I've just had my 4th Hysterversary - 4 years since my hysterectomy. That was followed by chemotherapy and then external radiotherapy.
So by mid July 2010 I had finished my treatment and was looking forward to getting "back to normal" and getting on with my life.
Only it didn't work out that way!
Since then, my health has failed to improve and in reality it has got much worse. Apart from suffering with long term side effects of the cancer treatment - cognitive and memory issues as well as fatigue from the chemo and bowel and bladder issues from the radiotherapy; I have also been diagnosed with an epi gastric hernia; an underactive thyroid and lymphedema in both legs.
Since mid 2010 I have been struggling to improve my health seemingly to no avail! On a visit to my GP a couple of days ago I was told that my health now is as good as its going to get!
Gee, thanks for that!
I have blogged before about the lack of information that I feel cancer patients are given prior to their treatment and this is an issue that is constantly mentioned by many of the women in the support group.
I know that I am one of a small minority and that the vast majority of cancer patients recover and manage to return to a life of relative normality but I still feel that I wasn't given the full picture about the possible long term side effects of my treatment.
In this day and age I think it's time that the relationship between patient and Doctor needs to change. We no longer live in that "them and us" era - where patients are not expected to question what their Doctors say. We have the internet and, if used properly, it allows us to research things and arms us with the ability to find out information and helps re dress the imbalance.
Most Doctors, Consultants etc. are nowadays used to being asked questions during appointments and
we, as patients need to be asking questions.
How can we give informed consent for something like an operation or chemotherapy treatment if we have not been fully informed about all the risks and side effects?
I for one, regret not being better self informed before I had my surgery and treatment. I was scared and frightened and it never crossed my mind to ask questions.
This is why WCSUK is trying to empowering women who are at the beginning of this journey by giving them information to enable them to ask questions of their medical team.
Only by being informed about everything can a women truly give her informed consent.
Thursday 30 January 2014
Sunday 26 January 2014
Real friends stick by you through thick and thin!
One thing that cancer teaches you is that real friends are not always the ones you thought they were!
It is a sad fact of life that when you get a cancer diagnosis, you often loose some of the people in your life that you thought you could rely on. Often they are people who may have been in your life for many years and you may even have stood by them through some of their tough times. At times of crisis we want and need people around us that we can rely on, so it can come as a real shock when they disappear out of your life just at the time when you need them most!
This doesn't just apply to friends; sadly it can also happen with family members.
Why do people do this? I guess we'll never really know the true answer but some people find that they can't handle a cancer diagnosis in a close friend/family member. They may be scared; for you or for themselves. They might think that you don't want them around whilst you are going through your treatment.
There are many reasons why but what we need to understand is that we have to let them go and not carry any anger with us as it sure won't do us any good.
Just as we may find that people we regarded as friends leave our lives we also find that some people who we may know but only as acquaintances, become much more than that during our cancer journey. We may well forge new and lasting friendships, often with people we would never have expected to.
Sometimes however, we loose more than just friends. Occasionally, marriages break up because of a cancer diagnosis as one partner finds they can't cope with cancer being part of the marriage. A husband may find that he no longer finds his wife attractive after she has undergone say, a mastectomy for breast cancer or a wife might find that after recovering from cancer she wants more out of her live that just being a housewife.
Cancer affects many more people that just the person with the diagnosis and it can take time to find a new normal, a new balance in life. When treatment has ended, a cancer patient finds it very hard to slip back into their old way of life. Your whole perception of life has changed. Things that you once took for granted or things that you once thought important, no longer mean the same.
Family and friends often find it hard to accept the new "you" and it can cause friction and fall outs.
In the end however, we have to do what is right for us. It's no good fighting and surviving cancer if you are going to spend the rest of your life doing something just to please other people.
It's like being given a second chance at life and this time you're not going to waste in - you're going to make the most of every minute of it. Those who care most about you will understand that and will be there to cheer you on.
Live life like there is no tomorrow!
It is a sad fact of life that when you get a cancer diagnosis, you often loose some of the people in your life that you thought you could rely on. Often they are people who may have been in your life for many years and you may even have stood by them through some of their tough times. At times of crisis we want and need people around us that we can rely on, so it can come as a real shock when they disappear out of your life just at the time when you need them most!
