Totally deaf on my own. My biggest problem is I get so very tired quickly from all the lipreading.

Dear JD,

So sorry to hear of your struggles. Our society is not very good at supporting people who have extra needs like hearing loss or sight loss, and I think it must be really hard to have a cancer diagnosis and to be deaf. I am sure there must be people on this forum who are also deaf, and I hope they find this post and can offer their understanding and support. Your refer to "did something stupid" which I assume means you tried to kill yourself. Please dont refer to it that way, in the circumstances in which you found yourself , and with despair taking over, suicide seems like a way out. You are sadly not alone in coming to that conclusion but I am glad you survived, and I am hoping you did not lose your home after all and that your mum is being properly looked after. Please look for the support that will be out there - your local hospice for a start so you can talk about support at home and not feel so alone. There may be other local support groups if you have not already explored the possibilities, and your hospice or CAB may know about them. Please take help, we are all interdependent and no one can do it alone, so there is no shame in asking for help.

Thanks for replying. I’m glad I’m still alive.  Been making the most of my life with travelling on the coach trips all over the Uk. Seen lots of wonderful things like the giants in Liverpool. The Terricotta army. Frida Kahlo’s V&A exhibition. Etc. The Frida exhibition was sold out.  But the staff, on hearing about my cancer, decided to include me and let me see it. That was special as I’d just got out of hospital.

i haven’t lost my home yet. But I have found out that I have mandatory rights because I’m the daughter, incapacitated and it being my only home. So the property has to be disregarded. Not many people are aware of this. It doesn’t even mention it in the adult care finance assessment. So I do need help there, so I’m going to CAB on tuesday. Johnty has been very helpful. I haven’t got a advance care plan, to be honest, I’ve been avoiding one.  Also I do not want the social services involved in my end of life. I am scared of them interfering. But as much as I wish to die at home, the most important thing is that I’m comfortable on my way out. Thanks

nce

I am glad you are managing to get some good days out and hopefully you now feel more secure about having a roof over your head. 

It is so sad that people are worried about having Social Services involved when really they are there to work on your behalf and to help you get the support needed so you can make decisions about your future. 

I am not deaf but am very hard of hearing after an illness in my twenties. I wear hearing aids but still always take someone else to appointments with me. Relying on lip reading I know is extremely exhausting.

I hope someone is able to put you in touch with support near by. 

The end days are of concern to most of us and people choose to do different things but I think it is important that you know what the options are then you can at least make informed choices. 

Good luck 

Hi

It sounds like you’ve had a lot to contend with. I’m really sad for that but glad you’ve found us. This is a place where you can talk about being scared and no one will tell you to be brave because we all know what it’s like. 

Don’t worry about not understanding the cancer talk - we don’t tend to do much cancer talk here as everyone has different diagnoses and we mostly support each other emotionally. That might be by sharing our experiences or providing a shoulder to cry on. It might be by sharing a joke. We are all facing life limiting diagnoses and find this is a place where we can talk about the stuff it’s difficult for those who haven’t been here to understand. 

I think the other amazing thing about this community is that as long as you can read and write English and have access to a computer, everyone is equal. 

I don’t know if this will be if any use but I do know that Macmillan has done some work with deaf people. It was led by one of the teams that works in the regions. I don’t know much about it but I do know who does. Would you like me to dig out some contacts? As I say, it might come to nothing but you never know until you ask. 

As for dying at home, the best thing you can do is start planning for that now. Are you in contact with your local hospice or palliative care team? If not, the place to start would be your GP. The health professionals would much rather know your wishes and help you to achieve them. 

All the very best 

xxx

I totally understand your dilemma about your mother and her care. My husband has been in care for 4 years and 1 day and they have all been a struggle. I have fought a long battle for his funding and my rights. And fight it has been. With both social services and CHC. I found the website Care to be different a great help. It helped me get my husband the correct funding when the CHC and social services were being deliberately obscure. I have used my knowledge to help others fighting the system to get the correct funding/help for their relatives and themselves. Social services told  me I should sell my home and buy a flat miles from where I've lived for 25 years in order to raise money for my husband's care. They completely ignored all the disregard rules applying to the marital home. Luckily I knew this was not correct. So please do contact me directly if there are questions to which you are finding it difficult to get answers. 

Thanks. I will contact you. I’m really worried about losing my home.

Please do. I will do what I can to help.

Thank you so very much for your wonderful support. I’m okay at aging my shoulder to cry on...but my jokes...hey go down like a lead balloon. I’ll tell you one.

there were these two women, they drove past a rubbish skip. Drove back, rummaged around and found a microwave. They put it in the car and drove on. A little way on, they noticed a police car tailing them, they tried to shake the police car off but they eventually pulled over. An policeman got out. The driver lowered the window. The policeman asked “ Did you just take something from the skip?” The driver said no. The policeman repeated the question more closer to her face. She swallowed hard and said no. The policeman then said he would ask her for the last time. She suddenly said “oh, for crying out loud...it’s only a microwave!” The policeman came nose to nose with her and replied “Madam...that wasn’t a microwave......that was the speed detector!”

there that is the way I joke. But for the record I wasn’t the passenger!

on a serious note. I shall go and see my trusty Macmilliam centre advisor and see how she can help. She is very good. I shall have to see my GP. I have had some blood tests. I’m concerned about my metastatic spreading. Please dig out your contacts, they may be helpful. Thanks

Hi

Very good! Thank you. It’s entirely my fault as I wasn’t clear what I meant when I talked about laughter so you are absolutely not to feel bad but we tend not to share actual jokes as in story with punchline here. It’s mighty hard to gauge your audience online and in the past a couple of jokes have caused offence. There is a group laughter is the best medicine where people do share jokes. You can find the link to join it here: 

https://community.macmillan.org.uk/search?q=Laughter+#serpcategory=group

I’ve sent an email to the person who has contacts with the people doing the work with deaf people with cancer so I hope I’ll hear back from her soon. 

Are you feeling any cheerier? We’ve had beautiful sunshine here in Kent and it’s cheered me up no end 

xxx

My cats always cheer me up. It’s a beautiful sunny morning here too. It’s shiinn like gold.. I like it where I live. I can go for lovely country walks. I love the woods. I wish I could revisit Edwinstowe again.