My Story - by SB

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

In October 2010 I went to my GP with heavy bleeding during my period only to be told again that "its what happens sometimes and you're just unlucky" so get on with it basically. At this point my partner said I should change my GP so I did and 2 weeks after changing had the worst bleeding and pain ever, so I went and the nurse practitioner couldn't understand why I hadn't been helped.
It was a case of taking spare clothes everywhere as bled for 20 plus days sometimes.

Anyway had a blood test done and she also tested for ovarian cancer and then advised me that she wanted to refer me to hospital whilst waiting for the results and in the meantime wanted me to had a scan as she felt it was too much for me to cope with and we had to get some answers.

The scan showed that the thickness of my womb was too thick and they thought endometriosis was the cause and this only added to the issues. Little did I know what was about to happen.
Got my appointment for November 14th 2010 and couldn't believe how quick it had arrived so went and they took a biopsy of the womb lining.
I went home and 2 weeks went by then my GP rang and said there was a problem with the bloods as they had shown my iron levels were low and that there were signs of ovarian cancer.

Told her was going back to the hospital and she forwarded results. 2 days after this I got a call from the hospital to come in as the biopsy showed Complex Atypical Hyperplasia which is a pre-cancerous condition.

So panic set in but had to keep it together and we decided not to tell the kids anything as didn't want to rock their world too.
Went back to hospital in January 2011 and it was decided that a total hysterectomy would be best as having the severest hyperplasia it could turn quickly.
Had operation on Feb 8th 2011 and it had turned to cancer and had a large fibroid too. Everything was sent away to be checked and in the meantime I went home but what happened in the next 12 days would change our lives forever.

Two days after getting home, my mum went into the same hospital with pneumonia and I had to go into organising mode as she had been looking after 2 elderly gents doing their shopping and bills for them and one of them was her best friend.

I was visiting her and she seemed to be doing ok then suddenly she started not knowing what was going on and to cut a long story short 12 days after my cancer op she passed away to metastatic lung cancer.
I was called back to hospital the day of mums funeral to be told that they found the cancer had gone 1/3 of the way through the lining and they decided that chemo wasn't needed but they were going to get them to check the biopsy again to be sure.

On March 14th I was told they had got it all.

16 months on, surgical menopause isn't easy and I have opted against HRT because of the risks but getting there slowly.

I got myself a job after 12 years and I am doing OK.



If you'd like to share your story or have any interesting comments to make about your journey with womb cancer then please contact us at wombcancersupport@hotmail.co.uk

My Story - by JS

This is another in our series of occasional blog posts by ladies from the Womb Cancer Support UK Facebook page who have come forward to tell their story of womb cancer.

Officially my journey began in September 2012 when I visited my GP because of very minimal post-menopausal spotting but with pelvic discomfort. I was 64 at the time and the previous year had embarked on a fitness programme with a personal trainer and a weight loss of one and a half stone by following weight watchers. There I was, more aerobically fit than I had ever been.

However I must have been stupid because for 18 months I had ignored occasional tiny streaks of blood that didn't stain my underwear and only occurred after a bowel movement though via vagina. Following what I thought was a minor back injury at the gym, I felt as if I was sitting on a nerve and following a more copious, though not large blood loss, I made that appointment. What's the point of being aerobically fit if you ignore warning symptoms!

My GP thought it would be nothing as I wasn't typical but had to fast track to me. After a hysterescopy done without pain relief I had to wait three weeks after which I was told "you have womb cancer" and with my first grandchild due at Christmas, my world fell apart.

I was referred to a second specialist who informed me I had a sarcoma which is very aggressive and he might not be able to operate. After a CT and MRI showing no spread I had keyhole surgery on 7 November by a very good and experienced surgeon. I had lymph nodes removed in my pelvic area. My fitness plan did pay off as I was a textbook case and went home the following day.

 I had my results in 10 days and was told it was not a sarcoma but an adenocarcinoma and it was staged at 1b but as a grade 3. I was told I could have brachytherapy but didn't have to. I just wish they would say you have to! Anyway though more terrified of this than the hysterectomy, I had this on 8 January 2013 and it wasn't anything like as bad as I imagined. My main problem with lying still for 24 hours was my back ached terribly and I don't like anything stronger than paracetamol.

I was well cared for but I wish they would get a grip on my white coat syndrome blood pressure problem, as it only takes a Valium and BP is back to normal but this was more of a worry to me than the operation and treatment as we had to go through the same procedures of them having a wobbly over my BP. If only your records followed you round and if it said that if my BP is up to give me Valium!

I have had one check post brachytherapy (I have had no apparent side effects) and then they lost me in the system but I have phoned my support nurse and I go for a gynaecology checkup on 6 July.

To say I am anxious is an understatement though I am well but have put on some of that weight I purposely lost. If I want cake now I tend to have it! I am exercising a lot so that is my excuse.

I have to say the support nurses are excellent and I just email any questions if I have them. But what a journey. I think one of the main problems is waiting for test results. If only they would fast track them. I do try to put it out of my mind but the anxiety is there underneath somewhere.

The good news is I got a little grandson on Christmas Eve and was so grateful to be able to enjoy him.

Beauty after Cancer

If you are a woman, then chances are that you are concerned about how you look and when you are going through cancer this can become a subject that causes a lot of problems, both physically and emotionally.

Cancer treatment, be it a hysterectomy, chemotherapy or radiotherapy affects our skin and not just on our face!

Recently we came across a lovely lady by the name of Jennifer Young, who developed a skincare range specifically for cancer patients.

