http://thespohrsaremultiplying.com/living-with-loss/everyone-is-missing-someone/#axzz3MWfNC0ML
A touching post reminding us that although we are in the season of goodwill and cheer, it won't be like that for everyone and some people will be making a huge effort to put a smile on their face on Christmas Day.
Love to all of them, especially my lovely friends, you know who you are.
Sunday 21 December 2014
Diseases that kill us and diseases we donate to
http://www.iflscience.com/health-and-medicine/infographic-shows-differences-between-diseases-we-donate-and-diseases-kill-us
I love infographics! Here's an interesting one. Obviously it's US based. Would be really interesting to see a world view.
Are we donating to the right diseases? Or maybe the money donated makes better research and leads to the development of new treatments thus saving lives?
I love infographics! Here's an interesting one. Obviously it's US based. Would be really interesting to see a world view.
Are we donating to the right diseases? Or maybe the money donated makes better research and leads to the development of new treatments thus saving lives?
Cancer as a Turning Point
My friend who has recently gone through a mastectomy and is in the middle of months and months of follow-up treatments lent this book to me. She read it whilst she was in hospital and found it very helpful.
I wasn't so sure that I'd 'get on' with this book and when she gave it to me, my friend said 'you might not like it'. So I started reading with as much of an open mind as possible.
The book is written by a very experienced psychologist, Lawrence LeShan, who has treated numerous cancer patients - some of which died, some who went on to live a cancer-free life. The book tells the story of various patients and their individual situations and what changed (or didn't) after their diagnosis and treatment. It makes the overall point that after cancer, 'something needs to change'.
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I am very leery of telling people who have cancer that it is their fault and pointing out what they should or shouldn't have done in order to avoid or treat their illness (although I've come across plenty of people who have felt very free to give me the 'benefit' of their advice). I think having cancer is bad enough without being made to feel responsible for it. I'm also cynical of those stories of cancer survivors who have changed their life so much that they are evangelical and those who say 'I am SO glad I got cancer, it made me change my life/it made me see the things that are important/I live a much better life now'. Bollocks to that.
Being glad that you have a life-threatening disease that involves horrible treatments, causes pain and suffering for years or a lifetime afterwards and gives stress and pain to those who love you doesn't seem right to me. Cancer is not a gift!
So I felt myself on guard when I started reading the book. However, the author was careful to repeat "It is important to remember that you are not responsible for becoming ill, and you are not responsible for your recovery. What you are responsible for once you are ill is to do your best to get better. This means getting the best medical treatment possible and changing your life so that your inner healing abilities will be stimulated at the highest level possible."
Now, that I can deal with and identify with.
As I progressed into the book, I did feel that, despite his mission statement above, he did stray into the 'it's your fault' territory. However, not so much as I stopped reading. There was one thing that he wrote that really stuck with me - he says that evidently something had caused the cancer, something was malfunctioning somewhere in the body or mind, therefore to get a different result (ie no more cancer), why go on doing the same thing and expecting a different result? It's the definition of madness. So, I started some of the many exercises at the end of the book to see what they could bring me. This book did teach me some things. Notably, that something has to change and that life is too short to live it with sadness, pain, frustration and regret, doing things day after day that we hate, and that is a work in progress for me.
I remember that a lovely person sent me an email shortly after my operation saying that at least this was an opportunity for change and growth. I was feeling raw, sad, in pain, angry (no make that livid) and distressed at that point and sent a blistering reply back saying that I think I was ok actually and I didn't really want to change thank you very much. I now understand what she was trying to saying, although it wasn't the right time for me to hear it.
I have changed psychologically in subtle ways, I think. And I've changed my job, which, for various reasons, was a dreadful source of stress. I'm not doing something that is stress-less, but I am doing something I feel confident about and, most importantly, that brings me joy. The body and eating issues are more complicated and merit another post and my personal life isn't perfect (but whos is?). I haven't become evangelical, nor the type of person who runs marathons for breast cancer awareness, but I've changed. Maybe cancer was a turning point for me?
ps, if it doesn't apply to you, don't read the chapter 'The Person Who is Dying', I avoided it and hope never have to read it, at least, not for a long long time.
I wasn't so sure that I'd 'get on' with this book and when she gave it to me, my friend said 'you might not like it'. So I started reading with as much of an open mind as possible.
The book is written by a very experienced psychologist, Lawrence LeShan, who has treated numerous cancer patients - some of which died, some who went on to live a cancer-free life. The book tells the story of various patients and their individual situations and what changed (or didn't) after their diagnosis and treatment. It makes the overall point that after cancer, 'something needs to change'.
I am very leery of telling people who have cancer that it is their fault and pointing out what they should or shouldn't have done in order to avoid or treat their illness (although I've come across plenty of people who have felt very free to give me the 'benefit' of their advice). I think having cancer is bad enough without being made to feel responsible for it. I'm also cynical of those stories of cancer survivors who have changed their life so much that they are evangelical and those who say 'I am SO glad I got cancer, it made me change my life/it made me see the things that are important/I live a much better life now'. Bollocks to that.
Being glad that you have a life-threatening disease that involves horrible treatments, causes pain and suffering for years or a lifetime afterwards and gives stress and pain to those who love you doesn't seem right to me. Cancer is not a gift!
So I felt myself on guard when I started reading the book. However, the author was careful to repeat "It is important to remember that you are not responsible for becoming ill, and you are not responsible for your recovery. What you are responsible for once you are ill is to do your best to get better. This means getting the best medical treatment possible and changing your life so that your inner healing abilities will be stimulated at the highest level possible."
Now, that I can deal with and identify with.
As I progressed into the book, I did feel that, despite his mission statement above, he did stray into the 'it's your fault' territory. However, not so much as I stopped reading. There was one thing that he wrote that really stuck with me - he says that evidently something had caused the cancer, something was malfunctioning somewhere in the body or mind, therefore to get a different result (ie no more cancer), why go on doing the same thing and expecting a different result? It's the definition of madness. So, I started some of the many exercises at the end of the book to see what they could bring me. This book did teach me some things. Notably, that something has to change and that life is too short to live it with sadness, pain, frustration and regret, doing things day after day that we hate, and that is a work in progress for me.
I remember that a lovely person sent me an email shortly after my operation saying that at least this was an opportunity for change and growth. I was feeling raw, sad, in pain, angry (no make that livid) and distressed at that point and sent a blistering reply back saying that I think I was ok actually and I didn't really want to change thank you very much. I now understand what she was trying to saying, although it wasn't the right time for me to hear it.
I have changed psychologically in subtle ways, I think. And I've changed my job, which, for various reasons, was a dreadful source of stress. I'm not doing something that is stress-less, but I am doing something I feel confident about and, most importantly, that brings me joy. The body and eating issues are more complicated and merit another post and my personal life isn't perfect (but whos is?). I haven't become evangelical, nor the type of person who runs marathons for breast cancer awareness, but I've changed. Maybe cancer was a turning point for me?
ps, if it doesn't apply to you, don't read the chapter 'The Person Who is Dying', I avoided it and hope never have to read it, at least, not for a long long time.
Friday 28 November 2014
Baring their Scars - To reconstruct or not?
http://blog.thebreastcancersite.com/baringtheirscars/?utm_source=social&utm_medium=bcaware&utm_campaign=baringtheirscars&utm_term=20141127
Here's a moving short film about 3 breast cancer survivors who had to made different difficult decisions about reconstruction - a subject pretty close to my heart as January (one year after radiation and appointment with surgeon) approaches.
I was a bit disappointed to see that the woman who'd chosen a reconstruction seemed very sad but she did have implants so maybe that's much more 'artificial'. However, what is natural about having part of your body chopped off and replaced I ask myself!
Here's a moving short film about 3 breast cancer survivors who had to made different difficult decisions about reconstruction - a subject pretty close to my heart as January (one year after radiation and appointment with surgeon) approaches.
I was a bit disappointed to see that the woman who'd chosen a reconstruction seemed very sad but she did have implants so maybe that's much more 'artificial'. However, what is natural about having part of your body chopped off and replaced I ask myself!
Sunday 16 November 2014
Understanding Breast Cancer and Managing Fears
Here's a useful and clear website that will help you understand a bit about what's going on if you are newly diagnosed as having breast cancer.
http://www.breastcancer.org/symptoms/understand_bc?gclid=CNjswvPo8sECFafHtAodqTEA4g
This paragraph under 'Fears about Breast Cancer' particularly spoke to me. I sometimes feel like a right wuss with all the fears and stress going around in my head but this made me feel a bit less of a wuss:-
"The fear of breast cancer is unlike any other — psychologists and other experts agree on that. The fear can take many different forms, depending upon where you are in the breast cancer experience. Understand that many of your fears are shared by others. While fears are normal, they are uncomfortable to live with."
It really is a very useful resource for those who are family, friends, newly diagnosed (esp '10 ways to manage fear after diagnosis' - wish I'd read that last summer) or coping with the aftermath.
http://www.breastcancer.org/symptoms/understand_bc?gclid=CNjswvPo8sECFafHtAodqTEA4g
This paragraph under 'Fears about Breast Cancer' particularly spoke to me. I sometimes feel like a right wuss with all the fears and stress going around in my head but this made me feel a bit less of a wuss:-
"The fear of breast cancer is unlike any other — psychologists and other experts agree on that. The fear can take many different forms, depending upon where you are in the breast cancer experience. Understand that many of your fears are shared by others. While fears are normal, they are uncomfortable to live with."
It really is a very useful resource for those who are family, friends, newly diagnosed (esp '10 ways to manage fear after diagnosis' - wish I'd read that last summer) or coping with the aftermath.
Saturday 8 November 2014
Appointment with Oncologist
So I spent 3 hours in the hospital today. I had an appointment at 11h30 and saw the doctor nearly 2 hours later. To be fair, she did apologise and explain that she had to fit in two newly diagnosed patients and all their family. And I knew she'd be late in any case, she always is, so I brought a book.
In the end I got talking to two other women in the waiting room who, it turned out, had also had breast cancer. They were 5 and 6 years on in their story. It was nice to exchange with them and swop stories and experiences. And it made the time go faster too! Apparently I'll have 6 monthly mammograms and appointments for 5 years then it will be yearly. You can learn something from everybody you talk to, I think.
I made a list of what I wanted to discuss with the oncologist, which helped, as my brain turns to mush once I'm in front of the doctor. I forgot to mention the leg cramps that frequently wake me up in so much pain though.
I also forgot the results of my last mammogram, which wasn't very clever of me, so I have to fax those on Monday.
I did, however, do the pre appointment blood test. I am short of vitamin D, calcium, and my cholesteral is slightly high. Otherwise there are no cancer markers. That was a huge relief.
The thing that concerned the doctor most was my dizzy spells, fast beating heart, chest pains and wooshing in my head. She sent me off to the nurses' station upstairs where they took my blood pressure with a fancy machine. It was quite high. So I now need to see a cardiologist. I sort of knew this would need further investigation and this was part of the reason I'd delayed seeing the oncologist or taking the MRI that my doctor had ordered me to do. If it takes virtually all my Saturday for a simple oncology appointment how on earth am I going to fit in a cardiologist and all those related examinations when I'm working? I feel like I've just got my life going again and this problem is a real pain. I'm also wondering what the heck this is going to lead to?
