Steriods

Dear debz, I noticed you hadn’t received a response to your post so I hope you don’t mind me responding. Have you been referred to the palliative care team in the hospital or your local hospice. The hospice is for more end of life care and they have more time to discuss pain relief, side effects of medication and help you can receive in your own home. Doctors always seem so busy and they sometimes don’t have time to give you all the information you need. As for steroids they can have quite a dramatic effect in terms of mental energy, but can cause insomnia if given at high doses. Maybe they feel they can stabilise your mum in a different way. Good communication is essential so don’t be afraid to ask questions.

best wishes

jane

Hiya Jane,

Yes we have the community nurses and Macmillan coming in daily, thankyou for replying, the steroids are really helping with increasing her appetite and making her feel generally well, but are showing other side effects like her feet swelling, i think this is why they are talking about taking her off them, I suppose I'm just scared that's when we will deteriorate x

Maybe you could talk to the doctors about keeping her on a low daily dose in order to encourage appetite as maintaining weight is important.  I was on a very high dose at one point and after a chat with my doctor he agreed to reduce them. I’m glad to hear your are receiving help in the home. I attend my local hospice once a week and it has helped me cope enormously with my own prognosis and treatment. I find the doctors are much more flexible than you might think, it’s all about quality of life for people in your mums position. I wish you and your mum all the best and hope you can spend lots of quality time together.

best wishes 

Jane

Hi , I’ve just come across your post and hope You and your mum are doing ok.

I have only had experience of tablet steroids, this was when I was in the first diagnosis stage. I had been assessed as to ill to start treatment and the steroids they really perked me up, but made sleeping more difficult, I needed to reduce them  and stop them I order to start targeted therapy treatment back in 2015. 

I was thinking that the supporting someone with endurable cancer might be a group that has experience from a carers perspective of steroids and I noticed you were asking about hospices when I looked at your latest posts. if you are still in need of any reassurance or answers, (the link looks grim I’m afraid but don’t be off put by that you could have a peak and see if the group suits your circumstances) I wondered if the link below might help.

https://community.macmillan.org.uk/cancer_experiences/nearing_the_end/discussions

The ask a nurse section  https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_a_nurse/discussions Might also be a good place and the phone line. 

Best wishes