@SuBloodcancerUK thank you. We’re very stressed about it all. We were not able to speak to his consultant. They are all very busy understandably. We forwarded all the information from the nhs, nhs inform etc to his employers. They know he has hairy cell but are not willing to listen until he has an nhs letter and have forwarded it to them.
9 month after he had his chemo 2 years ago they told him he had to resume the 24 hr for two weeks in 5 Rota or his job would be terminated. He was still getting very tired so it’s a miracle he didn’t crash the car doing call outs at 1/2 in the morning after a full shift. They are not good employers. He’s been looking for other jobs but he’s not qualified for most.
I’ve wrote to my local mps to see if she can help. Scary times.
@Jac I’m so sorry to hear this, I can only imagine, this is likely to make a worrying time even more worrying. Is there perhaps anyone else within the healthcare team you could speak to, if you can’t through to the consultant at the moment? for example, the clinical nurse specialist? it could be that they could provide something in writing whilst he waits for the official letter?
Hi Jac, a warm welcome to our community forum, I see @SuBloodcancerUK has helped with your question, but you must both be feeling very anxious. Some employers have not had this unprecedented situation before and actually need education from official organisations, especially ones offering essential services, but that does not help your anxiety and stress.
We are all here to support each other through these times. The Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you try to get back within one working day. Stay safe both of you and let us know how you get on.
Jac, I’m really sorry to hear this, and I hope it’s resolved soon. The fatigue from HCL can be incredible, and I hope your husband isn’t finding it all too overwhelming what with the circumstances and increased working hours
Hello @Jac I was just wondering how you and your husband are getting on? Have you been able to talk things through with your husband’s consultant and has his employers been any more supportive?
I do hope you’ve both been doing okay.
Alice
Hi @Jac we just thought we would check in after my colleague Alice had last been in touch with you. How are you and your husband?
Apologies for my late arrival at this thread, and for overlooking it previously. Like HCL, Jac’s husband and MissP143, I also have Hairy Cell Leukaemia, and had chemotherapy in 2012 and 2018. I am also in remission, and wondered whether I should be shielded. I appreciate how frustrating it must be to be unsure whether to shield, and when (or if) you will receive a letter from the Government. I received one letter in late March, and a second (follow up) letter in late June. From this thread, it seems that communication has not been consistent or clear. I would agree that many medical staff know little or nothing of HCL - so it is best to trust your haematologist.
Thanks, Erica, for your question. My wife and I have stayed healthy, both physically and mentally. I have not been short of things to do, and am very grateful for a garden, quiet places to walk locally (early in the morning), and for helpful friends and neighbours. We have much to be thankful for, but have missed human contact, and the opportunity to do our own shopping.
I do! Join this very very useful FACEBOOK group:
Contact me anytime
[quote=“MissP143, post:15, topic:2382”]
The hairy cell leukaemia foundation in the USA advises that with HCL after treatment with cladribine or pentostatin on average it takes 4yrs for the cd4 count to normalise
What is the cd4?
Hi @Noa I cannot answer your question, it might be one for your medical team.
However personally I am always very wary of non UK sites and treatments as they are often different to protocols and treatments licensed in the UK, that is why I stick to reputable UK sites like Blood Cancer UK.
Look after yourself