. Window does eventually end when I require new treatment or when the cancer actually starts manifesting itself. The fact that chemo has been so successful means that the window should be months, if not years, which is much longer than I was expecting. Hurrah!
Shall I just get the bad news out of the way? I know you're waiting for it, so there's no real point harping on about how good the good news is. Maybe I'll harp some more after we've got the bad news out of the way.
Just over a week ago I started getting some really bad pain. It started in my chest, it felt like it was in my ribs. Went to see the doctor, couldn't find anything wrong. (Actually, we ruled out all of the really bad stuff - blood clots, pneumonia etc, and if it's not really bad, it's not that important what it really is.) Pain then moved to my neck the next day, then to the left side of my face, then to my forehead and eyes. When it finally moved up to my forehead and eyes, it became completely excruciating. I was physically sick the pain was so bad. So we toddled into hospital.
When doctors have absolutely no idea what's wrong with you, but it looks really bad, they tend to admit you for 'observation'. I think this is largely so that if you die, you die while being observed in hospital, so it looks like they did something responsible instead of sending you home. Apparently it's really bad if they send you home and then you die.
So I lost the argument and got admitted into hospital. Actually the hospital was full, and my doctor kicked someone else out of bed so that I could have her bed. It did mean that my bed wasn't ready until about 10 o'clock at night, by which time my mother was so tired and furious that she nearly completely lost it. (They had sent me home in the meantime, which kinda defeated the whole purpose of admitting me, surely. But what do I know.) Oh, and they also did an MRI of my head (again, trying to eliminate all the really nasty stuff, like blood clots).
Next morning my doctor rocks in, with his Serious Face on. Now, my doctor doesn't do the Serious Face thing very often. Previous conversation with doctor went more like this:
Me: No, I'm not coming into hospital. I have a hot date tonight.
Dr: Ooh, a hot and steamy date?
Me: No, it's too early for such things! What kind of girl do you think I am?
Dr: Jess, you probably don't have much time left. You really should be making it a hot and steamy date...
And yes, you vultures, of course I disobeyed my doctor's orders! (So I'm a difficult patient...)
Anyway, I digress. Back to the Serious Face conversation. On the plus side, they can't find any cause for the headaches (as I explained before, this is good news. It means nothing bad is causing them). So I can go home again. On the other hand, the MRI did show a new tumour in my left occipital lobe. Very small, about 13mm - the size of a chickpea. (Also the size of a marble, but I like chickpea better, it sounds more squishable.) Not big enough to be causing the headaches, or causing any problems at all yet.
The good news? We caught it really early while it's still really small and before it starts growing into important stuff and causing any damage. This also means that we can get rid of it - radiate the sucker and take it out. THIS IS TREATABLE, folks. We CAN do something about this one.
Unfortunately, my chemo regime doesn't really penetrate into the brain, so the chemo would have had no effect on it. We didn't know we needed it to at the time.
Oh, come on, how did you think this post was going to end? The promise of bad news with the mention of headaches and MRIs... it was an obvious an ending as a Mills & Boons novel (I even managed to mention rumpy-pumpy half way through. Not bad.).
And the headaches? Well, they're long gone now. They've served their purpose - they made us do the MRI, which found the tumour, which because we've caught it early, we can now treat and get rid of. So thank you, Lord, for sending the headaches. I do have some suggestions for improving efficiency, however. If we hadn't bothered with the new tumour, we could have avoided the headaches and thus the discovery of the new tumour. Just a suggestion, though, I'm sure your way is much better in the long run.
So what does this mean? Practically, it means I'm still in Brissie, and looking to stay here for a while longer yet. I have meetings with neuro-surgeons and radiation oncologists this week to discuss what we'll be doing. From what I understand, we'll radiate, then operate, then radiate some more.
If we can get this sorted out, then my window should be nice and long indeed. In the meantime, I am enjoying a nice window time, and then I will look forward to post surgery and radio window again.
Mama has gone back up to Mackay anyway, even though I'm not joining her now. She was getting to the point where she definitely needed a break, and she needed to be with Dave and Tim and to potter round the house and to feel normal again (oops, used that word again). So she's gone back up to Mackay. She did a truly amazing job, being the primary driving force getting me through chemo. She was there at all times, bullied and nagged me into eating when I didn't want to, making sure I bothered to get out of bed each day, and managing to make each day bearable, and most days enjoyable. 'One flat white and a serve of cinammon toast on turkish' is proving to be quite a lonely phrase. 'Two' sounds much better.
