Having a cancer diagnosis and then having treatment is a daunting thing; it changes your life, often forever!
So the thought of returning to normal after treatment has ended is something that we all hope will come soon!
However, sometimes we have to find a new "normal" as its often impossible to return to the way of life we had before.
Whether that is because of physical reasons or psychological ones, it is often hard for us to come to terms with those changes.
Very often, when we are going through treatment we are looked after by a team of people who we feel connected to and we know that if something crops up or we need to talk to someone then we can contact them. But when treatment ends, we can feel that we are cast adrift and left to cope on our own.
The number of people surviving cancer is increasing but very often there is little or no long term support for those of us that have health problems as a result of the treatment.
A recent study has shown that around 3 out of 4 patients are not given enough information on coping with long-term effects of the
illness.
According to the Dept. of Health, a national survey of cancer survivors indicated about a quarter of people were
feeling isolated after being treated for cancer, and almost 30% said they had many issues that were not being addressed,
including fears about their cancer spreading.
Currently about 1.8m people in England alone, are being or have been treated for cancer - a
figure that is set to rise to 3.4m by 2030.
There needs to be more support there for patients who have finished treatment but are often still not able to return to "normal" - many of us will be left with long term problems that are often left ignored or we just put up with them. This can then lead to stress and depression, especially when close family members and friends fail to understand the long term emotional and psychological effects.
Being told that you "must be glad its all over" or "you are looking a lot better" (when you actually feel really ill!!!) or even worse, "what are you moaning about, you havn't got cancer anymore" are really not helpful. Neither is going to see your GP and being given the brush off and a prescription for anti depressants!!!
So, we struggle on, trying our best to see some positives in the fact that we no longer have cancer! We try to pick up the pieces of our life and hope that one day we can "get back to normal"
Whatever "normal" is!!
Wednesday, 24 April 2013
Thursday, 11 April 2013
Happy Birthday to us!
Two years ago today, WCSUK was created. It's our 2nd Birthday today!
We started out as an online support group for women who were going through, or had gone through womb cancer. Our numbers slowly grew and as they did we began to realise that a lot of the women who were joining us had been unaware of womb cancer before they were diagnosed.
Unlike breast, cervical and ovarian cancer, that gets a lot of publicity and awareness campaigns, womb cancer is not very well known about. So we decided that alongside the support aspect of what we do, that we should also help to raise awareness of a cancer that, according to the most up to date statistics, around 9,000 women are diagnosed with each year and about 1,900 actually die of.
So, following in the lead of our US peach sisters from http://www.uterinecancerawareness.org/, we declared September Womb Cancer Awareness Month and in Sept of 2011, we held a month long campaign on Facebook to get people to turn their profile pics peach.
We did the same again in 2012 and had a huge response from our followers and their friends. It was great to log on each day and see peach themed or peach coloured pics everywhere.
We can only do so much, as we are not a charity or a registered organisation. We are just a bunch of dedicated womb cancer fighters and survivors who want to make a difference.
We now have over 640 likers on our FB page; not all of them are womb cancer warriors, some are relatives and friends of women who are fighting and others are supporters of what we do. But they all have a role to play in helping us spread the word about womb cancer.
And you can play a part in that aswell. If you're reading this blog post , then please share it. Help us reach out to other women who may be going through womb cancer.
They may be alone and scared just like I was 3+ years ago. But they don't have to be anymore.
Our motto is "No one fights alone!"
We started out as an online support group for women who were going through, or had gone through womb cancer. Our numbers slowly grew and as they did we began to realise that a lot of the women who were joining us had been unaware of womb cancer before they were diagnosed.
Unlike breast, cervical and ovarian cancer, that gets a lot of publicity and awareness campaigns, womb cancer is not very well known about. So we decided that alongside the support aspect of what we do, that we should also help to raise awareness of a cancer that, according to the most up to date statistics, around 9,000 women are diagnosed with each year and about 1,900 actually die of.