This doesn't just apply to friends; sadly it can also happen with family members.
Why do people do this? I guess we'll never really know the true answer but some people find that they can't handle a cancer diagnosis in a close friend/family member. They may be scared; for you or for themselves. They might think that you don't want them around whilst you are going through your treatment.
There are many reasons why but what we need to understand is that we have to let them go and not carry any anger with us as it sure won't do us any good.
Just as we may find that people we regarded as friends leave our lives we also find that some people who we may know but only as acquaintances, become much more than that during our cancer journey. We may well forge new and lasting friendships, often with people we would never have expected to.
Sometimes however, we loose more than just friends. Occasionally, marriages break up because of a cancer diagnosis as one partner finds they can't cope with cancer being part of the marriage. A husband may find that he no longer finds his wife attractive after she has undergone say, a mastectomy for breast cancer or a wife might find that after recovering from cancer she wants more out of her live that just being a housewife.
Cancer affects many more people that just the person with the diagnosis and it can take time to find a new normal, a new balance in life. When treatment has ended, a cancer patient finds it very hard to slip back into their old way of life. Your whole perception of life has changed. Things that you once took for granted or things that you once thought important, no longer mean the same.
Family and friends often find it hard to accept the new "you" and it can cause friction and fall outs.
In the end however, we have to do what is right for us. It's no good fighting and surviving cancer if you are going to spend the rest of your life doing something just to please other people.
It's like being given a second chance at life and this time you're not going to waste in - you're going to make the most of every minute of it. Those who care most about you will understand that and will be there to cheer you on.
Live life like there is no tomorrow!
Friday 10 January 2014
WEGO health activist nomination
What a great way to start 2014!
We found out that WCSUK has been nominated for an award for the best Facebook presence in the Health Activist Awards run by WEGO Health, a platform for health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.
Fantastic that someone (we were nominated anonymously apparently!) thought that WCSUK deserved to be recognised for the work we do. Thank you whoever you are!
You can endorse our nomination here https://awards.wegohealth.com/nominees/womb-cancer-support-uk-1525 by clicking on the purple bar under the ribbon! Please share the link around as it would be lovely to think we might stand a chance of winning this award. It would help us be seen by so many women and some of them might need some help and support.
My local paper even reported on the nomination on their website http://www.buteman.co.uk/news/health/cancer-support-group-from-bute-nominated-for-award-1-3260913
Since WCSUK started back in April 2011, the private chat group has grown to over 100 women who support each other through the tough times, and are welcoming and supportive to all new ladies who join the group.
However, WCSUK is more that just the private chat group. The main FB page https://www.facebook.com/WombCancerSupportUK is the focus of what we do.
From here we share information; raise awareness and network with other organisations.
There are now over 840 on the page and the numbers are growing all the time.
Hopefully the exposure WCSUK gains from this nomination means that we can reach even more women who are going through a womb cancer diagnosis.
With your help as well, we can say that "No one fights alone".
We found out that WCSUK has been nominated for an award for the best Facebook presence in the Health Activist Awards run by WEGO Health, a platform for health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.
Fantastic that someone (we were nominated anonymously apparently!) thought that WCSUK deserved to be recognised for the work we do. Thank you whoever you are!
You can endorse our nomination here https://awards.wegohealth.com/nominees/womb-cancer-support-uk-1525 by clicking on the purple bar under the ribbon! Please share the link around as it would be lovely to think we might stand a chance of winning this award. It would help us be seen by so many women and some of them might need some help and support.
My local paper even reported on the nomination on their website http://www.buteman.co.uk/news/health/cancer-support-group-from-bute-nominated-for-award-1-3260913
Since WCSUK started back in April 2011, the private chat group has grown to over 100 women who support each other through the tough times, and are welcoming and supportive to all new ladies who join the group.
However, WCSUK is more that just the private chat group. The main FB page https://www.facebook.com/WombCancerSupportUK is the focus of what we do.
From here we share information; raise awareness and network with other organisations.
There are now over 840 on the page and the numbers are growing all the time.
Hopefully the exposure WCSUK gains from this nomination means that we can reach even more women who are going through a womb cancer diagnosis.
With your help as well, we can say that "No one fights alone".
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