Andy Jackson
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10 tips for newly diagnosed blood cancer patients

Andy Jackson
Posted by
24 Nov 2014

Diagnosis is an extremely difficult time for patients and their families and it can all get understandably overwhelming as they try to take on board the information the doctors are providing whilst at the same time trying to come to terms with the fact that they have blood cancer. 

Last week we asked supporters on Facebook what advice they'd give newly diagnosed patients and the response was overwhelming, generating all sorts of tips and advice. Here's what you had to say:

1. Stay positive and never give up

Adopting a positive mental attitude and staying strong no matter what was by far the most popular piece of advice to be offered, coming up time and time again. Childhood leukaemia survivor, Kerry-Louise Gore wrote:

However, as Simon Budd made clear it's important for patients to know that it's not possible to be positive all the time and it's normal to be anxious at times:

2. Accept offers of support & help from others

Accepting support and help from those around you whether that be friends, family, work or nurses was also universally recognised as important for a number of reasons not least the fact that you can't do it all on your own. Mandy Deloughrey wrote:

3. Take things one step at a time

The nature of blood cancer and it's treatment is such that you'll have times when you feel good and times when you feel bad and much as you'd like to you can't predict when these will be. The key is to take things one step at a time as AML patient Teri-Lyn Stewart explained brilliantly in her comment: 

4. Don't be afraid to ask questions

When you're diagnosed with blood cancer it's completely understandable that you'll have lots of questions on a whole variety of areas many of which will be answered straight away by the medical team looking after you. However with everyting that you're going through, the chances are that not all of the information will sink in straight away whilst many questions will spring to mind after your appointment when you've had a chance to think more. The solution? Get a notebook to write things down. Sue Trudgian wrote: 

Asking questions is also key to understanding your condition and allows you to gain a level of control over what's going on. As Steve Wright suggests, it's important, too, to challenge answers if they don't make sense or you aren't happy with the answer - this is your life they're talking about!

5. Don't use Google

Google is fantastic in a number of ways but not for finding out about blood cancer as there is lots of misinformation and negative stories out there that are not helpful. As Nic James advises, it's best to ask your consultant about any worries or concerns that you may have or failing that a respected charity like Leukaemia & Lymphoma Research or Macmillan:

6. Set goals & try and arrange special days

Setting goals big or small can really help you to channel energy, provide a focus and give back an element of control or ownership over the blood cancer which many patients understandably feel they lose once they've been diagnosed. ALL patient Sabina Bigolin wrote:

Lymphoma patient Louise Smith also had some great advice about setting up and going on special days out to give you something to look forward to or reflect on to help get you through more difficult times. She wrote:

7. Accept your diagnosis

Whilst understandable, lingering on your diagnosis won't make it go away and takes up valuable energy that would be better served elsewhere as Anita Marrett made clear in her comment: 

Accepting your diagnosis early also takes away a lot of stress and frees you to concentrate your energy on fighting your cancer as Kate Giles explained brilliantly in her comment:

8. Involve others

Blood cancer affects the entire family and in many cases it can be more difficult for friends and family members to come to terms with diagnosis than the patient themselves. Hodgkin lymphoma patient Jodi Field suggests that accepting their offers of help even when you don't want/need it can be beneficial:   

Debbie Stevenson also had some really good advice on how parents with blood cancer can involve their children. She wrote:

9. Exercise if you can

The virtues of exercise our well known to us all with the endorphin release proven to help improve mood. When you're going through treatment exercise isn't easy but anything you can do can really help as Lee Ramsey made clear in his comment:

10. Express your feelings

Expressing your feelings whether that be by talking to others face-to-face in a support group, keeping a Patient Diary or writing a blog that you share with others can be an extremely beneficial and cathartic experience. It can help you to make sense of your condition and how you're feeling and also helps others to understand what's going on. Sarah Campling wrote:

Ultimately there is no right or wrong way to react when you're diagnosed with something like blood cancer but there are lots of support mechanisms and advice out there to help patients. The advice offered in this blog is just a fraction of the responses that we received in reply to the original Facebook post while there is also lots of useful information for newly diagnosed patients in our Patient Information section.

If you've got any additional tips or advice for newly diagnosed patients, we'd love to hear from you! Have your say in the comment box below:



Great blog Andy which really sums up everything I wish I'd known at the point that I was diagnosed. Thank you for putting everyone's advice together so well!