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Erdheim-chester disease

We finally got away for a couple of weeks mid September. I was hoping to get my head around the diagnosis after being as fit and energetic as I was.That didn’t happen! I feel like I’ve aged 20 years in 12 months. I contacted the Firefighters Charity when we got back and they have been brilliant, offering counselling and welfare support. I wish I could say the same as the Fire Service. Not Local Authority, but Military based. We were privatised in April 2019. No follow-up on how they can help, or to see how I’m doing. I have a Medical Assessment 2/11/21 which will (hopefully) determine what Tier pension I will get. After nearly 18 years Service I can’t wait for a decision and to leave as soon as I can. I never thought I would be saying that when I joined. It seems we are just a payroll number at the end of the day.

Thanks,

Gary

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Hi @Gary we know the saying when you are diagnosed that ‘you find out who your friends are’, perhaps your experiences are about your work and your charity.
You say that you have a medical assessment on 2/11/21 perhaps that gives you time to write down everything you would like to say for your case. Perhaps you will have to be pleasantly assertive, 18yrs of loyal service is really worth a lot.
You were fit and energetic before receiving this extremely rare life changing blood cancer diagnosis, you are not just a payroll number, you were a exemplary employee.
I know that feeling of ageing 20 years in 12 months, it was the shock of the diagnosis and also realising that life would never be the same again…
Please let us know how you get on, we are here to support you and the Blood Cancer UK support line details are above .
Look after yourself.
Can anyone else relate to @Gary’s post?

Hello @Erica , thanks for your reply and kind words. I will definitely keep you all updated. Knowledge is power and as no Doctor we have spoken to has ever heard of ECD, we will be fully armed :wink:

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Hello @Gary. It’s so hard to get your head around a diagnosis isn’t it. Especially if you are reminded off it by the way you are feeling physically and on top of that, having to deal with work issues. Hopefully, once work is sorted, you can focus on you. Please keep us updated on how your meeting goes on the 2nd :blush:

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I was made medically retired from the railways due to a rare Lymphoma and have only just heard that they are looking into my ill health pension retirement request it’s only taken them 11 months!I would say that they are blaming coronavirus but they haven’t even bothered to do that.If it had been something like pancreatic cancer I’d probably be dead by now!

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When the Defence Fire Service was privatised in April 2019 our “New employer” failed to have everything in place for anyone going down the Ill Health Retirement route. Although our pension was TUPE’d across. Funnily enough they didn’t see it as their fault, until I had no choice than to get the Union involved.

What bugs me is when you tell anyone that you have a blood cancer, the reaction seems to be that you’ll get over it!! If you told them you had lung cancer etc their reaction would be totally different.

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Morning @Gary. I think blood cancers are one of the ones that are least known about and understood. I know I had to educate a lot of people. Hopefully all the work Blood Cancer UK do and other charities continues to raise people’s awareness.

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I don’t know about that!Most people know that blood cancer is pretty serious and not something that you want to have! Infact words like leukemia and lymphoma fill people with dread.Lung cancer is a solid organ cancer so ,unless it undergoes metastasis, not spread throughout the body like leukemia, lymphoma and myeloma.Most of the blood cancers are very hard to cure because they are systemic and not in one place although they have had a lot of success with Hodgkin’s Lymphoma but not much with Non Hodgkin’s particularly those originating in the T Cells.I have read that although they can eliminate Hodgkin’s Lymphoma the severity of the treatment stokes up a lot of health issues in the future like secondary cancers slipping in.

I suppose experiences differ from person to person. My family definitely had little understanding of lymphoma.

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I’d heard of Lymphoma before I was diagnosed with it and knew it was a bad thing but I didn’t know about all the different types.I think that Leukemia carries a greater social terror because of childhood Leukemia and you often read stories in the press about kids diagnosed with it at a young age but you, although some must but I suspect it’s uncommon, hardly ever read about them getting lymphoma and myeloma.

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