Hi , my mum was diagnosed with stage 4 lung cancer with brain mets in july, she was displaying signs of memory loss, confusion , she was also not showing any emotion. After diagnosis they started her on steroids to bring the swelling down in her brain and all those symptoms went away, i would mention all those symptoms to your mums gp. Hope this helps 

Hi, thanks for that. The consultant has already told us that my mum can’t have steroids because she has heart failure. Unfortunately mum can’t have any of the treatments due to her heart problems, we were told that mum would be an urgent heart transplant patient but unfortunately because her cancer is terminal it stops Mum being eligible for a new heart. I’ve promised mum that I won’t let her die in hospital but I’m now worried that if the cancer has spread to her brain, I may not be able to cope on my own. I don’t know what to expect if she has got brain cancer so I’m not sure if I will be able to keep my promise to her and this is worrying me a lot. 

Have the hospital put you in touch with the palliative care nurses? They are very good with discussing yoyr concerns? 

Yes they put us in touch with MacMillan. At first Mum wasn’t ready for the MacMillan nurses as she said she felt that would mean it was the end and she wasn’t ready to admit that. Eventually I persuaded mum to allow one of the nurses to visit and last week a nurse came to us but I wasn’t impressed. Mum was telling her all the symptoms that she had and the nurse said she would contact mums GP and get some steroids prescribed, luckily I was there as I said we had already been told mum couldn’t have steroids because of her heart failure. The nurse admitted to us that she hadn’t read mums notes and so she didn’t know the full extent of the problem. If I hadn’t have been there mum would have been prescribed steroids and that wouldn’t have been good. I think once it’s closer to the time I may try to contact Marie Curie to see if they can help in any way. I’m not sure I trust MacMillan now

The nurses we are in touch with are hospicecare nurses and the gp surgery put us in touch with them. They have been very good. Its so hard seein your mum go through this i struggle somedays to hold it together . You are doing a great job never doubt that .

Maybe I will try and get an appointment with Mums GP and see what she can offer. Thank you so much for your input, it’s been very helpful. I wish you all the best with your mum and I hope things can move as smoothly as possible ️

Our gp comes out to the house now to visit mum , i hope you get some extra support . Always here if you want to chat 

My mums GP went on maternity leave last week so I will have to contact the surgery to see if they’ve allocated Mum a new doctor. I think it may be time to ask about home visits now . Thank you so much, I really appreciate your help and support. I’m also here for you if you need to chat ️

Its a case of if you dont ask you dont get , and i just felt i owe it to my mum to do everything i can to make things as stress free as can be, her mobility was getting poor so i asked for home visits , the district nurses come out also to take her bloods. My mum is in bed all the time so she now has a special mattress as well to keep her skin intact. Like i say always here , its nice to have someone to talk to thats going through the same.

Aw it sounds like your mum is lucky to have you, you’re doing everything to tend to her needs and that is lovely. We all find out at times like this who does and doesn’t care. I never used to really understand when people spoke about the carer and their needs but now I understand it 100%. It’s so hard to stand by and watch someone we love go through this pain, spending each day watching them die and there’s nothing we can do about it  except to try to make the pain as least as possible. It is good to connect with someone that understands how hard all this is. It’s like having a baby all over again, having to wash them, dress them, feed them etc as well as try to maintain our own feelings and pain as we know the inevitable end. I lost my dad last year, I was his carer for his last 18 months and it was only 6 days later that mum was diagnosed with this terminal disease. Sometimes I feel so guilty that I haven’t had time to grieve for my dad before I had to jump straight in to being a carer for mum. Life can be so hard at times. I seem to have put my life on hold since dad got ill and sometimes it worries me that I won’t get my life back after mum leaves. I’ve had to refuse days/nights out with my friends for so long that now I don’t get an invite anywhere. Luckily they all understand the situation but sometimes I just wish I could have a day/night off and just go out and f wild, forget everything for 24 hours and just be carefree. Then I feel so guilty for wishing for a break because I have years to live my life when mum goes. I can never tell each day how my feelings are going to be. From anger to sadness to guilt, each day is different. The one thing I can’t seem to do though is cry, I’ve still never cried for my dad and sometimes I get so angry at him for leaving me to deal with this all on my own and then I feel guilty for feeling so angry. 

How do you cope with your feelings? Do your feelings change from day to day? ️