Inevitably, my lifestyle and weight will be criticised, horrified noises will be made and changes will have to come. Pfffff. Anyway, it's good that she gave a damn and is willing to help me feel better. She claims the problem is nothing to do with the tamoxifen or the menopause. I'm not convinced, I've seen on the internet lots of women who have the same symptoms with tamoxifen and the menopause and this wasn't a problem at all until I had cancer. We'll see what happens.
As far as the cancer goes, she was happy with my general state of health, gave me a good examination. I mentioned the subject of reconstruction and that the surgeon had advised me to raise the subject with her. She said yes, he can inject fat into the breasts, that would be best for you and you'll lose weight off your abdomen too. I didn't mention that this was his preferred method of 'reconstructing' so it's good that she has the same idea and is positive about it. She confirmed that it will have to go through the Commission but sees no reason why it should not be approved. But I don't have to do it if I don't want to, she also mentioned.
She also reminded me that I should take advantage of the Post Cancer Cure and said it would be good to go in February. This is something I hadn't thought about. Or maybe Easter. I'll see what I can do.
I have a mammogram to do in March with a blood test too. I have a prescription for Vitamin D capsules, calcium tablets, tablets for high blood pressure and tamoxifen. I mentioned that I've gone from barely having an aspirin to taking a tonne of stuff. This bugs me somewhat but I sort of look upon Tamoxifen as a kind of life insurance (if it's doing what it should be doing).
It was a funny appointment in some ways. I mentioned that I'd taken up yoga once a week and she was really interested and said at the end, she wanted to do it herself so would I mind if she joined the class! Also we talked about meditation and it turns out she was really into Transcendental Meditation (which I practised for a long time and still do sporadically) so we swopped stories. She said 'oh we have a lot in common'! I like her.
In the end I got talking to two other women in the waiting room who, it turned out, had also had breast cancer. They were 5 and 6 years on in their story. It was nice to exchange with them and swop stories and experiences. And it made the time go faster too! Apparently I'll have 6 monthly mammograms and appointments for 5 years then it will be yearly. You can learn something from everybody you talk to, I think.
I made a list of what I wanted to discuss with the oncologist, which helped, as my brain turns to mush once I'm in front of the doctor. I forgot to mention the leg cramps that frequently wake me up in so much pain though.
I also forgot the results of my last mammogram, which wasn't very clever of me, so I have to fax those on Monday.
I did, however, do the pre appointment blood test. I am short of vitamin D, calcium, and my cholesteral is slightly high. Otherwise there are no cancer markers. That was a huge relief.
The thing that concerned the doctor most was my dizzy spells, fast beating heart, chest pains and wooshing in my head. She sent me off to the nurses' station upstairs where they took my blood pressure with a fancy machine. It was quite high. So I now need to see a cardiologist. I sort of knew this would need further investigation and this was part of the reason I'd delayed seeing the oncologist or taking the MRI that my doctor had ordered me to do. If it takes virtually all my Saturday for a simple oncology appointment how on earth am I going to fit in a cardiologist and all those related examinations when I'm working? I feel like I've just got my life going again and this problem is a real pain. I'm also wondering what the heck this is going to lead to?
Inevitably, my lifestyle and weight will be criticised, horrified noises will be made and changes will have to come. Pfffff. Anyway, it's good that she gave a damn and is willing to help me feel better. She claims the problem is nothing to do with the tamoxifen or the menopause. I'm not convinced, I've seen on the internet lots of women who have the same symptoms with tamoxifen and the menopause and this wasn't a problem at all until I had cancer. We'll see what happens.
As far as the cancer goes, she was happy with my general state of health, gave me a good examination. I mentioned the subject of reconstruction and that the surgeon had advised me to raise the subject with her. She said yes, he can inject fat into the breasts, that would be best for you and you'll lose weight off your abdomen too. I didn't mention that this was his preferred method of 'reconstructing' so it's good that she has the same idea and is positive about it. She confirmed that it will have to go through the Commission but sees no reason why it should not be approved. But I don't have to do it if I don't want to, she also mentioned.
She also reminded me that I should take advantage of the Post Cancer Cure and said it would be good to go in February. This is something I hadn't thought about. Or maybe Easter. I'll see what I can do.
I have a mammogram to do in March with a blood test too. I have a prescription for Vitamin D capsules, calcium tablets, tablets for high blood pressure and tamoxifen. I mentioned that I've gone from barely having an aspirin to taking a tonne of stuff. This bugs me somewhat but I sort of look upon Tamoxifen as a kind of life insurance (if it's doing what it should be doing).
It was a funny appointment in some ways. I mentioned that I'd taken up yoga once a week and she was really interested and said at the end, she wanted to do it herself so would I mind if she joined the class! Also we talked about meditation and it turns out she was really into Transcendental Meditation (which I practised for a long time and still do sporadically) so we swopped stories. She said 'oh we have a lot in common'! I like her.
Friday 7 November 2014
Appointment with oncologist, giving blood
Ok so I finally made the appointment after some compassionate chiding from various friends and kind offers to come with me or make the appointment on my behalf (thank you dear friends, you just keep on caring, I am so grateful).
Also, the dizzy spells, pounding heart, indigestion, chest pains and tiredness are back, so I'm feeling a bit scared about all of that. I got an appointment much more quickly than I expected, they were ready to see me the next day but I took a meeting on Saturday as it fits in with my work. I have to brave the lab tomorrow morning for a blood test which will measure all sorts of things (I looked it all up on the internet from the prescription), some of the things they will be looking for is cancer markers and markers for metastasis. Great. Feeling worried, actually. What if they find something and I'm plunged back into that world? Try to remain optimist Claire.
Also, the dizzy spells, pounding heart, indigestion, chest pains and tiredness are back, so I'm feeling a bit scared about all of that. I got an appointment much more quickly than I expected, they were ready to see me the next day but I took a meeting on Saturday as it fits in with my work. I have to brave the lab tomorrow morning for a blood test which will measure all sorts of things (I looked it all up on the internet from the prescription), some of the things they will be looking for is cancer markers and markers for metastasis. Great. Feeling worried, actually. What if they find something and I'm plunged back into that world? Try to remain optimist Claire.
Faces of Breast Cancer
J Lo sent me the link to these stories. I find them comforting and upsetting to read in equal measures. I do think, however, that it's important for people to be able to share their story and feel part of a swell of women who have all been through the same thing. When I scroll down and see all the faces, bald heads, smiles and courage, it brings a lump to my throat without even having to read the stories.
http://well.blogs.nytimes.com/projects/breast-cancer-stories?smid=fb-nytimes&smtyp=cur&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1409232722000&bicmet=1419773522000
Go ahead, read some!
http://well.blogs.nytimes.com/projects/breast-cancer-stories?smid=fb-nytimes&smtyp=cur&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1409232722000&bicmet=1419773522000
Go ahead, read some!
Monday 3 November 2014
Rethinking our breasts
Another TED talk, this one by a beauty queen who had a preventative double mastectomy.
I'm not sure that she suceeded in her mission to rethink our breasts, but her story is a powerful one. When I told my eldest son that I had breast cancer, he mentioned Angelina Jolie, didnt she have cancer Mummy? Well no, not exactly, but it goes to show how broad the influence of her similar decision was. I think she was brave to be honest about it. As to her decision, well, it was her personal décision. I sometimes think that I am glad that they reduced my 'good' breast so much, so that maybe I have less chance of getting cancer in that one.
Anyway, here's the talk.
http://blog.thebreastcancersite.com/rose/
I'm not sure that she suceeded in her mission to rethink our breasts, but her story is a powerful one. When I told my eldest son that I had breast cancer, he mentioned Angelina Jolie, didnt she have cancer Mummy? Well no, not exactly, but it goes to show how broad the influence of her similar decision was. I think she was brave to be honest about it. As to her decision, well, it was her personal décision. I sometimes think that I am glad that they reduced my 'good' breast so much, so that maybe I have less chance of getting cancer in that one.
Anyway, here's the talk.
http://blog.thebreastcancersite.com/rose/
Sunday 2 November 2014
Yes, I survived cancer. But that doesn't define me
http://www.ted.com/talks/debra_jarvis_yes_i_survived_cancer_but_that_doesn_t_define_me#t-1991
This is a great TED talk by Debra Jarvis about her experience with the trauma of breast cancer.
The gist of the talk is that we don't have to take on being a cancer survivor and make it define us. We can define ourselves otherwise. It's a choice.
"Yes, I survived cancer but that doesn't define me."
"Claim your experience but don't let it claim you."
Very thought provoking, definitely worth spending 16 minutes of your life listening to her.
Tell me, what 3 things define you?
This is a great TED talk by Debra Jarvis about her experience with the trauma of breast cancer.
The gist of the talk is that we don't have to take on being a cancer survivor and make it define us. We can define ourselves otherwise. It's a choice.
"Yes, I survived cancer but that doesn't define me."
"Claim your experience but don't let it claim you."
Very thought provoking, definitely worth spending 16 minutes of your life listening to her.
Tell me, what 3 things define you?
Monday 27 October 2014
nosocomephobia
I've been quiet recently, getting on with my life, working hard in fact. I've stepped up the teaching hours considerably and getting tired. However, it's good to meet new people, feel useful and meet people who don't know about my history, like a fresh start. I'm starting to feel myself and my energy levels are much better, although I do feel more tired much more quickly. I've sort of got used to the drug side effects, they are part of my life now. Friends ask me how I am and I say 'fine'. Which is pretty much true.
However, the past casts its shadow. I still haven't been to hospital for my MRI regarding my headaches but the headaches have stopped now, although the wooshing sound is ever present. I can't bring myself to put myself through that horrible test again (it was the one that really freaked me out, sometimes it's better not to know what's in store!). I still haven't made an appointment to see my oncologist, which I should have done in October (and here's the end of October). I haven't made an appointment for the pre appointment blood test. I thought I'd be looking forward to seeing her but I haven't made the appointment. I have pervaricated and I wasn't sure why but I think I know why deep down. I am frightened.
I am frightened of stepping inside a hospital and smelling the smell, feeling the memories, feeling ill, feeling pain, getting bad news.
I'm frightened that they'll find something bad inside and I'll be back to where I was, or worse.
I'm frightened that I'll have to stop Tamoxifen and take another drug which will have even worse side effects because they'll find from my blood test that I now have the menopause.
I'm frightened of getting those tests and the needles. See I thought the needle phobia would go away after such an intensive spate of needle-related tests last year, I thought I'd feel better about the needles but I've just gone back to how I was feeling about them before.
I'm frightened of having the 'reconstruction' although I want it but I don't want to go through all the tests, needles, pain and anathesia. And I'm frightened they'll say no you can't have a reconstruction and I'll be stuck like this forever with my ugly, misshapen, child 'breasts'.
And I'm still angry that my breasts have gone, by the way. That has not gone away.
I feel like I'm approaching a bad place right now and it may go downhill. I've started neglecting myself again. I feel in between a rock and a hard place.
I know the answer - make that appointment, go, face up to whatever there is to face up to. But I'm frightened. I know I don't really have nosocomephobia, I've just been through a hard time and want to forget it, but I do know that I can't forget it, it's time to remember, take a deep breath and plunge back into the medical world again.
It felt good to write that down.
