Well we got the results of Thursday's PET scan on Friday evening and it shows what we feared that I now have secondary breast cancer in both lungs (although very small)and in several lymph nodes in my neck and one in my lung.
It's all been found quite early as I have no symptoms and my tumour marker blood tests were clear but in the long run it's not curable.
I'm going to have weekly Taxol chemo (weekly! 3 weekly FEC 5 years ago was bad enough!)along with fortnightly intravenous injections of a new drug Avastin. I'm very lucky to have BUPA insurance through my husband's work and the oncologist is hoping I can have the treatment from home which will help enormously as a 36 mile round trip to Cardiff weekly would be a complete pain and add to the strain of it all.
My husband's work is only 8 mins drive from where we live so that is also reassuring for both of us that he could just pop home at lunchtime if there was a problem.
I'm in pragmatic mode at the moment but lapsed into quite a few very tearful moments yesterday. It's like I'm 2 people at the moment - one who is desperate to act as if everything is and will be fine and be positive and practical - I can hear myself telling people very calmly and then there's this other person trapped inside who's saying everything's not fine, it's awful and I don't want any of it and help! I can't jump out of my own body though so I haven't got a lot of choice! I don't think it's about being brave as people seem to think - it's self-preservation the fact I've no choice but to try and cope with it or whatever life I have left( and it could be quite a while yet) would be thoroughly miserable and I don't want that.
My beloved husband is finding it very hard. He's being uncharacteristicly very tearful and I'm the opposite which is odd as I usually am able to cry at the drop of a hat!
I think it will be easier to come to terms with once treatment starts and we get into a routine.
Anyway I think that's enough for now as my head's starting to jangle again! I'm not used to writing what I think down!
The internet's a wonderful thing and I've already found many women with similar problems to share with which does help when you feel so alone and afraid and yet need to be strong for those around you.
Sunday, 24 February 2008
Wednesday, 20 February 2008
Twists and turns
It has taken me more than 3 months since I set up this blog to actually take the plunge and write something!
Since this"journey" with breast cancer began when I was first diagnosed at the end of 2002 aged 32 my husband has been trying to persuade me to keep some sort of diary or written account of what's been happening and how I was feeling. I never felt up to doing that during or after treatment - it was all so raw and I was afraid of really facing my feelings if I had to look at them in black and white!
Anyway as life moved on and following a recurrence last year which was so much more straight forward compared to the first time, I felt life was on the up again after swiftly being able to return to work and "normal life" again so I set up the blog and felt I could give a positive account of life despite breast cancer.
However life has a way of coming and biting you just when you're feeling on your feet again! Firstly, I went on a most amazing 6 day outward bounds type course last September run by a charity called Odyssey for people who have had or have cancer. I was extremely unsporty at school and despite my slim figure have never been into much exercise and have always hated the idea of outdoorsy-based and outward bound type courses so I wasn't sure what I'd make of it. Also the organisers deliberately tell you very limited information about the course - not even exactly where in the UK it is - the whole course runs on the element of surprise and to challenge yourself. It really was a life-changing course for me. There were 10 other women on the course aged from 18-63 and we all got on extremely well and were freely able to share our stories as and when we wanted but there were no therapy groups or anything. I'm not able to say what we did in case anyone reading this gets to go but I'd highly recommend it. It's extremely well-organised and I came back with a renewed confidence and energy and desire to push myself to my limits and a feeling I could do whatever I really wanted to do.
Anyway, since then a lovely lady on that course who was only 33 who seemed full of energy and completely well was diagnosed with secondaries to the lungs just 6 weeks later and sadly died at the end of January this year. Many of us have kept in regular touch by email and this has hit us all very hard. I did not get to her know her that well during the course as she was in another group but she seemed such a positive vibrant person.
It was such a shock that someone who seemed so well and was able to do all the activities easily was to die just 4 months later. It hit both me and my husband very hard as you can't help think the same could happen to me. When you've had cancer you live with the fact it could come back or be in your body every day without you realising it. You come to terms with that and some days you can go without thinking about it but it's always there!
I went for a routine check-up at the beginning of this month and I plucked up courage to ask to be referred to a fertility clinic with an aim to ask to have tests to see whether the chemotherapy I had back in 2003 could have damaged my fertility as we'd been trying for a year without success just before my recurrence last March and then again unsuccessfully for 6 months since finishing my radiotherapy treatment in June 2007. As I've just turned 38 age is not on my side and although I've always been in two minds about even trying for a baby,worried in case the cancer came back or that a pregnancy could even cause it to come back with the surge of oestrogen during pregnancy but my desire to have a baby (maybe selfishly)has always over-ridden my fears!
Anyway the oncologist agreed but he also suggested I had some blood tests which might indicate if any cancer was in my body and also suggested a CT scan as I had not previously any scans.
I had the CT scan last week and was fully expecting everything to be normal as I have had no symptoms to suggest anything amiss. We went for the results on Monday evening and although my husband was fearing the worst I was ever the optimist although every time we've gone for results, being previously reassured all should be well it has always not turned out to be the case so goodness knows where I find optimism from!
The blood tests were fine but the CT scan show 2 very small nodules, one on each lung and also an enlarged lymph node which could all indicated secondary lung cancer but not conclusive. I now have to have a PET scan which we've been able to quickly arrange to have in London tomorrow and should have the results on Friday. This could be inconclusive too but I really hope we know one way or the other soon. We're fully prepared for bad news but dread it at the same time and just can't really think straight at the moment as we don't know what we're dealing with. It doesn't feel real to me at the moment and I seem mostly to be keeping pretty calm. My husband is in a state and finding it very difficult to cope. It is hard to say the right thing or know what we're supposed to be feeling. I know if it is bad news these nodules are very small and I would be lucky to be diagnosed relatively early but I know that in the longterm it's not curable - treatable but not curable. Even those words don't seem real!