So, following in the lead of our US peach sisters from http://www.uterinecancerawareness.org/, we declared September Womb Cancer Awareness Month and in Sept of 2011, we held a month long campaign on Facebook to get people to turn their profile pics peach.
We did the same again in 2012 and had a huge response from our followers and their friends. It was great to log on each day and see peach themed or peach coloured pics everywhere.
We can only do so much, as we are not a charity or a registered organisation. We are just a bunch of dedicated womb cancer fighters and survivors who want to make a difference.
We now have over 640 likers on our FB page; not all of them are womb cancer warriors, some are relatives and friends of women who are fighting and others are supporters of what we do. But they all have a role to play in helping us spread the word about womb cancer.
And you can play a part in that aswell. If you're reading this blog post , then please share it. Help us reach out to other women who may be going through womb cancer.
They may be alone and scared just like I was 3+ years ago. But they don't have to be anymore.
Our motto is "No one fights alone!"
Saturday, 6 April 2013
A survivors story by H.E
Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story, this time from one of our peach sister's in the US.
I am now 37 years old. I was diagnosed and treated for Uterine Cancer when I was 35.
For many years I had problems with irregular menstrual cycles. This was nothing new. What was new and got me calling my Dr was when after intercourse I was having bleeding.
I was having bad cramping before my period would start. Pain during intercourse. These were things I was just dealing with. I was afraid what the Dr may say.
My husband and I wanted children and were not having any luck. We found out later the cancer was the cause. When I did go to the Dr. I was told I had polyps and that would fix the problems of bleeding after intercourse and pain during.
I went to a OB/GYN and there was an exam. What was found was actually tissue masses. The tissue masses were removed and sent for testing. The samples were tested several times before the results were sent to the Dr. I then found out I had cancer.
My cancer was caught at stage one Grade one which is the lowest grade. This was a good thing. My treatment was a hysterectomy. I am continuing to see my Dr on a regular basis and the cancer has not returned.
I had a friend that was diagnosed with Uterine Cancer that was in stage 4 about the same time. Her cancer was misdiagnosed. She had cervical cancer and has since passed away.
She was the reason I went to see my Dr. She is the reason I am able to share my story and in some ways her story as well and bring awareness.
.
I am now 37 years old. I was diagnosed and treated for Uterine Cancer when I was 35.
For many years I had problems with irregular menstrual cycles. This was nothing new. What was new and got me calling my Dr was when after intercourse I was having bleeding.
I was having bad cramping before my period would start. Pain during intercourse. These were things I was just dealing with. I was afraid what the Dr may say.
My husband and I wanted children and were not having any luck. We found out later the cancer was the cause. When I did go to the Dr. I was told I had polyps and that would fix the problems of bleeding after intercourse and pain during.
I went to a OB/GYN and there was an exam. What was found was actually tissue masses. The tissue masses were removed and sent for testing. The samples were tested several times before the results were sent to the Dr. I then found out I had cancer.
My cancer was caught at stage one Grade one which is the lowest grade. This was a good thing. My treatment was a hysterectomy. I am continuing to see my Dr on a regular basis and the cancer has not returned.
I had a friend that was diagnosed with Uterine Cancer that was in stage 4 about the same time. Her cancer was misdiagnosed. She had cervical cancer and has since passed away.
She was the reason I went to see my Dr. She is the reason I am able to share my story and in some ways her story as well and bring awareness.
.
If you would like to share your story and help raise awareness then please contact us at wombcancersupportuk@hotmail.co.uk
Sunday, 31 March 2013
Inspirational Ladies
Some times, you meet people who have a profound impact in your life. You might not know it at the time, but eventually you realise that your paths crossed for a reason and it was meant to be.
Sometimes, you don't even have to "meet" them in real life - even just knowing them via their online presence is enough to have an impact.
So it is with some special ladies who are part of WCSUK.
One of these ladies is sadly no longer with us. She passed away last year. Cancer yet again robbed a family of a much loved mother and wife.
