As it seems to be my habit to write blog posts just before something happens, here I go again!
We had our appointment last Thursday with the surgeon to get the histology results ('histology' means the study of cells and microscopic stuff), and as you may already be aware, it didn't go terribly well. Not because of the results, but because of a registrar (junior doctor) who was standing in for the surgeon. The registrar unfortunately had very little knowledge, and even less empathy. I haven't been so angry for a very long time. However, he eventually fled the room, and shall be ignored henceforth. Be gone, minion!
The surgeon (probably summoned urgently by someone telling her the registrar had run away and there was a patient about to lose the plot) went through the histology report with us, and the results are mixed.
First up, the good news: I don't need any more surgery! YAY! There was a chance that they may not have been able to get enough of a border of healthy tissue around the tumours, which would have meant going back into surgery. They got a clear margin, and I'm done with surgery. Very, very happy about that!
Next, the not quite so good news: the lymph nodes they removed looked clear on first inspection. However when they were thoroughly checked, one of them had a micro cancer in it. When they talk about lymph nodes, they talk about micro and macro cancers. This one was a micro cancer, which means it had only just got there, and hadn't gotten around to unpacking it's bags or meeting the neighbours yet.
Because it was so tiny, and the other lymph nodes they removed were all clear, they are going to leave the other lymph nodes in. But because it was there at all, the necessity for me to have chemotherapy has gone up from about 10% to 50%.
The surgeon said that they are suggesting, rather than recommending, that I have chemo, and that they are leaving the decision up to me.
How nice! The ones with all the years of training and experience and degrees and white coats, are going to let ME make the decision about whether I have chemo or not.
Then they said that I'd have a meeting with the chemo guys in 2-3wks, so they could give me percentages and probabilities and statistics, and then I could make the decision.
Sigh... more waiting, which I was extremely unexcited about, but had finally mustered up a few more skerricks of patience, to wait, again.
Until this morning, when the phone rang. It was the hospital, saying they had an appointment for me this afternoon, if I could make it! After a minute of frantic mental calculations involving travel time and the logistics of 4 kids, I said yes, thank you very much!
So, I'm off this afternoon, to talk statistics and survival rates with the chemo guys.
Preparations for Round Two are beginning.
Wednesday, August 24, 2016
Wednesday, August 17, 2016
An Eclipse Of The Moon - or, post-surgery update.
Time for an update. It's been a while, since my last post, and things have been happening.
I had surgery 2 weeks ago, on August 4. They took a few lymph nodes out and sent them off to the lab for testing, while they did the mastectomy. Those lymph nodes came back clear for signs of cancer, so I got to keep the rest of my lymph nodes. This is really good news, because it means much lower chances of possible problems down the track from lymphodema. So, yay!
I spent 2 nights in hospital, after having problems with my blood pressure dropping after surgery - this made things very interesting when I tried doing something extravagant, like sitting up. However, I got there in the end, and despite a power cut at the hospital because of a major storm going on, I got home! A week after surgery, I got the drain out, which has made a big difference to my discomfort levels - getting 35cm of plastic tubing out of my body, and not having to carry round a bagful of tubes and canisters has been good. Although my youngest son was a bit disappointed, he's been very interested in how it all worked, and kept wanting to check how much fluid was in the canister every day when he got home from school. I guess it was sort of like checking the rain gauge?! I think maybe he's going to be an engineer, or a doctor. Or maybe a professional air guitarist...
Then there were complications with pain meds - apparently I'm sensitive to them. And THEN there's been a bit of lymphodema in my arm, and now I'm dealing with cording! Cording is scar tissue forming in the lymph drainage channels, and it hurts. I've got some in my arm, and I can also feel some across the top of my chest.
So it's been quite busy, what with one thing and another!
I've spent a lot of time on the couch, watching Olympics and sleeping, we've had a wonderful array of food fairies who have brought us dinner every night, friends have done washing and looked after kids, I've had lots of visitors and texts and messages and phone calls, and we have been very well cared for and loved.
This afternoon we go back to see the surgeon. We'll get the results of the testing they've been doing on the lymph nodes and tumors, and we'll be told what the suggested plan is for further treatment. At this point, I'm expecting to be told I need radiation and hormone therapy, and in the back of my head is the possibility that I might need chemo as well.
