4 posts tagged “UK”

Hartfell shares about her PatientsLikeMeInMotion™ experience

Posted July 29th, 2015 by

PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone was excited to get out there and hike. Here’s what she had to say:

“My experience with being diagnosed was quite complacent, as I had never heard of idiopathic pulmonary fibrosis (IPF). But when I read about it, it was a big shock. I found PatientsLikeMe online and was so glad because there was so much information and I was able to communicate with people with the same illness. I decided to organize a sponsor walk 5 months after I had been diagnosed to raise awareness of IPF. I have been a keen hill walker (hiker) for 23 years, and I organized a coastal walk at Kippford, with 3 levels of walks to cater to all abilities. We had a fantastic day with weather views and company and we raised £1,453.68 ($2,268.44), which was brilliant. The money went to Chest Heart & Stroke Scotland, which included my donation from PatientsLikeMe. There were 63 walkers that took part that day, ranging in age from 7 years to 85 years old. I would like to thank PatientsLikeMe for pointing me in the right direction to organize this event and help raise awareness. The event went so well and was enjoyed by all!”

If you’re unfamiliar with how PatientsLikeMeInMotion™ works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more!

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“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

Posted January 26th, 2015 by

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can.

How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like?

I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following day my GP rang me to tell me there was a tumor on my left lung that required further investigation, and gave me the number to ring for a scan, which took place within a couple of weeks. I asked if this was likely to be cancer, and he told me it almost certainly was. The scan did, in fact, reveal a cancerous tumor, and I was referred for a PET scan and bronchoscopy. On the 27th of June, I was seen by the specialist who gave me the news that adenocarcinoma was confirmed, and had spread to the other lung, and right adrenal gland, and was given an appointment with an oncologist, who would assess appropriate chemotherapy. It’s impossible to describe how this feels, but you know that your life has changed forever. I saw the oncologist on the 7th of July and was offered a course of cisplatin/premetrexed, a course of 4 to 6 treatments, every three weeks, in an attempt to shrink the tumors and prolong life.

I was told my prognosis was terminal, and that with successful chemo, 20 percent of patients survive a maximum of 12 months. If we were shocked before, nothing compared with this, it was like being hit by a wrecking ball. I started my chemo on the 23rd of July and had the fourth session in October, which was followed by a CT scan. This showed that the tumors had shrunk and no further chemo was necessary. A maintenance course of premetrexed was available but not recommended, as the chemo had made me very ill. Since then I have been on watch and wait, every three months, last time extended to four. I go for X-ray and blood tests before my appointment with Dr. Brown, my oncologist. My cancer is stable, though not cured, and my general health is good, as is my quality of life. I do tire very quickly, but then I’m getting on a bit!

You’ve received treatment for your tumors – what’s it like being on a “watch and wait” plan?

Being on ‘watch and wait’ is like having the sword of Damocles hanging over your head, you never know when it might drop. But I try not to dwell on that, it would be wasting the extra time I have been given in pointless worry and speculation. I try to forget about it between visits, and for the most part I do, though I must admit to a certain amount of anxiety in the couple of weeks prior to the next appointment.

How has your day-to-day life changed since being diagnosed and treated for lung cancer? 

Well, I thought the worst possible thing had happened to me and things couldn’t possibly get worse. But I was about to find out different. It’s hard for me to answer this objectively, as 3 months after the diagnosis, and while I was in hospital having my 2nd chemo, my husband Tim was found dead at home, having suffered a cerebral occlusion. Tim was 11 years younger than me, and in perfect health, so the shock was profound, for all of us. I passed the next few months in a fog of chemo and grief, it was the hardest time imaginable, but the days passed and I got through it.

My life has changed beyond all description and I can say with all honesty that living without Tim is much harder than living with cancer. Loneliness is my biggest issue now, and wishing he was here to help me through this, which I know he would wish he was here to do. One thing I did learn was that having a terminal illness doesn’t make us closer to death than anyone else, and that life can be taken from any of us, at any time. So it’s important to take each day as it comes, and make each one count. When I die, nothing will be left unsaid, no actions regretted or opportunities missed.

