Sky News Interview

Natasha Vince on Sky News - Afternoon Live

A recent report from Cancer Research emphasises the importance of Diet and Exercise in the prevention and treamtent of cancer - what have I been saying all along? Sky News asked me to share my story about the benefits of adapting your diet and lifestyle to conquer any disease - not just Cancer. I hope it persuades people that what you put into your body has a direct affect on your health. It's time to sit up and take note, it could save your life... it saved mine.



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.

My Little Miracle

It had been two weeks since I'd had my scan at Harley Street to check my tumours were no longer growing and hadn't spread, and considering I knew that the hospital had received the images the day after the scan, I was growing pretty impatient waiting for the results! So I called the hospital in an attempt to get through to the Surgeon's Nurse who had, up until then, been very helpful. It took me a few days to get a response, but eventually she called me back. It was last Tuesday when I finally got the call and she told me that I should have been informed that an appointment with the Surgeon had been made for the following Friday. I was absolutely fuming. Once again I hadn't been told, no one had called nor had a letter been sent, if it wasn't for me constantly chasing them up I would have missed another appointment. Surely the hospital are supposed to make a time like this as easy and stress free as possible, not add to your anxiety! It amazes me that the admin staff fail, consistently, to alert patients to follow up cconsultations, yet if you miss one they're very quick to call you and demand an explanation as to why you weren't there... well, you can't attend if you don't know about it!!



I was grateful that she had called me back, but I told her I wasn't happy about the treatment I have received throughout the whole of this diagnosis, there seems to be no communication within the department, and certainly no communication with the patients. She made no apology but gave me my appointment time, I thanked her and was about to hang up when she added, "I will just tell you this briefly though". She then went on to tell me, over the phone, that she had seen my scan images that morning along with the rest of the Liver Team, including my surgeon, and they showed that although the cancer hadn't spread, I had almost no liver function. She said that there was no hope of surgery to save any good pieces of liver - as there was none, and also, there was no chance for a transplant - she was basically telling me that there was nothing they could do for me now.



I couldn't take it in, and I just cried at her. "You're telling me I'm f*cked then, aren't you?" I said, "Yeah", she replied, then she asked me if I was ok! I couldn't believe she was telling me this on the phone, and while I was at work! I'm not sure a Nurse is even allowed to give out results without a Consultant present, and certainly not over the phone! I had only called for an appointment, not the results! She told me to come in and see the Liver Doctor on Friday, although I couldn't really see the point! I didn't need to be told that news again, and thought instead about seeking a second opinion elsewhere. But I decided to go and see him, I wanted to know why he was giving up on me when as far as we were aware, it was only affecting my liver, why couldn't I try a transplant as a last resort? I wasn't ready to give up, and I was frustrated that a complete stranger was forcing me to stop fighting.



I had the worst few days waiting to go and see him, I even spoke to my boyfriend about making arrangements if I didn't have long left. It was an awful conversation for me to bring up, but must have been a thousand times harder for him to hear. I hardly got out of bed during those three days before I went to see the Surgeon, I didn't eat, and I couldn't sleep.



Friday arrived and as I got ready to go to the hospital, I could feel the knot in my stomach tightening as the seconds ticked by. The family came with me and as I sat waiting to be called, I could feel my eyes watering.  We weren't waiting long, I walked into the Consultation Room,  and the Doctor gave me the biggest smile. I looked at him angrily, what the hell was he smiling about? I knew he was about to tell me the worst news possible and I looked up to see his nurse sitting on a bed behind his desk staring at the floor. "Good News!" He beamed, "Your tumours haven't grown, and they haven't spread". He confirmed that he thought they were now dead, and so there's no longer any live cancer in my body. He added that although the scans showed that my liver function is bad, he didn't want to remove the dead tumours and damaged organ tissue incase he accidentally removed good liver unnecessarily. He also said there was no need for a transplant because as far as he is concerned the cancer is no longer live and therefore not a threat. It was completely contrasting information to the news the Nurse had passed on over the phone a few days previously, she had been completely wrong! I sat looking at him in a complete sate of confusion. He asked me why I wasn't happy, "This is great news!" He continued, "You could live like this for the next 30 to 40 years!" I murmered that of course I was happy, but that I'd had an absolutely awful week, because of what the nurse had told me. Before I could finish my sentence he said I shouldn't worry about what anyone else says, he is the Doctor, my concern should lie with how he interprets my scan, not anyone else. All the while the nurse kept her eyes to the floor.



But of course, I was elated. Inside my heart leapt, it was the most amazing news, and even more so because of the mis-guided information we had been given. He told me to come back in January for more scans, to check everything is still the same, if the Cancer becomes 'live' again, then I guess we're back to the drawing board. But my body seems to have healed itself, I have had no treatment for his diagnosis, I guess all that healthy eating and exercise has something to answer for!!