However, the past casts its shadow. I still haven't been to hospital for my MRI regarding my headaches but the headaches have stopped now, although the wooshing sound is ever present. I can't bring myself to put myself through that horrible test again (it was the one that really freaked me out, sometimes it's better not to know what's in store!). I still haven't made an appointment to see my oncologist, which I should have done in October (and here's the end of October). I haven't made an appointment for the pre appointment blood test. I thought I'd be looking forward to seeing her but I haven't made the appointment. I have pervaricated and I wasn't sure why but I think I know why deep down. I am frightened.
I am frightened of stepping inside a hospital and smelling the smell, feeling the memories, feeling ill, feeling pain, getting bad news.
I'm frightened that they'll find something bad inside and I'll be back to where I was, or worse.
I'm frightened that I'll have to stop Tamoxifen and take another drug which will have even worse side effects because they'll find from my blood test that I now have the menopause.
I'm frightened of getting those tests and the needles. See I thought the needle phobia would go away after such an intensive spate of needle-related tests last year, I thought I'd feel better about the needles but I've just gone back to how I was feeling about them before.
I'm frightened of having the 'reconstruction' although I want it but I don't want to go through all the tests, needles, pain and anathesia. And I'm frightened they'll say no you can't have a reconstruction and I'll be stuck like this forever with my ugly, misshapen, child 'breasts'.
And I'm still angry that my breasts have gone, by the way. That has not gone away.
I feel like I'm approaching a bad place right now and it may go downhill. I've started neglecting myself again. I feel in between a rock and a hard place.
I know the answer - make that appointment, go, face up to whatever there is to face up to. But I'm frightened. I know I don't really have nosocomephobia, I've just been through a hard time and want to forget it, but I do know that I can't forget it, it's time to remember, take a deep breath and plunge back into the medical world again.
It felt good to write that down.
Wednesday 1 October 2014
Show you care
It's hard being the friend or family of someone who has cancer, is going through treatment, has gone through treatment but still needs support. It's hard because you want to do something, you don't want to see someone you love going through a hard time and a lot of the time, people just don't know what to do for the best, or what to say. Often you might feel really helpless, frightened to intrude or scared to do the wrong thing. Sometimes the person suffering doesn't even know what might help them too.
Everyone is different. One person's help might be another person's hell and that's why it's hard to judge the situation and nobody wants to intrude. And that's why some people might just end up doing nothing.
Personally, I think that's the worst thing - nothing. Believe me, if you do something, no matter what it is, whatever you do will be appreciated. I felt uncomfortable with those people who did or said nothing, who mentioned cancer not once (even if they knew), who seemed to shy away. It made me feel that they did not care about me, which might have been totally wrong, but that's what it felt like.
I always felt a bit crap if I knew someone had had a death in the family. I never knew what to say or how to say it and often said nothing and felt really bad afterwards. Then, after becoming addicted to NYPD Blue (I have boxed sets), I found a phrase that I could use, the one that the Detective Andy Sipowicz (my favourite character) always used when facing bereaved relatives. "I'm sorry for your loss". It's neutral and opens the door if someone wants to talk and at least it shows you know and acknowledge the pain that the bereaved person might be going through. So I make sure I say something. All the books I've read on this subject report that saying something is always better than saying nothing. Finding a good French translation is tricky and I'm not there yet, but I'll find a good French phrase one of these days.
I guess the cancer equivilant phrase might be "I was sorry to hear you were/are ill". Believe me, this phrase WILL help and make the patient feel ok and be touched by your concern and again it opens the door for them to share more details if they wish, or to not open up but just to have a nice feeling that someone cares.
Now, going on to another way of showing you care - the - as they call it in the US - care package. A mixture of thoughtful items that show you care and that will be useful or a luxury or just a really nice thing to receive. Perfect if you are far away from someone.
For my Birthday, I received a big package from my niece in UK which arrived today and I thought, as well as it being a fabulous and thoughtful Birthday present, it would be THE perfect care package. It contained a few chick lit don't have to concentrate too hard paperbacks, beautiful nail varnish, a cute carrying case and tin of tinted Vaseline, a selection box (I know, Christmas, already?) with sweeties and chocolate bars that reminded me of my childhood, a box with the softest socks in the world, foot cream and foot soak crystals and a lovely, touching letter on pretty paper. I'm in heaven! Every single item was thoughtfully selected just for me. That makes the difference.
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Amongst the care boxes that I was lucky enough to receive when I was going through treatment, there were cupcakes, English hard to get food products, loads of stuff from M&S (a rarity), Turkish Delight, walnut whips, loads and loads of paperbacks, smelly stuff for face and body, notepads, Bio Oil for scarring, facial water spray, chocolates and chocolates and chocolates, newspapers, magazines, shampoo, shower gel, a personalised blanket, little charms, cinema tickets, a voucher for a facial and a silver heart. And I'm sure I've forgotten something, it was all a bit of a daze to be honest but all was appreciated so very very much.
When my friend went into hospital for her mastectomy I gave her a hospital box containing tissues, trashy magazines, chocolate, lip balm, shower gel miniatures and a facial spritzer. My reasoning was 1. you're probably going to cry at some point (tissues), 2. you'll have lots of time and not much concentration (magazines) 3. you'll probably have a bad taste in your mouth after the op or after the hospital food (chocolates, mints) 4. it's very dry in a hospital (lip balm and spritzer) 5. hospitals smell horrible (fragrant shower gels). I think it had some Bio Oil for the scars too, I can't remember but that is a very useful thing.
I'm not saying for a minute that presents make up for other stuff like support, phone calls, texts, letters, emails, cakes, home baked food, doing the ironing or cleaning for someone, taking them to appointments. Don't get me wrong, just, if you wanted to send something if you're not able to be there for someone, there is something you can do to show that you are thinking of them.
Anyway, I hope this post has given you food for thought and helped you do or say something to someone who will really appreciate it. A little kindness goes a long way, it really does.
And thanks again to my thoughtful niece. Love you babe!
Everyone is different. One person's help might be another person's hell and that's why it's hard to judge the situation and nobody wants to intrude. And that's why some people might just end up doing nothing.
Personally, I think that's the worst thing - nothing. Believe me, if you do something, no matter what it is, whatever you do will be appreciated. I felt uncomfortable with those people who did or said nothing, who mentioned cancer not once (even if they knew), who seemed to shy away. It made me feel that they did not care about me, which might have been totally wrong, but that's what it felt like.
I always felt a bit crap if I knew someone had had a death in the family. I never knew what to say or how to say it and often said nothing and felt really bad afterwards. Then, after becoming addicted to NYPD Blue (I have boxed sets), I found a phrase that I could use, the one that the Detective Andy Sipowicz (my favourite character) always used when facing bereaved relatives. "I'm sorry for your loss". It's neutral and opens the door if someone wants to talk and at least it shows you know and acknowledge the pain that the bereaved person might be going through. So I make sure I say something. All the books I've read on this subject report that saying something is always better than saying nothing. Finding a good French translation is tricky and I'm not there yet, but I'll find a good French phrase one of these days.
I guess the cancer equivilant phrase might be "I was sorry to hear you were/are ill". Believe me, this phrase WILL help and make the patient feel ok and be touched by your concern and again it opens the door for them to share more details if they wish, or to not open up but just to have a nice feeling that someone cares.
Now, going on to another way of showing you care - the - as they call it in the US - care package. A mixture of thoughtful items that show you care and that will be useful or a luxury or just a really nice thing to receive. Perfect if you are far away from someone.
For my Birthday, I received a big package from my niece in UK which arrived today and I thought, as well as it being a fabulous and thoughtful Birthday present, it would be THE perfect care package. It contained a few chick lit don't have to concentrate too hard paperbacks, beautiful nail varnish, a cute carrying case and tin of tinted Vaseline, a selection box (I know, Christmas, already?) with sweeties and chocolate bars that reminded me of my childhood, a box with the softest socks in the world, foot cream and foot soak crystals and a lovely, touching letter on pretty paper. I'm in heaven! Every single item was thoughtfully selected just for me. That makes the difference.
Amongst the care boxes that I was lucky enough to receive when I was going through treatment, there were cupcakes, English hard to get food products, loads of stuff from M&S (a rarity), Turkish Delight, walnut whips, loads and loads of paperbacks, smelly stuff for face and body, notepads, Bio Oil for scarring, facial water spray, chocolates and chocolates and chocolates, newspapers, magazines, shampoo, shower gel, a personalised blanket, little charms, cinema tickets, a voucher for a facial and a silver heart. And I'm sure I've forgotten something, it was all a bit of a daze to be honest but all was appreciated so very very much.
When my friend went into hospital for her mastectomy I gave her a hospital box containing tissues, trashy magazines, chocolate, lip balm, shower gel miniatures and a facial spritzer. My reasoning was 1. you're probably going to cry at some point (tissues), 2. you'll have lots of time and not much concentration (magazines) 3. you'll probably have a bad taste in your mouth after the op or after the hospital food (chocolates, mints) 4. it's very dry in a hospital (lip balm and spritzer) 5. hospitals smell horrible (fragrant shower gels). I think it had some Bio Oil for the scars too, I can't remember but that is a very useful thing.
I'm not saying for a minute that presents make up for other stuff like support, phone calls, texts, letters, emails, cakes, home baked food, doing the ironing or cleaning for someone, taking them to appointments. Don't get me wrong, just, if you wanted to send something if you're not able to be there for someone, there is something you can do to show that you are thinking of them.
Anyway, I hope this post has given you food for thought and helped you do or say something to someone who will really appreciate it. A little kindness goes a long way, it really does.
And thanks again to my thoughtful niece. Love you babe!
Friday 26 September 2014
Happy Cancer-versary to me, one year on
So here I am writing this one year ago, the day after the operation that took away the cancer, the day before my Birthday.
How are things one year on? Well, everything has changed but nothing has changed! How do I feel? Well, I feel like I'm getting on with things. I dare to think of cancer as in the past sometimes. There are still physical effects, of course. The scars are still there - thick grey, bumpy lines with pinched skin on the left and are still painful from time to time, especially if I've been wearing the prothesis all day. And as far as I'm concerned, I don't have breasts any longer and they are just small lumps of fat, non sexual and pretty ugly when all said and done. I am still working on accepting this.
I told my friend that I wouldn't want large breasts back again because I would have felt that they would be unreal. What I want is my own beloved breasts back but I know this is not possible, so maybe something can be done to make my existing chest more pleasant to look at and that would mean I don't have to wear a prothesis. I have to wait until January to know about that so things stay as they are until then.
There are side effects to the Tamoxifen and the radiation has permanently, it seems made the skin around my 'breasts' and under my arm dark brown. I am also more tired more quickly, and I forget and overdo it sometimes. And sometimes, there are bad thoughts in my head.
I still see a psychologist who is helping me get on and make sense of this new world. I have a few sessions left with the kine which I must get around to doing.
Life is worrying right now as I have headaches and a wooshing sound in my head so I have an MRI on Tuesday (put back, should have been yesterday, long irritating medical story...). So of course I think 'cancer' but it probably isn't. That is one thing. I have to tell all sorts of people about the cancer and of course it informs any medical treatment for anything that I have now. There will always be the worry that it might come back but I feel the longer I go on, the less intense is that worry, but it's there like a grain of sand rubbing away in an oyster.
