Palliative care isn't just for the end ... - Leukaemia Support
Palliative care isn't just for the end of life. How long (if at all) have you been receiving palliative care? Help change misconceptions
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Palliative care seems a much misunderstood phrase by patients. Many believe or have a preconception that it only applies to end of life scenarios to help patients live comfortably and die with dignity.
When in fact it is part of the day to day supportive care delivered across all blood cancer. Palliative care is about symptom management and improving the quality of life of a patient. To palliate symptoms, aid with managing treatment side effects and support physical, emotional, spiritual needs .
Chronic cancers may be incurable therefor chronic leukaemia treatment and therapies are actually palliative as they suppress symptoms rather than cure the disease. Acute conditions often curable through an SCT or aggressive therapy regimens require patients to receive palliative care to cope with treatment side effects.
'Due to the often aggressive nature of acute leukaemia, and the subsequent aggressive treatment, palliative care can sometimes be overlooked or seen as not necessary, as a cure could be possible. However, palliative care does not always mean end of life care' leukaemiacare.org.uk/suppor...
All care for CLL is palliative, since in fact, none of the interventions are intended to cure the illness, merely to make the symptoms easier to live with / less troublesome. Therefore, all the care received in our case has been palliative.
Never been offered palliative care in all of the last ten years since being diagnosed and three years since I had FCR (started 4th May 2016).
We joked then about May the 4th go with you as we apprehensively sat waiting for needle to be put in to start infusions 
At the end of FCR we had a chat with Macmillan nurse who did this holistic survey on an Ipad but I couldnt be pput into any category as I have multiple problems and that was it!!
Fast forward to our third consultant who we saw last week he's now started listening to me saying I cannot handle the constant infections I'm getting and draining fatigue.
We are back to see him in six weeks time as to what happens next as it's been suggested I have ivig??
Dave
Tell you what, I wish the British doctors were better at really thinking holistically about the symptoms that are causing us problems. I would love to try some speed or some other stimulant, or maybe be allowed steroids from time to time. The only time I have felt anything close to normal energy levels was when I have needed steroids for other things....
What does ‘palliative care’ and ‘end of life care’ mean?
Here, Leukaemai Care explain more leukaemiacare.org.uk/suppor...