Helpful and Inspirational

For all of you new to the Hodgkin’s Journey – or old friends with Mr. Hodgkins – I thought I’d post some links and info that you might find helpful.

For inspiration – follow the story of Ethan Zohn. A true cancer fighter and survivor, even when faced with Hodgkin’s relapse: Ethan Zohn, Cancer Hero: What does his cancer’s recurrence really mean?

We all struggle with what to say to those who are sick. Even as someone living with cancer, I am still at a loss for words as to what to say to support others. Here’s some advice about what not to say: ‘You Look Great’ and Other Lies

The latest treatments available to Hodgkin’s patients are all listed in this article – very insightful: Novel Treatments to Watch For

Marrow Donor Programs. If you are well, go get tested. If you are looking for information, these sites are very helpful.

A new friend passed these forms onto me from Premiere Oncology. Although I’ve never had contact with this organization, I am impressed by their organization of useful information for cancer patients living in the Los Angeles area, and abroad. Support groups, information for those uninsured and financial assistance information for patients and caregivers – Premiere Oncology helpful forms

Clinical Trials.gov – Because your doctors don’t always know what is going on in every trial and there are more treatment options every day. Be your own advocate. 

Hope it helps in some way. Feel free to add your own resources and links in the comments section.
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3 responses to “Helpful and Inspirational

  1. Good post on what not to and what to say. I’m guilty of the how can I help and thoughts and prayers sometime. But I do love you (+1) :).
    Hope things do get better. How about them Eagles? (+2)

  2. Hi there, first time I’ve read your blog. I’m a hodgins sufferer myself, now in my second time after being told 13 years ago I wasn’t in remission – because of my age (34 at the time) and the treatment – I was CURED! Well ho, ha here I am 17 months into my second time! I’ve had 3 out of 6 of the chemo treatments – my body couldn’t take any more more because of the treatment 13 years ago – and and an auto stem cell transplant. That was a year ago, I’m now ‘In remission’ but continue to need frequent blood transfusions, although less now, only every 4-6 weeks, not 3 times a week! Now overloaded with iron after 200+ transfusions, using a drug (Deferasiox) that in itself can be very dangerous, to shift the iron. Don’t get me wrong, without the treatment I’d be an underground gardener, but this time around the treatment was almost worse than the disease. I now have 1.5 lungs after the lower part of my left lung collapsed due to a chest infection, and was last in hospital last week due to picking up e-coli which they thought may be coming from my Hickman Line – which thankfully it wasn’t – Thank God, because what a present from heaven a Hickman is! You are so right about people’s reaction to cancer (and indeed, all serious illness) it is either pity or ignorance by the whole. Kathleen (my partner – may The Lord bless her for all time for her support!) is often asked ‘How’s Gary?’ and when she says something like “yeah, he’s doing ok” it’s a case of ah, good he’s well now, no need to ask any more, like it’s the cold or something similar. No idea about the months and months and perhaps years it takes to fully get your life back. I’ve been lucky in my work, they have fully supported me, I’m an IT Consultant, and they’ve set me up working from home with an internal phone etc. so I can continue to contribute to life, my home life and the company, working remotely from home. Since I’m online with these comments… I must thank thank the the staff, nurses and doctors of wards 1 & 8 of Edinburgh Western General Hospital (Scotland’s Center of Excelence for Cancer) for their excelent work – you are irriplacable! And to you my man – THE VERY BEST OF ALL THE LUCK THE WORLD CAN GIVE!!!!

    All the best!
    Gaz
    (Gary Heyworth – g.heyworth@gmail.com)

  3. Dear Stephen – this week I received my Callanish newsletter with your awesome account of a week on retreat. I’ve been embraced by Callanish community since my first retreat in ’08 – that retreat saved me. Uplifting – yes, powerful – yes, better than any kind of treatment or med – yes. I don’t think there’s a thought you expressed that doesn’t make me smile in agreement. While I’m so grateful that you & Jen found Callanish, it breaks my heart that you have had to look for and find this type of community.
    Do you live close to Vancouver? I always wish I could meet, talk to and support everyone who has ever been on retreat. We all speak the same language – that in itself is so very liberating
    I am hopeful that your transplant went well and that you’re well on the road to recovery. Words are hard – that doesn’t really express what I hope for you! I’ve only had the chance to read a few of your post so far and am looking forward to more reading and checking in on some of your links – especially the ‘You look great… and other lies’ – now that one I could really do a pretty witty albeit sarcastic post on!!

    Sending Callanish vibes straight to you!
    Marlene

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