I fear death much less than I did, while still embracing what life is left to me. We all have a time to leave this world and move on to whatever adventure lies beyond, and I know that the time is coming when Tim and I will be reunited in spirit. I will be sad to leave my beautiful family, but happy that I’ve been given this time in which we’ve all been able to prepare, and make the very most of the chance to let them know how much I love them. And we all have to leave sometime!

What have you learned from using the InstantMe feature on PatientsLikeMe?

What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones. It’s so hard to see their sorrow, and know you are the cause and can do nothing to stop it. I’ve also learned that many people are much worse off than I am, having succumbed so much faster, while I am still here and comparatively well. Each time I go for a scan/bloods/chemo, or to oncology I see the waiting room full, and think, so many of us, all with similar fears and trepidation of what is coming our way.

We read that your motto is “Never give up, never give in” – along with that, what else would you say to someone who has been recently diagnosed with lung cancer?

What I would say to anyone recently diagnosed is this: You will wonder how you are ever going to find the strength to cope, how do people do it? But be assured that the strength will come, somehow, from somewhere, and you’ll find your way through. Take one day at a time, and make each one count. Prepare for every eventuality, but never lose hope. Follow good advice, not fads. Try not to look too far ahead and live in the day, or even the moment. Don’t think of yourself as dying from cancer, but as living with it. One of Tim’s favorite sayings, when the times were tough, was “Head up, son” I say that to myself every day.

And don’t Google! You’ll frighten yourself with out-of-date misinformation and meaningless statistics. Listen to the experts.

Finally, share love and hope wherever you can, while you can.

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“Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer

Posted October 22nd, 2014 by

That’s Phil’s (PhillyH) personal motto in life – “hope won’t make it happen.” She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview with us, everything from the reaction she had after her blunt diagnosis to her treatment decisions and son’s new tattoo. Phil also shared her thoughts on what every person who has just been diagnosed with lung cancer should know. As she says, “If you don’t know, you can’t do” – read below to learn about her lung cancer journey.

When you were diagnosed with lung cancer in 2012, what was going
through your mind?

My first reaction was defense. Somehow I had to deflect the enormity of what I had been told. I was so disappointed, I had been prepared for pneumonia. After all I felt well, wasn’t sick, wasn’t losing weight, still doing everything I had always done. I was so very angry about the way the doctor gave me the news. Before I had even sat down she bluntly announced “well it’s not good news.” I’m not really sure I heard much after that (if she had said the biopsy shows… then I know that’s fact, not her opinion).

It was so brutal. I asked what my life expectancy was and whether chemotherapy would help me. The response was “it might give you a few extra months.” All I wanted to do was run, hide, escape. The reality was that I had to be strong for both myself and my husband who pretty much fell apart at the news.

We had a brief meeting with a Macmillan nurse who was very sympathetic but not very helpful. There was no treatment plan, I could not have new lungs, I could not have resection, all that I could have was palliative care. Telling our immediate family and friends was hard. It was very emotional in the beginning. The care and kindness shown by friends was overwhelming and amazing. And still is.

My experience confirms to me that you should always have someone with you even if they can’t help much. It deflects some of the isolation, the why me feelings.

That diagnosis was given on 31st July 2012. I was in a very dark place after this as I had no control. I was powerless. It felt like my husband had seen me die there and then. Then I heard nothing from anyone. I was expecting to get some news of what happens next. And waited, and waited and waited. That was scary. I contacted my GP who chased the hospital and eventually on 19th August I had a treatment plan. I also was better informed about the cancer and told it was very slow growing. But incurable. The treatment would hopefully provide some control over the disease and keep it at bay.

Targeted therapy, 1 x 250 g IRESSA tablet (Gefitnib) daily. And blood tests and oncology appointments every four weeks. CT chest and liver scans every 3 months. I felt that was good result.

How has your daily life changed since your diagnosis?

From August 2012 through to July 2014 it really didn’t change that much. I still maintained my full time job as a professional development trainer. I went on holiday, I did gardening, I did write a bucket list and have fulfilled much of it, even going to Chicago. The one thing I didn’t do was a hot air balloon ride. Fear held me back, I wasn’t sure I would be able to breathe properly.

I have lost stamina, and strength in the last two years. I can’t do heavy stuff like digging, and putting up cupboards. I can paint walls and order people about to get things done (in a nice way of course).

