2 posts tagged “kingdom”

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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“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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