I wanted to repost this in case any of my network/connections are also suffering from the long term side effects from Hodgkin's Lymphoma treatment (which include more cancers, heart failure, lung damage, coughing up blood - these are just some of the gems I developed).
If you are suffering...
Eh hello, how come we haven't talked about this until now? #sharetheload
If you are not suffering...
That's great, you can be our allies.
My biggest beef is not the life changing illnesses I acquired, it's the huge gaps in awareness and support that puncture every healthcare system.
Check out these stats from a cheery paper entitled 'Late Morbidity and Mortality in Patients with Hodgkin's Lymphoma':
Results: At a median follow-up of 22 years, 227 of patients (30.4%) had died, 107 (47.1%) from HL, 120 (52.9%) from other causes, including second primary malignancies (SPMs) (n = 52) and cardiovascular disease (n = 27).
I am exactly, almost to the day, 23 years out from Hodgkin's. According to the above stats there's a 30% chance I could be dead (I'm not), if I had died (which I didn't) it most likely would be from a second cancer or my heart. I'm still here because of pure luck.
When I made it to 20 years out from Hodgkin's, despite spending half that time dealing with mouth cancer induced from the radiation, I was told, via email, that I was no longer a cancer patient, I was a cancer survivor, and was promptly taken off my hospitals books. It was akin to someone breaking up with you over a post-it note with the line 'Its not you, it's me'. Within a year of this 'break up' I went into sudden and severe heart failure and ended up back in the same hospital.
I now co-ordinate my own care, join up my own dots, I carry my own burden of care - But I shouldn't have to.
Hodgkin's patients treated prior to 2005 underwent pretty brutal treatment regimes that would not be replicated today. As patients we are now experiencing the brutal late effects. You can't just kick us off your books because the Hodgkin's itself is gone, what about the damage left in its wake! If you can't look after us in your cancer clinics anymore then build a survivorship clinic.
There's my gauntlet thrown down - I challenge the Irish government to create a cancer survivorship clinic.
I also challenge them to a duel!...(Just because I've always wanted to say that)
Stephen Donnelly Health Service Executive
#hodgkinslymphoma #cancercare #survivorshipclinic #cancerchallenge
We are thrilled to announce our first-ever conference for Hodgkin lymphoma survivors, their caregivers, and medical providers. This is a unique opportunity to connect face-to-face with both long-term and recent survivors and to engage in insightful conversations.
Want to learn more? Visit HodgkinsInternational.org or scan the QR code in the attached flyer.
Please SHARE this post and help us spread the word about this transformative event. Together, we can make a difference in the lives of Hodgkin lymphoma survivors, and cancer survivors worldwide!
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Vice President of Strategic Growth @ Significance, Inc. | Former SES|Board Member
1moAwesome Ali Reza Manouchehri