I retired in May 2014 for a number of reasons. Firstly my relationship with my boss was not productive and was increasingly frustrating. I was finding full time harder and harder. I could work from home but I don’t possess the discipline to do this long term. Financially, it meant I lost a portion of my pension but I would rather have peace and calm in my life. I can’t be doing with office politics. Never mind the fact that I worked in public service and it is a very challenging and yet fragile environment to work.

The pivotal change came in July when my oncologist told me stop taking the IRESSA tablets. My cancer had become resistant to it. The scan showed an 8mm increase in size over a three month period. I was bereft, alarmed, panicked. It was like my protective cloak had been taken from me. I still have a supply but have stopped taking them as instructed. The latest scan showed a similar increase over three months. So it seems to be growing a 3mm a month. My oncologist still recommends observation so I return again in December.

Most of the time I feel good. I do get tired and some days are better than others. Sweating/flushing especially around waking time and morning nausea don’t last too long. A piece of dry toast usually stabilizes me.

Had a flu jab Tuesday and have felt rough all week. This is compounded by Sciatica, which sneaked up on me about 12 days ago. It’s beginning to ease now. Just have stonking headache now. Probably due to a busy few days. It went something like this. Monday 29th September right leg is painful, when sitting or getting up from a sitting position. Tuesday 30th speak with a friend who suggests sciatica. It’s okay once I’m mobile so put it to the back of my mind. Thursday 2nd Oct drove 180 miles to South Wales to see my son and his family. Sunday weather warnings make me cut short my visit and I leave around 4pm that day. Leg has been hurting more, so take painkillers. Monday see GP who announces immediately that I [have] sciatica. He knows this from the way I stagger into his room. Feel such an idiot when I get up in waiting room full of people and can’t get my limbs in action. Any way he prescribes painkillers but regularly not just when the pain kicks in. Tuesday blood test in readiness for oncology appt. Nurse offers flu jab so I take it. Tell her I have a bit of a sore throat and that’s okay. If you get flu it’s because it’s already there. Wednesday arm is sore as is throat but otherwise okay. Thursday oncology scan shows slight progression again, she’s not unduly worried. She arranges for pelvis and spine xrays because of the sciatica. Thursday have the xrays and they do not show anything. If I’m still in pain on Tuesday/Wednesday next week contact them. They will arrange CT/MRI scans. So alert to my situation. Discussed concerns re chemotherapy as aware it can poison my system. Shared thoughts on alternative meds such as Phoenix Tears. She cannot comment but does say not to mix supplements.

Friday had my nails done, they are beautiful, my new ring looks even better. Not expensive and life’s little pleasures are important to me.

Reading books on fighting cancer and will adjust diet to build immune system and fight cells. Would love to use my mini trampoline but husband would have a fit. He is a born pessimist, and well you must know that I am the opposite.

The other day my son Carter texted me asking what are you favorite flowers in the whole wide world. I tell him carnations, yellow and white. Thinking that a big bouquet is coming my way, big smile on my face. He then sends a txt pic of his upper arm with a carnation tattooed on it! I still smiled. That’s who he is. He wanted a permanent reminder and told me the flower won’t die. Through tears I still smile.

Sometimes I think I’m in denial, but I know that I’m not. I get up every day thankful I’m still here, still loved, still wanting to live till I’m a hundred.

You recently joined PatientsLikeMe – what have you found useful so far? And what do you hope to learn from your fellow community members?

It has been really helpful to read how other people are doing, what meds they are [on] and compare their treatment regimes to mine. This informs me so that I can ask better questions of my oncologist and Macmillan team. I learn something every time I go onto the site, how people feel, how they are coping or not, what their lives are like. It’s very comforting to be able to dip in and out without any expectations on either side.

Can you share how you’ve gone about making treatment decisions?

My biggest decision so far is not to undertake intravenous chemotherapy. The option offered requires weekly vitamin b12 injections, folic acid 5 days before chemo (a combination of cisplatin and premextred) with anti sickness tablets for the following 2 days, and I know chemo will kill good as well as cancer cells. It won’t ‘cure’ me. It won’t get rid of the cancer. So each time I see my oncologist I discuss my health and make my decision. It doesn’t hurt although I feel a pressure sensation in the left lung on my back. (Imagination?)

