I am going to lose my brother

[Alans_sis]

I am new to the hub and this forum so I guess I should start by introducing myself and my brother Alan.
My name is Helen, I am nearly 42, married with 3 sons. I have 2 brothers Alan who is 44 and John who is 38. Alan has never really felt like my brother, he has always been my baby, despite being 3 years older than me. He is unable to talk or communicate at all, he lives in full time residential care 3 hours away from me and has lived there since he was 17 (28 years this year) He does not want anyone touching him and in fact does not really want to be around people any longer than it takes to get a drink or food from them and really will not even let us in his room for longer than a matter of minutes.
He is my baby, I cannot express that enough, even our dad says my relationship with him has always been more maternal than sister.
Our mum suddenly passed away 4 years ago.

So how on earth am I meant to accept I am going to lose this unbelievably precious, beautiful boy to cancer??

Alan was diagnosed with testicular cancer in January 2015 and because of his absolute terror of all doctors, hospitals and anything like it, even to have a blood test or scan involved a lot of sedation to get him into the hospital followed by general anaesthetics after having tried one chemotherapy treatment where we nearly lost him under the general anaesthetic (took nearly 4 hours to bring him round) We then, along with all the specialists had to make the decision it was not in his best interests to carry on and he has now beaten the longest prognosis he was given 2 years and he really really is my Superman and I could not be more proud of him but after visiting yesterday, and meeting his gp it is clear he is really starting to struggle, they are keeping his pain under control but he is now struggling with strength and mobility.
I have fought his corner my whole life and always will, but how I cannot fight his cancer for him and I cannot save him from this and it is killing me. I am the one doing all the stuff with the social workers etc as my poor dad struggles after mum and as well as Alan being terminally ill, my younger brother is waiting for a kidney transplant so there is a lot for him.

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[sianwhite]

Hi @Alans_sis, thank you for your post, and welcome to FamilyHub.

I’m so sorry to hear about Alan - it sounds like you’re all going through an extremely difficult time. It’s hard to imagine how it must feel.

Have you had a look at the online communities set up by Macmillan, Sue Ryder and Marie Curie? The communities are full of people who have stories to share and questions to ask about cancer. There will be many people who understand exactly what you’re going through and who can lend a listening ear. Here are the links:

• Macmillan Cancer Support

• Sue Ryder

• Marie Curie

If you’d like to talk to someone in relation to cancer and learning disability, you can always call our helpline too: 0808 808 1111

Good luck Helen, and all the very best to Alan.
Sian

[MeMaz]

My heart goes out to you @Alans_sis, my youngest daughter is like a mummy to her older disabled sister so I understand where your coming from there. I just wanted to say your in my thoughts at this difficult time.

MeMaz

xxx

[mollymay]

I’m so sorry. What a heartbreaking situation. You will cope but it will be hard, it sounds like you have dealt with so much already. Loosing anyone we love is desperately sad and so hard when you have such a special and unique relationship with him. I hope you can find some time and space to allow yourself time to feel these difficult feelings and I hope you have support around you. I would second the suggestion of getting some support from Macmillan or a local charity through this difficult time. It sounds like you’ve been the best sister and you’ve had to make some very hard choices around his care and will likely continue to have to do that over the next few weeks and months. X

[Isonor]

I’m so sorry to read what you are going through. Being a sister to someone with disabilities is such a mixture of roles and emotions. When you have fought their corner from childhood and acted as a parent as much as a sister it is doubly hard to watch them struggle, to stand back and accept your limitations. Your brother has been lucky to have your support now you need support as you prepare for grief.