I want to share with you a conversation I had with my beloved Mama a couple of weeks ago at breakfast. This is why I love my mama so much and why I couldn't have done chemo without her.
Me: I feel like a great sucky octopus, just leeching off everyone and not giving anything back.
Mama: Don't be ridiculous. I wouldn't be here if you were an octopus and neither would any of your friends. You still manage to give lots back.
Me: (Tearing up) I wish I had woken you up in the middle of the night for you to say that instead of stewing on it for three hours.
Mama: You great silly moo.
So I'm staying with Dad now, and with Beata and Soph when they come back from Polond in a couple of weeks time. The changing of the guard, as it were. (For months Sophie has been asking "Jessie, why do you not live with us anymore?" and getting upset whenever I go home. I spoke to her on the phone the other night, and she seemed a bit put out that I was now sleeping in her bed. Can't make an omelette, you know...)
I don't mind radio and surgery so much. Radiation is just a daily visit for a couple of weeks, and this time it won't be accompanied by the pain of last December. Surgery, scary as the thought of someone drilling into my brain is, is still not too bad a thought for me - I have recovered fast and well from all my surgeries. So, while I can't say that radio and surgery are less 'invasive' than chemo, they are less 'life-impacting', if that makes sense. I have a quiet certainty that this is all fixable, anyway, for what it's worth. (No, that's not me 'being positive', it is just an intuitive conviction that this is just a glitch.)
So, spin aside, how am I really feeling? I'm not really sure. I've gone a bit manic since Mama left - I am constantly 'doing' something, I will never sit still and think. And that's kinda impressive given I'm not working. So maybe I do need to sit down and think about it and maybe (heaven forbid) get a little upset about it. Maybe. Maybe after I actually see all the relevant specialists and find out what's happening. In the meantime, I'm having a good time Cleopatra-ing.
Speaking of blind positive thinking, can someone please read The Secret and email me a review? I refuse to read it on principle - I don't read or listen to anything that promises that if I do this or that, then I can cure my cancer. (Okay, I read the Bible, but its promises are a bit more eternal than that.) However, my roommate in hospital last week recommended it, and I find it much harder to diss 'think positive' comments from fellow patients than I do from perky and vapid sales assistants. But I should know what I'm talking about when it comes to the latest 'think yourself healthy' nonsense. So if someone could email me a review, please, that would be wonderful.
So overall, the news IS actually good. Chemo has been a rip-roaring success. I am enjoying a great window of social activity (come on guys, I've made a couple of references to 'dates' now, you do the maths. A lady doesn't kiss and tell, you know.). If I must have a brain tumour (and it appears I must), then we have caught it early and we can treat it and get rid of it. After we have fixed that little glitch, I can enjoy what could potentially be a very long and happy window.
How was my spin? It's bloody hard to spin anything involving the words brain tumour, I'll have you know.
Life is good. I am blessed.
May God bless you as much as he does me. (Perhaps minus the brain tumour, obviously.)
Thanks for being part of my chemo journey. Welcome to the next leg of the trip!
With much love,
Jess
PS. In answer to your question, the left occipital lobe affects the vision. Maybe start practicing your reading out loud skills, just in case.
So, the good news first! And it is good news. Just because I have a bit of bad news does not mean I don't get to celebrate the good news.
It was all worth it! The months of nausea, pain, dislike of chocolate and all the rest of the chemo bleughness was all worth it. My scans came back last week and the results were better than anyone expected. All tumours in my system have shrunk - the scans can only pick up a couple of tiny tumours in my lymph nodes - about 6mm in size. There is only one tumour left in my adrenal system, and it's 13mm - again, tiny. So chemo has been a glorious success, much more successful than expected by anyone. Hurrah!
What are the implications of this? (Especially since there are still tumours, albeit small.) I have been looking forward to what I affectionately term my 'window' for a long time now - my window is the time that everything is normal, I can go back to work and be nice and normal (got to stop using that word, it doesn't mean anything). I'm in window at the moment. Window does eventually end when I require new treatment or when the cancer actually starts manifesting itself. The fact that chemo has been so successful means that the window should be months, if not years, which is much longer than I was expecting. Hurrah!
