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Erdheim-chester disease

A little update. Things stalled a little bit when Haematology left a message saying that they had rejected my treatment, as it “wasn’t something that they do???” Obviously disbelief set in as it had already been approved. I have now been referred to Oncology, had my appointment 2 weeks ago, and 4 appointments this week. It sounds like D-day is Tuesday for my treatment to start. (Dabrafenib and Trametinib) I’ve also had my pension decision through with the Fire Service…Finally! Upper Tier pension. I’m now on my 4th counselling session with the Firefighters Charity. Their support has been brilliant. I wish I could say the same for my employer!..I’m feeling slightly more positive now things seem to be moving in the right direction and treatment is imminent.

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@Gary thanks so much for the update, isn’t everything a stressful battle at a time when we could do without the stress.
Stress fatigues me let alone all the medical appointments you have had recently.
So Tuesday is ‘D’ day, wow.
I am so glad you have got your Upper Tier pension through at last
I hope that your counselling sessions are helpful, they helped me.
You firefighters charity does sound supportive and brilliant.
Your treatment from your employer must leave a nasty feeling after all those years of loyal service.
I will be thinking of you Tuesday, please keep updating us and look after yourself.

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Hello @Erica,
I’m feeling better in myself now things are moving again. I do have a feeling that this is the quiet before the storm though. My counsellor thinks that because I was so fit before the diagnosis, that it’s paying dividends now. You are right in saying that I will be leaving the Fire Service with a bitter taste, something I thought would have never happened.

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Hi Gary, i am glad that your pension is been resolved and the best of luck with your treatment. I certainly sympathise with you as i am currently experiencing a similar issue on obtsining an ill-health pension from local government Dr.
I have Chronic lymphocytic leukaemia (CLL) and on watch and wait, my specialist and GP have advised i retire as a Traffic Officer permantely as returning to work is not an option. However the LGPS Dr has ondicated i could do another job from home of at least 30 hours or more per week, i don’t feel i have the energy to do this. In the last 2 weeks i have developed a substantial tiredness and constant light headache, just had all bloods done today and meeting my GP next Tuesday. The anxiety you have suffered from, i can fully understand
Good luck
Kevin

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Hello Kevin, thanks for the reply. I hope that you get yours sorted soon. To be fair, the 3rd party Dr who has to issue the final certificate for retirement was only on the phone for 20 minutes to come to the decision. She even disagreed with my Occupational Health because from the Specialist consultant notes that she had that I had obviously deteriorated.
I had a setback this week though. I signed all the paperwork and waited for the appointment later that day. The Oncology Pharmacy rang saying that we may as go home as there’s nothing for me as I’m getting my treatment on “compassionate grounds” They couldn’t tell me when they would have them. Disappointed and deflated. The Firefighter Charity has been brilliant and mentioned, like Blood Cancer UK today that I am going through grief, for the person I was.
I really hope that you get what you need. The undue stress is unbelievable, but we both know what each other is going through.
Best of luck
Gary

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Oh @Kevbecs and @Gary I really remember the unbelievable stress, fighting, exhaustion and therefore fatigue as well that I went through 13 yrs ago as if it were yesterday, it tarnished my memories of a job that I really loved and yes, it left me with a bitter taste.
@Kevbecs with Chronic lymphocytic leukaemia (CLL) on watch and wait I think medical people, unless they have had special blood cancer training, do not understand what it is like to live with the symptoms.
Look after yourselves.
I don’t know what others think?

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Thanks Erica, i will update as things develop, i am hoping that my blood tests will not indicate a downturn and that it may only be stress related
Thank you so much
Kevin

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Hi @Kevbecs since my diagnosis I do not deal with what personally stresses me well and it definitely affects my fatigue, everything gets all too much. Who knows with my blood tests???

I think that the worry of the current situation trying to get the 3rd party doctor to agree to ill-health is on my mind 24/7. My GP is very supportive, this tiredness and constant headache seems to have got significantly worse over the past 6 weeks. I am grateful for your support. I am also concerned as i have been waiting 12 months to have a small BCC on my face to be removed

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