I worked today and didn't have too much time to think about what I was doing this time last year (well, what the surgeon was doing to me for 5 and a half hours that is). Then home to do homework with the kids and running around to get more Tamoxifen and Vitamin D from the chemists. It was then that I stopped to think and cried because of a tiny kind gesture from the chemist - she saw on my medical card that it was my Birthday tomorrow and gave me a pot of face cream as a gift. I was so touched I could barely get outside to my bike before I started crying.
I guess that sums things up really. I have terrible terrible memories of that day, that operation and I revisit them seldom. This photo takes me back but the memories are all there locked up in my head. I got home tonight and let myself sob and let the memories come back. My elder son was there and hugged me hard. Thank god for my boys and my dh, they have made me want to get through this, they are my reason for living.
The good thing, though, that stays with me like a rosy glow is the kindness shown to me during before and after. This has not faltered, the kindness still goes on and the special friends and my sister who looked after me, well, they are still supporting and loving, looking out for me and helping me along. I hope I have something to give back now, but it has certainly changed my perception of friendship and love and what to appreciate in life.
I remember St L who made my horrible Birthday as good as it could be - blowdried my hair in hospital, made me this cake, brought some Orangina, the Union Jack cups, the balloons on the hospital room door. What a star. That was one of many many kindnesses that will stay with me.
I asked the Listening Brunette what to do about this bitter sweet anniversary. She said 'faire la fete'! So that's what I'll be doing tomorrow night.
I asked the Listening Brunette what to do about this bitter sweet anniversary. She said 'faire la fete'! So that's what I'll be doing tomorrow night.
And the main thing is that I have survived one year. I'm still here. If I hadn't found the cancer when I did, this post would be very different indeed.
I am alive!
Saturday 13 September 2014
Goodbye Eric
Eric taught my children to swim in bebe nageur classes. He was a handsome, charming, cheerful guy, good fun to be with, you can see it in his twinkling eyes can't you? I can still picture him in his wetsuit standing on the diving board directing, teaching, laughing, encouraging, loving the kids and their mad ways - all of them. All the Mums swooned over him, queuing up to give 'bisous' to him.
I say 'was' because he died in the night of 3rd and 4th of September.
A few years ago he found out he had a brain tumor and suddenly his life took a terrible turnaround and his coaching and sporting activity came to an abrupt halt. He had been in a wheelchair for a long time, having difficulties speaking. His loving wife wheeled him to all the swimming galas (home and away), some of the training sessions and all the social events in the swimming club. He got lots of kisses from the children, who all adored him and when I spoke to him he always remembered which class mine were in and who was their trainer. His life was the pool. It must have been devastating not to be able to continue his very active, sporting life.
He was 42 years old and leaves a wife and young children.
Fucking cancer. This guy was a really great person, the sort of person that makes the world a good place to be. It's wrong that he's gone. Fucking cancer.
Thursday 11 September 2014
So here come the side effects...
I've been taking Tamoxifen for 8 months now. So far, so, well, okay really. Weight gain (well, can't lose weight despite eating a lot less and much better and exercising) - check! No periods - check. Nasty taste in mouth all the time - check. Mood swings - check. Tiredness - check. Thinning hair - check, flaking nails - check, leg cramps - check. I always considered that it could be worse - I might have cancer again, or other more serious side effects or other nastier treatments.
Well, maybe that day has come. I've been having terrible headaches recently, almost like people describe migranes - seeing stars, having to lie in a dark room etc. I also have a sort of wooshing sound in time to my pulse in my head all the time. This has been for about 4 weeks new. And I've been really really tired.
It does say on the instructions for Tamoxifen that headaches are a side effect, but a less typical one.
So, finally I went to the doctor to get checked out. It was his young, cute locum, who was very thorough (except for the moment when he put his stethoscope on the side of my chest looking for a beat and I didn't have the heart to tell him he was listening to my prothesis).
It seems there is no neurological problem, however, to be sure I have to have an MRI and a blood test beforehand to check that the cancer has not metastied in my head or that I don't have a blockage somewhere. Either of those scenarios sound horrendous so I'm pretty scared for 24th, hoping I don't have bad news, that would be such a killer exactly one year after my operation.
At least they are checking up on me and taking me seriously.
Cross your fingers for me on 24th. I hate MRI's by the way, I find them very upsetting, sigh.
Saturday 30 August 2014
Cancerversary
It's around a year, give or take a few days, that I found out I had breast cancer. I don't want to know the exact day (although I could easily find it out by looking back at my blog) because it's not a day I'd like to celebrate like a Birthday or a wedding anniversary or a house purchase or the birth of a baby - a happy thing. I don't want to know because I don't want that day spoilt for the rest of my life, I want to live it free from cancer thoughts and bad bad memories. That's not to say that I won't remember the day. As Kerri says in her excellent blog 'Cancer is not a Gift', it's a day she remembers because it's a day she can't forget. I feel the same way but I know that time will heal.
http://www.chicagonow.com/cancer-is-not-a-gift/2014/08/cancerversary-i-remember-because-i-cant-forget/
Memories are hardest when they're painful. Some of my dearest and oldest friends lost a parent during the last 12 months. I wonder how they will cope with the anniversary of their loved one's death. For me, that's much harder to cope with than my cancerversary. I'm still alive and with my loved ones. They aren't in that position. With my friends, we talked about the 100 days of grief and how it's a sort of turning point in the grief process for many people. This originates from the Buddhist religion when at 100 days after a death, a memorial service is held.
This memorial service is known as “Tamboon Roy Wan”. The purpose of this 100 Day Ceremony is to gain merit for the departed Spirit and to help shorten the time spent by the Spirit in any of the Buddhist realms in which that Spirit may find itself.
100 days also seems to have some significance to cancer. I found this article http://www.ncbi.n
http://www.chicagonow.com/cancer-is-not-a-gift/2014/08/cancerversary-i-remember-because-i-cant-forget/
This memorial service is known as “Tamboon Roy Wan”. The purpose of this 100 Day Ceremony is to gain merit for the departed Spirit and to help shorten the time spent by the Spirit in any of the Buddhist realms in which that Spirit may find itself.
100 days also seems to have some significance to cancer. I found this article http://www.ncbi.n
The existential plight in cancer: significance of the first 100 days.
Abstract
"The
Existential Plight in cancer is a poorly recognized but significant
period. It starts with the definite diagnosis and continues for two to
three months into the illness, approximately 100 days. The chief signs
are the predominance of life/death concerns, e-en over worries about
health or physical symptoms. One hundred and twenty newly diagnosed
cancer patients were interviewed, tested, and followed from about ten
days after diagnosis at four to six week intervals until three to four
months had elapsed. Plight was analyzed from the viewpoint of coping
strategies, resolution of problems, vulnerability, total mood
disturbance, and predominant concerns. Patients who had higher emotional
distress during this period had many regrets about the past, were
pessimistic, came from a multiproblem family, and had marital problems.
The widowed or divorced had higher vulnerability, as did patients who
anticipated little or no support from significant others. Although
vulnerability increased with advanced staging and many symptoms, at the
time of diagnosis psychosocial distress crossed diagnostic and
prognostic boundaries, enabling investigation to predict within limits
those patients who will cope effectively or fail to cope with cancer and
its ramifications."
Basically, the way you'll cope with a cancer diagnosis can be already predicted by your previous experiences and family situation if the health professionals take note. Seems obvious I guess, but it could be an indicator as to which patients particularly need support.
The first 100 days of a first term presidency are also used as an indicator as to how successful and popular he or she will be. Franklin D Roosevelt pushed through a bunch of bills in the first 100 days of his presidency. Some people also have first 100 days celebrations when their new baby reaches this mark.
Anyway, back to the 12 month thing, I have been feeling uncomfortable about this cancerversary and will be glad when August is finished and September begins. However, the one anniversary that I am not looking forward to is, sadly, my Birthday. My operation was on the day before my Birthday and I spent my day in hospital practically unable to walk and in pain. Nobody has died, I know, but it's still a day I'm dreading and unfortunately, a day I've been celebrating for 51 years now, so it'll be hard to forget.
Basically, the way you'll cope with a cancer diagnosis can be already predicted by your previous experiences and family situation if the health professionals take note. Seems obvious I guess, but it could be an indicator as to which patients particularly need support.
The first 100 days of a first term presidency are also used as an indicator as to how successful and popular he or she will be. Franklin D Roosevelt pushed through a bunch of bills in the first 100 days of his presidency. Some people also have first 100 days celebrations when their new baby reaches this mark.
Anyway, back to the 12 month thing, I have been feeling uncomfortable about this cancerversary and will be glad when August is finished and September begins. However, the one anniversary that I am not looking forward to is, sadly, my Birthday. My operation was on the day before my Birthday and I spent my day in hospital practically unable to walk and in pain. Nobody has died, I know, but it's still a day I'm dreading and unfortunately, a day I've been celebrating for 51 years now, so it'll be hard to forget.
Monday 18 August 2014
Why Some People Change and Some Stay the Same
I've been getting regular mails from MindBodyGreen on health topics for a few months now. They are always useful, interesting and give food for thought or encouragement (as well as lots of healthy recipes).
This one rang a bell; it's a story about a woman who had breast cancer at 25yrs old and afterwards changed her life. I'm not into the whole 'life changing thing because I've been ill', but change has come, I admit; my attitude towards life has changed somewhat, not sweating the small stuff, taking more care of myself, eating better, doing exercise and generally a more pragmatic attitude.
So here's the article:-
http://www.mindbodygreen.com/0-14938/why-some-people-change-their-lives-but-others-stay-stuck.html
So here's the article:-
http://www.mindbodygreen.com/0-14938/why-some-people-change-their-lives-but-others-stay-stuck.html
Friday 27 June 2014
How far would you travel for a nipple?
Here's a man who's found his niche market!
This touching 5 minute video shows the story of a feisty woman who had a double mastectomy and her visit to Vinnie Myers in Maryland.
Vinnie is not a doctor or surgeon but a tattoo artist who seems like a pretty cool guy and he specialises in creating 3D nipple tattoos for women who have had a mastectomy. I have heard that in hospital, after a reconstruction by implant, women are offered stickers to replace their nipples and eventually tattoos if they wish. The problem is that it's not necessarily a speciality for plastic surgeons and they have difficulty in matching the colour of a remaining nipple in the case of a unilateral mastectomy or the creating something with a natural look as they have around just 12 pigments to choose from. Vinne hand mixes the pigments and tries to match it as well as possible to the skin colour and original nipple colour.
As the patient says, "there's a lot of bad nipples out there".
Apparently, people have flown in from as far as Dubai to 'get a Vinnie' and his tattoo parlour does 1500 - 2000 nipples per year and is at full capacity. He was about to give up the nipple business when he received a call telling him that his sister had breast cancer, so he felt this was a sign to continue his work, even though he finds it less artistically challenging that the classic tattoos. He now works with several US hospitals.
