When you're first diagnosed with blood cancer it can all be a little overwhelming. At a time when you're trying to deal with a multitude of emotions you're also bombarded with a whole host of new information which can be hard to take in. Fortunately there are support networks and services out there to help but these aren't always easy to find. Where do you look for them and how do you know which ones are useful and/or applicable to you?
Ultimately there is no one service or support network that is more valuable than any other and it's important to appreciate that what works for someone won't necessary be beneficial to you, too. The important thing is that support and services in addition to your primary care team are available should you feel that you need them. Read on to find out which support and services other patients have found particularly helpful:
1. Local haematological suppport groups
Carol Miller decided to join her local haematology support group to help her come to terms with her treatment and found being able to talk to others who were going through or had already gone through similar experiences as she'd had enormously beneficial.
There are many local support groups out there for patients and their family members many of which can be accessed directly through your primary care team at your treating hospital. Leukaemia Care also has an excellent list of available support groups for all blood cancer patients which is well worth a look and is accessible here.
Maggie's also have centres throughout the UK that are an excellent place to meet and talk to others about blood cancer in your own time.
In addition to face-to-face support groups there are a number of online support groups that may also be worth pursuring. The CML UK facebook group, UK Hodgkin's Lymphoma Support Club and the UK non-Hogdkin's lympoma support group are particularly active but there are many others available and Patient Experience team would be more than happy to assist you in finding possible groups.
2. Talking to a psychologist
Watch and Wait SLL patient Kate Giles has found speaking regularly to a psychologist a key part of her coping strategy that helps her deal with the uncertainty of not knowing if or when her blood cancer might develop.
Chuckie Schwartz was in complete agreement with the importance of seeking pshychological support both for yourself and the benefit of your friends and family members.
Many hospitals - particularly the larger teaching hospitals - will have an attached clinical psychologist that your clinical nurse specialist can refer you to. The charity are working hard with healthcare professionals to extend this level of support to all hospitals but in those hospitals where a clinical psychologist is not available currently they will still be able to put you in touch with a psychologist elsewhere.
3. Support for carers & family members
Rosalind Niedt identified the importance of seeking out support for the main carer and family members writing:
This was an area of real importance to patients during our Patient Need survey and there are a number of support services available who can provide assistance to carers and family members in a number of ways from counselling right through to more practical support and advice on things such as the Carer's Allowance.
Carers UK is an excellent starting point for support and advice for carers while our friends at Macmillan have an excellent support and information section on their website that is useful for both patients and their families.
4. Yoga, meditation and well being
Jonathon Tarascio has found that getting involved in yoga, meditation and basic counselling have all had an enormous benefit on his mental well being and approach to treatment.
Sadly these services weren't offered to Jonathon by his treatment team in Australia and were things that he discovered for himself. In response to this Jonathon has set up the Green Button Foundation which works with the social workers of our affiliated hospitals, to identify patients and families requiring financial assistance and will make recommendations for the type of support required for them.
5. Blood cancer charities like us!
Carolyn McIlwaine got in touch to say just how useful she has found charities in terms of support for her and her sister who is currently awaiting a bone marrow transplant after a successful clincial trial which we helped her source.
There are a number of fantastic charities available to help support you in any number of ways and our Patient Experience team can help you find the support and information that's most appropriate for you and your needs. They're available Monday - Friday from 10 -4 pm on 0808 2080 888 and are also contactible at any time via email at firstname.lastname@example.org.
A huge thank you to everyone that provided recommendations and advice for this blog. You can read all the comments in full on the original Have Your Say post on Facebook.