I'm never sure if it's just a weird coincidence - or if it's something about the experience and breast cancer journey that triggers this - but there are an awful lot of women who, like me, are driven to write about their experiences online.
Breast cancer survivor blogs and sites are becoming more and more common and they cover a fascinating range in their scope, their style and their intent.
Our site here is a mix of (hopefully) useful factual breast cancer information from Gordon and personal reflection or supportive thoughts from me. Some other blogs take a similar approach, others come at it from a different angle.
Here are a few of our favourites - if you know of others then please leave a comment below.
Jan Hasak has a wonderful site devoted to patient advocacy, lymphedema and living live fully as a breast cancer survivor.
Ann Silberman from Sacramento shows the quirky humour approach taken by many in her site called Breast Cancer? But Doctor ... I hate Pink !
Jeanette has supported thousands of women over many years on her wonderful Two Hands ... site - exploring her own breast cancer treatment experiences (and there have been lots of them ...) with humor and real insight. Sylvie Fortin does the same over at Breast Cancer Victory - exploring her feelings and giving helpful advice.
No doubt as you read this you know of others - maybe you write your own - maybe you're starting out on the big cancer roller coaster yourself and wondering about blogging or writing to help get you through?
Sites like ours and all those mentioned above do make a big difference and over the years I've had hundreds of emails and comments from grateful readers. If you're writing then keep it up - more power to your elbow. If you plan to start then please do - it's very worthwhile, both to yourself and to those who read your posts.
PS: Just noticed that this is our 100th post to this blog site. Wow, who would have thought it when the journey started and we first wrote four years ago - next target ... 200 of course.
Love and good health to all
Marjory
Sunday, March 28, 2010
Saturday, March 20, 2010
Breast Cancer Travel Insurance
Getting travel insurance after breast cancer is sometimes difficult - as is getting any kind of insurance after breast cancer of course. Trying to find decent life asurance, PHI or work related policies and even simple travel health insurance can result in hours and hours spent on the phone or searching online.
One of our readers posted this as a question and it's a great one.
We'd love your help to build up a suggestion list for companies who can provide good quality and reasonable price breast cancer travel insurance policies.
There will be variation between countries of course, we realize that but please share whatever information you have on the subject.
In the UK we particularly like InsurePink - a company created by a breast cancer survivor and dedicated to providing a good service to those who have come through the breast cancer ordeal and want to get back to a normal life again. The founder of Insure Pink - Fiona Macrae persuaded Equity Insurance to help support the project and the plan is to cut premiums by around 50% for breast cancer survivors who want to travel.
Have you tried their policies?
How did it go? Please leave a comment
One of our readers posted this as a question and it's a great one.
We'd love your help to build up a suggestion list for companies who can provide good quality and reasonable price breast cancer travel insurance policies.
There will be variation between countries of course, we realize that but please share whatever information you have on the subject.
In the UK we particularly like InsurePink - a company created by a breast cancer survivor and dedicated to providing a good service to those who have come through the breast cancer ordeal and want to get back to a normal life again. The founder of Insure Pink - Fiona Macrae persuaded Equity Insurance to help support the project and the plan is to cut premiums by around 50% for breast cancer survivors who want to travel.
Have you tried their policies?
How did it go? Please leave a comment
Monday, March 08, 2010
FEC chemotherapy | CEF chemo treatment
What is FEC or CEF chemotherapy?
This question was submitted to us using the box in the right margin of the page - if you have a question then you can ask it just by typing it in. We'll try to answer it for you or for others to share.
FEC and CEF are the initials of three different chemotherapy drugs which are commonly used in breast cancer.
The drugs are:
This question was submitted to us using the box in the right margin of the page - if you have a question then you can ask it just by typing it in. We'll try to answer it for you or for others to share.
FEC and CEF are the initials of three different chemotherapy drugs which are commonly used in breast cancer.
The drugs are:
- Cyclophosphamide
- Epirubicin
- Fluorouracil
In the UK the abbreviation is normally written as CEF - in the USA it seems more common to write it as FEC. The treatment is the same in both countries.