But I was angry that I had been put through the worst week of my life for no reason. So I asked to speak to the nurse after my consultation, to ask her why she thought it appropriate to have that conversation with me (even if the information had been correct) over the phone. But she refused to talk to me, she refused to come out of the Consultation room. My mum managed to get through to her on the phone a few days later, but she made no appologies for how she had made me feel. Instead she blamed me, saying I had mis-understood what she had said, and pointed out that I shouldn't have asked for results over the phone - all of which, was incorrect. There was no way I would have asked a nurse for the results, it's only the Consultant I'm interested in hearing from, and I didn't mis-understand anything - I understood every word she said.



But I'm done (for now!) wasting my energy on incompassionate and, frankly incapable, hospital staff. I don't need to go back for another check until January - which seems a life time away now!



The body is an incredible thing, it's much more resilient than we realise. Christmas has certainly come early for me this year, and I thank God, for my little Miracle.

Kiss From A Rose - Extract 2 - Too Long To Wait

The second extract I have picked describes my frustration at the amount of time it took for doctors and medical professionals to listen to me, and take my stomach complaints seriously - it took almost two years to get a diagnosis. From talking to other teen cancer patients over the last ten years I have found this to be a common problem, and devastatingly, as a result, teens are often diagnosed too late despite repeated visits to their GPs and local hospitals. After ten years, the situation doesn't seem to have improved much, and this is one of the main reasons I wanted to write the book. I wanted to raise the point that no one knows your body better than you do, and when a medic is telling you that you are wrong, especially at such a young age, it is not only exhausting and frustrating, but extremely patronising. The arrogance of some doctors I have come across is staggering, and so I hope this particular extract from the book, taken from the chapter 'As It Was In The Beginning', helps to highlight the fact that although cancer in teens is rare, it is certainly not as rare as many doctors seem to think.

Too Long To Wait

Can You Afford Not To Pay?

It has been well over a month now since I saw my Liver Surgeon, well over a month since I was told some scans would be organised to confirm that my tumours are no longer growing - or growing extremely slowly at the very least. Over a month since he said he would operate to get the existing tumours out as soon as possible.

I have got used to the waiting game now, I have got used to the disappointment at the lack of concern and urgency the hospital and doctors now show towards my case. I try my best to live my life to the fullest regardless of the shadow that constantly looms over me, as I am made to wait for the next appointment, and wait for the next step in my treatment.

So, I was waiting patiently until the other morning, when I received a phone call from the Surgeon's nurse. She asked me if I was still waiting for a scan appointment, I said I was, then she told me that the Surgeon hadn't told anyone that a scan was even needed, she stumbled across the request by chance in my notes. It seems that after my last appointment with the Surgeon, I walked out of his consultation room and I was forgotten, almost immediately. The scary thing is, when she told me this I wasn't shocked, appalled, or angered, and as she apologised for the fact I had been waiting so long I heard myself utter the words, 'No worries, things like this really don't surprise me anymore". And it was true, I, like so many others, have come to expect this lack of basic care, so that when a cancer patient is literally forgotten about, we don't even bat an eye lid.

Luckily, she seemed genuinely regretful that I had been kept waiting so long for what is really a simple scan, so she told me she would temporarily refer me to Harley Street, and subsequently the scan and the processing of the results would be sped up. She explained that if the hospital feel you have been waiting a particularly long time, they can send you to have images taken privately, but at no cost to you. They fax over the patient's details, and an appointment is made almost immediately. 'Ok', I thought, 'I'll give them a couple of weeks before I start chasing everyone up again', and thought nothing of it for the rest of the day.

The next morning, Harley Street called and asked me if I would like the scan to take place the following morning, - now I was in shock! I couldn't believe I had been waiting all this time for a scan on the NHS, and Harley Street were offering me an appointment the very next day. In my astonishment I mumbled that I had to go to work the next day, so the receptionist asked when would be most convenient for me, and sure enough when I told her my next free day, she booked me in at a time that I chose. She then informed me that the scans would be processed and analysed and then sent back to my hospital on a CD the following day, then she followed up our conversation with a confirmation email with all the appointment details.

I realise this is a service normally paid for by the customer, but the efficiency, organisation and empathy knocked me back a little. Then I had a thought.. are we not all customers of the NHS? Do we not pay enough of our hard earned money through tax into a system which is supposed to give back to us when we need it most?

Reason and politics aside, the NHS is crumbling, I firmly believe this. There is neither the money, nor resources to fund it efficiently or effectively; the staff are not paid enough and so the care and time needed for each patient simply isn't there, even if the best intentions are.

So save your pennies now, your health care and that of your children will soon be in your hands - can you afford to rely on the State to save your life, or will you pay with it for doing so?

I'll look forward to the treatment I'll get later in the week when I go to Harley Street for my scans, but the difference between this world and that of the NHS will be all the more obvious when I need to wait however many weeks it will be until my Liver Surgeon can schedule an appointment with me to discuss the results. That's if he remembers of course...

Kiss From A Rose - Extract One - Diagnosis

I have decided to publish ten extracts from the novel 'Kiss From A Rose', I want to make my story more accessible to teenagers and other cancer patients who might benefit from my experiences.

