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Support when you need it most!

30/8/2014

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Being diagnosed with cancer can turn your world upside down and it can be a very difficult time. If we are lucky, most of us will have a close knit supportive family around us when we get a cancer diagnosis. That support may extend beyond immediate family to a network of close friends who are there for us through thick and thin.

Sometimes however, even though we have that support, we can sometimes feel that we don’t want to burden those closest to us with our fears about our diagnosis and how we really feel when going through the treatment. We may want to shield them from the harsh realities of having cancer and don’t want them to see us at our lowest and most vulnerable.

This is where joining a cancer support group can really help. It allows us to open up about how we feel without seeing those closet to us get upset.

Some people might feel that a support group is not for them and might feel uncomfortable talking to strangers about their diagnosis and how they feel but I would urge anyone who feels like this to overcome those fears, because once you join a support group, you won’t be strangers for long.

There is something very cathartic about being able to be completely open with someone who doesn’t know you or your background but who has an understanding of what you are going through.

Support groups come in many shapes and sizes. You might feel more comfortable in a support group specific to your cancer; however if you have a rarer type of cancer then this might prove difficult especially if you live in a more rural area. A general cancer support group is an alternative and is probably the most common type of support group that most cancer patients join.

However, in today’s social media world a new type of support group has appeared – online support groups, often cancer specific. So no matter where you live,  you can “talk” to someone with the same cancer as you, at any time of the day or night. It might be that the some of the people you talk to live in another country or even across the other side of the world.

These types of support group often prove a lifeline to patients/survivors who either have a rarer cancer or feel they have little or no support around them in the “real” world. Many cancer patients go through a diagnosis on their own, either because they have no family or close friends to support them.

From my own experience of running Womb Cancer Support UK, I can say that the ladies I have met over the past 3½ years are some of the most wonderful people I have ever met. Despite going through their own journeys with cancer, they are always there to support each other.

You might not think a support group is for you, but I would urge you to give it a try. You never know when you might need someone to talk to who really understands and you may just make a few new friends along the way.

xx Kaz xx

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A good night's sleep!

20/8/2014

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If you’ve had chemotherapy or radiotherapy for cancer then you will know exactly what I am talking about when I say the word “fatigue”!

To most people it means being tired and maybe a bit overworked or run down – nothing that a good night’s sleep won’t cure, right? Wrong! If you’ve gone through treatment then you know what fatigue really is! That “walking through treacle” feeling  of not being able to even find the energy to get dressed some days.

Most of the info about cancer treatment says that the feeling slowly wears off after about 6 months post treatment but for some of the unlucky ones, myself included, it can last for several years after your treatment has ended, especially of you have been left with other long term side effects. Most cancer patients seem to say that the fatigue is the most disruptive side effect of having cancer and I would agree. The one thing you want to do after finishing your treatment is try and get back some sense of normality into your life but if you are constantly battling being tired then it can really get you down, and that in itself can create even more tiredness so it becomes a vicious circle that is extremely hard to break.

Fatigue can also be very frustrating because it’s not as if you are being lazy and not wanting to do anything; very often we desperately want to go out with our family or go to a party it’s just that we know that we can’t physically manage it. All I have wanted to do since I finished my treatment is to go camping again but I know that it’s just not feasible. 

Sadly, in the past most GP’s have ignored this side effect and many patients have felt alone and isolated, however things are beginning to change. It’s now being recognised that cancer patients often need long term aftercare many months or even years after their treatment has ended so they can continue to live a full and active life.

There are ways of managing and treating fatigue but you need to let your Doctor know how you feel. They can’t help you if they don’t know how you feel. Trying to deal with fatigue is nothing to be ashamed of;  help is there.

xx Kaz xx

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My Story - by C.J

13/8/2014

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Another story from one of our peach sisters!

