Hi Confudulated,

Sorry about this latest news, I really wish you and your daughter weren't going through this :(

I really hope she gets some help from the Tamoxifen, or find a way that she could have the mastectomy.

Will be thinking of you both.

LJx

Thanks LJ

xx

No worries.

I did want to ask if you get much help with your daughter but I imagine you're incredibly busy and don't get much time to be on here so no worries if you can't reply.

To my mind your story hits on an issue that it would be useful to have added into the adverts run by cancer charities and it's that it isn't only people that are 'neuro-typical' who get illnesses like this. I used to work alongside identical twins in their 50s both with severe autism and one of whom was undergoing treatment for breast cancer, thankfully they coped with anything as long as they were physically kept together.  But we also had residents with various learning disabilities and neurodevelopmental disorders and I saw how difficult it was to help them through serious illness.

I hope you are getting lots of support in this regard as being a carer is task enough, but add in serious illness... :(

Don't forget to look after yourself and take some time out when you need to!

LJx

Thank you, LJ

We made the difficult decision a few years back to slowly ease our Daughter into the care system.

We didn't want her to suddenly be thrust into it when we were too old to look after her and we certainly didn't want siblings to have to become carers.

She lives full time in a fabulous small family style care home which she loves and they love her too bits as well.

The only avenue left is palliative care which we are slowly coming to terms with and its just a case of wait and see.

I personally think that raising awareness of breast cancer and that it can strike at any age and any gender needs to be pushed.

And also raising awareness within the medical and care profession of the complications of dealing with someone with mental disabilities needs to be addressed.

The Hospital and the consultant and the care home have been amazing but it was such a learning curve for them all and trying to work out how to help our daughter without causing her distress was very hard and having to consult with Autism experts etc to make this possible did delay things slightly.

The only blessing in all of this is that she has no comprehension of what is going on so apart from being a little bit sore where her booby is so swollen she is happy in her self and still enjoying life.

Love and Light x

Hi there ..

Oh my , I was praying it would be operable ... but can only imagine just how she would have coped ... even for us oldies it sure is scary ... so in one way, I'm so relieved she won't have to go through that ...

You are a shining light to all of us... I don't think I'd have coped if I'd been where you are now .. and those caring for her, I'm sure will make her time be it long or short, will give her even more T L C   ... there's so many things that could be improved with things that roll along with cancer ... so you do what you can to make them more aware ... I know a few things I'd like to change ...

I send you all a heartfelt hug ... witch doesn't seem much at all ...  ill be thinking of you and your precious daughter ... cancer sucks ... but its even pushed those limits now too ... 

Chrissie

Thanks, Chrissie

I don't know about being a shining light, I have good days and bad days, it is a totally emotional rollercoaster ride, to be honest, I try to keep myself as busy as possible I've always tried to be a glass half full, person. 

when the inevitable comes and my Daughter no longer needs me I will do my best to make sure people

are more aware that Cancer can strike anyone in any situation in life.

Love and Light xx

You and you lovely daughter are always in my thoughts .. always here if you would like a chat ... I can't make anything go away, but I can listen ... sending you both big hugs ... chrissie

Hi,

I'm so sorry to read the latest news about your daughter. My youngest son (now aged 30) has severe autism with severe learning disability. Sometimes not being able to understand can be a blessing in disguise for him (we do all his worrying for him) but at other times it just causes so much frustration and anxiety. He knows that there is something wrong with me but at a very simple level that Dad has a poorly tummy.

He is in supported living now and is very independent of us, our reasons were similar to yours we knew we wouldn't live forever and didn't want his brother to turn into a full time carer. Ironically he went on to become a doctor, so in a way that's what he is doing. The hardest thing for us was accepting that he was less anxious whilst in hospital accompanied by his regular carers than he was when we were there. We talked his hospital care team through his needs when he had an operation and they were brilliant at reducing his stress levels. 

I hope everything goes as well as it can do, that your daughter's treatment doesn't cause her too much stress and that you somehow get through everything that lies ahead. 

Best wishes

Dave

Hi Dave

Thank you.

As you say its hard excepting that your child would rather the carers go with them

to appointments than us parents:)

The blessing in all this is that she really has no idea whats going on at all, other being a bit annoyed that one boob is bigger than the other she's coping brilliantly.

love and light 

Hi Confudulated,

This is not the news that I was hoping to hear, but I'm glad to hear that the hospital staff have been sensitive to her needs and that her only concern is that one breast is bigger than the other.

I care for a relative who is 80 now. He has had brain damage, is paralysed down one side and has a speech impediment for the past 68 years. We finally got him into a care home last year and he is very happy there. Sadly our experience with medical staff has not all been good. They tend to tell him what they are going to do, rather than asking what he thinks. He can still think for himself despite his handicap, although it may not look like this when people meet him for the first time.

He has now decided that he will hang on to his various ailments until one or other takes him and is quite happy with his decision. It is difficult to endorse this at times and we have explained to him that some of his conditions could result in having to have emergency treatment at some later stage. Again he is happy to accept that in doing nothing now, such a situation may arise at a later stage. I just wish that more were done to raise  awareness within the medical and care profession of the complications of dealing with someone with mental disabilities.

It must be terribly difficult for you as her parents to accept that your daughter cannot face surgery and that you are looking at palliative care. I sincerely hope that Tamoxifen can do something to help her.

The cancer journey is always an emotional rollercoaster, but I am glad that you are a glass half full type of person. Even a shining light can have bad as well as good days, but this doesn't make you any less inspirational - just human.

Please keep in touch and remember that we are always here for you.

Kind regards,

Jolamine xx