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