“Accessing support from Debs (Creative Living Centre, Living with and Beyond Cancer project) and James has been a positive experience and is helping me to come to terms with my illness and possible re occurrence.
It’s been helpful speaking to people who are supportive and knowledgeable. It’s useful to speak to someone other than family and friends as it allows me time to be more reflective.”
I was diagnosed with advanced stage ovarian cancer after suffering with severe abdominal bloating. I was fitted with a drain to remove fluid from my abdomen and underwent two surgeries. Having also had chemotherapy, I am keen to let others know that treatment doesn’t have to be as frightening as it can be portrayed by the media.
"For many women with ovarian cancer, the prospect of treatment can be almost as frightening as the diagnosis itself. Louise shares her experience of ovarian cancer and explains why chemotherapy isn’t a scary as you think..."
I want more people to know about chemo and the symptoms of ovarian cancer. There’s a lot of fear around chemotherapy, in particular. Yes, it can be horrible, but it’s not as frightening as it’s made out on TV. There are so many misconceptions about the treatment - that’s something I want to help break down.
I’d heard of ovarian cancer - but I didn’t know the symptoms. The first time I really noticed something being wrong was when my tummy started feeling uncomfortable. My abdomen was very bloated and the swelling never seemed to go away. The idea that I might have ovarian cancer was somewhere in the back of my mind, but I didn’t want to think too much about it.
I decided to go and see my GP anyway - even though I hoped I’d come away with antibiotics for what I thought was IBS. My GP ended up doing a CA125 blood test, and one week later I was referred to a specialist at the local hospital. After a few more tests and an ultrasound - the gynaecologist told me that it could be ovarian cancer.
Doctors were keen to put an ascites drain in to help ease my abdominal swelling. After a bad reaction with the first drain (they thought I had sepsis), I was sent to a local hospice where I had around 9 litres of fluid removed. I was also sent for surgery, for a hysterectomy. After the operation, the doctors told me that this hadn’t been successful, and they hadn’t been able to remove any of the cancer because it was more widely spread than they initially thought. I then developed sepsis after this but fortunately gradually improved.
After the unsuccessful surgery I started chemotherapy. After three sessions of chemo I had a scan and the consultant informed me that signs of cancer had been reduced and they would reattempt the hysterectomy. I had responded well to the chemotherapy treatment.
The second hysterectomy was successful and as soon as I had recovered from the surgery I started chemotherapy. Luckily, I responded well. My recovery has been a long journey so far and I’m gradually getting fitter, I think walking has really helped me feel better.
I think there are a lot of misconceptions around chemotherapy. I’ve had a lot of friends asking questions and it’s not as frightening if you know the facts. I want more people to know about chemotherapy and about ovarian cancer.
Now my message to other women would be ‘if you’re worried, go to your doctor!’ So many people don’t know anything about cancer – they don’t know the symptoms or the tests to ask for. I know it’s frightening, but if people knew more about it they might be less scared. People need to know to act fast. If you act quickly, you can hopefully get better - you can get treatment.
Ovarian cancer symptoms cannot be detected through a smear test.
The symptoms include bloating that does not go away, loss of appetite, a need to urinate frequently and tiredness so often this cancer is not recognised till it’s at an advanced stage.
So please request a blood test from your GP if you have these symptoms.
Get support from online forums, support groups as well as friends and family.
Access support from specialist support agencies as a cancer diagnosis is often unexpected and traumatic.
Try and stay as positive as possible: try to do exercise, eat healthily and plan enjoyable activities for when you feel well.
Look after yourself and rest when you feel tired.
Having had a different diagnosis since the age of 16, a label being branded has been an ordeal. To the point of waiting for a new one, it mattered to me because how can I have insight or knowledge about myself when a diagnosis changes and my medication with it.