As the woman in the story says, nipples are a taboo subject but she just wanted to "look normal again". Trying to see the light in small things, her little dance of happiness at the end is poignant and the moment is bittersweet, but she was happy with her new nipples and good for her searching out the best, despite the long journey.
https://www.youtube.com/watch?v=Egq2qnnXSPY
Vinnie has plenty of links if you Google him. Here's an impressive set of his work and before and after photos.
http://community.breastcancer.org/blog/qa-with-vinnie-myers-3d-nipple-tattoo-specialist/
It frightens me to know how close I came to not having a nipple on the left breast where the tumour was. The surgeon had to take off so much tissue and skin that he was forced to take away the part of my breast where the nipple was, so he grafted the nipple back on during the operation. It's not the same as the right hand side. There is absolutely no feeling in it and it's paler than the right and not perfectly shaped, but it's mine and it looks real! I was not prepared for this, it was a terrible shock to know that he'd done this. I wish he had prepared me if he could have anticipated this. It was one of the first things he told me once I'd come round. At that point I felt completely numb and shocked, but looking back on it, I feel very shivery and sad and pretty angry that I had to go through that. I envy you your nipples!
This touching 5 minute video shows the story of a feisty woman who had a double mastectomy and her visit to Vinnie Myers in Maryland.
Vinnie is not a doctor or surgeon but a tattoo artist who seems like a pretty cool guy and he specialises in creating 3D nipple tattoos for women who have had a mastectomy. I have heard that in hospital, after a reconstruction by implant, women are offered stickers to replace their nipples and eventually tattoos if they wish. The problem is that it's not necessarily a speciality for plastic surgeons and they have difficulty in matching the colour of a remaining nipple in the case of a unilateral mastectomy or the creating something with a natural look as they have around just 12 pigments to choose from. Vinne hand mixes the pigments and tries to match it as well as possible to the skin colour and original nipple colour.
As the patient says, "there's a lot of bad nipples out there".
Apparently, people have flown in from as far as Dubai to 'get a Vinnie' and his tattoo parlour does 1500 - 2000 nipples per year and is at full capacity. He was about to give up the nipple business when he received a call telling him that his sister had breast cancer, so he felt this was a sign to continue his work, even though he finds it less artistically challenging that the classic tattoos. He now works with several US hospitals.
As the woman in the story says, nipples are a taboo subject but she just wanted to "look normal again". Trying to see the light in small things, her little dance of happiness at the end is poignant and the moment is bittersweet, but she was happy with her new nipples and good for her searching out the best, despite the long journey.
https://www.youtube.com/watch?v=Egq2qnnXSPY
Vinnie has plenty of links if you Google him. Here's an impressive set of his work and before and after photos.
http://community.breastcancer.org/blog/qa-with-vinnie-myers-3d-nipple-tattoo-specialist/
It frightens me to know how close I came to not having a nipple on the left breast where the tumour was. The surgeon had to take off so much tissue and skin that he was forced to take away the part of my breast where the nipple was, so he grafted the nipple back on during the operation. It's not the same as the right hand side. There is absolutely no feeling in it and it's paler than the right and not perfectly shaped, but it's mine and it looks real! I was not prepared for this, it was a terrible shock to know that he'd done this. I wish he had prepared me if he could have anticipated this. It was one of the first things he told me once I'd come round. At that point I felt completely numb and shocked, but looking back on it, I feel very shivery and sad and pretty angry that I had to go through that. I envy you your nipples!
Wednesday 25 June 2014
9 months post surgery
Time creeps on and I find myself 9 months away from that horrible day and that 5 and a half hour operation. 9 months today exactly.
If you're reading this and are about to embark on your own dance with cancer, I hope that this gives you hope that there is life after cancer, because I've found that there is! The realisation has come slowly and in jumps and starts, gradually, but there are more days when I believe it than there are days when I don't believe it and I'm thrust back into those black thoughts, concerns and days of anguish.
I'm still seeing a psychologist weekly. It's helping me with getting on and dealing with issues that were there before the cancer and have reared their head and are proving a barrier to constructing a new life. The Listening Brunette is still in my corner, telling me truths when I need to hear them and helping me make sense of the fuzz that is my thought process.
That said, I'm in a mode right now where I am scared that the cancer will come back. I was had terrible dizziness yesterday and breathlessness and was scared. I think it will always come back to the cancer now, whereas before I was more likely to brush things off as a cold or tiredness (which in reality was probably what it was). As I say, it goes in fits and starts.
The good news is that I have actually looked at both of my breasts - on Sunday before La Journée Glamour. I was brushing my teeth and noticed that my chest was showing in the mirror. I have the habit, since the operation, of looking away and not seeing that glance in the strategically positioned mirror, it's become an automatic reponse. But on Sunday, I thought well, let's look, today is a fresh start so why not do this as well? I'd already plucked up the courage to look at the right breast alone and that was more ugly and weird than I thought. The left was ok, just ok, not pretty or natural but the scars were mabye less evident than I thought (I have only been feeling them whilst putting on Bio Oil every night, so maybe they feel larger than they are) and the grafted nipple very pale because I guess it hasn't got blood flow? I haven't yet looked at myself naked and looked at my 'breasts' on my body. It will come. I still don't consider them as breasts, just lumps of fat and certainly not sexy, not at all, nowhere near, never again........
My new bra was a turning point psychologically (that's another post) but it does mean I can wear lower cut tops and even (gasp), show a tiny cleavage. It has helped me enormously to move on.
Physically I still have pain on the scars, particularly on the left hand side and some of the scars are numb and raised despite the Bio Oil. No underarm hair on the left radiated armpit. Still stained brown but maybe slightly lighter than before.
I have embarked on a modest exercise plan: an abdominal plan which increases every day for a month and almost every day I do 1200 steps on my stepper with some arm and shoulder exercises. I also get on my bike quite frequently. My body has changed thanks to this, I think. My arms are slightly firmer (still bingo wings and I'm no Michelle Obama!) my legs are a better shape for sure. My tummy has gone down and so has my muffin top (but nowhere near enough). I'm a work in progress.
I'm eating much less and much better than before. Not perfect, but a real change and I drink plenty of green tea and very little tea or coffee (not been a problem at all to change that). I have lost a tiny bit of weight, really tiny considering the lifestyle changes I've made, but maybe muscle does weigh more than fat????!
My periods stopped 3 months ago with the Tamoxifen. I have hot flushes now and again, some during the day now as before it was only nightly. They are, for the moment, copeable. My taste buds have changed - I have gone off crisps! This is a revelation! They were my favourite 'sin' food since I've been really small, but I don't like them so much these days. And I don't like very strongly flavoured food, as in, food that tastes artificial. Maybe this is the pills, maybe this is the new eating plan. I am simply not attracted to the things I was before. I also don't like so many brightly coloured clothes, which is a shame as I loved bright colours before so my wardrobe is full of them.
And clothes, yes, I am chucking out clothes on a daily basis. Too big, far too big for me. Some things make me hugely sad to discard - a pretty expensive jacket that I purchased for my neice's wedding only 2 years ago - miles too big. I may try to get it altered. But I am chucking with abandon. Maybe it's my body that's changed (no tits and a smaller body) or maybe it's my attitude, I'm not sure.
I'm also chucking out things from the house too. I am much more cut throat in my decluttering.
I have joint pains sometimes (Tamoxifen) and sometimes nauseau (Tamoxifen?) and for sure, I am much more tired than I used to be and more likely to give in the towel and go to bed than snooze on the sofa and try to stay awake. I have less physical strength and I tire much more easily. Less is possible but still, something is possible!
I also have, since I started taking Tamoxifen, a nasty aftertaste in my mouth at all times, which is unpleasant and particularly 'yuck' if I'm thirsty. And my nails are very fragile, so I'm continuing to take a supplement and looking after them, which at least seems to make them flake and break less.
I am concerned about the upcoming 8 weeks holiday as I have no teaching and may find myself at a loose end with 2 bored kids so I'm trying to plan for that, rather than fall into a depressive state.
My work is still uncertain, not because I had cancer, but because I was made redundant last August and haven't replaced that work, I haven't felt confident enough to apply for the few part time jobs that are out there, but there are new things in the pipeline and I'm waiting to see what comes to fruition for September.
I feel like my life is divided into 'before cancer and after cancer', but it's not the only division I've experienced, there's 'before and after France, before and after kids' for example, it's good to be able to see that this is not the only division or big change that's happened in my life and that that's what it is, a change, to assimilate and not the end of the world. I'm still a work in progress and sometimes I fall but I get back up and life goes on but I'm grateful that I have a life to go on with.
If you're reading this and are about to embark on your own dance with cancer, I hope that this gives you hope that there is life after cancer, because I've found that there is! The realisation has come slowly and in jumps and starts, gradually, but there are more days when I believe it than there are days when I don't believe it and I'm thrust back into those black thoughts, concerns and days of anguish.
I'm still seeing a psychologist weekly. It's helping me with getting on and dealing with issues that were there before the cancer and have reared their head and are proving a barrier to constructing a new life. The Listening Brunette is still in my corner, telling me truths when I need to hear them and helping me make sense of the fuzz that is my thought process.
That said, I'm in a mode right now where I am scared that the cancer will come back. I was had terrible dizziness yesterday and breathlessness and was scared. I think it will always come back to the cancer now, whereas before I was more likely to brush things off as a cold or tiredness (which in reality was probably what it was). As I say, it goes in fits and starts.
The good news is that I have actually looked at both of my breasts - on Sunday before La Journée Glamour. I was brushing my teeth and noticed that my chest was showing in the mirror. I have the habit, since the operation, of looking away and not seeing that glance in the strategically positioned mirror, it's become an automatic reponse. But on Sunday, I thought well, let's look, today is a fresh start so why not do this as well? I'd already plucked up the courage to look at the right breast alone and that was more ugly and weird than I thought. The left was ok, just ok, not pretty or natural but the scars were mabye less evident than I thought (I have only been feeling them whilst putting on Bio Oil every night, so maybe they feel larger than they are) and the grafted nipple very pale because I guess it hasn't got blood flow? I haven't yet looked at myself naked and looked at my 'breasts' on my body. It will come. I still don't consider them as breasts, just lumps of fat and certainly not sexy, not at all, nowhere near, never again........
My new bra was a turning point psychologically (that's another post) but it does mean I can wear lower cut tops and even (gasp), show a tiny cleavage. It has helped me enormously to move on.
Physically I still have pain on the scars, particularly on the left hand side and some of the scars are numb and raised despite the Bio Oil. No underarm hair on the left radiated armpit. Still stained brown but maybe slightly lighter than before.
I have embarked on a modest exercise plan: an abdominal plan which increases every day for a month and almost every day I do 1200 steps on my stepper with some arm and shoulder exercises. I also get on my bike quite frequently. My body has changed thanks to this, I think. My arms are slightly firmer (still bingo wings and I'm no Michelle Obama!) my legs are a better shape for sure. My tummy has gone down and so has my muffin top (but nowhere near enough). I'm a work in progress.
I'm eating much less and much better than before. Not perfect, but a real change and I drink plenty of green tea and very little tea or coffee (not been a problem at all to change that). I have lost a tiny bit of weight, really tiny considering the lifestyle changes I've made, but maybe muscle does weigh more than fat????!
My periods stopped 3 months ago with the Tamoxifen. I have hot flushes now and again, some during the day now as before it was only nightly. They are, for the moment, copeable. My taste buds have changed - I have gone off crisps! This is a revelation! They were my favourite 'sin' food since I've been really small, but I don't like them so much these days. And I don't like very strongly flavoured food, as in, food that tastes artificial. Maybe this is the pills, maybe this is the new eating plan. I am simply not attracted to the things I was before. I also don't like so many brightly coloured clothes, which is a shame as I loved bright colours before so my wardrobe is full of them.