"I remember the date well, October 26th 2012, the day I was diagnosed with Endometrial Cancer. To say it was a shock is an understatement. At 25, cancer was last thing I expected to hear when I was called back for the results of the hysteroscopy I'd had 4 days previous. To be honest cancer hadn't even crossed my mind. Looking back, being called to come in for my results at 8pm on a Friday evening should have been a giveaway that something serious was going on.
I hadn't been 'ill' as such, or in any pain leading up to my diagnosis but for many years I'd experienced irregular periods, which I'd ignored. Only now do I realise the importance of getting these things checked out. Things finally came to a head when in summer 2012 I'd experienced a period that lasted around 17 days that ended with extremely heavy and terrifying bleeding. My GP referred me for an ultrasound and then a few weeks later for a hysteroscopy which lead to my diagnosis. During the appointment in which I received my diagnosis I was told that the cancer was most likely contained within the womb and I'd need to have a hysterectomy. 


Nothing can prepare you for hearing the words 'you've got cancer'. I remember just bursting into tears. Everything else was a blur, I had completely switched off from what the consultant was saying. So many questions running through my mind. Has it spread? Where has it spread? Am I going to die? How long have I got? Yet I couldn't speak. I just sat there, completely stunned. Luckily my mum was with me to take in all the information, because even now I don't remember much about that appointment. I felt numb, like it was happening to someone else. It didn't feel real. 
It was only when it came to telling people that I realised it was real, it was really happening. Saying it out loud seemed to confirm it. My parents dealt with telling family members and I only told a few close friends. Every time I thought, wrote, or said the words 'I've got cancer' I just broke down, so I'm glad I didn't have many people to tell. 


MRI scans, X-ray and biopsy revealed the cancer to most likely be stage 1a, grade 2 but they'd know more after the hysterectomy and further testing. I met with my surgeon and specialist nurse a week before surgery to discuss the surgery, risks and options. I was told that there was an option to have my eggs frozen but only if I was married or in a relationship, I was neither married or in a relationship so that option wasn't available to me. I remember telling the surgeon that I didn't care about any of that, I just wanted him to get the cancer out of me. The thought that I had rogue cells inside me that had turned on my body, trying to kill me, freaked me out a little. I hadn't had time to think about whether I wanted kids or how having a hysterectomy would affect me. I just wanted the cancer gone.
So on the morning of Nov 14th  2012 I was waiting on the ward to be taken down to surgery and the realisation of what was about to happen hit me. Cue another break down! I am getting quite good at these now! I was still in floods of tears as I was lead to theatre. The next thing I remember was waking up in recovery 5 hours later. The operation went well, there was no visible sign of spread and they were 99% sure they'd got it all. Back on the ward I don't remember being in much pain. I do however remember coughing and sneezing being absolutely terrifying... with every cough I felt like I was going to burst open! I was assured by a nurse that with 65 staples and internal stitching, I wasn't going to 'come undone'! I was on the ward for 5 days before being allowed home. Recovery was slow, even short walks proved difficult.
A few weeks later I received a call from my specialist nurse to inform me that the grade of the cancer had changed from 2 to 3. This meant that it was particularly aggressive and as a precaution it was recommended that I have Chemotherapy and Brachytherapy (internal radiotherapy) to mop up any cells that may have been left behind. I began chemo on Jan 14th 2013, my 26th birthday. I was to have 6 rounds, 1 every 3 weeks.