Eventually I was diagnosed with Emotionally Unstable Personality Disorder, PTSD, Depression and Psychosis. Sounds like a lot of disorders but, from my childhood traumas of abuse, rape along with violent partners my outlook on life changed and I found it hard to trust people. Even everyday tasks such as getting out of bed, fighting voices in my head and trying to have normal healthy relationships with friends seemed exhausting. People see the vulnerabilities in me and can abuse my trust. Yet I have no label on my forehead for this. It is apparent in my actions, maybe in what I say or how I am. I can have mood swings, ups and down but Creative Living Centre has helped me and been a safe place to go. Sometimes I go to talk through what is going on, sometimes for a brew or art class.
I have started writing again after stopping for a while. Writing poetry about my thoughts and feelings really helps. Having the encouragement from the staff at CLC means I don’t feel ashamed, excluded from society as a person. After all the staff at CLC have been through their own health issues or know someone in their family that has. For me this helps to have the understanding, empathy for a person who has gone through their own battles for sanity, depression and more.
I can honestly say without Creative Living Centre I don’t know how I would have coped in life. There is still no magic wand but things can be managed with the right support. I now have a better outlook on life itself.
Tell me a little about yourself & what has brought you to the centre?
I was diagnosed again with skin cancer earlier this year as well as other health problems. I felt everything happened all at once. The speed at which the skin cancer growth grew gave me severe anxiety. I have been retired for 12 years and I lost my partner a few years after retiring. I live alone now.
What have you achieved since you became member of CLC?
I have achieved quite a bit. I am able to discuss my problems now. I am not embarrassed anymore and I think opening up helps others to open up as well. I feel so much better now and managing my anxieties so much better. I can put my anxiety in perspective now and I am looking forward to the future. Friends have also said how well I am looking.
What would you recommend to others?
I would say to come and find out for themselves and experience the centre. There is something for everyone. It's very welcoming and the people are friendly.
What has helped since becoming a member?
The 1:1 support sessions were really important and what helped me the most. Everything else has been very helpful as well. Having someone to listen to me really helped. I haven't slept well for 10 years but the acupuncture gives me a fantastic nights sleep. The CLC empowers you to live your life as you should.
One of our amazing members (Alex) has kindly shared his experience of living with Asperger Syndrome, please take a read. Do you have any similar experiences, or would like to share one of your own? Please contact us!
"There was a time when I was only fourteen, I was given a label for a condition that not a lot of people knew much about at the time. Twenty two years have passed since then. I have Asperger Syndrome.
Hi, My name is Alex Rushworth and I am on the Autistic Spectrum. this doesn't mean I am on a computer game in the early 80's playing Pacman, It's a different kind of spectrum. Autism can affect a number of parts of your life including, how you behave, speak, feel and your thought processes.
I can find it difficult to form relationships. I can find it difficult to be affectionate to others and receive affection from them. This can affect me forming long lasting relationships, especially if it is with another person with autism.
Although what I have said above is a negative point of view regarding autism and could be viewed as a curse, I have a great deal of positive attributes when I believe came because of my condition, such as a terrific ability to concentrate on certain tasks, such as painting, jigsaw puzzles and writing. I hope you agree with the last one, as I have put a great deal of effort and thought into writing for you today.
When you have autism you feel as though sometimes you are put on the spot in social situations. You don't know what to say to others especially when talking about relationships.
When you have autism, you feel as though you don't want to let people down. You feel as though you have to do what you are told. This makes me feel vulnerable to other people making fun of me. my mind goes at one hundred miles an hour. I could have an idea about something during the night and if I don't write it down, i could of forgotten it the next morning. this is the reason why I have become such a prolific writer and why I have a season ticket at the local stationary shop.
When I concentrate doing one thing I will get distracted causing me to concentrate on the next task. This will sometimes stop me from completing the first task I started. I think people with autism can find it difficult to gain employment. This can be because people without an understanding of autism can belittle those with autism. People with autism such as myself do want a job but find certain work environments daunting. I think if more people were educated regarding autism, then there would be more opportunities for autistic people in employment.
There are people in this world who see a person for themselves rather than looking and judging a person because of this label called autism. I feel people could benefit more from life if only they knew about autism and saw the person behind the diagnosis. "