Welcome: If you’ve just arrived as a... - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

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Welcome

matt profile image
matt
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If you’ve just arrived as a Pioneer member this is where it all begins. HealthUnlocked is a social network for health advocates like yourself to start an online movement. It’s about reaching other people and pooling together a mixture of information, support and experience to empower and change the lives of others. Most people with similar health interests also have something unique in their own experience that can help others. Everything here is designed to help you unlock the power of the crowd.

Back in 2007 I was a resident surgeon in a leading UK hospital. Our government was launching a series of changes to the way specialist doctors like myself were being accredited, and 99% of us felt it was a damaging step for the nation’s health, harmful both to us and future generations of patients we’d be treating. Big health institutions weren’t interested, so myself and a handful of doctors got together online. We started bringing more and more doctors into the group through the web. At first many thought we were crazy but quickly we became grassroots advocates for a generation of UK doctors, and in a couple of months we had a movement of 15,000 that provided support, inspiration and information to each other. We organized the biggest medical rally in UK history, an ongoing media campaign and, eventually, a high profile legal action. We got the health reforms radically changed for the better. See the article: bit.ly/R3tCM4

I learnt a lot about the immense power of togetherness, so when I joined forces with Jorge (our CEO) to dream up HealthUnlocked one of the main goals we shared was to make creating an online movement easier for inspired health advocates like you. From my own experience the importance of the group pioneers is the key.

That’s why you being here and reading this today is an important moment. In my experience if you can summon up the persistence to connect with other pioneers, create some activity, and trigger the spirit of a community, there’s no end to what you will go on to achieve together.

This 3 minute TED lecture speaks volumes about it:

youtu.be/RXMnDG3QzxE

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matt
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Margarethw profile image
Margarethw

I am a Stage 4, NHL survivor. Was dx 14 yrs ago. Was told at the time that it was not a question if I came out of remission, but when. Well, I am still cancer free. I still have fatigue, and chemo brain if I get tired. The toxic doses of chemo caused permanent alopecia and I have to wear a wig, but hey, I am still alive. I defied the odds. I am thankful for the opportu ity to say I am a survivor.

Dlindquist54 profile image
Dlindquist54 in reply to Margarethw

Hi, I loved reading your story!! My doctor told me I'm treatable probably not curable! I was diagnosed with cancer in late 2012 and by the time they found out what kind of cancer, I was in the hospital with a respiratory code. I was treated with r-chop - 6 treatments. Treatments done by may 2012. They want me back every 3 months. I was told after a year I would know what my memory would be like long term. Natural progesterone cream (yams, aloe Vera) helped with memory... Wasn't sharp but the cream makes me sharper.

I had alopecia as a condition before chemo with stress. I lost my hair with chemo but it came back. I retired this February and with the stress... Alopecia. I get scalp injections with alopecia. Still some small spots from February. Taking way longer this time.

Fatigue is why I retired at 62 rather than 65. Too much travel with my job.

matt profile image
matt in reply to Dlindquist54

Thanks Dlindquist54 and I appreciate the feedback. - it sounds like you've got a lot of experience of how you've dealt with things since 2012 that may be useful for others. I hope there's time (and energy) to enjoy the retirement!

Dlindquist54 profile image
Dlindquist54

Oops... I finished R CHOP May 2013. It took a while to be diagnosed. I was first diagnosed with bronchitis, then pneumonia twice, then they thought I had ovarian cancer, then thought maybe pancreatic cancer. The biopsie showed Lymphoma in early 2013. A medicine man told me where it was, what it was, treatment, medicine he could give, and outcome in 2012.

I am enjoying the slower pace of retirement and I am continuing to transition. I was in a high stress job.

I am taking essiac (ezzeac) daily and that helps my immune system. I am familiar with chaga and have drank the tea for a short while. I eat more of a plant based diet. Take extra d, plus calcium with d. Walk on treadmill for 25-30 minutes most days, lift light weights a couple days a week. Occasional yoga/taichi. I use a chi machine weekly. 15-20 minutes.

I have air purifier and plants to take toxins out. Aromatherapy occasionally. Especially thieves, and frankincense.

I have 12 step support, along with family support. My culture is important and I stay in touch with traditional healer.

I just recently started counseling after almost 20 years without that kind of support.

We told the farmer that farms our land that he could not use weed killer on our land or anything without consultation.

I stay away from things I am now sensitive to. (Various airfresheners/scents, smoke, cats, dogs, some detergent)

Denise

Dlindquist54 profile image
Dlindquist54

4 month checkup this week was great...

Report back now every six months! No yearly CT scans🎈🎈🎈. CT scan good from last year! No changes❤