So I have begun with the chapter that describes how I was diagnosed, and the following nine will depict the rest of my journey as the book describes it. I hope they offer lots of information and advice, but also comfort. Feel free to let me know what you think, and if any of what I say perhaps rings a bell with what you are going through or have been through.

Enjoy...

Diagnosis

Cancer Waits For No One

The other day a message was posted on the Kiss From A Rose website. It was from a mum, who's seventeen year old daughter is in the middle of treatment for a tumour found in her groin. In her message, she explained the beginning of their journey and an all too familiar account of repeatedly visiting her GP and local hospital, trying to get them to recognise the pain her daughter was in, waiting too long for a diagnosis.

Why is it that when it comes to teenagers, so many medics turn a blind eye? I just don't understand it. Here was a girl with physical symptoms - a lump growing at the side of her groin, and she was told it was a bruise by medical professionals. Much like my mum who was told to take me a psychologist when I persisted with visits to A&E 10 years ago at the beginning of my journey, her mum was told to stop reading so many Women's Magazine's when she challenged the 'expert's' opinion. It absolutely infuriates me, and I worry about the apparent lack of progress and recognition of teen cancer by doctors still, an entire decade later.

Why would a young girl who otherwise could be out with friends and enjoying life, insist on returning to A&E nearly every week, if there wasn't something wrong? I'm sure that doctors very often come across people who over react and panic unnecessarily over their health, and NHS funding is limited, we can't be handing out scans and X-Rays to everyone who comes along complaining of an ache or a pain. But there must be some way of ensuring that if a patient visits a hospital complaining of the same pain in the same place, maybe five times for example, then they are automatically given a scan, just to be safe. How is that in some cases we can afford to award breast implants and other cosmetic procedures on the NHS to people who feel it would improve their way of life, but we are so reluctant to spend money on what seems to be a forgotten generation? Have teenagers earned such a bad reputation that they deserve to be ignored?

Kiss From A Rose accounts my frustration at having to wait nearly two years to be diagnosed,  it was nearly two years of absolute hell, trying to get someone to listen to me, trying to get someone to help me. It was very nearly too late for me, and it broke my heart when I met others on my ward who were diagnosed too late. Perhaps they were waiting too long to be heard... perhaps they could have been saved... perhaps it would have taken just one scan when they first realised something could be very wrong... perhaps?

I hope that by talking about my story and others' we finally break through the arrogance and ignorance of some doctors, it needs to be recognised that we know our own bodies, no matter what age we are. When it comes to being diagnosed and giving yourself a chance to beat it, surely it goes without saying, Cancer Waits For No One.

A Pill For Every Ill?

After waiting three months for a confirmed decision on a transplant, I finally saw my surgeon last Friday. Although, following my previous appointment with him, he was keen to carry out the surgery, I had to wait for approval from an International Board of Surgeons, I needed their 'go-ahead' before the transplant could take place. So last Friday, I waited nervously outside the Surgeon's office to find out what the decision was. I waited for almost three hours until it was my turn to be seen, and I could feel my heart pound as the nurse finally called my name.

My lovely family came to support me, and as we filed into the consultation room and each took a seat, the doctor wasted no time telling me what the outcome of his meetings with the Board was. He explained that they were reluctant to agree to the procedure, giving the reason that the Immunosupressants I would need to to take after could cause me problems.

Immunosupressants are drugs which suppress your immune system in order to reduce the risk of your body rejecting the new donated liver. He went on to explain that if I had any tiny, undetectable cells anywhere else in my body which my immune system was currently keeping under control, by taking the body's defences away the cancer cells could quickly grow and multiply thus forming tumours elsewhere in my body. If that were to happen, I'd be really stuck! If a tumour appeared soon after I had a transplant, my body would be too weak to handle chemotherapy or any other drugs that they might otherwise be able to give me. It would be disastrous.

As the Surgeon continued speaking, I felt my heart sink further and further towards my stomach. I saw my chance of fighting this again slipping through my fingers. 'It's finally got me' I thought to myself. I was expecting the Surgeon to suggest the 'back up operation' he suggested before, which would see him removing most of the liver, as a half hearted attempt to get rid of this relentless disease. And his attention did turn to this alternative operation, but as he began speaking about it his eyes lit up.

He took out a picture of my latest scans, and put them up on his computer screen so we could all have a look. He explained what my consultant had already told me, that the tumours hadn't grown since the previous scans, taken six months before hand, but he also pointed out the colour of the tumours. They looked much darker in these latest scans, and although he could not be sure, he thought it might be an indication that the tumours had in fact died. He looked at me with immense happiness, but I couldn't take in what he was telling me, I didn't even know that tumours could 'die' like this.

