Not sure how to cope

Hi and a warm welcome to Carers, although I'm sorry to hear everything that's going on. From what other carers have said, the behaviour your mum exhibits is very much what people with brain tumours often suffer: the change in personality and harsh words. It's easy to understand how hard this is for you. Has her GP referred her to the local hospice? If not, it would be a good idea to contact him/her and ask for the referral as they can help so much in the home. Have you been named her Next of Kin? That would enable you to get information and other care in place. Other carers of those with brain tumours have said that being NoK has been a huge help. You have your own family to care for and your mother, in her normal self, would know and understand that.

You will find a lot of support in the brain tumours group with information that I do not have. Do call the helpline if you need to talk, 0808 808 0000 it's manned by experts who can help where we can't and perhaps chat to your mum's specialist nurse for advice. We also have an Ask an Expert page where you can get more information and support. There's also The Room where you can go to have a rant and come out and close the door on it.  Please let us know how you get on and do talk to us whenever you like.

Love and hugs,

Thank you so much for replying and I will definitely be using some of the help provided in the info

Since posting this we have found out from mums scan that it’s not her tumour that is responsive for her behaviour as her old ones are smaller and the new one is far too small to be causing problems that severe. The doctor said it’s the result of her whole brain radiation treatment and sadly does not know if it’s permanent or not so we have to really hope and pray it’s not as mum would not want to live this way, and had she known this was a risk would have never agreed to radiotherapy.

we are getting some form of care help to support mum while we cannot be there to care for her but mum is very against it and aggressive when we mention it so I don’t know how that will go when it comes to it. I’m relieved she’s not at the end of her life but so deeply saddened that now the rest of her life may be like this. I am feeling so many emotions I almost feel numb today x 

Thinking of you,

xx

Hi Samantha - I am so sorry you are going through this.

Is your mother on steroids?

My mother had a secondary brain tumour (primary was lung) of about 2cm.  My mother was absolutely fine on diagnosis apart from loss of fine motor skills in her right hand. 

She started the steroids and mentally went downhill rapidly - we couldn't get answers from anyone as to if this was permanent/expected.  She then had WBRT which completely destroyed her.  Like your Mother had she been made aware of these risks I know she never would have gone through with it - she only did it because her medical team were so positive and supportive of it.

My mother was awful to anyone close to her who was trying to help, particularly my sister, father and I.  I wanted you to know that I understand and it's so hard to see someone change so rapidly.  Your Mother doesn't mean what she is saying and I'm sure she appreciated everything you are all doing for her.

My story didn't have a happy ending and I wish someone had warned me at the time that the worst outcome could have happened so that I could have been more prepared.  The doctors were so positive she would bounce back that they encouraged my sister and I to go on holiday and relax.

However, the main reason I have written this is we have since met with the specialist who performed the WBRT and he said my Mother's case was very unusual and he has never seen anyone react quite so severely and not recover.  So I think you should stay positive as the chances are your Mother will bounce back.  The WBRT is harsh and so your poor mums body/mind needs time to heal. 

I really hope your Mother improves soon, thinking of you

Sophie x

Hi Sophie - I’m so sorry you didn’t have a happy ending with you mum :( I can only imagine the pain and imagining it is already too much. Hugs!

She has been on steroids since October when we found out, the amount has been changing and she is now weening herself down to 1 from 4. She was put up to 4 incase it was swelling from radiation but then they saw that was not the case.

Since writing this mum has had some better days, although still far from her normal self. We have since been told that a small part of it may be psychological, she did keep saying she thinks she’s dying so we are trying to get a bit of normality back and get her to sit up and open the curtains.. baby steps. 

Finally the specialist team got together to analyse her scan results properly, the first person who briefly looked right after they came in said it’s cancer spreading and causing it and it will only get worse. A few days later another person looked and said it’s not cancer it’s too small to be causing it and it’s the radiation. Now the specialist team didn’t mention anything about cancer (not sure if that’s because so far it has not grown back) but they did say more on her frontal lobe is benign grade 2 and she probably has had it for 10-15 years and prognosis is good. Being told so many different things has been such an emotional rollercoaster one moment getting ready to prepare to say goodbye and another scrapping that and being more hopeful. I still don’t know what to think to be honest! One day at a time I suppose. 

Still hoping she can recover from the damage left. We’re you informed at all that it was a risk for your mum?

I'm glad you have seen some improvement, hoping this continues

My mums medical team were exactly the same - we got conflicting advice constantly.  The only thing that was consistent was that they all gave us positive news, not once did anyone say we were looking at end of life and we quite openly asked if this was the case on numerous occasions.

Yes 1 day at a time is definitely the way to go - things can change so quickly.

No - we were never informed that this could happy and we have met with her consultant since she died and asked why - he can't really answer us which isn't really good enough.  The only side affects we were warned of was headaches and sickness, neither of which she suffered with.  My Mum was 73 and had she known there was a risk of what could have happened she would never have had the radiotherapy and I'm angry we weren't given all the options.  I wish we had pushed and argued more even though it may have made no difference, however it's not too late for you so keep asking those questions.  Keep fighting for your Mum, I have no doubt she appreciates it xx