It feels very much like I'm going to see the judge to hear my sentence!
I don't want to be doing any of these things. I want to be planning what's going to be happening in the community garden this spring, and drooling over seed catalogues while planning my own vege garden, and planting new fruit trees, and finishing my proof-reading course, and being fully involved in all my kids activities, and thinking about carpet colours for my daughter's new bedroom, and working out with my husband when, exactly, our new shed is going to be built.
I think I'm pretty much over the shock of the diagnosis, and now I'm more frustrated and grumpy and scared, than shocked.
None of this is what I wanted. But it's what I've got, so I'm dealing with it one day - or one hour - at a time.
Do today well. That's what I'm trying to do. Some days that means I rest and heal. And some days I manage to pick up a little bit more of what I've - temporarily! - let got of.
I saw some photos I took 2 years ago, of an eclipse of the moon. And somehow it made me think of my life. It's dark at the moment, and it's going to get darker. It's scary, and things aren't right. But this shadow will eventually pass, and slowly, slowly things will come back to normal. It won't ever be 'normal' like before the 22 June, but close enough to be recognisable as normal.
So I'm holding 2 thoughts in my mind. The first is, do today well. The second is, this too, shall pass!
I had surgery 2 weeks ago, on August 4. They took a few lymph nodes out and sent them off to the lab for testing, while they did the mastectomy. Those lymph nodes came back clear for signs of cancer, so I got to keep the rest of my lymph nodes. This is really good news, because it means much lower chances of possible problems down the track from lymphodema. So, yay!
I spent 2 nights in hospital, after having problems with my blood pressure dropping after surgery - this made things very interesting when I tried doing something extravagant, like sitting up. However, I got there in the end, and despite a power cut at the hospital because of a major storm going on, I got home! A week after surgery, I got the drain out, which has made a big difference to my discomfort levels - getting 35cm of plastic tubing out of my body, and not having to carry round a bagful of tubes and canisters has been good. Although my youngest son was a bit disappointed, he's been very interested in how it all worked, and kept wanting to check how much fluid was in the canister every day when he got home from school. I guess it was sort of like checking the rain gauge?! I think maybe he's going to be an engineer, or a doctor. Or maybe a professional air guitarist...
Then there were complications with pain meds - apparently I'm sensitive to them. And THEN there's been a bit of lymphodema in my arm, and now I'm dealing with cording! Cording is scar tissue forming in the lymph drainage channels, and it hurts. I've got some in my arm, and I can also feel some across the top of my chest.
So it's been quite busy, what with one thing and another!
I've spent a lot of time on the couch, watching Olympics and sleeping, we've had a wonderful array of food fairies who have brought us dinner every night, friends have done washing and looked after kids, I've had lots of visitors and texts and messages and phone calls, and we have been very well cared for and loved.
This afternoon we go back to see the surgeon. We'll get the results of the testing they've been doing on the lymph nodes and tumors, and we'll be told what the suggested plan is for further treatment. At this point, I'm expecting to be told I need radiation and hormone therapy, and in the back of my head is the possibility that I might need chemo as well.
It feels very much like I'm going to see the judge to hear my sentence!
I don't want to be doing any of these things. I want to be planning what's going to be happening in the community garden this spring, and drooling over seed catalogues while planning my own vege garden, and planting new fruit trees, and finishing my proof-reading course, and being fully involved in all my kids activities, and thinking about carpet colours for my daughter's new bedroom, and working out with my husband when, exactly, our new shed is going to be built.
I think I'm pretty much over the shock of the diagnosis, and now I'm more frustrated and grumpy and scared, than shocked.
None of this is what I wanted. But it's what I've got, so I'm dealing with it one day - or one hour - at a time.
Do today well. That's what I'm trying to do. Some days that means I rest and heal. And some days I manage to pick up a little bit more of what I've - temporarily! - let got of.
I saw some photos I took 2 years ago, of an eclipse of the moon. And somehow it made me think of my life. It's dark at the moment, and it's going to get darker. It's scary, and things aren't right. But this shadow will eventually pass, and slowly, slowly things will come back to normal. It won't ever be 'normal' like before the 22 June, but close enough to be recognisable as normal.
So I'm holding 2 thoughts in my mind. The first is, do today well. The second is, this too, shall pass!
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