He went on to explain that a transplant could have proven unnecessary, and that simply cutting the affected liver out would actually now be a much more sensible option. Using the metaphor 'like killing a fly with a canon ball' he explained that a transplant could end up doing more damage than was needed and just removing the tumours and the affected bit of liver would be sufficient at this stage. If the tumours returned in the liver in the future, however, he assured me that a transplant could still be an option for me, depending on whether I had remained clear throughout the rest of my body in the mean time.

We finished the consultation by arranging some more scans in a few weeks, to ensure that the tumours are definitely not growing, or at the very least growing extremely slowly. If this is the case, I can book the operation to have them removed as soon as I am ready. If the scans show otherwise, however, and the tumours are much larger, or the disease has spread elsewhere, then it's back to the drawing board to weigh up the options I have left.

I left the hospital in a daze. It was potentially the best news I could have hoped for, but I didn't even realise it was a possibility. From being given such a negative prognosis all those months ago by my Oncologist, to this, it was almost a complete turn around.

But then I remembered all the research I carried out after that awful day in March. Having been told there wasn't much that could be done to help me, other than the slim chance of being granted a transplant, I researched alternative treatments. I learned that you can 'starve' cancer cells, and therefore prevent them from growing, or developing and spreading. You can do this through your diet, and vitamins.

Now I'm starting to tread on dodgy ground, and am sure I will upset many medics, but it seems to have worked for me, so I feel I need to put it out there.

While I was waiting such a long time for feedback about the transplant - between March and September, I researched the types of food you should eat plenty of, and food you should avoid if you have cancer, and in particular, cancer in the liver. Now, I would never refuse conventional medicine, but I thought, if I could help myself in any way I can while the doctors were considering my case, what harm could it do?

I learned that with cancer in my liver, and a damaged kidney, I should be eating leafy veg, such as spinach, broccoli, and wheat grass. I also found out that cocoa is very good at reducing the risk of getting cancer, and also actually attacking cancer cells as well. However, it is not enough to be stuffing your face with Bounty bars all day, the chocolate you consume needs to have over 70% cocao content - the higher the percent, the better. Cancer cells crave sugar, so the less you give them, the more likely you are to be able to starve them. It is also suggested that you avoid red meat, although I reckon that's almost impossible!!

But the one piece of advice that kept cropping up everywhere, was the importance of Vitamin C. Vitamin C is vital in combating illnesses in the body, all animals, except humans, produce their own Vitamin C, and is released whenever they are feeling low or rundown. This doesn't happen in humans, so it is important that we take supplements. However, I also read that Vitamin C is the most natural form of chemotherapy - without any of the awful side effects, other than giving you a dodgy stomach if you get a little carried away!

So I tried all the advice, after all what harm could it do? And it made good sense. So I improved my diet, ate lots of green leafy veg, cut down on the red meat, and only ate chocolate that had over 70% cocao content. I exercised a lot more, as this is also thought to improve the chances of overcoming Cancer - as a Macmillan Study recently confirmed, and I took as much Vitamin C as my stomach could handle.

And then I had those latest scans...

In a world so quick to prescribe a drug for every ailment, should we in fact be taking a step back and listening to nature? I guess only time will tell, and it will be interesting to see what my next set of scans show. But something has worked, something seems to have dramatically slowed down the growth of my tumours, if not killed them.

'A pill for every ill'?... perhaps not.

A Liver To Live

Today I received an email from a lovely young mum, and she told me about how, just a few months ago, she saved her little boy.

I have read all the NHS information, Liver Transplant packs and all the Statistics I can get my hands on, but none of them compare to talking to someone who has experienced what I'm about to go through. Having someone to tell you how they felt, what obstacles they came across, and how they overcame their hurdles is invaluable, and one of the reasons I write about my own experiences. It's so important to be given the benefit of a human account rather than figures and explanations churned out by the Government, so I tracked down someone who had been through a transplant themselves, and I asked her to tell me her story.

Not long ago her little boy was dying, his liver function was deteriorating so rapidly, he had only a matter of days to live. The doctors told her and her husband that a transplant was the only way of saving him, but they had to be quick. There was no time to wait for a liver from a deceased donor, so they made arrangements for the family to be tested to see if there was a match amongst them for the little boy, so that a 'live transplant' (meaning both patient and donor are alive), could be carried out. The doctors would need to take about 25% of the liver from the donor to transplant into her son and she sat and prayed for a match to be found as, one by one, members of the little one's immediate family were tested. She grew increasingly desperate for her baby as each test come back negative, until it was her turn to give a blood sample. She had hoped another member of the family would be a match, allowing her to look after her little boy and help him recover, but as the possibilities of donors dwindled in front of her, she began to have the tests done herself and as the results were rushed through, to her unimaginable relief, they showed she was a match. The next day surgeons performed the operation; it took them 5 hours to remove part of her liver to be donated, while her son was on the operating table for twice as long as they replaced his failing organ. Her act of selflessness and pure love had saved him, she gave him a liver to live.

