Every day advice for patients receiving treatment for blood cancers. What would you expect?

[LCNurse]

Leukaemia care are developing a booklet for patients who have a blood cancer and are receiving chemotherapy. ( Hints and tips for new patients.)

Please let us know what you would have liked when you were diagnosed and receiving treatment.

[LizofLondon Champion]

I'm not yet receiving treatment for my CLL but have been told to expect to do so within the year. I'm not at all sure what I can and can't do during the 24 week process.

I understand there will be side effects. I've no idea what they could be or the range of possible debilitation. e.g could I go and stay in Cornwall for a couple of weeks between the weeks when I'm taking the pills? Would it be ok to go to a restaurant? Can I go to a supermarket?

If the treatment goes well, what will I be able to do? If it does not go well, what will happen next?

Are there helpful tips before the chemo starts?

Are these helpful questions?

LizofLondon

[fieldmeadow]

Some patients prefer to have some control in treatment options and timescales. Obviously, you need to listen to your consultant but if there is a choice of appropriate treatments then weigh them up TOGETHER. That way you feel you are not losing control. Others are happy to go with the flow and that's okay too!

Have someone accompany you to your first treatment session as you don't know how your body will react - we all react differently - and you may not be up to driving yourself home or tackling public transport alone.

Take a bottle of water and some light reading as first appointments can be long.

When at home - your body will let you know when you need to rest and when you are up to doing something. It's very important that you do not feel guilty about resting if that is what your body needs - after all, you have had powerful drugs pumped into you. It also gives opportunities for family and friends to help you by eg. cleaning the kitchen, driving you to one of your hospital appointments, shopping or walking the dog - as such tasks will allow them to feel more supportive of you.

Finally, having your first chemo session is a really big thing but I was surprised by the lack of empathy from oncology nursing staff who were so used to pumping patients with chemo. I wanted a nurse to ask me how I was feeling about it. Every hospital is different but ...

Hope this helps in some way.

[LizofLondon Champion in reply to fieldmeadow]

Brilliantly helpful ! Smashing. Thanks a lot

LizofLondon

[Andrew8]

I would hope that there will be some detailed advice about diet, but presume this will have to be different advice for different conditions.