Ringing the bell
A couple of weeks ago, I came across this article about an oncologist who experienced cancer for herself and realised how trite some of her 'reassurances' to patients can be. Two key observations have come out of this for me.
Firstly, I didn't know about 'ringing the bell' at the end of treatment. I didn't know this was a thing. And today, I found the bell at Velindre. But I haven't rung it yet. Why not?? you may ask! Because I really don't feel like I'm at the end of treatment. I still have a good number of herceptin treatments to go, and this whole ovary removal thing to explore. Yes, I am past the biggest stages: surgery, chemotherapy and radiotherapy are all done and that is fantastic. A massive relief. But I'm not finished yet.
And on that note, and Secondly, I met with my lovely surgeon - Kelvin - last Monday, and effectively he signed me off his list. He is really lovely, and in many ways I'm a bit sad that I won't see him again. He always has a laugh and a joke, but equally knows how to talk about the serious stuff. He was admiring my hair (aka wig) colour and teasing the breast cancer nurse - who is a genuine redhead, and very beautiful - that my hair colour is what she should have. He was likening her to Wilma Flintstone - she preferred to be Velma from Scooby-Doo! Cheeky boy.
He was telling me that I would have annual mammograms on my left boob until I am 50, at which point I will go on to the normal screening programme, which is mammograms every 3 years. This concerns me a bit, as this current cancer was caught after 8 years. I mentioned this, and he piped up "even though excessive screening can mean you have treatment when you don't need it?!", citing recent research. Yes. Natalie, the BC Nurse expressed some empathy with my position, so we agreed that we'd talk again in 5 years time. By then, he'll probably have moved on (boo!) and research will also have moved on. So we will see.
And that is the bit of the conversation that chimed with the article, and the oncologist realising the impact of what you say to patients. Kelvin was just citing research, which is perfectly valid and I completely understand that. But he doesn't know what it is like to have cancer twice. He doesn't know the fear that just having it once leaves you with. Natalie did, because she has those conversations with her patients. In fact, there is generally better understanding of it, as you now get a follow up support pack to help you transition away from the regular hospital visits and the strange sense of abandonment you can feel. These days - unlike 20 years ago, when my mum was diagnosed - there is more reassurance that you can come back if you're worried about anything. They take your worries about twinges and headaches seriously. It helps.
So the next thing coming is the appointment on 5th July with the gynecologist. Something Natalie said - about definitely not being able to work through the ovary removal surgery, major abdominal surgery - has made me worry more about this. I had the impression it would be keyhole surgery and less intrusive. Now, I'm worried about what scars it will leave me with. So I will explore more carefully whether I actually need my ovaries removed. Can't they test to check if I am through the menopause? It is definitely more than 12 months since I've had a period, now. But I am keeping an open mind and will see what is what in a couple of weeks time.
In the meantime, my wig and I are going partying tomorrow. Off to The Grosvenor House Hotel in London to see whether our library has won Outstanding Library Team at the THELMAS. And I've just spotted that Richard Ayoade is the host! Awesome! Keep your fingers crossed for us!
Firstly, I didn't know about 'ringing the bell' at the end of treatment. I didn't know this was a thing. And today, I found the bell at Velindre. But I haven't rung it yet. Why not?? you may ask! Because I really don't feel like I'm at the end of treatment. I still have a good number of herceptin treatments to go, and this whole ovary removal thing to explore. Yes, I am past the biggest stages: surgery, chemotherapy and radiotherapy are all done and that is fantastic. A massive relief. But I'm not finished yet.
And on that note, and Secondly, I met with my lovely surgeon - Kelvin - last Monday, and effectively he signed me off his list. He is really lovely, and in many ways I'm a bit sad that I won't see him again. He always has a laugh and a joke, but equally knows how to talk about the serious stuff. He was admiring my hair (aka wig) colour and teasing the breast cancer nurse - who is a genuine redhead, and very beautiful - that my hair colour is what she should have. He was likening her to Wilma Flintstone - she preferred to be Velma from Scooby-Doo! Cheeky boy.He was telling me that I would have annual mammograms on my left boob until I am 50, at which point I will go on to the normal screening programme, which is mammograms every 3 years. This concerns me a bit, as this current cancer was caught after 8 years. I mentioned this, and he piped up "even though excessive screening can mean you have treatment when you don't need it?!", citing recent research. Yes. Natalie, the BC Nurse expressed some empathy with my position, so we agreed that we'd talk again in 5 years time. By then, he'll probably have moved on (boo!) and research will also have moved on. So we will see.
And that is the bit of the conversation that chimed with the article, and the oncologist realising the impact of what you say to patients. Kelvin was just citing research, which is perfectly valid and I completely understand that. But he doesn't know what it is like to have cancer twice. He doesn't know the fear that just having it once leaves you with. Natalie did, because she has those conversations with her patients. In fact, there is generally better understanding of it, as you now get a follow up support pack to help you transition away from the regular hospital visits and the strange sense of abandonment you can feel. These days - unlike 20 years ago, when my mum was diagnosed - there is more reassurance that you can come back if you're worried about anything. They take your worries about twinges and headaches seriously. It helps.
So the next thing coming is the appointment on 5th July with the gynecologist. Something Natalie said - about definitely not being able to work through the ovary removal surgery, major abdominal surgery - has made me worry more about this. I had the impression it would be keyhole surgery and less intrusive. Now, I'm worried about what scars it will leave me with. So I will explore more carefully whether I actually need my ovaries removed. Can't they test to check if I am through the menopause? It is definitely more than 12 months since I've had a period, now. But I am keeping an open mind and will see what is what in a couple of weeks time.
In the meantime, my wig and I are going partying tomorrow. Off to The Grosvenor House Hotel in London to see whether our library has won Outstanding Library Team at the THELMAS. And I've just spotted that Richard Ayoade is the host! Awesome! Keep your fingers crossed for us!
Comments
Post a Comment