Now mum and son are recovering really well, and as she told me how much stronger he gets day by day, a flood of admiration overwhelmed me. She described what her little boy had to go through during and after the operation, the tubes he had inserted, down his throat and inside his nose. She listed the medication he needed during the procedure and the medication he'll be on for the rest of his life, and the check ups and hospital visits he'll never be free from. But nowhere in her email was there a hint of negativity, or exhaustion, -only joy. He has been given a second chance, and not only that, she has given him that second chance. Now they'll share a bond like no other, a bond that no one could ever break.

How do we lose sight of such appreciation for life?

Treading Water...

When you live with Cancer some days are much harder than others. It is much harder to get up in the  morning, much harder to stay positive, much harder to even make conversation with people you love. Some days you just want to stay in bed with the covers up over your head, wishing it would all go away. Some days it's hard to keep going. The past week has been full of days like these.

It's bad enough being in remission, the low days are hard, however, they're often few and far between. But knowing that this poison is inside me, growing everyday, threatening to strangle the life from my rose bud often makes it difficult to concentrate on anything else.

Although my latest scans have been encouraging, indicating that the disease isn't spreading, and is growing extremely slowly, I still get very frustrated at the amount of time I have been kept waiting by the hospital. My doctors are still on holiday, still keeping me hanging on for a decision on a transplant, and I feel I have been left to tread water, trying to keep my head above the surface until they are ready to throw me a float.

But this is juxtaposed with a longing to maintain a normal lifestyle, to continue going to work, seeing my friends, swimming, dancing - living. I don't want to be restricted by surgery, transplants, and medication. And this is what brings me down, this confusion as to whether I want the doctors to hurry up and make a decision, or to leave me alone altogether.

And so, still, I wait. But I'm strong, and I know that for every tough day I have, there are many more brighter ones. I know how lucky I am to even have the chance to fight this, so many others are robbed of the chance to do so too young, too soon.

Today was much harder than others, but tomorrow might be a little brighter.

The Launch Party

Hope you enjoy the little film we have put together with footage and interviews from the launch party!

Kiss From A Rose - The Launch



'Kiss From A Rose' - The Launch

I'm still waiting for the decision on a transplant from the National Board of Surgeons. It's holiday time now, so I have to wait for them each to return from their city trips and tropical adventures before they come to any conclusions on my case. My Consultant goes away this week too, so it'll be a while before I get any confirmation on the possibility of a transplant. But my last set of scans were encouraging, the tumours in my liver haven't grown, and the disease hasn't spread, I can afford to wait a little while.

So I have kept myself busy by organsing and hosting a book launch for 'Kiss From A Rose, I will put up a film of the event over the next couple of days, but for now, I hope you enjoy the photos!

 

 

 

 

 

 

Kissed By The Rose

I woke up on Friday morning feeling very low. I had received a phone call from my Consultant the previous evening saying my scan results were not yet available and that there was no point attending my Consultation in the morning. But he quickly picked me up by saying he would call as soon as they came in and I tried to stay positive as I hoped for the news that the Cancer hadn't spread. However as the day went by, and there was still no phone call, it was difficult to maintain an optimistic mentality - I just wanted to know what the scans showed.

It was getting later and later, and I still hadn't heard from the Consultant, soon it hit 5pm and I was resigned to the fact I'd now have to wait until Monday to hear the results. The thought of them playing on my mind over the whole weekend frustrated me, so I decided to go shopping to take my mind off the hospital, and cheer myself up a little! As soon as I got into the car, ready to drive to Bluewater my mobile rang, it was a blocked number and I knew immediately that it was my Consultant. As I sat in the car I froze for a second and stared at the phone. A mixture of emotions surged through me and, for a second, I even contemplated ignoring the call. I wanted so much for him to tell me the rest of the scans were clear, that I didn't want to give him the chance to tell me anything different. But instinct kicked in, and I watched my thumb hit the 'answer' key, and I raised the phone to my ear as he spoke.

"I'm going to tell you what I know, which I know is never enough for you, Natasha" he started. And I smiled as he went on to say that there was absolutely no changes to the scans when he compared them to the last set of images I'd had taken back in December. The Cancer hadn't spread, it hadn't even grown in my liver; nothing has changed.

I cannot put into words the delight and relief and emotion that poured out of me in that moment, it was the best news I could have hoped for. My consultant went on to explain that the Transplant Surgeon had still not heard back from the Board of Surgeons on their decision to back his support for my transplant, but I told him I could wait a few days for that! I had the news I wanted, even if the Board said no to a transplant, now at least I knew the 'back-up' operation that the Transplant Surgeon had discussed with me was possible, because the rest of my scans were clear.

My consultant also explained that he has asked two independent Oncologists to put together a report for the board, advocating my case for a transplant. In the report there would be evidence of how rare my specific case is due to the fact the cancer has not spread, and I have been clear else where for seven years now... I should find out early next week what the Board's decision is.

So there you have it, another of life's blessings, another Kiss from the Rose...

Out Of The Frying Pan... Now Where Do I Go?

Straight into the fire it seems.

