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26-04-2016, 06:01 PM
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Re: What I've been up to

It has been wiped off my subscribed list too, so I just thought I would say hello to Cate and Celyn to make sure I don't miss any of their news.
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26-04-2016, 06:08 PM
392

Re: What I've been up to

I had to go rummaging to find my suscribed threads. I can't remember more than 2!!
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26-04-2016, 06:14 PM
393

Re: What I've been up to

Originally Posted by Celyn ->
I had to go rummaging to find my suscribed threads. I can't remember more than 2!!
How are things going for you, is your husband still in hospital?
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26-04-2016, 06:26 PM
394

Re: What I've been up to

Not good. He is ready for discharge and the CCG are taking a lot of time setting up a new care package (which is in the process of being set up) They are not communicating with us or the hospital. In theory Michael is bed blocking and the hospital want to send him to a placement in the interim. Due to the complexity needed these places are few and far between and could be 50 plus miles from home. Also, as happened once before, as soon as he went to the placement for respite the CCG cancelled his package. He was trapped in a unit where all the other patients were in a vegative state, for 7 months. We had a major battle to get him home. As the CCG are not communicating with the hospital trust then we are the cats that are being kicked by the Trust. It has come down to incessant bullying and making visiting very stressful.

We are having a major battle now with our MP etc. being involved. We are quite sure if he goes to a placment he will never come home. LIfe has been dire for the last months. Michael wants to live not be kept alive shut away somewhere.

On top of this our eldest daughter, who has been our wonderful help and supporter has been diagnosed with breast cancer. We could not have managed without her. She had surgery last week. It sounded very positive but today she has been told she needs Chemotherapy. Instead of this battle with the NHS Trust and CCG we should be able to put all our efforts in supporting her at such a stressful time. The NHS trust we are dealing with is the same one where little Asha King was. Where the parents took him to Spain because he had a brain tumour and this trust wouldn't recommend him for the surgery that has saved his life. The trust has been so unempathetic that I can fully understand why his parents did what they did. It took our situation to realise this.

Everything is an uphill struggle at present. I hope you don't mind me off loading here as it's reducing me to a bit of a wreck.
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26-04-2016, 07:00 PM
395

Re: What I've been up to

Originally Posted by Celyn ->
Not good. He is ready for discharge and the CCG are taking a lot of time setting up a new care package (which is in the process of being set up) They are not communicating with us or the hospital. In theory Michael is bed blocking and the hospital want to send him to a placement in the interim. Due to the complexity needed these places are few and far between and could be 50 plus miles from home. Also, as happened once before, as soon as he went to the placement for respite the CCG cancelled his package. He was trapped in a unit where all the other patients were in a vegative state, for 7 months. We had a major battle to get him home. As the CCG are not communicating with the hospital trust then we are the cats that are being kicked by the Trust. It has come down to incessant bullying and making visiting very stressful.

We are having a major battle now with our MP etc. being involved. We are quite sure if he goes to a placment he will never come home. LIfe has been dire for the last months. Michael wants to live not be kept alive shut away somewhere.

On top of this our eldest daughter, who has been our wonderful help and supporter has been diagnosed with breast cancer. We could not have managed without her. She had surgery last week. It sounded very positive but today she has been told she needs Chemotherapy. Instead of this battle with the NHS Trust and CCG we should be able to put all our efforts in supporting her at such a stressful time. The NHS trust we are dealing with is the same one where little Asha King was. Where the parents took him to Spain because he had a brain tumour and this trust wouldn't recommend him for the surgery that has saved his life. The trust has been so unempathetic that I can fully understand why his parents did what they did. It took our situation to realise this.

Everything is an uphill struggle at present. I hope you don't mind me off loading here as it's reducing me to a bit of a wreck.
I don't mind at all! Both you and Michael have to cope with so much and the last thing you need is for him to be far away from you. All the cut backs in the NHS are achieving very little and I just wish they would realize that, if the patient is in a good place psychologically there is a very good chance that they will cope better with the traumas of their physical illness.
Tell you daughter that I have been through cancer myself and , although the Chemo isn't a pleasant experience it does work, and I am here 5 years later to prove it. Just tell her to stay positive and be determined to win the battle. My oncologist said that is what helped me.
Celyn, if you ever feel like a moan, you can always send me a pm. Good luck with Michaels placement.
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26-04-2016, 07:21 PM
396

Re: What I've been up to

Oh dear Celyn sorry to hear your battle is still ongoing !!!!! And I'm so sorry to hear about your daughter too ... it all seems too much for one family to have to bear

Sending hugs and best wishes
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06-05-2016, 04:40 PM
397

Re: What I've been up to

Oh Celyn, why oh why does this keep going on? I ask myself what on earth did we do to deserve everything that has happened. We feel quite supported but really we are only one step away from falling through the cracks if we don't keep up with it all. My heart breaks for you Celyn I can feel your pain. What the hell are these people trying to do. I would not wish this evil disease on anyone except may be those idiots who do not see Michael through this illness and put him with people who cannot move or speak, for Christ's sake he is an intelligent man who needs outside stimulation, and not always from family who are tired and worried.

To be honest I am at this moment so angry I will stop writing before a four letter word accidently pops up. Keith is deteriorating and I am only just seeing the what has happened to our wonderful NHS.

I only wish your daughter all the very best of everything.
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06-05-2016, 09:35 PM
398

Re: What I've been up to

Sending hugs and best wishes Kate to you and Keith and also to Cekyn and Michael
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07-05-2016, 03:41 PM
399

Re: What I've been up to

Cate, it's hunky dory in the initial stages. When the going gets tough, as you say, the cracks appear. It's chase, chase, chase. Sometimes I feel so lonely, as its me fighting non stop for what we consider our rights.

It's a strange system. There are people who take their case to the high court for the right to die. Yet those who want to live get knocked back time and time again.

Have some of our medics become hardened to illness? It's all budgets and money, money. I'm not sure a big teaching hospital is the place to be. Basingstoke, a small hospital, is where my daughter is being treated. It is much more personal and a different attitude altogether.

Our big problem has been the tracheostomy. It has given us, at present, 5 more years together. Many of those have been fraught with care difficulties. The then PCT tried to prevent Michael having it and it's almost as if they are now saying *we'll teach you and make your life difficult*. He says he didn't see his final days like this.

I have felt that your NHS has been a little more supportive and I hope Cate that it continues. Our MP is on the case and MND so watch this space.
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