And clothes, yes, I am chucking out clothes on a daily basis. Too big, far too big for me. Some things make me hugely sad to discard - a pretty expensive jacket that I purchased for my neice's wedding only 2 years ago - miles too big. I may try to get it altered. But I am chucking with abandon. Maybe it's my body that's changed (no tits and a smaller body) or maybe it's my attitude, I'm not sure.
I'm also chucking out things from the house too. I am much more cut throat in my decluttering.
I have joint pains sometimes (Tamoxifen) and sometimes nauseau (Tamoxifen?) and for sure, I am much more tired than I used to be and more likely to give in the towel and go to bed than snooze on the sofa and try to stay awake. I have less physical strength and I tire much more easily. Less is possible but still, something is possible!
I also have, since I started taking Tamoxifen, a nasty aftertaste in my mouth at all times, which is unpleasant and particularly 'yuck' if I'm thirsty. And my nails are very fragile, so I'm continuing to take a supplement and looking after them, which at least seems to make them flake and break less.
I am concerned about the upcoming 8 weeks holiday as I have no teaching and may find myself at a loose end with 2 bored kids so I'm trying to plan for that, rather than fall into a depressive state.
My work is still uncertain, not because I had cancer, but because I was made redundant last August and haven't replaced that work, I haven't felt confident enough to apply for the few part time jobs that are out there, but there are new things in the pipeline and I'm waiting to see what comes to fruition for September.
I feel like my life is divided into 'before cancer and after cancer', but it's not the only division I've experienced, there's 'before and after France, before and after kids' for example, it's good to be able to see that this is not the only division or big change that's happened in my life and that that's what it is, a change, to assimilate and not the end of the world. I'm still a work in progress and sometimes I fall but I get back up and life goes on but I'm grateful that I have a life to go on with.
Sunday 22 June 2014
La Journée Glamour!
I heard about this day at the Seminar at Gustave Roussy with my friend.
It's a day specifically for women who have had cancer and subsequent treatments and who finished their treatments at least 3 months ago. The Day is organised in several French cities throughout the year and run and financed by an Association called Clairs Horizons whose goals are:-
«promouvoir, d’entreprendre et de soutenir toutes activités liées au développement et à la promotion des relations humaines et à la communication.
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It's a day specifically for women who have had cancer and subsequent treatments and who finished their treatments at least 3 months ago. The Day is organised in several French cities throughout the year and run and financed by an Association called Clairs Horizons whose goals are:-
«promouvoir, d’entreprendre et de soutenir toutes activités liées au développement et à la promotion des relations humaines et à la communication.
Et
particulièrement pratiquer, promouvoir ou entreprendre toute action
ou activité visant à informer, encourager ou soutenir les personnes
atteintes ou ayant été atteintes du cancer et /ou leur entourage.»
Loosely translated; "To promote and undertake all activities linked with the development or promotion of human relations and communication and in particular practise, promote and undertake all actions or activities which inform or support people who have or have had cancer, or their family or friends."
The Day has two objectives
1. For women to regain their self-confidence and their femininity.
2. To communicate advice about nutrition and exercise.
The Day was ran by Nathalie Stamoulis (see biography in this link)
who looked absolutely radiant and sophisticated in her beautiful pink dress.
Here's how the Glamour Day is described on the website:-
I applied for a place on the Day back in May and was a bit worried that I hadn't heard anything, but was delighted when finally the confirmation of my place came through. It was something I was really looking forward to and I proudly told my friends about it. I was seeing as a fresh start, a new step in the right direction and I was really excited about being pampered!
The Day was held at a 4* hotel, Hotel Regina, in central Paris. It's an old, traditional hotel of the classic style with a pretty terrace. Even the loos were pretty!
The day kicked off with coffee and tea and water (on one of the hottest days of summer so far). Nathalie explained how the Day would unfold and opened with a Group Share. I didn't feel confident enough to speak out in front of everyone (there were about 20-30 women there) and it was hard to hear, so I listened as well as I could to everyone elses story. There were some shocking, sad stories and it was an emotional time for both the women telling their story and those listening. Nathalie's assistant went round the room with a box of tissues, dispensing them when necessary. Everyone who wanted to speak got a chance and nobody interrupted; we all waited quietly if the speaker needed to cry. It was a very privileged and intimate moment that we all shared.
I found listening to other stories very humbling. They all seem much more unbearable and infinitely harder than my own and to be honest, I felt like a bit of an intruder as I felt my experience was nowhere near as bad as others' and I felt guilty that I had got off relatively lightly. Nobody made me feel like that, only my own feelings were giving me that, it must be said.....best to address that with the Listening Brunette tomorrow!
Then Nathalie gave us some psychological tools and advice about how to cope with difficult times and how to think about cancer and our fears through a visualisation exercise, how to eat well, what to avoid and the importance of exercise.
After lunch, it was the exciting part! I walked into the coffee room after lunch, which was abuzz with activity - on one side was a bank of hairdressers cutting and blowdrying the participants hair, on the other side, a bank of chairs at a long table chocca block full of make up, Payot skin care and girls' stuff with a line of participants being made up.
Whilst we waited our turn, we talked and exchanged experiences and snacked on delicious mini desserts (sorry didn't get a photo). I was made up by a lovely young woman who spent a long time on my face and made my eyes really 'pop' with orange/gold make up and coral lipstick. It really was very pretty and my neigbour complimented me!
Then, off to the hairdresser for a blow dry (I had had my hair cut on Thursday so no need for that). After a surprisingly short blow dry, I was impressed by the volume the hairdresser had managed to give me.
Afterwards, I posed for the very charming photographer on the terrace. He'll be sending me the photos by email and I can even ask him to Photoshop the bits I don't like!! I also participated in a little demonstration of how to fix false eyelashes. This is particularly important after chemotherapy as the patients frequently lose their eyelashes and sometimes they don't grow back or become a lot finer and sparse. One lovely lady had a tumor in her eye and the false eyelashes really made a difference to her confidence.
After a group photo and thanks to all, we went home with a goodie bag with Sothys products and some very useful information sheets from La Ligue Contre le Cancer regarding eating and exercise.
Everybody during the Day was kind and friendly - the participants, the hairdressers, make up artists, the organisers, the hotel staff, the photographer. It was really great that everyone was so open and willing to share their experiences and feelings. It was all the more suprising as, coming from an Anglophone culture, I am well used to sharing my feelings with people I don't know, and laying myself open, but all the more suprising was I find that usually French people are much more reticent at opening up to strangers and it normally takes a long time for them to be honest and frank, but not today. So, well done to the facilitator for setting the scene, making it safe to speak and encouraging everyone to share if they wished. I had some very moving individual conversations over coffee which continued on the metro when we all went our separate ways home.
I think the most poignant thing of the day for me was hearing a young woman who kept her hat on all morning. She cried a lot during the group share and when she spoke she said she didn't consider herself brave at all when compared to the rest of the women in the room, she thought she lacked courage. She seemed very sad and later explained that before the chemotherapy she had had waist length hair which her father shaved off for her as it began to fall out; it was evidently a source of real grief for her. She was a changed woman after the make up and hair. She had found the courage to take off her hat and reveal her fine short brown hair which was shiny and curled around her face. Her made up face was glowing and beautiful and she had a wide smile to match, she was delighted with her appearance. As we kissed goodbye, I said 'lose the hat if you can', you are beautiful like that. I hope she does.
It was a very good day. Thank you to Clairs Horizons and all of those who participated and made La Journée Glamour possible.
Monday 16 June 2014
Green Tea, new delivery!
I received a delivery of green tea today ordered from venteprivee.com where you can buy products from good brands at reduced prices. I jumped on the site when I saw that Kusmi were having a sale!
Here are my purchases (from the top):-
Green Tea with Mint, Green tea with rose, strawberry green tea and almond green tea.
Plus a gorgeous silver tin with Wellness Teas (Detox, Boost, Be Cool, Euphoria, Sweet Love and Algotea - tea with seaweed)
I am coming to the end of a rather average box of Clipper tea (I feel a review coming on) so I am dying to get on and taste these goodies!
And just to remind you how great green tea is
benefits-of-green-tea-that-you-didnt-know-about
Anyone for a swim?
My friends pointed out this article in the Daily Mail.
http://www.dailymail.co.uk/femail/article-2638741/Who-says-need-two-Finnish-designers-create-new-swimwear-range-specifically-women-mastectomy.html
I think these costumes are absolutely horrible, unflattering and would make you an object of curiosity in the swimming pool or on the beach.
One of the designers said 'I do not want to hide, I do not want to stop swimming, I do not want to undergo extensive plastic surgery operations and I do not want to be forced to use the uncomfortable prosthesis on the beach'. I get her, I do, I want the same but there are other ways of achieving it, what's wrong with a Speedo?
I think the costumes are radical and won't work because most people don't want to be radical or make a statement, they just want to be normal and look normal and even and not lopsided. It's a choice to go there and decide to go topless on the beach when you've had a breast operation, and yes, of course, everyone should be accepted as they are. But in reality that's not the case and most people just want to blend in. And by the way, most mastectomy or breast operation scars are not neat like in the photos, they can be red, angry, raw, brown, raised and very apparent. A scar is a scar.
Take these costumes away please, they are hurting my eyes!
http://www.dailymail.co.uk/femail/article-2638741/Who-says-need-two-Finnish-designers-create-new-swimwear-range-specifically-women-mastectomy.html
I think these costumes are absolutely horrible, unflattering and would make you an object of curiosity in the swimming pool or on the beach.
One of the designers said 'I do not want to hide, I do not want to stop swimming, I do not want to undergo extensive plastic surgery operations and I do not want to be forced to use the uncomfortable prosthesis on the beach'. I get her, I do, I want the same but there are other ways of achieving it, what's wrong with a Speedo?
I think the costumes are radical and won't work because most people don't want to be radical or make a statement, they just want to be normal and look normal and even and not lopsided. It's a choice to go there and decide to go topless on the beach when you've had a breast operation, and yes, of course, everyone should be accepted as they are. But in reality that's not the case and most people just want to blend in. And by the way, most mastectomy or breast operation scars are not neat like in the photos, they can be red, angry, raw, brown, raised and very apparent. A scar is a scar.
Take these costumes away please, they are hurting my eyes!
The Mother Ship
A month or so ago, I found out that my friend who lives in the same small town as me had been diagnosed as having breast cancer. I was really shocked - she's young and has 3 very young children. And worse, she had to have a mastectomy and will start the first of 8 chemotherapy treatments soon, then she'll have to do radiotherapy.
Her diagnosis brought up all sorts of feelings for me and gave me a taste of what it was like to be on the other side of breast cancer - the supporters side.
As news came in from her day at the hospital where they did a biopsy and gave her the results immediately and the prognosis that it was cancer and then the whammy of the mastectomy, then the chemo to come, it brought back awful memories of that period when I was doing all those tests and waiting and waiting and fighting to get the right decision and feeling so out of control and shocked and sad and alone.
I offered my help in whatever way I could, of course, as did her other friends, and we have had quite a few exchanges, cups of tea and outings together. I hope that by being able to share these things with her, it has helped her to not feel so alone as some of our conversations have been very graphic and down to earth, we've discussed some things that only people who have been through or who are living with the disease can understand. I've also passed on some useful names and addresses of health care professionals that I found to be sympathetic and effective.