Last Friday I had the scans which will determine whether a transplant with prove fruitful or not. I get the results this Friday, and if they show the cancer is still contained in my liver, I will go on a transplant waiting list for a deceased donor, while the hospital test my family to see if I can have a partial transplant from one of them. But if the scans show the cancer is spread, then I have no choice but to try my luck with Chemo in the hope it buys me some time.

So in an optimistic attempt to educate myself about the procedure that has the potential to cure me of this forever, I took a look at the NHS website http://www.nhs.uk/conditions/liver-transplant/pages/introduction.aspx, I also wanted to find out how I can look after myself before and after the transplant operation. But in the process of researching the operation, I have frightened myself beyond belief. Of course I realised the seriousness of the situation I'm in before opening up the web page, but I always try to remain positive, so seeing the risks and side effects of my 'get out of jail card' staring back at me in black and white has terrified me.

I read that in order to avoid the chance of my body rejecting the new liver, whether it's from a living or deceased donor, I will have to take drugs known as Immunosuppressants for the rest of my life. The hospital prescribes a very high dose initially and gradually reduces the level you need as time goes on. Manageable, so far. But as I read on I learnt how these drugs in turn carry their own risks and devastating side effects. With conditions such as hair loss, hallucinations, diabetes and cataracts listed as some, I started to wonder if it was all worth it? Of course they can reduce the level of immunosuppressants you are taking if the side effects become unbearable, but they must ensure the immune system remains suppressed enough to avoid the chance of your system rejecting the new organ. It's a kind of balancing act which can only be monitored according to how your body reacts to the level of drugs you take.

And so I get rid of one disease to be confronted by a list of others. But I must remember that I'm strong and healthy otherwise. I would much prefer to be aware of the possible side effects going into the operation, rather than discover them as they are happening, at least now I will be prepared for them. If I went in with my eyes closed and found I was hallucinating, losing my hair, or even worse, losing my sight, as well as suffering with the pain from the operation, that would be far more frightening.

But I know having this transplant holds the best chance for me at beating this disease. I need to look beyond the effects of the immunosuppressants and know that they can at least, to some extent, be controlled. The same cannot be said of Cancer. So I'm ready for those scan results, I'm ready for them to show that I'm clear everywhere else, and I'm ready for the operation. This week is National Transplant Week... I think that's a good sign!

The Cost of Cancer

Fighting cancer is an expensive business. While you're trying to prevent it from costing you your life, the hole it burns in your pocket can start to get out of control. From buying countless train tickets for routine appointments, to taking time off work to have treatment, the cost of cancer can really start to build up.

But there are people and organisations that can help... it's just finding them that is the key! Your GP should advise you on ways to relieve the financial strain of being ill, although, from what I have seen, this doesn't happen all too often. For example, it has only taken me ten years to find out that the NHS provide a 'Medical Exemption' card to all Oncology patients! This means that any medication you need as a result of having treatment is free. This can include anything from painkillers to control the agony of a growing tumour, to medication to treat any side effects of chemo. You just fill out a simple form, which you can pick up from your GP's surgery, then send it back to the doctor and they take care of the rest!

It is also worth getting in touch with Cancer charities to find out if there are ways they can also lend a hand. For example, the CLIC Sargent Charity http://www.clicsargent.org.uk/Whatwedo/Financialsupport helped my mum and I enquire about what financial support my local borough could provide. It proved invaluable when mum had to take time off work to care for me, and was losing most of her salary as a result. Other charities that work hard to help families struggling to keep their head above water include Macmillan http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Financialissues/Gettingfinancialhelp.aspx.

Being told you have Cancer, at any age, is terrifying. Hearing those words immediately prompts fears of dying, leaving loved ones behind, and coping with the side effects of treatments. These issues are enough to deal with, without the added pressure and concerns of the financial consequences of being diagnosed. If you're paying out more than you're bringing in, then of course your stress levels will begin to rise, and you're in danger of damaging your health even further. It is important that you find as much support as you can with additional issues, such as money, so that rather than worrying about where next month's rent is coming from, your focus is entirely on winning the fight.

Coming Out Of The Dark

Last Friday I was getting ready to go in to work, I was running a little early, so decided to give the hospital a call to re-book my appointment with the liver transplant surgeon. By now I had just about calmed down from the previous disastrous visit to his clinic, so made an appointment for next Friday. I managed to get a late appointment, which was perfect, as it meant I could still go to work then travel on to the hospital afterwards. So the receptionist confirmed the date and time and just as I was about to put the phone down, he quipped, "there's no guarantee the surgeon will be there though, you'll probably see a member of his team instead". Brilliant!! It was impossible to get an appointment with this man! And not only that, nobody at the hospital seemed to have a clue when he was actually due to be there, if at all. "I'm beginning to wonder if this man actually exists at all!" I half joked as I put the phone down.

