Non Hodgkin lymphoma stage 4

Hi just wondered if any one is or had been in the same shoes as myself. My mum was told she had stage 4 it has shown in the bone marrow. We have had to stop chemo after only 2 cycles due to her being so unwell. She is so frail and was also rushed In To hospital with phenomena. I am just trying to get my head round how long I will have her for. I been waiting for the consultant to ring me as I deal with everything for her as she also has dementia. I know the consultant is really busy and I have not waited to long but when in this delema if feels like a life time to get answers . But I must say they have looked after her wonderfully.  Any help or advice would be greatful .

thanks 

  • Hi there

    So sorry to hear about your mum, I'm in quite a similar position as you. My mum has high grade NHL which started at the base of her tongue and has now spread to her lungs, liver and spleen. She had chest pains on Monday and was admitted to hospital. She started chemo on Tuesday and had her 2nd dose on Wednesday, got home last night. I'm so scared how the chemo will affect her. 
    Are you able to visit your mum? It was heartbreaking for us not being able to visit my mum especially when she was given bad news that the cancer has spread. 
    Hopefully the doctor will phone you soon about your mum. 
     

    Xx 

  • Thanks for the reply. The hospital didn't go well to be honest ! Because of her dementia they let me go in with her we got there at 4 am. I stayed right through to .6pm and only went home on the condition they would let me back I. After I had gone home showered and checked my farther who also has terminal cancer. When I returned they wouldn't let me in and said they would contact me if she was moved or being discharged . Later that day after havin been in just over 24 hrs I had the call to say she could come home . I read the Co discharge papers only to fine they let her out because she asked if she could go home !! Against there wishes . With the Dementia she is not capable to make that decision. If I was there she would of understood and stayed. I went with her cloths and wheelchair to collect her. Only to be told again I could not go in I had to stay at reception and wait they took her chair an  Bag down . Only to be pushed out to me in a hospital gown and dressing gown. She was frozen . When I got home her night gown pants and soaks were soaking wet so she was not cared for how I expected. I was fuming. This is a women before cancer who would not step output unless she was fully dressed smart and hair done . However the cancer unit at the hospital have been fantastic every step of the way .   Right now it breaks my heart to Wright this . Mum also has high grade nhl she also has ryumatoid arthritis and osteoarthritis fighting the phenomena . 

  • I'm so sorry to hear about your bad experience with the hospital, no wonder you were angry when they said you could get back in and you never. 
    You are dealing with so much just now between your mum and your dad, that cannot be easy. Do you have support from anyone at all? Look after yourself too which is difficult with all that is going on with you xx 

  • I have literally come off the phone to the consultant. They have decided to stop all treatment . Please don't hesitate to message me if you need someone outside your box I am more than willing to help. Sometimes it's good to talk ! Xx

  • So sorry to hear that they are stopping treatment, your emotions must be all over the place. Sending you a big hug. I'm also here if you need to chat. It's the fear of the unknown and not knowing if the chemo will work for my mum. With it being stage 4, will chemo make a difference, that is my worry

  • Just remember just because we are unlucky dose not mean you won't be. Be positive as that is what will get you all through it . Although high grade nhl is so very aggressive it's also more acceptable to treatment . If my mum wasn't so ill with other element even being at stage 4 there was still high hope for a cure or at least remission. So please keep  smile keep positive and don't give up. My heart goes out to you and will keep my fingers and toes crossed for you. Sometimes the less aggressive cancer aren't so easy to treat ! Good luck and love to you big hugs x

  • Thank you, lots of good advice from you which I will take note of. Look after yourself, love to you and your parents x