She was a member of our private chat group and even as the cancer slowly took its hold on her she continued to post in the group and when she moved to a hospice, her family kept us informed about how she was settling in.
It was a sad day for us all when we heard the news of her passing. Her smiling face in the photo she used as her Facebook profile pic will remain in our hearts for a long time.
Of course, deep down you know that cancer will take some people. But for it to take someone from WCSUK, our little group of ninja womb warriors, was hard for many of us to bear; those of us that had become close to our peach sister.
But, we moved on, as you do. More fighters joined the group, ladies at the start of their cancer journey. We had to stop dwelling on the negative and focus on the positive, for them and the others in the group who are still fighting.
And we are all fighters, each and every one of us. We are fighting this nasty thing that has come into our lives and our bodies.
Some of us fight quietly, in our own way. Drawing on some inner strength that maybe we didn't know we had.
Some of us put on our best steel toecapped boots and are determined to kick the s**t outta cancer!
Our motto in WCSUK is "no one fights alone" - thats the whole reason behind why I started the group. I didn't want other women to feel as alone and scared as I had done 3 years ago.
So to all the peach sisters out there - keep fighting and know that you are never alone. xxxx
Sometimes, you don't even have to "meet" them in real life - even just knowing them via their online presence is enough to have an impact.
So it is with some special ladies who are part of WCSUK.
One of these ladies is sadly no longer with us. She passed away last year. Cancer yet again robbed a family of a much loved mother and wife.
She was a member of our private chat group and even as the cancer slowly took its hold on her she continued to post in the group and when she moved to a hospice, her family kept us informed about how she was settling in.
It was a sad day for us all when we heard the news of her passing. Her smiling face in the photo she used as her Facebook profile pic will remain in our hearts for a long time.
Of course, deep down you know that cancer will take some people. But for it to take someone from WCSUK, our little group of ninja womb warriors, was hard for many of us to bear; those of us that had become close to our peach sister.
But, we moved on, as you do. More fighters joined the group, ladies at the start of their cancer journey. We had to stop dwelling on the negative and focus on the positive, for them and the others in the group who are still fighting.
And we are all fighters, each and every one of us. We are fighting this nasty thing that has come into our lives and our bodies.
Some of us fight quietly, in our own way. Drawing on some inner strength that maybe we didn't know we had.
Some of us put on our best steel toecapped boots and are determined to kick the s**t outta cancer!
Our motto in WCSUK is "no one fights alone" - thats the whole reason behind why I started the group. I didn't want other women to feel as alone and scared as I had done 3 years ago.
So to all the peach sisters out there - keep fighting and know that you are never alone. xxxx
Monday, 25 March 2013
Relationship Issues
Something that crops up on a regular basis in the WCSUK private chat group is the issue of relationships!
Most, but not all, of the women in the group are either married or in a stable relationship and the long term side effects of having a hysterectomy, and all the hormonal side effects that brings, can have a serious impact on a relationship.
Even without the added issues of having cancer its a tough time for any relationship to go through.
Sadly even the strongest marriages have been put under stain, and many have suffered, because of these issues.
What can we do for ourselves? Well, talking to your partner has to be the first step. If you can be open and honest with them about how you feel, very often they will be receptive and try to understand.
Many women find that they enjoy sex more after a hysterectomy but if you're not one of them then please don't think bad about yourself.
Talk to your GP about how you feel, and maybe ask for a referral to a counsellor who can offer help with sexual problems.
Lack of sex drive can be made worse by depression and also menopausal symptoms. Also if you are worrying about your relationship problems then this will also affect your sex drive. These problems are often temporary, but if symptoms of menopause or depression persist then please see your doctor for treatment.
There is a wealth of information available on the internet but I would strongly recomend the Macmillan website.
Their section on sexuality and relationships is very good. http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Relationshipscommunication/Sexuality/Sexuality.aspx
Please do not suffer in silence. If you feel unable to talk to your partner, or they won't listen to what you have to say then seek help from your GP or a counsellor.
