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
Monday, 31 October 2011
Monday, 17 October 2011
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...
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...
Thursday, 6 October 2011
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
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
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