When September Calls!!

Well, it's getting around to that time of year again.......... no, I don't mean Christmas!!!

September will soon be here and that means Womb Cancer Awareness month is nearly upon us again.

This September will be our third awareness month and we've already started planning things!

As usual we will be turning Facebook peach again. This is where we get as many people as possible to join us and change their profile pic, preferably on a daily basis to something peach coloured. Its just a bit of fun but it often gets people asking "WHY" and then we can tell them!

It's all about raising awareness of womb cancer!

I am also holding another online auction of handmade goodies to raise funds for the research project that we are involved with https://www.facebook.com/notes/womb-cancer-support-uk/about-dr-elliss-research/202283526516431

The auction will be on Facebook and can be found here https://www.facebook.com/WombCancerResearch 

What else have we got planned? Well, you might have to wait until a bit nearer the time to find out as there are still a few things to sort out.

But if you've got any idea's on how to raise awareness or want to get involved and do something in your own area then please get in touch with us at wombcancersupportuk@hotmail.co.uk

 The more awareness we can raise about womb cancer the better. We need to reach out to women of all ages, as we know only to well that womb cancer is not just something that post menopausal women get.

Please get involved; help spread the word and lets go peach for womb cancer awareness.

Let down by Race for Life! - by D.V

One of our peach sisters did the CRUK Race for Life today - here is her story of the day!

I was diagnosed with womb cancer in January 2012 having had a terrible few months with symptoms. At the time of my diagnosis, I was told that I was in the minority in that I was under the age of 60 and fit; my hobby is running and I ran 5 marathons in 2011, the last one being just before my symptoms started.
I have since found out that I am not really in the minority. I have, through WCSUK, been in contact with women much younger than I.

Last year, shortly after my radiotherapy finished, I took part in a Race for Life where a cancer survivor stood up on the stage and spoke about her experience of breast cancer. I said to my friends that I would want to do that this year. So a few months ago I contacted Cancer Research UK Race for Life and asked about speaking at their Hyde Park event. They agreed and it was arranged for me to speak before both the 10k and 5k races.

So this morning, I arrived nice and early (8am) and found I was due to speak at 8.08am but they seemed to be a bit disorganised; the sound checks hadn't been run at that point. One of the organisers came to me a while later and explained that they were running behind time and would like to concentrate my efforts before the 5k race after I had run the 10k. Hmmmmmmmm!
There was a lot of nothing going on at the time but I suppose these things happen eh? I did point out that, because of the heat, I would probably take longer than I thought originally and asked to be scheduled as late as possible; I can't run in the heat at all and really suffer. I was told that would be ok.

Off I went and I struggled round the race; it felt like I was melting at times! As soon as I finished, I headed back to the stage where I was told, again, that they were running behind schedule. I was told they would like me to speak at the start of the race and that I would be taken down there just beforehand. I was starting to feel a bit like the poor relative by this time.

A little while later, one of the organisers came and got me and I went behind the barrier and then she instantly disappeared! I waited for a good 15 minutes and she didn't return. I was getting slightly hacked off by this time so I decided to just walk away.

I am quite hurt that this happened to me. I have been looking forward to today and getting the message out about womb cancer. This was a chance to reach around 15,000 women at the same time across the two races and I feel very let down.

There were a couple of key messages I wanted to get across.
There are several conditions that make a woman pre-disposed to womb cancer (being overweight, being childless, being diabetic, being unfit and being over 60). I was none of these. So I wanted to get the message across that this is a cancer that can strike ANYONE at ANY time of their lives.

From experience, some women are under the impression that their cervical smear would detect womb cancer but this is not the case. The only time it would detect it would be if it had already spread to the cervix.

I also wanted to point out that womb cancer is on the rise and that obesity could be a factor going forward as the extra fat in our bodies causes oestrogen-like hormones to be produced and womb cancer is mainly hormone receptive.

Now, I consider those messages are vital for the women in this country. There is no awareness campaign going on and there are no plans for any in the near future so ANYTHING that can be done to bring this disease to the forefront should be done.

Womb cancer is considered one of the rarer cancers so I am wondering if the Race for Life organisers just didn't think it was worth the airtime. How does that make me feel? It makes me feel that possibly my cancer has been discounted. If you think about it, the main colour of anything Race for Life is pink. That is the colour associated with breast cancer. Do they see that as a more worthy cancer to promote? I certainly hope not.

All in all, I have been left with a nasty taste in my mouth. My cancer was just as important as any other cancer. At the end of the day, cancer is cancer and to get that diagnosis is devastating. It denotes the end of life as you know it and a new life going forward. One that has you wondering if 'it' is going to return. One where you possibly have to life with side effects of treatment, as I and many other of my peach sisters have.

And I now find myself wondering if I will bother with Race for Life again. After all, they couldn't be bothered about me could they?

It's a long and weary road we travel!!

12th July 2010 was the day I finished my cancer treatment. So I am now 3 years cancer free - or am I?
How do I know I'm cancer free?

Having cancer isn't like having a headache - you know when a headache has gone! But cancer??
I've not actually had any routine follow ups since my treatment ended so I guess that kind of adds to the apprehension a little.

My Oncologist was that convinced that he'd done his job that he obviously felt there was no need to keep an eye on me with regular check ups.

At first, the fact that I'd been left without the safety net of check ups was very disconcerting, but I've gradually got over that feeling and no longer think about it.
Until recently, that is!

You see, its my 50th Birthday next week! And I guess, like everyone else that has reached that milestone, you start to reflect on your life.
There were times, especially when I first got the diagnosis, and when I was going through chemo that I thought I'd never make the next birthday, let alone my 50th!!

I can't actually think of myself as being 3 years cancer free - I am a 3 year survivor!

I guess that's something worth celebrating!!!!

Who do you tell........and when?

Getting a cancer diagnosis comes as a shock to anyone and it can sometime take some time to fully come to grips with the news.

Most people have close family and friends and once you yourself have adjusted to the news then comes the decision of who to tell and often more importantly, when!

I told no one, other than my husband about my cancer diagnosis until after my hysterectomy. My Consultant told me he was 99.9% sure he could remove it all during surgery so I figured there was no need to tell anyone about the cancer if it could be removed. However, when the pathology results came back and it showed that there were cancer cells still present, then I had to decide who to tell.

My parents and siblings came top of the list. It was hard to tell my parents as they are both elderly and come from an era when a cancer diagnosis often meant death so it was hard trying to convince them that I would be ok. No parent wants to think that their child is going to die before they do.

I decided to be totally open about my diagnosis with friends. I live on a small island and felt it was better to be open about my cancer rather than have the rumours spreading. As it turned out I was the only one on the island with womb cancer at the time - sadly I don't think that's the case anymore.

Some cancer patients find it hard to decide when or even if, to tell their loved ones about their diagnosis. Our lives become thrown into chaos by the news and we feel as though we've lost control. Sometimes hanging onto something we can control, like who we tell, saves us from going under.

People have different reasons for not telling; maybe they don't want people to worry about them; maybe they fear loosing their job; maybe they have a son or daughter just starting Uni; or a grandchild on the way. There are so many reasons.

Sometimes patients don't want to tell anyone because they simply don't believe it themselves; they are often struggling with getting their head around the news of the diagnosis. A good Consultant should be aware of the possibility of this and ask their patients how they will explain their cancer to others, to make sure they understand the situation fully.

Keeping such a diagnosis quiet, a secret from those who love and care for us, is something that need not happen because its precisely at that time of diagnosis that we need the support of those we love.

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/