If you could share one thing with someone who’s been recently diagnosed
with lung cancer, what would it be?

Take time to absorb the information. If there are words, expressions that you don’t understand ask for clarity. Get in terms that you do understand. Join a site like this. Do be wary of internet information and check out the site’s reputation, reliability and responsiveness to you and your questions.

If it is at all possible ask if the diagnosis meeting can be recorded. That way when you feel more adjusted you can listen in the privacy of home. You’ll pick things up that you missed first time round. It will help you prepare a list of questions to take to your next appointment.

If you don’t know you can’t do.

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PatientsLikeMe at the NHS Innovations Expo

Posted March 21st, 2011 by

expo2011_logo-straplineIf you’ve ever tuned in to one of our podcasts or had a chance to view one of our videos, there’s a certain characteristic you might have noticed about me.  I’m British.  Very British indeed. During the course of my academic research career, I spent 6 years working alongside neurologists, psychiatrists, and a multidisciplinary team of nurses, speech and language therapists, physios, and occupational therapists at King’s College Hospital and the Maudsley Psychiatric Hospital in South London.  As you probably know, the United Kingdom (UK) has a very different health system to the United States (U.S.). The National Health Service (NHS), formed in 1948 as part of post-war reconstruction, has three core principles:  1) To meet the needs of everyone, 2) to be free at the point of delivery, and 3) to be based on clinical need rather than ability to pay.  Against an aging population and rising medical costs, however, the NHS needs to continually innovate in order to remain cost effective, and the UK’s coalition government has set an ambitious target to maintain quality of care while cutting £20 billion from the NHS budget (approximately $32 billion).

Earlier this month, PatientsLikeMe was invited to participate in the NHS’ second Innovations Expo in East London, a 2-day expo featuring a vast exhibit hall of innovations from the private and public sectors, as well as a packed schedule of seminars and platform presentations from Andrew Lansley (Secretary of State for Health) and Sir David Nicholson (Chief Executive of the NHS).  They spoke of plans for radical reform of the NHS, with more power being transferred from central government to General Practitioners (GPs, equivalent to U.S. Primary Care Physicians, PCPs) and much more of an emphasis on something that ties in with our core value: “Patients First.”

We were fortunate to have a “Masterclass Theatre,” where, on behalf of PatientsLikeMe, I was able to share some of our experiences in the U.S. and provide examples of successes we’ve had that might translate well to the NHS.  We also gave a couple of more intimate seminars which candidly discussed 5 lessons we had learned from 100,000 patients over the past five years.

In addition to PatientsLikeMe, there were a number of interesting innovations at the event, including a company that does what we do but for doctors (Doctors.net.uk), a patient health record that links into the NHS’ medical notes system and allows clinicians to help manage patients with rare conditions (PatientsKnowBest, founded by a doctor and chronic condition patient), and an information portal that helps provides clinicians with the best evidence to help support their decision making (NHS Evidence). We also attended the launch of an inspiring white paper from thinktank The Young Foundation entitled “Connect: Patients and the Power of Data.”  Sensible, compelling, and highly readable, the report starts off with a quote from the coalition government’s white paper on health that we might just make into a plaque: “Information is a health and care service in its own right: it must be freely available to all those who need it.” You can read the report for free here.

For PatientsLikeMe, the UK and the NHS in particular offers a number of interesting possibilities. Because there is less variability in access to care in the UK than the U.S., it might make a better environment in which to evaluate how much benefit our system can have for patients with serious health conditions.  The UK also has a strong medical science community and some of the brightest minds with whom to collaborate on research studies (see, for instance, our work with Oxford University).  Finally, the UK is an interesting place for us to operate because the system is more aligned to prioritize patient care over profitability; that’s not to say it’s flawless or that cost is not a factor in rationing access to some services. But if the current round of proposed reforms are implemented, it seems that physicians and care providers are going to be evaluated and rewarded on the basis of the outcomes they produce for patients, not just the number of procedures they perform. That sounds just like the world we’d like everyone to live in.

PatientsLikeMe member pwicks