Chemotherapy drugs in breast cancer are often given in combinations or "cocktails" - the evidence seems to be that this gives a more powerful effect and a more effective treatment.
Have you had experiences of this kind of chemotherapy too? Leave a comment below and share with others.
Saturday, March 06, 2010
Mastectomy Bra - Choices .... Choices ?
Ok - here's a plea for your help - please leave a comment and contribute if you can. You'll be able to offer great support and help to others reading this.
Having written several times about my own difficulty finding a decent post mastectomy bra, I get frequent emails asking for advice about what to do. I remember only too clearly the trauma I felt - and the despair at times - when searching for something to wear.
When I first started looking for mastectomy bras the only ones that seemed to be available were like something my mother would wear .... no offense mum ! Not having a big bust to start with I'd always been able to wear T shirt type bras - but the only mastectomy ones on offer were (as my daughter called them) "over the shoulder boulder holders." Far from making me feel feminine and pretty they just made me feel frumpy and made the whole experience all the worse for that.
Most mastectomy bras are pocketed on both sides but there are some companies who make them without pockets - useless!! The prosthesis just seemed to have a mind of its own and moved around everywhere. Not a good look.
I never really did get the balance right. I found a bra that worked well for me - but didn't like how it looked. I found one that I liked the look of but couldn't get comfortable with it.
If you are looking online the Nicola Jane range is very practical and the bras work well - however, mastecomy bras are much more expensive than normal bras and again I found them rather old fashioned.
So ... again ... can you help with this for others?
If you've found a good bra post mastectomy then please leave a comment below. If you know of a good supplier or a good comfy option then get in touch.
More on this subject later.
Marjory
Having written several times about my own difficulty finding a decent post mastectomy bra, I get frequent emails asking for advice about what to do. I remember only too clearly the trauma I felt - and the despair at times - when searching for something to wear.
When I first started looking for mastectomy bras the only ones that seemed to be available were like something my mother would wear .... no offense mum ! Not having a big bust to start with I'd always been able to wear T shirt type bras - but the only mastectomy ones on offer were (as my daughter called them) "over the shoulder boulder holders." Far from making me feel feminine and pretty they just made me feel frumpy and made the whole experience all the worse for that.
Most mastectomy bras are pocketed on both sides but there are some companies who make them without pockets - useless!! The prosthesis just seemed to have a mind of its own and moved around everywhere. Not a good look.
I never really did get the balance right. I found a bra that worked well for me - but didn't like how it looked. I found one that I liked the look of but couldn't get comfortable with it.
If you are looking online the Nicola Jane range is very practical and the bras work well - however, mastecomy bras are much more expensive than normal bras and again I found them rather old fashioned.
So ... again ... can you help with this for others?
If you've found a good bra post mastectomy then please leave a comment below. If you know of a good supplier or a good comfy option then get in touch.
More on this subject later.
Marjory
Thursday, March 04, 2010
Breast tenderness - a symptom to worry about?
Should you worry about breast tenderness?
Marjory and I often get email requests for advice or information - and the subject of tender lumps or tenderness in the breast comes up often. So - what would you do?
Firstly, I think there's an issue about the definition of the word. Tenderness for you might be pain for someone else - or might not even register as discomfort for another woman. None of us are the same in how our body reacts to pain or pain related symptoms. I remember having a sore shoulder after my mastectomy and wondering if all women found it this painful or if it was just me?
Secondly, is the symptom constant and ongoing or intermittent and only present for part of the day or for a part of each week or month?
But let me say again what I've said many times on this site. If you're worried about any breast related symptom then go see a doctor and have a check over. Don't rely on sites like this for information. Yes, we can try to help and educate but if you're worried you need to see someone medical for an examination.
So - back to the topic of tenderness in the breast or breasts. What does it mean?
Usually the problem relates to hormone changes - seen for example in early pregnancy or as a side effect of contraceptive medications like the pill or contraceptive injections and implants. The new Implanon contraceptive often causes breast tenderness and discomfort. Other non hormone medications can also trigger this symptom but this is much less frequent.