The day of her mastectomy and lymph node removal, I felt so deeply sad for her. Not in a pitying way (this is the last thing she'd have wanted), but in a way that I felt sad in my very bones and my heart that she had this day where this horrible thing was going to happen to her, that she had to go through and that this was going to change her life. I called a friend who also knew and we shared our feelings of sadness. It felt pretty powerless too, waiting for the news, hoping she'd get through ok and that there wouldn't be any complications. I imagined how my friends and family must have been feeling when that was happening to me. It was truly a joyless day.
It did hit me hard and brought back dreadful memories and I am worried about how she's going to fare with the next bit, but on the whole, I hope I have brought her some help and someone to talk to and (as nothing is one-sided), I have also been able to talk to her in a way that I can't talk to others who are not going through it. We have brought each other comfort, I hope. And I got to meet her lovely Mum, who, sadly, was also diagnosed with breast cancer 5 yrs ago.
One of our outings was to the hospital Gustave Roussy, where she was operated on. It was just before her surgery and maybe this outing brought us both a little 'too much information'. It was a seminar in a very nice lecture theatre 'Cancer du Sein: Mieux Vivre La Chirurgie' (Breast Cancer, how best to get through the surgery).
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First of all, the hospital itself was a revelation. I have never been anywhere so huge. This building was so big I couldn't even get it on my camera (I know I need an iphone 5 with panoramic view), and there are many outbuildings behind it too. The hospital is considered as one of the top cancer hospitals in France, and is world renown for it's advances and research. It's called the 'Cancer Campus'. Personally, I was a little overawed by the size of the place and I think it was better for me to be in a smaller hospital that I knew already and I think my treatement (certainly my operation) was the right one for me and I may not have got that treatment in a larger hospital where I might have felt like 'just a number'. However, in such a large specialised place, you can be sure that you're getting the most up to date information, access to great specialists and the support system seems excellent. I feel like I haven't been so well supported and the support that I've got I have had to find and fight for myself.
A large hospital does give you a sense of being looked after and having the best care, so I'm really glad my friend was looked after properly. I know, however, that it was difficult to get to as it's in the south of Paris and not so easy to access by public transport.
Anyway, I arrived for the last two topics on the seminar 'Questions sur l'image de soi, la sexualité, et le vécu après mastectomie' (Questions on your self image, sexuality and life after a mastectomy). It was very useful to hear the psychologist speak and gave me some points to discuss with the psychologist I'm seeing on a weekly basis.
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The last presentation was 'Reconstruction mammaire: les techniques classiques et récentes (injection de graisse Brava)' (Breast reconstruction, classic and new techniques (fat injections and Brava)). This was the one I was particularly interested in. This was also the one with a little tmi for both of us I think. Lots of photos, really upsetting graphic photos, before and after, vials of fat all blown up to huge size on the screen. Lots of photos that amazed me, too, as to how surgeons were able to reconstruct women's breasts to look so very similar to the remaining breast or the original ones. I wanted to reach out of squeeze my friend's hand - she was going to have her surgery in a week's time and all this was to come.
Afterwards was useful too as there were various stands for associations linked with breast cancer, so I came away with some very useful information and we chatted to the person who is present in the sort of drop-in support centre in the hospital. I found out about 'La Journée Glamour' (more of that to come after next week) and like I say, the support services in such a huge place are fantastic, such as the seminar that day.
My friend had a good as can be experience in the hospital, her surgery went well. The room was bright and cheerful with coloured bedspreads. She stayed in for around a week and she had all good things to say about the nurses and the hospital and her Mum spent all afternoon and evening with her every day.
Her diagnosis brought up all sorts of feelings for me and gave me a taste of what it was like to be on the other side of breast cancer - the supporters side.
As news came in from her day at the hospital where they did a biopsy and gave her the results immediately and the prognosis that it was cancer and then the whammy of the mastectomy, then the chemo to come, it brought back awful memories of that period when I was doing all those tests and waiting and waiting and fighting to get the right decision and feeling so out of control and shocked and sad and alone.
I offered my help in whatever way I could, of course, as did her other friends, and we have had quite a few exchanges, cups of tea and outings together. I hope that by being able to share these things with her, it has helped her to not feel so alone as some of our conversations have been very graphic and down to earth, we've discussed some things that only people who have been through or who are living with the disease can understand. I've also passed on some useful names and addresses of health care professionals that I found to be sympathetic and effective.
The day of her mastectomy and lymph node removal, I felt so deeply sad for her. Not in a pitying way (this is the last thing she'd have wanted), but in a way that I felt sad in my very bones and my heart that she had this day where this horrible thing was going to happen to her, that she had to go through and that this was going to change her life. I called a friend who also knew and we shared our feelings of sadness. It felt pretty powerless too, waiting for the news, hoping she'd get through ok and that there wouldn't be any complications. I imagined how my friends and family must have been feeling when that was happening to me. It was truly a joyless day.
It did hit me hard and brought back dreadful memories and I am worried about how she's going to fare with the next bit, but on the whole, I hope I have brought her some help and someone to talk to and (as nothing is one-sided), I have also been able to talk to her in a way that I can't talk to others who are not going through it. We have brought each other comfort, I hope. And I got to meet her lovely Mum, who, sadly, was also diagnosed with breast cancer 5 yrs ago.
One of our outings was to the hospital Gustave Roussy, where she was operated on. It was just before her surgery and maybe this outing brought us both a little 'too much information'. It was a seminar in a very nice lecture theatre 'Cancer du Sein: Mieux Vivre La Chirurgie' (Breast Cancer, how best to get through the surgery).
First of all, the hospital itself was a revelation. I have never been anywhere so huge. This building was so big I couldn't even get it on my camera (I know I need an iphone 5 with panoramic view), and there are many outbuildings behind it too. The hospital is considered as one of the top cancer hospitals in France, and is world renown for it's advances and research. It's called the 'Cancer Campus'. Personally, I was a little overawed by the size of the place and I think it was better for me to be in a smaller hospital that I knew already and I think my treatement (certainly my operation) was the right one for me and I may not have got that treatment in a larger hospital where I might have felt like 'just a number'. However, in such a large specialised place, you can be sure that you're getting the most up to date information, access to great specialists and the support system seems excellent. I feel like I haven't been so well supported and the support that I've got I have had to find and fight for myself.
A large hospital does give you a sense of being looked after and having the best care, so I'm really glad my friend was looked after properly. I know, however, that it was difficult to get to as it's in the south of Paris and not so easy to access by public transport.
Anyway, I arrived for the last two topics on the seminar 'Questions sur l'image de soi, la sexualité, et le vécu après mastectomie' (Questions on your self image, sexuality and life after a mastectomy). It was very useful to hear the psychologist speak and gave me some points to discuss with the psychologist I'm seeing on a weekly basis.
The last presentation was 'Reconstruction mammaire: les techniques classiques et récentes (injection de graisse Brava)' (Breast reconstruction, classic and new techniques (fat injections and Brava)). This was the one I was particularly interested in. This was also the one with a little tmi for both of us I think. Lots of photos, really upsetting graphic photos, before and after, vials of fat all blown up to huge size on the screen. Lots of photos that amazed me, too, as to how surgeons were able to reconstruct women's breasts to look so very similar to the remaining breast or the original ones. I wanted to reach out of squeeze my friend's hand - she was going to have her surgery in a week's time and all this was to come.
Afterwards was useful too as there were various stands for associations linked with breast cancer, so I came away with some very useful information and we chatted to the person who is present in the sort of drop-in support centre in the hospital. I found out about 'La Journée Glamour' (more of that to come after next week) and like I say, the support services in such a huge place are fantastic, such as the seminar that day.
My friend had a good as can be experience in the hospital, her surgery went well. The room was bright and cheerful with coloured bedspreads. She stayed in for around a week and she had all good things to say about the nurses and the hospital and her Mum spent all afternoon and evening with her every day.
Tuesday 13 May 2014
1st Mammogram
A couple of weeks ago I had my first post surgery mammogram. It was 4 months after the radiotherapy had finished; not before because apparently the effects of the treatment are still going on for that time and at 4 months, normally the tissue has settled somewhat. True, I've still been having pains in my left breast as during the radiotherapy.
I decided to go back to the Centre where I had the mammogram and ultrasound where the cancer was discovered, not because it's great service (they are always running late, even at 9h) or because of the atmosphere - it's a very basic place, no frills and a bit depressing to tell you the truth. I went back there because I have a history there and they have all my previous exams stored, so they can do a good comparision. And, after all, they did discover the cancer so they must be doing something right.
dh kindly said he would take a half day and accompany me for the mammo; it was a tense time for both of us so we were both hoping to get some comfort from each other.
I finally went into the examination and did the (pretty painful) mammo, although I had pre-warned the receptionist when I made the appointment that I would be very stressed and possibly upset, so the operator was nice and told me to stop when the machine hurt (and she did stop). She left me to look at the clichés and I slipped my top on. After a long wait, she returned and said that more xrays were needed. I immediately jumped to the conclusion that there was a problem and they'd seen something. She said not, but my breasts were so different (just a bit!) than the previous xray that they needed more pictures to gather a new batch for a control group.
More pics taken and I was left to wait again. It was really long, I walked around the room, stressed, cried a bit, got scared, hyperventilated, played on my phone, tried to read a book. All the time thinking that she'd come back and say 'we found something, you have to do more tests'. I imagined myself going through another biopsy, another operation, chemotherapy. In short, I imagined the worst in that cold room.
Then the doctor came back, not the operator, and said that the xrays looked clear. You can't imagine the huge sigh of relief that I gave. I felt like I'd run a marathon, my body was weak.
I did, however, have to come back for an ultrasound which I hadn't even noticed was on the prescription so I made an appointment for 2 weeks time.
Which was yesterday.
I waited one hour to be seen, playing Farm Heros Saga, trying to read. The tension mounting. Then I was in. It was the same place where I'd found out that I had something suspect, the same view from the bed, the same lighting, the same white wallpapered wall next to my face, the same coat peg. Everything was etched on my mind.
The ultrasound lasted over 30 minutes. There were a couple of times when the Doctor left the room to consult my previous test results, in particular the ultrasound I had in January to check out the right breast. It was extremely painful on the scar tissue and I was wound up like a spring. I thought I'd be a bit less stressed as I'd already had a good mammo result, but I was more stressed. I think it's the bad memories of the ultrasounds I had had when I was pregnant or miscarrying. I don't have many good memories of ultrasounds in my life. The bad ones have overshadowed the joyful ones, that special time where you see a foot, a hand, a face and movement of your baby. For me they have mostly been about bad news.
It seems that the 'ball' in my right breast has diminished in size slightly, which is good but apparently it's not going to go away the doctor thought. I also have all sorts of calcifications, nodules, fibrous bits, just a lot going on down there.
The final conclusion however was that there was nothing 'méchant', nothing bad.
I walked out stunned and hurting a lot on and in my breasts and with a headache. I think I was in some sort of shock about the whole procedure, never mind the result.
I waited for the written results and like a knight in shining armour, dh came through the door as I was about to leave. I'd told him I needed a drink, he said 'I'll bring a bottle of water', I said no 'a drink', a real one.
