Grade 4 Brain Stem Tumour

HI looking for some support.

My brother was diagnosed with a grade 4 brain stem tumour in November.  He hasnt giot out of bed since August, sleeps alot, gets very anxious and needs help with toilet needs and feeding.  We ate worried we will not know the end stage as we have limited.awareness or support.   He started palative Radiotherapy in December and due to the decrease in size he started Chemo in June but was only able to do one round due to his fatigue, he was then discharged for Palative care in August.  We as a family have been dealing with all.his care needs and have just recently asked for a Care Package.  We have been waiting for 4 weeks on this being put into place and have been offered 15 minutes 3 times a day Monday-Wednesday.  We feel.my brother has been failed dreadfully the only support in place is the District Nurse visits once a week, Marie Curie sit for 2 hours per week for rest bite to give the family a rest, the Hospice Nurse hasn't been seen in 3 weeks and the Social Worker has not been.very helpful.  If anyone can give us advice on what to look.for when he is nearing the end of life.  Thankyou

  • Hello Teresea, 

    I just wanted to welcome you to our forum. It is really sad what is happening to your brother and that you are getting such limited support and having to deal with all his care needs. You definitely deserve a little more support than you have been getting and I hope that you can get the information you need and explore all possible avenues to receive the support you so much need at the moment. [@RSL]‍ who has been in a very similar situation has given you some good advice in a reply to your other post here 

    We also have some useful information on our website on Caring for the Carer when Someone is Dying which will hopefully contain some good tips for you.  You can also read more about what happens in the end when a brain tumour can't be cured here and we have a general detailed section on Dying with Cancer on this page which may have helpful resources for you. It is important that you and your family manage to find time to look after yourselves too as this will help you look after your brother: you can't do everything alone and I hope you can get the support you need arranged soon. Perhaps you should also get in touch with the CarersUK charity? I am sure they will have some good suggestions and practical advice for you. 

    You can also find out more about the types of resources which may be available to you - some of which you may have already explored - on this page

    But as nothing replaces personal experiences, I will now let our members come and chat to you and share their own stories and tips to help you cope in the coming days and weeks. 

    You have a lot on your shoulders at the moment and we are all here for you anytime you need to talk or offload! 

    Best wishes, 

    Lucie, Cancer Chat Moderator