Welcome To My World, Won't You Come On In....

I hope you find my blog interesting, helpful and comforting. Whether you are going through cancer treatment yourself, or know someone close to you who is fighting, I hope it provides a little insight into my journey that may help you along your way.

I have recently written a book about my experience of being diagnosed with cancer at just 16. Eleven years on, "Kiss From A Rose" reflects on the sadness, fear and frustration I felt after being diagnosed, and my fight throughout the subsequent treatment. Since that awful day in the summer of 2001 I have been diagnosed a further six times. The book describes four of these hurdles, but I began this blog as I faced my biggest battle yet having just been diagnosed for the sixth time.

Read how I overcame a death sentence, and after receiving a prognosis of just one year at the begining of 2011, am now looking foward to a long, happy and healthy(ish) life!

https://twitter.com/Natasha_Vince

http://www.kissfromarose.co.uk/

Buy my novel Kiss From A Rose here!

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Saturday, 3 December 2011

And Still, They Will Not Listen

Over the last couple of weeks since my most recent scan results, I have been trying hard to tell everyone I know about the benefits of eating right, and exercising more. If not to assist in the treatment of an existing medical issue, but to at least ensure you stay as fit and healthy as possible, to look after your body as much as you can.

I have also visited a couple of local schools, one primary, one secondary - my own Secondary School Townley Grammar, in fact. I went to raise awareness about health, fitness and having the confidence to know your own mind and body and so push for medical attention when you think you need it.

I started at the local primary school where the teachers organised a fund raising event for the British Liver Trust - a charity I have been working hard to promote awareness of and raise money for. They decided to hold a 'Breakfast Club' where the children and their parents could pay a few pounds for a couple of slices of toast and a hot drink or juice and socialise before school started. I thought it was a fantastic idea, and was thrilled when the school asked me to come along and talk a little about the Trust as well as my story. Everyone seemed to really enjoy themselves, especially the little ones, and I was shocked to find out that people were queueing for over twenty minutes just to buy a cup of tea and contribute to the fund! It was extremely heart warming to see how people care and will strive to help when given the chance. When I stood up in front of everyone to explain a little more about the Trust and about my experiences everyone fell silent, and I felt really proud to be a voice for such an important charity. I spoke about how just a year ago, I was told there was nothing the hospital could do for me, and warned me not to expect to last too long past the end of this year, yet with perseverance, optimism and a little initiative I fought it, I'm healthier than I have been in a long time, I'm alive.

When I stepped down I was approached by many mums, some just wanted to say hello, but others had their own stories about fighting to be heard, and fighting to be treated. Not everyone I spoke to was talking about cancer, and as I listened, I realised that perhaps it isn't just cancer that gets over looked so much. Those feelings of frustration at out National Health Service started bubbling again, why do some doctors have such issues listening to their patients?

That morning the pupils raised over one thousand pounds for The British Liver Trust, what an amazing achievement in under two hours.




But I wanted to reach out to the age group I was when I started my treatment, so I went back to school. The Head Master of Townley Grammar School allowed me to hold a series of talks to different age groups about what it is like to be diagnosed with such a devastating, and isolating disease at such a vulnerable age, so far I have spoken to Years 10 and 11 as well as the Sixth Form, and in a couple of weeks I will return to talk to Years 8 and 9.

I explained that I wasn't there to scare anyone, but with 1 in 3 people affected by cancer now, I wanted to give them a little information about what it is like to be diagnosed and have to go through chemotherapy, as well as how to support someone they might know going through similar treatment. The students were so welcoming, and it was lovely to see some of the teachers that taught me many years ago. But I was most struck with the response I got following each talk. I invited people to come to me afterwards and ask any questions they might have - rather than standing up in front of all of their friends and I thought perhaps one or two might have approached me, but last week I was talking to students for over forty five minutes following my speech, as they asked me for more information about the chemo, and how to support family members fighting cancer.

The most frustrating thing for me however was when a couple of students approached me about complaints they had made to their GPs over a long period of time, regarding pains they were experiencing. Both had been refused scans, and both were taking the pain killers I had been sent away with so many times. I ask the questions again, why aren't these doctors listening to their patients?

But there was worse to come. One young lady, who has given me permission to talk about her story as she too wants to raise the point that teens are too often overlooked my GPs, told me about her cousin. A boy of 13, he complained for many months of a pain in his knee, but was continuously told by his doctor not to worry about it, it was growing pains, it was in his head - the usual. One day at school the pain was so bad, as he put his foot down on the ground while walking down some steps, he fell and broke his leg. Of course, he was taken to hospital where they pinned his leg together, put on a plaster cast and was told to rest it while it healed. The problem was, it wasn't healing, and it was only when he continued complaining about the pain that the hospital finally carried out a scan to find out why his leg was taking so long to mend.

Then they found his tumour.

How did they miss that when they were pinning his leg back together? But by now it was too late, the boy's cancer had spread up the bone in his leg, and it had to be amputated immediately and followed up by an intensive course of chemotherapy. His mum thought he was getting better, until the hopital realised it had spread to his pelvis and it wasn't responding to the treatment. He died two months ago at home with his family. The hospital told his mum if the tumour had have been found while his leg was pinned, his chance of survival would have been much higher. Is that fair? To tell a grieving mother that if a medical expert had listened to her son when he was complaining that he could still be here today? How many times does it need to be said that we know our own bodies? So why didn't that doctor listen to his patient?

But there is hope. After talking to the Sixth Form I was approached by two young ladies hoping to be accepted into medical school next year. They asked me how to be good doctors, they asked me how to avoid making the same mistakes my GP and so many others had made. I thought how refreshing it was that they had asked those questions, and it demonstrated to me that already they had the right approach to patient care, they are an encouraging example of our next generation of doctos. I told them to have an open mind, if someone comes to them three, four, five times with the same complaint, to look deeper, to acknowledge that something might be very wrong. I told them to remember my story, to remember that noone knows their body better than the person themselves, I told them to listen to their patients.