Most of all I wanted to be home with a headache pill. I cried so much in his arms when we got home. I hadn't realised how much I was scared of a bad result. I'm crying while I write this. I hadn't realised how much I really didn't want to go back to that cancer situation, the tests, the needles, the hospital, the fear. I didn't feel joyful at all about the result, I just felt numb and like I'd had a reprieve, but for how long this time? I know too that next time it's a mastectomy and chemotherapy, not just radiotherapy and a lump removal. It hangs over my head, like I'm glad I escaped but I don't really believe that I have escaped. The cage door is open but I can't step out of it.
I know this is a point where I could start to turn the page and I'd like to, but I'm scared to. It's like tempting fate to say 'yes I had cancer but it's all over now'. How do I know?, how can I be sure? How do I live on with the knowledge that one day there might be a little unexplained ball, it's happened already could it happen again? In short, how to reconcile the possibility of falling ill with the will to live a happy life. Must it always be there like a black cloud on a sunny day? I thought I was doing ok, I had had moments when I didn't think about cancer at all, when I could logically see that it was part of my past and not part of my present. But it sort of will be part of my present for ever now.
I understand now why women say 'take off my breasts'. I never understood that before, but I do now, it's the most radical kind of surgery for breast cancer but I understand why they would want to be rid of those two lumps of fat on their chest that cause them so many problems. I totally get you, Angelina.
The lovely ladies on our closed FB page who have all gone through this were a real source of comfort last night, I know they understand, they have been in my shoes. Glad they are there.
And while I get myself primed for thinking about a reconstruction (which I'm feeling very ambivilent about right now), I guess things will get better with time, as they say about most traumas. It's just not time yet.
Tuesday 6 May 2014
Seven Classes of Breast Cancer Test Offers New Hope?
The BBC report that a new test that can identify the seven classes of breast cancer could be available in UK within 2 years.
There are 10 different types of breast cancer. If the particular type of cancer is identified, then treatments can be tailored and made to suit the individual, instead of patients enduring 'catch all' treatments that, while possibly proving effective (not always) against the cancer, may cause needless harm or prove unnecessarily difficult to endure.
If the specific type of cancer is identified and targetted, in the long run, the treatment will be more effective and possibly cost effective.
At the moment, identifying the different types of cancer can only be done by expensive and lengthy gene testing, however, with this new test, we are even closer, as Baroness Delyth Morgan, the Chief Executive of Breast Cancer Campaign says to the 'holy grail of personnalised medicine'.
Breast cancer pathology has already come a long way since the days of every patient enduring chemotherapy. My tumor was screened for in situ cancer and infiltrant cancer plus the HER2 status which means the tumor is hormone sensitive, leading to my taking Tamoxifen. If it wasn't hormone sensitive I'd be taking different drugs and would maybe need to have had chemotherapy.
Baroness Delyth Morgan says that the goal is to overcome breast cancer by 2050. Not sure if that will happen, but it would be truly great if it did. I read a statistic that 1000 women die of breast cancer every MONTH in UK. Each of those women are someone's mother, daughter, friend. Too many.
Anyway, read this and get the whole story. It would be a great stride for breast cancer patients and their survival rates if this test was made widely available.
http://www.bbc.com/news/health-24732987
There are 10 different types of breast cancer. If the particular type of cancer is identified, then treatments can be tailored and made to suit the individual, instead of patients enduring 'catch all' treatments that, while possibly proving effective (not always) against the cancer, may cause needless harm or prove unnecessarily difficult to endure.
If the specific type of cancer is identified and targetted, in the long run, the treatment will be more effective and possibly cost effective.
At the moment, identifying the different types of cancer can only be done by expensive and lengthy gene testing, however, with this new test, we are even closer, as Baroness Delyth Morgan, the Chief Executive of Breast Cancer Campaign says to the 'holy grail of personnalised medicine'.
Breast cancer pathology has already come a long way since the days of every patient enduring chemotherapy. My tumor was screened for in situ cancer and infiltrant cancer plus the HER2 status which means the tumor is hormone sensitive, leading to my taking Tamoxifen. If it wasn't hormone sensitive I'd be taking different drugs and would maybe need to have had chemotherapy.
Baroness Delyth Morgan says that the goal is to overcome breast cancer by 2050. Not sure if that will happen, but it would be truly great if it did. I read a statistic that 1000 women die of breast cancer every MONTH in UK. Each of those women are someone's mother, daughter, friend. Too many.
Anyway, read this and get the whole story. It would be a great stride for breast cancer patients and their survival rates if this test was made widely available.
http://www.bbc.com/news/health-24732987
Green tea Green tea!
Yes, more green tea, I am really enjoying my role as taster and reviewer! It's good to ring the changes and see what delicious beverages there are out there.
My first was a present from my parents and bought from Sainsburys in the UK. They gave me two boxes of this Free Trade tea, one with a peach flavour, the other mint flavour. I liked them both very much. Light, refreshing and not too perfumed. Perfect at all times of the day (apart from after 18h because if I drink tea after then I my sleep is even worse than normal).
I don't know how expensive the tea was (rude to ask when it's a present dontcha know?) but Sainsburys own brand is probably quite reasonable.
+ points - great tasting everyday tea, Free Trade, non bleached bags
- points - can't get it in France!
The second tea is a really serious bag of tea leaves. This was very kindly brought to me by a lovely lady who had come all the way from the next town on the train to deliver a home-cooked meal when I was just out of hospital. She'd added all sorts of other treats, this tea included. I simply cannot express enough gratitude to the people who came round during that very difficult period bringing delicious food, drink and treats or coming round to pick up ironing or deliver cakes or magazines and with it showing their love and concern. It warms my heart still to think of the care and outpouring of concern that they showed and believe me it helped me enormously and also helped my children, and showed my scared husband that there were good guys and gals in the world and sometimes that good things happened, amongst the horror and sadness that we'd come across.
So, back to the tea. I don't like to make a pot unless I have visitors and a friend showed me these really neat disposable tea bags which are on sale in a local posh kitchenware shop. They are so dinky and easy to use and not messy. With the other tea infusers like the metal balls and the like, I find they are messy to use and take too much time to clean. These little paper bags are quick to use and disposable (and biodegradable too).
So, the tea. It's called 'Destination Premium' Hubei and Fujian Chinese tea, floral and refreshing. It's flavoured with jasmine so the taste and smell is floral. The bag lasted for ages as I only needed a few leaves to make a cup strong enough for me. I had to be careful not to leave it to steep too long as that made it too strong as well. However, the tea never had that bitter taste even if it was left a long time in the cup.
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The taste was more full-bodied than other teas I'd tasted and the floral hints made it an aromatic pleasure. Don't know what the price is but it's probably a very economic way to drink green tea as the bag lasts so long. Ingredients: Green Tea only! No additives.
+ Bag lasts for ages and great if you like floral teas and strong tea with a stronger flavour, organic.
- Not good if you don't like stronger teas or floral taste or smell and can't be bothered with tea bags
And the third tea today is a Kusmi Tea, luxe de luxe! This was a treat from a lovely friend. I'd been saving it since Christmas and now I've nearly finished it:-( I've written already about the historic Kusmi teas and how they have updated their image and are now uber-fashionable (in Paris at least). The packaging is gorgeous and the mix is interesting. This tea is called 'BB Detox' and it contains green tea, maté, rooibos, guarana and dandelion. It is also grapefruit scented. The best thing about this tea is opening the tin in the morning and inhaling the smell! It's heavenly. Not strong but refreshing and delicious. A real pleasure.
.JPG)
The tea itself (and it's tea leaves) is light, non bitter and very easy to drink. Slips down nicely. You're left with a refreshing taste and a feeling of having your thirst really satisfied.
I'm not sure if it detoxifies but it feels clean and afterwards my pee is pale yellow (sorry tmi).
Although the tea was a present, I did look at the price in my local shop and it's really expensive, so it's a luxury and a really generous present.
+ The smell and the light taste and the feeling that you might be doing good things for your body. The packaging and the cheerful yellow are a pleasure to look at too.
- The price
My first was a present from my parents and bought from Sainsburys in the UK. They gave me two boxes of this Free Trade tea, one with a peach flavour, the other mint flavour. I liked them both very much. Light, refreshing and not too perfumed. Perfect at all times of the day (apart from after 18h because if I drink tea after then I my sleep is even worse than normal).
 | ||||||||||||||||||||||
| Hell I can't rotate it! |
+ points - great tasting everyday tea, Free Trade, non bleached bags
- points - can't get it in France!
The second tea is a really serious bag of tea leaves. This was very kindly brought to me by a lovely lady who had come all the way from the next town on the train to deliver a home-cooked meal when I was just out of hospital. She'd added all sorts of other treats, this tea included. I simply cannot express enough gratitude to the people who came round during that very difficult period bringing delicious food, drink and treats or coming round to pick up ironing or deliver cakes or magazines and with it showing their love and concern. It warms my heart still to think of the care and outpouring of concern that they showed and believe me it helped me enormously and also helped my children, and showed my scared husband that there were good guys and gals in the world and sometimes that good things happened, amongst the horror and sadness that we'd come across.
So, back to the tea. I don't like to make a pot unless I have visitors and a friend showed me these really neat disposable tea bags which are on sale in a local posh kitchenware shop. They are so dinky and easy to use and not messy. With the other tea infusers like the metal balls and the like, I find they are messy to use and take too much time to clean. These little paper bags are quick to use and disposable (and biodegradable too).
So, the tea. It's called 'Destination Premium' Hubei and Fujian Chinese tea, floral and refreshing. It's flavoured with jasmine so the taste and smell is floral. The bag lasted for ages as I only needed a few leaves to make a cup strong enough for me. I had to be careful not to leave it to steep too long as that made it too strong as well. However, the tea never had that bitter taste even if it was left a long time in the cup.
The taste was more full-bodied than other teas I'd tasted and the floral hints made it an aromatic pleasure. Don't know what the price is but it's probably a very economic way to drink green tea as the bag lasts so long. Ingredients: Green Tea only! No additives.
+ Bag lasts for ages and great if you like floral teas and strong tea with a stronger flavour, organic.
- Not good if you don't like stronger teas or floral taste or smell and can't be bothered with tea bags
And the third tea today is a Kusmi Tea, luxe de luxe! This was a treat from a lovely friend. I'd been saving it since Christmas and now I've nearly finished it:-( I've written already about the historic Kusmi teas and how they have updated their image and are now uber-fashionable (in Paris at least). The packaging is gorgeous and the mix is interesting. This tea is called 'BB Detox' and it contains green tea, maté, rooibos, guarana and dandelion. It is also grapefruit scented. The best thing about this tea is opening the tin in the morning and inhaling the smell! It's heavenly. Not strong but refreshing and delicious. A real pleasure.
The tea itself (and it's tea leaves) is light, non bitter and very easy to drink. Slips down nicely. You're left with a refreshing taste and a feeling of having your thirst really satisfied.
I'm not sure if it detoxifies but it feels clean and afterwards my pee is pale yellow (sorry tmi).
Although the tea was a present, I did look at the price in my local shop and it's really expensive, so it's a luxury and a really generous present.
+ The smell and the light taste and the feeling that you might be doing good things for your body. The packaging and the cheerful yellow are a pleasure to look at too.
- The price
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