Shall I just get the bad news out of the way? I know you're waiting for it, so there's no real point harping on about how good the good news is. Maybe I'll harp some more after we've got the bad news out of the way.
Just over a week ago I started getting some really bad pain. It started in my chest, it felt like it was in my ribs. Went to see the doctor, couldn't find anything wrong. (Actually, we ruled out all of the really bad stuff - blood clots, pneumonia etc, and if it's not really bad, it's not that important what it really is.) Pain then moved to my neck the next day, then to the left side of my face, then to my forehead and eyes. When it finally moved up to my forehead and eyes, it became completely excruciating. I was physically sick the pain was so bad. So we toddled into hospital.
When doctors have absolutely no idea what's wrong with you, but it looks really bad, they tend to admit you for 'observation'. I think this is largely so that if you die, you die while being observed in hospital, so it looks like they did something responsible instead of sending you home. Apparently it's really bad if they send you home and then you die.
So I lost the argument and got admitted into hospital. Actually the hospital was full, and my doctor kicked someone else out of bed so that I could have her bed. It did mean that my bed wasn't ready until about 10 o'clock at night, by which time my mother was so tired and furious that she nearly completely lost it. (They had sent me home in the meantime, which kinda defeated the whole purpose of admitting me, surely. But what do I know.) Oh, and they also did an MRI of my head (again, trying to eliminate all the really nasty stuff, like blood clots).
Next morning my doctor rocks in, with his Serious Face on. Now, my doctor doesn't do the Serious Face thing very often. Previous conversation with doctor went more like this:
Me: No, I'm not coming into hospital. I have a hot date tonight.
Dr: Ooh, a hot and steamy date?
Me: No, it's too early for such things! What kind of girl do you think I am?
Dr: Jess, you probably don't have much time left. You really should be making it a hot and steamy date...
And yes, you vultures, of course I disobeyed my doctor's orders! (So I'm a difficult patient...)
Anyway, I digress. Back to the Serious Face conversation. On the plus side, they can't find any cause for the headaches (as I explained before, this is good news. It means nothing bad is causing them). So I can go home again. On the other hand, the MRI did show a new tumour in my left occipital lobe. Very small, about 13mm - the size of a chickpea. (Also the size of a marble, but I like chickpea better, it sounds more squishable.) Not big enough to be causing the headaches, or causing any problems at all yet.
The good news? We caught it really early while it's still really small and before it starts growing into important stuff and causing any damage. This also means that we can get rid of it - radiate the sucker and take it out. THIS IS TREATABLE, folks. We CAN do something about this one.
Unfortunately, my chemo regime doesn't really penetrate into the brain, so the chemo would have had no effect on it. We didn't know we needed it to at the time.
Oh, come on, how did you think this post was going to end? The promise of bad news with the mention of headaches and MRIs... it was an obvious an ending as a Mills & Boons novel (I even managed to mention rumpy-pumpy half way through. Not bad.).
And the headaches? Well, they're long gone now. They've served their purpose - they made us do the MRI, which found the tumour, which because we've caught it early, we can now treat and get rid of. So thank you, Lord, for sending the headaches. I do have some suggestions for improving efficiency, however. If we hadn't bothered with the new tumour, we could have avoided the headaches and thus the discovery of the new tumour. Just a suggestion, though, I'm sure your way is much better in the long run.
So what does this mean? Practically, it means I'm still in Brissie, and looking to stay here for a while longer yet. I have meetings with neuro-surgeons and radiation oncologists this week to discuss what we'll be doing. From what I understand, we'll radiate, then operate, then radiate some more.
If we can get this sorted out, then my window should be nice and long indeed. In the meantime, I am enjoying a nice window time, and then I will look forward to post surgery and radio window again.
Mama has gone back up to Mackay anyway, even though I'm not joining her now. She was getting to the point where she definitely needed a break, and she needed to be with Dave and Tim and to potter round the house and to feel normal again (oops, used that word again). So she's gone back up to Mackay. She did a truly amazing job, being the primary driving force getting me through chemo. She was there at all times, bullied and nagged me into eating when I didn't want to, making sure I bothered to get out of bed each day, and managing to make each day bearable, and most days enjoyable. 'One flat white and a serve of cinammon toast on turkish' is proving to be quite a lonely phrase. 'Two' sounds much better.
