I have recently received a diagnosis of Myelofibrosis and my haematology consultant advised me that one of her haematology nurses would be referring me to MacMillan for some support, I haven’t received any communication as yet and wondered if you could give me an idea of how long it is likely to be as I would like some support to apply for PIP so that I don’t have to work as many hours as I currently do
Hello Orchard25 and thank for reaching out.
If you’ve been referred to our support line, you should be contacted within a few days, but it might be best to clarify with the nurse what kind of support you’ve been referred for. The easiest way to speak to us is by calling us on 0808 808 00 00. Our lines are open 8am-8pm 7 days a week although our Money Advisers who can speak to you about PIP and other benefits work 8am-6pm Monday-Friday. They will need information about your income, outgoings and any savings/investments you might have in order to perform a benefit check. We also offer emotional support and have a team of Cancer Specialist Nurses if you have any clinical questions.
I was sorry to hear about your diagnosis of Myelofibrosis Orchard25, how are you just now? Do you have much support around you? We’d be happy to discuss things further with you.
Take care.
Alex, Information and Support Adviser
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.
Dear Orchard25
I am so sorry to hear you are struggling, with, what sounds like a very difficult time for you. You mention feeling scared, which is understandable, especially when you have a "number of conditions" to consider.
I am wondering if your Macmillan referral, may be, within your hospital? If this is the case, you may like to raise an enquiry with your local PALS team. This team helps to build bridges between patients and their healthcare team. The link will help you find your local team: you may ask if there is an appointment waiting for you.
As Alex has said, you are very welcome to call the Support Line, for emotional and/or clinical support on 0808 808 0000 from 8am to 8pm on any day. We are not counsellors, but, we will give you a safe place to talk about how you are coping. Another option is our live webchat, the Information and Support team, Nurses and the Money Team can all be reached via the link. The Money Team are Monday to Friday from 8am to 6pm.
You may also like to reach out to a local group for support; sometimes a face to face option can be reassuring when you feel scared. Macmillan In Your Area allows you to use your postcode to search for all the support around you.
Orchard25 I can appreciate that you are looking at your working hours, and perhaps making reasonable adjustments, may be a good option for you. You may find our page on Work and Cancer is helpful, again you are welcome to talk through these challenges with us on the Support Line by phone or webchat.
Orchard25 please feel you are very welcome to keep in touch: our Support Line are there for you every step of the way.
I wish you all the very best.
Take Care
Liz
Macmillan Cancer Information and Support Advisor