Most, but not all, of the women in the group are either married or in a stable relationship and the long term side effects of having a hysterectomy, and all the hormonal side effects that brings, can have a serious impact on a relationship.
Even without the added issues of having cancer its a tough time for any relationship to go through.
Sadly even the strongest marriages have been put under stain, and many have suffered, because of these issues.
What can we do for ourselves? Well, talking to your partner has to be the first step. If you can be open and honest with them about how you feel, very often they will be receptive and try to understand.
Many women find that they enjoy sex more after a hysterectomy but if you're not one of them then please don't think bad about yourself.
Talk to your GP about how you feel, and maybe ask for a referral to a counsellor who can offer help with sexual problems.
Lack of sex drive can be made worse by depression and also menopausal symptoms. Also if you are worrying about your relationship problems then this will also affect your sex drive. These problems are often temporary, but if symptoms of menopause or depression persist then please see your doctor for treatment.
There is a wealth of information available on the internet but I would strongly recomend the Macmillan website.
Their section on sexuality and relationships is very good. http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Relationshipscommunication/Sexuality/Sexuality.aspx
Please do not suffer in silence. If you feel unable to talk to your partner, or they won't listen to what you have to say then seek help from your GP or a counsellor.
Friday, 8 March 2013
International Women's Day
Today, 8th March, is International Women's Day.
There are 1,000's of events happening around the world to mark the economic, social and political achievements of women.
As last year, we at WCSUK are taking part by asking people to take a simple pledge - to help raise awareness of womb cancer!
https://www.facebook.com/events/587352184627351/#!/events/587352184627351/
Please join us in raising awareness and help us cut the number of women being diagnosed with this cancer.
We know that it's not just a cancer that affects post menopausal women so all women need to be aware of the signs and symptoms and be aware of the factors that make it more likely that they might be at risk of getting it.
You can check out our page on the International Women's Day website too http://www1.internationalwomensday.com/wcsuk
So please share the links with all your female friends. We have to spread the word and raise awareness if we are to cut the number of women being diagnosed.
Kaz
There are 1,000's of events happening around the world to mark the economic, social and political achievements of women.
As last year, we at WCSUK are taking part by asking people to take a simple pledge - to help raise awareness of womb cancer!
https://www.facebook.com/events/587352184627351/#!/events/587352184627351/
Please join us in raising awareness and help us cut the number of women being diagnosed with this cancer.
We know that it's not just a cancer that affects post menopausal women so all women need to be aware of the signs and symptoms and be aware of the factors that make it more likely that they might be at risk of getting it.
You can check out our page on the International Women's Day website too http://www1.internationalwomensday.com/wcsuk
So please share the links with all your female friends. We have to spread the word and raise awareness if we are to cut the number of women being diagnosed.
Kaz
Monday, 4 March 2013
Your help required please!
We were contacted last week by Dr Jane Dennehey, the co-founder of the Gender Hub a research organisation interested in social issues with a focus on health and work.
She has asked if WCSUK would take part in a survey which is about understanding how women, their partners, families and friends cope and live with womb cancer on a day-to-day basis.
We have placed details of the survey on the Facebook page https://www.facebook.com/WombCancerSupportUK
and so far 27 of the women from the group have done the survey, so thank you very much to them.
The survey can be accessed via this link http://www.surveymonkey.com/s/2ZLQ2RM so if you are interested in taking part then please do so. There is the option of doing a follow up survey, either by phone or email, but there is no pressure on you to do so.
The initial survey is completely confidential.
She has asked if WCSUK would take part in a survey which is about understanding how women, their partners, families and friends cope and live with womb cancer on a day-to-day basis.
We have placed details of the survey on the Facebook page https://www.facebook.com/WombCancerSupportUK
and so far 27 of the women from the group have done the survey, so thank you very much to them.
The survey can be accessed via this link http://www.surveymonkey.com/s/2ZLQ2RM so if you are interested in taking part then please do so. There is the option of doing a follow up survey, either by phone or email, but there is no pressure on you to do so.
The initial survey is completely confidential.
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