ET update

[LightOfErendil]

My platelets are now just under 400. Great news and my next check up is in 3 months. I know I’ve mentioned the fatigue before but I keep getting slightly different answers and responses to it. Some say the hydroxycarbamide is making me tired, another says it’s the condition. Does anyone know?? The consultant yesterday said I’d probably have the fatigue forever but to live life as normal. Easy to say! Still the chemo is working and I’m pleased. However I went shopping this morning and found I was increasingly weak and tired, really leaning on my stick. Connect out for hours this pm. A little disappointed my consultant wasn’t more understanding (although they were v busy yesterday). A case of, great your bloods are perfect, stay on this medication and goodbye.

I know I shouldn’t complain - my condition could be so much worse - but feeling a bit down.

[2003UK]

Hi, Great news about your platelets and blood tests. I think many of us have fatigue and learn to manage and live with it. However, firstly, I would say from someone that lives with fatigue, that we are evolving all the time and you have obviously been through a lot emotionally, medically and physically and I have found my fatigue has an immediate effect but also a delayed action and it takes me a long time to build back up and re-charge my batteries. However, on a day to day basis, I now do not deal with what stresses me well or what emotionally, medically or physically wears me out and then my fatigue can set in immediately or up to 48 hrs after I have overdone it. I now choose not to do anything socially in the evenings and I am known to have the odd nap. I have also found, although there are times I need to duvet dive, there are also times when I need fresh air, gentle exercise and interaction with people and that helps alleviate the feelings of my fatigue. We are here to support you and the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Be kind to yourself and I have found pacing myself helps, and treat yourself.