Because I have so many, I keep all my appointment letters and hospital correspondence together in a file. After I made this new appointment, I went through my file to remind myself of all the other appointments I have coming up, the scans, my consultation with my general consultant, my appointment with a doctor who helps me control the itching caused by poor liver function, etc. As I was going through each piece of paper, I noticed that the appointment letter to see my general consultant in a few weeks had another patient's name on it. I had made the appointment in person only three days before, and was standing in front of the receptionist as she booked it. She had my file in front of her with my name plastered all over it, and had just booked my scans, and managed to do that in the correct name! So I called the receptionist to rectify the problem, and was told I could no longer have this appointment as the other patient named may turn up. I tried to explain that I had made the appointment in person, so it was definitely for me, just with the incorrect name on the paper, but I was told I was wrong. The receptionist said that it certainly wasn't her mistake, and I would have to book another day, she added that the next available appointment was two weeks after that. "I don't think so", I said, "the appointment I booked is already three weeks away, and it's to pick up scan results which may show my wait for a decision on a possible transplant has been in vain. That's long enough to wait, don't you think?"
"Ok fine." She replied "There's one on the same day at 11:45am". Strange, I thought, that an available appointment had just sprung up suddenly out of nowhere.

So I emailed my consultant, I explained that I had booked an appointment to see the liver surgeon for next week, and that there was still no guarantee I would see him, but instead a member of his team again. Within two minutes my consultant called me. He told me he had spoken to the surgeon the previous day, and that I should have been contacted by the surgeon's receptionist to tell me to come in that Friday afternoon, I had an hour to get there!!! I was frantic!! My consultant added that the surgeon wasn't around the following week for the appointment I had just made, so unless I wanted to wait another three weeks to see him the next time he was in clinic, I needed to get there straight away. I called work to let them know the situation, and called my mum, who left her work immediately to come with me. Isn't it funny how the people who are supposed to be as helpful and supportive as they can, i.e. receptionists and hospital support staff are actually, often, very difficult, and yet the people at both my work and my mum's showed unimaginable compassion as they told us to drop everything and get to the hospital.

I was told to be there for 2:30pm, mum and I raced through the doors and up to the reception desk just after 2:25pm. And there we sat for four hours. Patients came and went, the receptionists left, I was starting to worry that the surgeon had gone home also. But just as it turned 6:30pm, he called me into his office. I felt sick, I couldn't believe after all the waiting, the stress and frustration I was finally going to get an answer.

He was a tall man, and loomed over me as he shook my hand and apologised for the time it had taken for us to finally meet. I wanted to let him know that I was angry with him, and his department, for the way I had been made to wait. Throughout the four hours mum and I had been waiting outside his clinic, I had prepared a speech about the fear I felt that I had waited too long, and that I could have started chemo months ago - especially if he was about to tell me that, in his opinion, a transplant was not an option.

But my anger and frustration melted away as he told me I was a good candidate for surgery. He examined me and laughed as he said it was as if there was absolutely nothing wrong with me. "That is my point", I told him. "As far as I know, I'm healthy and clear everywhere else and have been for seven years now. I don't feel ill, I'm not in pain like I was when I was diagnosed the very first time ten years ago. This disease seems to be targeting my liver, so perhaps if it was replaced I might have a good chance".
"I think you're right" was his reply. I couldn't believe what I was hearing, it was like receiving the most wanted and appreciated Christmas gift ever, it was difficult to hold back the tears. He explained that legally, before he performs any transplant operation, he needs to submit every case to a sort of international board of surgeons for their approval. He said that he couldn't see that there would be a problem, but added that there was an alternative operation he could perform, which he actually invented(!) if the board did reject my case.

But I got frightened as I realised just how dangerous these operations are. As he quoted mortality rates at me, I could feel myself running back to the idea of chemo. It sounds ridiculous, but I guess because I've had so much of it before, and got through some really dark times, chemo treatment seemed like a much safer bet. He told me that the mortality rate within ten months of having a transplant is 5-10%, if I had the alternative operation, the mortality rate is over 10%. "It's your decision", he said, "whether you would consider the alternative surgery if the board reject your case". I told him over 10% is too high risk for me, and that if I couldn't have a transplant, I would have chemo instead. "Yes", he interrupted me, "that's the wrong decision" he said looking me straight in the eye." Chemo will only buy you a bit of time, I want to get rid of this completely".

So that was it, the decision was made for me -which, in this case, is how I prefer it to be. And I walked out of his clinic with a weird mixture a feelings, I was frightened, very frightened, but so elated too. Elated that he could see a light for me, that he was standing beside me in this exhausting battle.

So, in a couple of weeks I'll have my scan results. If they show that the disease has spread, then we're back to the drawing board. But as things stand, I'm hoping that it is still contained in my liver and the board can make their decision.

My life is in one man's hands whichever operation he performs. And although that leaves me feeling incredibly vulnerable, it actually goes hand in hand with making feel overwhelmingly protected.

Drunks, Drug Addicts step forward please. Cancer Patient? Go to the back of the Line....