Anyway this is a different first entry that the one I wanted to give back in November when things were going well and I was feeling optimistic about the future and even though having a baby might be possible. That's going to be a hard one to let go but life is hard and I just want to enjoy every day as cliched as that might sound!
I'm saying all this and it still may turn out to be benign nodules but after 2 bouts of cancer I just don't think I can count on luck anymore!
Since the Odyssey course I've been doing loads of fitness and love my badminton and running. My schoolfriends can't believe it's the same me!
I've even signed up for the Race For Life in Cardiff in June and have already been pledged over £500. I worry now that I may not be well enough to do it if I'm undergoing treatment by then but I'm determined to do it even if I have to crawl round.
Anyway that's enough for now. I have to keep strong until we know what we're up against.
Since this"journey" with breast cancer began when I was first diagnosed at the end of 2002 aged 32 my husband has been trying to persuade me to keep some sort of diary or written account of what's been happening and how I was feeling. I never felt up to doing that during or after treatment - it was all so raw and I was afraid of really facing my feelings if I had to look at them in black and white!
Anyway as life moved on and following a recurrence last year which was so much more straight forward compared to the first time, I felt life was on the up again after swiftly being able to return to work and "normal life" again so I set up the blog and felt I could give a positive account of life despite breast cancer.
However life has a way of coming and biting you just when you're feeling on your feet again! Firstly, I went on a most amazing 6 day outward bounds type course last September run by a charity called Odyssey for people who have had or have cancer. I was extremely unsporty at school and despite my slim figure have never been into much exercise and have always hated the idea of outdoorsy-based and outward bound type courses so I wasn't sure what I'd make of it. Also the organisers deliberately tell you very limited information about the course - not even exactly where in the UK it is - the whole course runs on the element of surprise and to challenge yourself. It really was a life-changing course for me. There were 10 other women on the course aged from 18-63 and we all got on extremely well and were freely able to share our stories as and when we wanted but there were no therapy groups or anything. I'm not able to say what we did in case anyone reading this gets to go but I'd highly recommend it. It's extremely well-organised and I came back with a renewed confidence and energy and desire to push myself to my limits and a feeling I could do whatever I really wanted to do.
Anyway, since then a lovely lady on that course who was only 33 who seemed full of energy and completely well was diagnosed with secondaries to the lungs just 6 weeks later and sadly died at the end of January this year. Many of us have kept in regular touch by email and this has hit us all very hard. I did not get to her know her that well during the course as she was in another group but she seemed such a positive vibrant person.
It was such a shock that someone who seemed so well and was able to do all the activities easily was to die just 4 months later. It hit both me and my husband very hard as you can't help think the same could happen to me. When you've had cancer you live with the fact it could come back or be in your body every day without you realising it. You come to terms with that and some days you can go without thinking about it but it's always there!
I went for a routine check-up at the beginning of this month and I plucked up courage to ask to be referred to a fertility clinic with an aim to ask to have tests to see whether the chemotherapy I had back in 2003 could have damaged my fertility as we'd been trying for a year without success just before my recurrence last March and then again unsuccessfully for 6 months since finishing my radiotherapy treatment in June 2007. As I've just turned 38 age is not on my side and although I've always been in two minds about even trying for a baby,worried in case the cancer came back or that a pregnancy could even cause it to come back with the surge of oestrogen during pregnancy but my desire to have a baby (maybe selfishly)has always over-ridden my fears!
Anyway the oncologist agreed but he also suggested I had some blood tests which might indicate if any cancer was in my body and also suggested a CT scan as I had not previously any scans.
I had the CT scan last week and was fully expecting everything to be normal as I have had no symptoms to suggest anything amiss. We went for the results on Monday evening and although my husband was fearing the worst I was ever the optimist although every time we've gone for results, being previously reassured all should be well it has always not turned out to be the case so goodness knows where I find optimism from!
The blood tests were fine but the CT scan show 2 very small nodules, one on each lung and also an enlarged lymph node which could all indicated secondary lung cancer but not conclusive. I now have to have a PET scan which we've been able to quickly arrange to have in London tomorrow and should have the results on Friday. This could be inconclusive too but I really hope we know one way or the other soon. We're fully prepared for bad news but dread it at the same time and just can't really think straight at the moment as we don't know what we're dealing with. It doesn't feel real to me at the moment and I seem mostly to be keeping pretty calm. My husband is in a state and finding it very difficult to cope. It is hard to say the right thing or know what we're supposed to be feeling. I know if it is bad news these nodules are very small and I would be lucky to be diagnosed relatively early but I know that in the longterm it's not curable - treatable but not curable. Even those words don't seem real!
Anyway this is a different first entry that the one I wanted to give back in November when things were going well and I was feeling optimistic about the future and even though having a baby might be possible. That's going to be a hard one to let go but life is hard and I just want to enjoy every day as cliched as that might sound!
I'm saying all this and it still may turn out to be benign nodules but after 2 bouts of cancer I just don't think I can count on luck anymore!
Since the Odyssey course I've been doing loads of fitness and love my badminton and running. My schoolfriends can't believe it's the same me!
I've even signed up for the Race For Life in Cardiff in June and have already been pledged over £500. I worry now that I may not be well enough to do it if I'm undergoing treatment by then but I'm determined to do it even if I have to crawl round.
Anyway that's enough for now. I have to keep strong until we know what we're up against.
Subscribe to:
Comments (Atom)