Some women feel their breasts tender every menstrual cycle as they get near the time of their period. This can sometimes be a part of what's sometimes called the "Pre Menstrual Syndrome" or PMS.
Older women also sometimes experience sore or aching breasts as they enter the menopause. The fluctuating levels of hormones can trigger significant discomfort.
Less frequent causes of tenderness in the breasts might include Hormone Replacement Therapy treatment, previous injury to the area, fluid retention relating to other diseases and conditions, large cyst formation - and rarely it can relate to a high regular alcohol intake.
Can breast cancer cause tender breasts?
The answer to this is yes - it can .... but it doesn't usually do so.
Most breast cancer lumps are painless but some forms of breast cancer (like inflammatory breast cancer for example) can cause widespread discomfort, tenderness, soreness or pain.
So - what's my message? You guessed it - if in doubt then go get a check over ...... Please ?
Posted by Gordon - please leave your comments below.
Marjory and I often get email requests for advice or information - and the subject of tender lumps or tenderness in the breast comes up often. So - what would you do?
Firstly, I think there's an issue about the definition of the word. Tenderness for you might be pain for someone else - or might not even register as discomfort for another woman. None of us are the same in how our body reacts to pain or pain related symptoms. I remember having a sore shoulder after my mastectomy and wondering if all women found it this painful or if it was just me?
Secondly, is the symptom constant and ongoing or intermittent and only present for part of the day or for a part of each week or month?
But let me say again what I've said many times on this site. If you're worried about any breast related symptom then go see a doctor and have a check over. Don't rely on sites like this for information. Yes, we can try to help and educate but if you're worried you need to see someone medical for an examination.
So - back to the topic of tenderness in the breast or breasts. What does it mean?
Usually the problem relates to hormone changes - seen for example in early pregnancy or as a side effect of contraceptive medications like the pill or contraceptive injections and implants. The new Implanon contraceptive often causes breast tenderness and discomfort. Other non hormone medications can also trigger this symptom but this is much less frequent.
Some women feel their breasts tender every menstrual cycle as they get near the time of their period. This can sometimes be a part of what's sometimes called the "Pre Menstrual Syndrome" or PMS.
Older women also sometimes experience sore or aching breasts as they enter the menopause. The fluctuating levels of hormones can trigger significant discomfort.
Less frequent causes of tenderness in the breasts might include Hormone Replacement Therapy treatment, previous injury to the area, fluid retention relating to other diseases and conditions, large cyst formation - and rarely it can relate to a high regular alcohol intake.
Can breast cancer cause tender breasts?
The answer to this is yes - it can .... but it doesn't usually do so.
Most breast cancer lumps are painless but some forms of breast cancer (like inflammatory breast cancer for example) can cause widespread discomfort, tenderness, soreness or pain.
So - what's my message? You guessed it - if in doubt then go get a check over ...... Please ?
Posted by Gordon - please leave your comments below.
Wednesday, March 03, 2010
This too will pass ....
What is it that keeps you going as you struggle with the breast cancer experience?
What get's you through when things seem overwhelmingly bleak?
We've put the first verse of the poem Invictus top right of this page - now made famous by the recent Matt Damon and Morgan Freeman film of course - but around as source of inspiration and courage to many for more than a hundred years. The words are great and if you don't know the poem you can read it and more about it here. William Henley didn't have cancer but he did suffer from tuberculosis in the bone and spent much of his life struggling to cope after having his leg amputated below the knee.
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
There must be many other poems that reach into our lives and lift us up when we need it most.
Maybe for you it's a song - or a film? Or a book? Or a photograph .....?
For Marjory and I it's a pair of simple rings. We went out together and bought them about a week after the diagnosis was confirmed. They're engraved on the inner side of the band with the words
"This too will pass"
When things get tough we take them off and look at those words, and we remember how we felt and what our fears for the future were on the day we bought them.
No matter how dark the night is that covers you, there is and will always be light at the end of the tunnel. You just need to have faith that the bleak spell will pass and that the sun will shine again.
What do you do to keep your head "bloody, but unbowed"
Share your own experiences below. Reading how others cope is a great source of strength and comfort.
Be well
G and M
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