I wrote a blog piece for her website that you can find here http://www.beautydespitecancer.co.uk/blog/2013/current-statistics-show-that-just-under-9000-women-each-year-in-uk-are-diagnosed-with-womb-cancer
and Jennifer has written one for us in return.

 

 

Defiant Beauty and Beauty Despite Cancer

 

I am often asked about our Beauty Brand created for cancer patients as they go through and recover from cancer and its treatment. Clients and those buying gifts for cancer patients are often keen to know about our history and motivation and whether or not there is a need for our products.

Here are the most often asked questions and the answers.

 

What is Defiant Beauty?

 

 Defiant Beauty is a skincare collection created specifically for cancer patients. It is important for me to point out that we are a luxury skincare brand for cancer patients. Our products are indulgent as well as effective and they are beautifully packaged and wrapped. We know that there are lots of prescription products available to cancer patients but Defiant Beauty is not a medicinal product. It is a Beauty Brand. Cancer patients told us that they have had enough prescriptions and they wanted a Beauty Brand that met their needs – we are it.

 

What is Beauty Despite Cancer?

 

www.BeautyDespiteCancer.co.uk  is the website that we have created as a place for information, support and positivity. It has survivor stories, charity features, ambassador interviews and evidence based skin care advice.

 

Why did you decide to create this brand?

 

I was approached by some of the staff and patients at our local NHS Cancer Centre and was asked if I had a skin care range that was suitable for cancer patients to use. I wanted to do more than just give them a sensitive skin range so I worked with the hospital, staff, patients and survivors to create a range that was both effective and met the ingredient guidelines set out by the medical team. When I was asked to help, I was very busy creating my Jennifer Young bespoke skincare range. I had enough to do without creating a second range but I was both moved and outraged by the plight of the women on the Chemo ward and I was determined to help.

 

How did you know enough to be able to create these products?

 

I didn’t do this on my own! I listened to cancer patients, cancer survivors and cancer care specialists. I took advice from lead nursing staff about the ingredients that we shouldn’t use, did lots of research about the best ingredients to use and asked patients to try and try our products. We asked others to try them and I listened when I was told about very special and very specific skin care needs.

I am a product formulator and nutritional therapist and I used the knowledge from these areas, combined with the very good advice and instruction I was getting from the hospital team and I made the Defiant Beauty Collection.

 

How long did it take to develop the products?

 

About 2 years.

 

Are your Jennifer Young Unique Products suitable for cancer patients?

 

As our unique products are truly bespoke and made to order according to the needs and preferences of the client, yes, they are. Not all of our products would be but when we are told that a client is going through treatment we exclude certain oils from the formulation.

What kinds of product ingredients should cancer patients avoid in skincare ranges?

 

Oils such as Borage, Avocado, Evening Primrose, Geranium, Clary Sage and Lemon and, in addition Aloe. This list isn’t exhaustive but gives a general idea. These ingredients are either oestrogens or hormone disruptors. Some cancers, particularly female cancers are fed by oestrogens, and are best avoided during treatment.

 

Why aren’t there any essential oils in your products?

 

Cancer Patients told us that their tolerance to smells changed as they underwent treatment. They may not be able to enjoy fragrance in the way that they used to. It is for this reason that most of our products are fragrance-free. We have added essential oils to our Smooth Skin Balm as some clients prefer a lightly fragranced product.

 

How do you create your fabulous smelling Jennifer Young Unique products and make sure that they are suitable for cancer patients?

 

Our consultants are given extensive and comprehensive training regarding the oils, both essential and vegetable that are contra-indicated during treatment. These oils are marked as contra-indicated for certain groups and we explain the contra-indications to clients at events. We are very discreet but cancer patients are very clear about the ingredients that can be used in their products. The essential oil choice and combination is up to the individual so they chose a scent which they think is fabulous. They oils that they choose also have the therapeutic benefit of their choice. Cancer patients often decide on relaxing and sleep promoting essential oils.

 

 Are any of your Jennifer Young consultants cancer survivors or patients?

 

Not yet. We are working alongside some cancer charities involved in ‘back to work’ projects. We can’t say too much about that yet, let’s just say that it won’t be long. We would love to hear from anyone wanting to become a Jennifer Young consultant and this includes those going through treatment and survivors. We are totally flexible and don’t pressure our consultants in anyway. We have consultants that run two events a week and some that have an event every 3 months. We support our consultants whatever their circumstances and preferences – each of our consultants is unique.

 

What charities do you work with?

 

Our Defiant Beauty products are sold on the chemo ward at University Hospital North Staffs (UHNS). We donate 10% of our online profits to the UHNS charity. We also work closely with My Name is Not Cancer (MNINC). This charity is all about preserving a sense of personal identity during treatment. We have links with many more cancer charities, far too many to mention here. You can read more about our philosophy of charity work on our website.

 

Why don’t you have creams and lotions in your Defiant Beauty Collection?

 

The Defiant Beauty Collection does not contain creams as creams and lotions contain oil and water. In order to turn oil and water into a cream or lotion, preservatives and emulsifying agents must be added. Creams and lotions cannot be made without using a large number of ingredients, increasing the number of substances that the patient is exposed to. As cancer patients often have sore, sensitive, dry, itchy and damaged skin we have decided to keep the number of ingredients in our products to a minimum – this means no creams or lotions. Defiant Beauty does not contain any paraffin or petroleum jelly. You will find only natural vegetable oils in the Defiant Beauty Range.

You can find Jennifer's website here http://www.beautydespitecancer.co.uk/

When will we return to "normal"?

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!!

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!"

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.
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If you would like to share your story and help raise awareness then please contact us at wombcancersupportuk@hotmail.co.uk

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