I want to share with you a conversation I had with my beloved Mama a couple of weeks ago at breakfast. This is why I love my mama so much and why I couldn't have done chemo without her.
Me: I feel like a great sucky octopus, just leeching off everyone and not giving anything back.
Mama: Don't be ridiculous. I wouldn't be here if you were an octopus and neither would any of your friends. You still manage to give lots back.
Me: (Tearing up) I wish I had woken you up in the middle of the night for you to say that instead of stewing on it for three hours.
Mama: You great silly moo.
So I'm staying with Dad now, and with Beata and Soph when they come back from Polond in a couple of weeks time. The changing of the guard, as it were. (For months Sophie has been asking "Jessie, why do you not live with us anymore?" and getting upset whenever I go home. I spoke to her on the phone the other night, and she seemed a bit put out that I was now sleeping in her bed. Can't make an omelette, you know...)
I don't mind radio and surgery so much. Radiation is just a daily visit for a couple of weeks, and this time it won't be accompanied by the pain of last December. Surgery, scary as the thought of someone drilling into my brain is, is still not too bad a thought for me - I have recovered fast and well from all my surgeries. So, while I can't say that radio and surgery are less 'invasive' than chemo, they are less 'life-impacting', if that makes sense. I have a quiet certainty that this is all fixable, anyway, for what it's worth. (No, that's not me 'being positive', it is just an intuitive conviction that this is just a glitch.)
So, spin aside, how am I really feeling? I'm not really sure. I've gone a bit manic since Mama left - I am constantly 'doing' something, I will never sit still and think. And that's kinda impressive given I'm not working. So maybe I do need to sit down and think about it and maybe (heaven forbid) get a little upset about it. Maybe. Maybe after I actually see all the relevant specialists and find out what's happening. In the meantime, I'm having a good time Cleopatra-ing.
Speaking of blind positive thinking, can someone please read The Secret and email me a review? I refuse to read it on principle - I don't read or listen to anything that promises that if I do this or that, then I can cure my cancer. (Okay, I read the Bible, but its promises are a bit more eternal than that.) However, my roommate in hospital last week recommended it, and I find it much harder to diss 'think positive' comments from fellow patients than I do from perky and vapid sales assistants. But I should know what I'm talking about when it comes to the latest 'think yourself healthy' nonsense. So if someone could email me a review, please, that would be wonderful.
So overall, the news IS actually good. Chemo has been a rip-roaring success. I am enjoying a great window of social activity (come on guys, I've made a couple of references to 'dates' now, you do the maths. A lady doesn't kiss and tell, you know.). If I must have a brain tumour (and it appears I must), then we have caught it early and we can treat it and get rid of it. After we have fixed that little glitch, I can enjoy what could potentially be a very long and happy window.
How was my spin? It's bloody hard to spin anything involving the words brain tumour, I'll have you know.
Life is good. I am blessed.
May God bless you as much as he does me. (Perhaps minus the brain tumour, obviously.)
Thanks for being part of my chemo journey. Welcome to the next leg of the trip!
With much love,
Jess
PS. In answer to your question, the left occipital lobe affects the vision. Maybe start practicing your reading out loud skills, just in case.
posted by Jessie at 3:52 pm
2 Comments:
Well, just so long as the left occipital lobe doesn't affect your ability to write blog entries... otherwise what am I going to do for laughs, tears and killing time at work?
And see if you can download The Chaser's send-up of The Secret. It's gotta be better for you than the original... on the basis that laughter is the best medicine.
Talk soon, chickadee...
Love
Jacqui
Hi Beautiful,
Your delivery is always so witty! I must confess to having read the secret. It's a dumbed down version on the ancient laws of attraction, and it actually does work! Case in point: Amanda has no money til payday as she has being buying new accessories for cocktail party. Rather than focus on my lack of funds I tell myself how rich I am and that money will be coming.....last night in the post a cheque arrives, today at lunchtime I order food at the Palace Foodcourt and have a chat to the guy serving and he gives it to me for nix! YAY - go the secret!
Enough about me - so glad you've posted an update, looking forward to catching up soon. Jonesy has a new pimp hang we want to share with you!!
Love Amanda x
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