You know you have a problem when your consultants are at war with one another...
After my disappointing hospital visit on Friday, I saw my general oncology consultant yesterday. Expecting to have another battle on my hands trying to get him to understand my frustration at the transplant team, as soon as I walked through his office door, I embarked on a one woman rant at him. I barked about how disappointed I was with the department, and how angry I was at being kept waiting so long for such an important decision. But he just sat with his head in his hands. I could see he was even more irate at the transplant team than I was, and he immediately picked up his mobile to call the transplant surgeon to find out what was going on. He stepped outside the room for a few moments to make the call, when he returned, the look on his face told me he was now even more infuriated. He looked at me forcing a smile and said "you know when you start dialling a particular person's number and you just know they're not going to pick up?" Christ I thought, if he's not answering to another colleague, what chance have I got when I call to make an appointment??!! I left my Consultant's office yesterday feeling a little calmer. I was relieved that he shared my frustrations, I didn't feel as though I was banging my head against a brick wall so much. We booked some scans, and if they show that the cancer has spread I'll start some chemo. If it hasn't and I still have no answer from the NHS transplant surgeon, I'll pay for a liver, and I'll save myself.

But what gets me the most is the attitude some doctors have, this jovial "no-can-do!" response they have to their patients' needs. I wrote about this in some length in 'Kiss From A Rose'. When I saw the transplant team's representative on Friday he was smirking as he told me he had no idea who I was, or what my case involved. It was as if my life was a joke to him, that it was amusing that I somehow slipped through the net.

The truth is I'm not considered a priority case, no matter how many times the cancer returns in my liver. Although my liver function is so bad to the point that it causes constant itching all over, it's not quite bad enough to be at the top of their 'to do' list. If I was an alcoholic or a drug user, however, it would be a different story. If someone drinks their liver into oblivion, and there is very limited function as a result, they go straight to the top of the transplant list. "But they could drink away the new one!" I hear you say. True, but a surgeon is not allowed to make that assumption, they must have faith that the alcoholic will respect the second chance they have been given. But try telling this to the mother of a six month old baby boy, who has a type of Cancer in his liver. She would be told that a transplant is not the answer, because in this situation they cannot assume that the Cancer won't return elsewhere, or in the new donated organ. As she stands pleading with a surgeon to save the precious new life in her arms, with a donated liver that has just arrived at the hospital, he could be prepping for surgery to give that liver to a 58 year old man - a grown man who has had his life, and spent most of it drinking his own liver away. Where's the justice in that?

And so, my wait continues... with a bottle of rum. Well, if you can't beat 'em......

The Patient Patient

So disappointed. My transplant consultant is on holiday this week, and so I saw a member of his surgery team in clinic, even though I specifically asked to see him. The doctor I saw had absolutely no idea who I was, and had no answers for me, how worrying is that? I have been waiting nearly three months for a decision on the possibility of a transplant, and still the surgical team know nothing about my case.

How much longer do they think I should wait? Until it has spread a little, so a liver transplant would prove ineffective? Or maybe until it has spread all over in which case no form of treatment would prove effective?

What frustrates me the most is I know I can fight this. I've done it before, many times, and I'll do it again. And I'm ready to fight. But I'm standing face to face with the enemy in an open battlefield, with no weaponry, nothing to back me up.

And so, the agonizing wait for someone else to make up their mind as to what should happen in this next stage of my life continues.

My life in their hands

So today is D Day. I'll meet a complete stranger, and he'll tell me whether or not he can save my life. I have been waiting two months for the transplant team at my London Hospital to make a decision as to whether or not a Liver Transplant will be an option in my battle against this disease. In March I was told that I have Cancer, for the sixth time, the fourth time in my liver. Although I have had much chemotherapy over the past ten years, it doesn't seem to have been enough to keep this monster away. In the past the hospital have tried to treat the disease in my liver with an intense form of Radiotherapy, known as Radio Frequency Ablation, but this time it's not an option. So it's either chemo, or a transplant. The problem is, a transplant doesn't guarantee a cure, the disease could come back elsewhere, it could even come back in the new liver. On the other hand, my body is so battered form years of previous chemo, I'm not sure how much more of that it can take. With only one remaining kidney, and a damaged liver, chemo could push my body too far, so where do I turn?

My appointment with the surgeon is in just a couple of hours, and I sit here nervously thinking about what he might say. It's an odd feeling, as I'm not sure what I'm feeling nervous about, I'm not quite sure what I want him to say. Having a transplant may be the answer, as, apart from my liver, I have been clear elsewhere for the past seven years, I may have this operation and be cancer free for the rest of my life. But at what cost? Would I need somebody else to lose their life, in order for me to save my own? Or, if there was the possibility of taking part of a living donor's liver, how would I even begin to ask for a favour as huge as that? What if I survived the transplant operation, but my donor didn't, how could I live the rest of my life with that on my conscience?

I'm starting to think the decision is best left out of my hands, but it's still frustrating to feel so out of control over something so huge. If he says yes, the search for a donor begins. If he says no, I'll see my oncology consultant on monday to discuss plans for chemo. Whatever his decision, I pray it saves me.