9 comments:

  1. bloody brilliant (Celine)

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  2. I have just seen your remarkable testimony on Sky News and felt moved to thank you for it. It will help and encourage many. My wife has recently been diagnosed with breast cancer so is just starting her health challenge. Best wishes and good health to you! Brian

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  3. Hi Brian, thanks so much for your message. It is a lovely thought that by talking about my story, others might be comforted, or at least know what they're in for when it comes to chemo and other cancer treatments. I would say make sure your wife takes as much vitamin c as possible - not just orange juice, but supplements. It has no side effects (apart from a dodgy tummy sometimes), but is the most natural form of chemotherapy - I don't know why they don't tell people this in hospitals. Much luck and love to you and your wife, it sounds like she has a great support in you - that makes the fight ten times easier! xx

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  4. I was one of the students in the audience for your speech to year 10 and I have to say, you are one of the most inspirational people I have ever come across. I couldn't believe someone could have so much motivation and belief in themselves, while having to struggle with such a disease.You are an amazing person and you deserve so much. I am currently struggling with clinical depression and although it was uplifting to learn someone else's success story for a much more serious illness, it made me realise just how unmotivated I am to get better. I was wondering if you had any advice for me. I would really appreciate it. Thankyou again for coming to speak to us.

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  5. Hi Hun, thanks for your message, and you're very welcome, you were a lovely group to talk to!
    I know depression can be a very isolating condition. Once I had finished my first lot of chemo at 16 and was expected to go back to school as normal, I really struggled. Although medically I was fine, and completely clear of cancer, I had a different battle going on in my head now. I still looked very ill, I had no hair, I was still weak and couldn't walk properly from the effects of the chemo, I didn't look like myself. Even when my hair started to grow back, I felt obviously, it wasn't growing quick enough, it was very fine and curly, whereas before it was straight and thick, and I put on a lot of weight because I was ale to eat more after all the medication. So I absolutely hated the way I looked, and because my friends had really let me down while I was in hospital, I didn't want to go to school, because I didn't particualrly want to talk to anyone - I knew they weren't genuine friends. I was quickly sinking into depression. Most mornings I refused to get out of bed, and it got so bad that after a while, the previous head teacher Mrs Hutchinson would come round for me in the mornings to make sure I went to school - Very embraasing!! But I'm glad she did, because in the end, it was my exams and Uni and a career that gave me a focus. It was the thought of getting out of school and making better frinds at Uni or the work place that got me out of bed in the mornings. Perhaps, having a focus might work for you. It might not be the same as mine, but if you find something you like doing, or would like to do, and strive to achieve it - no matter what other people say, when you reach your goal, there's no other feeling in the world like it, I promise you that. People used to say all the time to me that I wouldn't get my A-Levels, and certainly wouldn't have the career in News I spoke about all the time. But I did, you have to believe in yourself. You have to make things happen for yourself, because no one else will! People will let you down, and behave in a way you don't expect, I learnt that the hard way when my Dad left us when I was younger, but you can always rely on yourself! So you must start liking yourself, and make a life for yourself that you like.
    Make sure you're taking lots of vitamins, eating right and execersing lots - exercise really lifts your mood - I started Belly Dancing after my chemo - it was fun and gave me something to look forward to each week, and got me really fit!! Try taking Vitmains C, B and E - especially Niacin, it is very good for lifting the mood, although you may experience a 'Niacin Flush' which makes you very hot for a few minutes. It's not dangerous - just unpleasant, but if you talk to a chemist, there are other vitamins you can take to avoid having the reaction. Good luck hun, I know it's difficult, and you can't just snap yourself out of it. I hope this information helps a little, I'm back at Townley Grammar giving another speech tomorrow (13th), so you are very welcome to come and find me if you have any other questions.
    Much love xxx

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  6. Thank you so much :) I will definitely have a go with the vitamins- I had never thought about that before. At the moment I have found something to keep me going. I am volunteering at my local rainbows and brownies group- finally getting off my backside and doing something that I love and want to do later on- working with children. The work is lifting my mood dramatically and has made me see that there IS a purpose to keeping myself motivated. I am also getting more engrossed in school work- I used to be an a/a* student and I have gradually been slipping over the past 2 years. I have rediscovered my fascination with all 3 sciences and am now researching psychology as a potential A-level. For the first time in a while, I am excited for my future and thankful for the life I have. This is very much due to you, so I will thank you again for sharing your experience and true wisdom with us. I can not say it enough; you are inspirational and fantastic-I hope you will always be triumphant in your continuing battle with cancer.I hope you keep strong,healthy,happy and successful xxx

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  7. Hi, I was also one of the pupils watching your year 9 speech, and I can't thank you enough for coming to talk to us. I can honestly say that you must be the most amazingly brave and inspirational person I have ever met. You cannot imagine how long everyone spoke about your speech for, and I think you gained an enormous amount of respect from year nine! So thank you, and I hope you stay happy and healthy for a long time to come :) xx

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  8. It was an absolute pleasure, and so refreshing to see how mature you guys all are, lovely young ladies that leave the girls that let me down at your age standing!! Thank you for your lovely message, and thank you to all your friends too! xx

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  9. No problem, I just thought it would be good to get in touch and say thanks. Your story of not being diagnosed for a long time is one all too familiar in my family. For two of them, it was already too late to do anything about their cancer so I'm quite supportive of people who have cancer and thankful for the doctors who are able to diagnose them! Xxx

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