Steroid use and mobility loss

Hello Millie11

I hope you do not mind me replying as I had a different cancer to your Mum, but I hope that by doing so it will move the post back to the top and someone with more similar experience will see it. 

I am really sorry that Mum was diagnosed last year with lung cancer. It must be hard for you both. I am sorry to hear that Mum has had some falls and this has lead to a deterioration in her mobility. I can understand how devastating this must be for Mum. Am glad that the lower dose of the steroids has meant that she is less confused and is sleeping less and eating more. 

I am glad that you are finding that the Macmillan team have been helpful. Hopefully by responding on here you will hear from people who have experienced similar to Mum. 

In the mean time if there is anything else you need, please do ask.

Jane

Thank you for your reply. My message was about all over. The last three weeks have been such a blur. 
My mum fell, appeared to decline quickly, then started steroids. After four days of being confused in them she has now settled down and eating more that she ever has! 

Am pleased that things have settled down a bit with Mum now and the eating is a good sign that she is feeling a bit better. I have taken a steroids several times now and when they get the doses right they do seem to work well. 

when i was on steroids i could not stop eating, and i could not sleep but had lots of energy

My Mum has stage 4 small cell lung cancer which has spread. She is on 6mg of Dexamethasone she has become very weak, confused and can hardly walk. She is due 3rd line chemo tomorrow and I am really worried this will make her worse. I stay with my Mum and I can only work 2 days a week now. It's hard watching her deteriorating so fast and not really eating and drinking. It's really hard not knowing what time she has left.

Hi Milie,

I am so sorry to hear what your going through with your mum. I do however understand what you as a family are going through. My mum has a stage 4 glioblastoma brain tumour. She was diagnosed in October 2021 and has had treatment however it is inoperable. She had a severe seizure last year which left her left arm totally paralysed and she struggles with her left leg. She has also had to struggle with cellulitis over the last 3 weeks. Like your mum she has had a couple of falls out of bed and over last couple weeks her mobility has declined so much. It is taking two of us to transfer her from commode to chair to bed. I spoke to consultant today as I was worried tumour had progressed which was causing mobility issues however this is not the case. The tumour is stable and he could not tell me why her mobility was so bad. She is on 2mg of same steroids as your mum and like your mum if she has to many she can not sleep which is why we try and keep her on lower dose. My mum is so frustrated and low with the situation she had gone from doing everything to struggling to do anything by herself.  I genuinely don’t think anyone can say why this occurs as it differs for so many people. Just be aware you are doing an amazing job and as a family you will do your best to get her through this as best as you possibly can xx

Hi, thanks for your reply. Sorry to hear your mum is not too well either. I hope the chemo is positive for her. 
my mum has gone into the local hospice for assessment and their intention is to carry out a CT scan of her head. Now the steroid dose has been reduced the effects are less. 
It is so difficult managing work and caring. I find it so hard not knowing what is to come and when. 

Hi, sorry I am not sure I am replying direct to the messages!

sorry to hear you are going through a difficult time. It is so true what your say and I relate to that. Seeing your mum go from doing so much to having to have everything done for her is very hard. I find the not knowing why things have happened quite difficult. 
the last four weeks our lives have been turned upside down. 

im worried the chemo will make her worse. she is so weak can hardly walk and very confused.

I honestly struggle with the not knowing and sometimes it really is mentally exhausting. my Mum has had 3 rounds of chemo and she was fine on it but it does differ for different people. Your love and support will help get through whatever is around the corner x