Chemo day was a long day, 8 hours hooked up to various drugs and poisons. The side effects became very predictable to the point that I knew what day certain side effects would occur. The hardest side effect to deal with, even more than the horrendous leg and neck pain I'd get at around 3 days after each cycle was the hair loss. It seems silly that after everything, not having hair affected me the most. To this day I do not know what I looked like with a bald head! I kept it covered 24/7 and refused to look at it. Going out became extremely difficult, I'd only leave the house for hospital appointments. As soon as chemo finished my hair began to grow back almost instantly, much to my relief. A year on and I have around 4-5 inches of very thick and wavy hair!  
Then it was time for Brachytherapy, three 5 minute sessions over a week. The brachytherapy itself was a piece of cake, if not a little embarrassing. But the permanent side affects are a little harder to deal with, and I worry that it might make future relationships difficult but hey, I'm alive, so that is just another problem I'll have to deal with when I get there. 
It's been almost a year since I finished treatment and I'm doing ok physically, besides dealing with menopause symptoms, brought on by the hysterectomy. I have check ups every 3 months and I'm told there is no sign of the cancer returning. Which is great. Dealing with the emotional side is proving a little more difficult though. I was at my worst when treatment finished. I had nothing to keep me busy or to keep my mind occupied. This was when I began to process everything that had happened over the last 8 months. Emotionally I was a mess. The constant fear that my cancer would return was consuming my every thought. Every ache and pain no matter how small had me convinced that it had indeed returned. I felt like it was driving me insane. And then there's the fact the I'll never have kids. When I wasn't thinking about cancer I was thinking about this. The fact that I'd never have a child of my own, I'd never know what it feels like to have a life growing inside me, I'd never be pregnant. For months I cried myself to sleep most nights. Simple things would set me off, seeing a pregnant woman, a baby pic on Facebook. It was like I was mourning the loss of something I never had. It's a very strange feeling, but a feeling that I've grown used to.
I spoke to my GP and was prescribed a low dose anti depressant that also helps me sleep. It seems to be doing the trick for now. These days I'm doing much better, I worry a lot less and randomly bursting into tears seems to be less frequent these days too! Right now I feel like I'm gaining back some control in my life and while I still have some bad days I'm feeling more positive than I have in a long time. I have realised that getting back to 'normal' just isn't possible, I'll never be the person I was before my diagnosis and I am slowly coming to terms with that. Onwards and upwards as they say!"

If you are wiling to share your story then please email me at [email protected]

xx Kaz xx

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Do Not Be Afraid of Meditation by Clare Groves

6/8/2014

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Meditation has existed for thousands of years.  It is often thought of as religious and indeed it is practised by Buddhists all over the world but you do not have to follow any religion to try it.   Suffering from an illness is a lot to deal with both mentally and physically.  The mental side of it is often forgotten and when the physical pain heals people are often left wondering why they don’t feel much better.  We are all cursed with minds that never know when to quit.  I am sure most of you who are reading this have had the scenario that when you get into bed and your body is ready to sleep your mind says ‘woo hoo I’m awake let’s go over everything’.   You then proceed to dissect every detail of every problem resulting in little or no sleep making you ill equipped to face what the day is going to bring.  This is when you need to attempt to take back control.  If you are human like the rest of us you worry about everything! 

My interest in meditation began when I studied Reiki but you do not need to have any previous study or meditation experience to get started.  If you have been diagnosed with cancer and are undergoing/recovering from treatment it can be a scary time.  Everyone worries about different things.  Am I going to get better? How will I manage during treatment? Am I going to die?  These and many more thoughts go through people’s heads when they first hear that word, cancer.  The last thing most people probably think about is meditation!  If you think about it for a few seconds surely you will see that being calmer and having a positive attitude about your ongoing treatment can only benefit your health and wellbeing! 

Deep meditation takes a lot of practice and dedication but you can start small.  Finding somewhere quiet can be tricky but you need peace so bribe the family to leave you alone if thats what it takes.  I use guided meditation as it gives you something to focus on.  Guided meditation involves listening to a voice and imagining the scenarios you are guided through.  There are many online you can use to start that are free to download.  As a newcomer to meditation they are much easier as trying to focus at the start is difficult and you are more likely to give up.  Even if it takes several listens for a guided meditation to get through it will relax you each time so that has to be a benefit to everyone!  You will feel calmer and in time be able to deal with the thoughts as they come into your head and discard them again just as quickly.  

Do not expect an instant fix! meditation does not cure but if you are more relaxed and less stressed about your illness/treatment you will be able to deal with whatever happens.  It costs very little and that is only if you decide to buy a CD or perhaps go to a meditation group.  Groups can be very enjoyable not only for the social aspect but also you can chat to others and get useful tips.  I do have to say that group meditation is not for everyone.  You will be asked if you wish to share your thoughts.  This is not compulsory but some people feel uncomfortable at the thought of sharing private feelings.  There are lots of resources online, my own website has loads of information
www.themeditationstop.com  Do not be afraid to try something different, it cannot hurt you and you may just find it renews your spirit and gives you added strength to face the future.

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    Blog posts about life with womb cancer; by me and other womb cancer fighters and survivors. Plus occasional guest blog posts on relevant subjects.

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