Caring for someone with secondary brain cancer

Hi Granny Sue, I'm sorry to hear Bill is deteriorating. I cared for my father who had a primary brain tumour and I can empathise with you how very challenging it is. I just about got through the experience myself! I was put in contact with a charity called Brain Tumour support and unlucky for us we were due to have a home visit but Dad passed away 2 days prior. They have been in touch since and are great, maybe you could contact them? I found there was no specialist support for brain tumours in the community and we really struggled. My Dad's symptoms increased towards the end with confusion, agitation, waking up through the night and also difficulty swallowing. I'm sorry I don't have any tips really, but just to say I know what you are going through.

Take care xx

Thank you for your support it means a lot will look into that .Its funny how quickly he has gone downhill the nights are the worse he is wandering a bit and dosent always know where he is .The tumour is in the speech center so language and understanding have been affected .But he is also starting to lose the ability to do simple tasks like making a cup of tea etc .Palliative nurse is visiting once a week but he plays down his symptons .However she isn't fooled he had got worse . Thank you for being there hope you are doing ok ? Lots of hugs x

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Hopefully the palliative nurse will keep a close eye and help eleviate his symptoms if possible. I'm OK thanks, finding it difficult coming to terms with the caring experience, saw things that replay on my mind and it took everything I had, feel I've nothing left to give to anyone right now. 

I hope you are able to get through this difficult time and I am thinking of you xx

That has really struck a chord with me there are things that will stay with me too but that is for later at the moment just keep going .You need time to process all you have been thru ,it takes time and somethings do stay with you always, ask for help if you need it .Its a terrible experience you have been thru and it means a lot to me that you  reached out to me thank you and take care xx

How are you, granny sue, I have been thinking about you x

Not so good here now had to go off sick from work as Bill has gone downhill and cant be left now .He needs help with personnel care mostly verbal prompts , cant use phone text or read a book .His sleep patterns are all over the place he has become quite anxious at night so has a dose of anti anxiety meds at night .His mobility has become more unsteady and he is confused at times .No idea how long this will go on for but its very tiring as you can never really relax .My daughter comes up every day and sits with him so I can get out and work has been very good. We have good palliative  support and g.p but there isnt a lot that can be done at the moment as he isnt full care .Its heartbreaking to watch and so very cruel .How are you doing my dear ? Thank you for asking after me it means a lot .Everyone is so kind it really helps when things are difficult take care lots of hugs xx

Hi there I'm so sorry to hear all of this. I realise that you have been on this journey a lot longer than myself and Ken were. I'm not very good at saying the right things so apologies in advance of I say anything inappropriate.

I'm OK, still not crying but my sleep pattern is not good and I wake with the most awful panic attacks and feelings of dread. When I try to remember good times bad times pop into my head. The last response from him was one of anger when I tried to remove his watch which was bruising his fragile skin.

I have a large photo of him which I talk to and i find a comfort  but have given most of his clothes to the cancer research shop. The special pieces I have kept are away in a drawer, I can go to them when I need to but they are out of sight. I found seeing all his things so painful, but the photo is a comfort. Explain that!

I wish I could help you as you have helped so many of us, and I hope you have the best day you can xx

Thank you my dear the palliative team think he is deteriorating more rapidly.the docter thinks weeks to months but cant be sure there is a possibility he is having small seizures but they cant be sure.He has fallen a few times .So we are having the just in case meds in the house and a hospital bed at some point Its what we expected but nothing.really prepares.you for this point .On a lighter note Bill is a stubborn devil if anyone will defy the odds he will and be here in 6 months ha ha  We still laugh a bit and are just doing the best we can !! You have helped many people too and you have nothing to reproach yourself for .Its not the person saying hurtful things its the diesease the real Ken was there he just got list in the pain and suffering of it all .Have you thought about berevement counselling ? It may help you to voice everything you have probably bottled up .You did all you could for Ken its time to look after yourself .All the best to you you can always talk to me everyone needs someone to support them and I would be happy to help you. You have come across as a lovely lady  take care xx