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hi paul, what a waste of spaceyour gp seems to be, perhaps when you feel stronger you may wish to see him, so that the sage doesnt happen to other "patients"?, actually clients cos we pay for the service they are expected to deliver !!!!

NOW is time for you paul, do hope your hosp app goes ok? thinking of you and sending love , Laura xxx

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Paul, I have read and re read you and Andrea's journey. Often with tears of sadness and frustration for your struggle. I am so sorry for your loss and the absolute battle you have had to get Andrea what she needed and deserved. You have often been in my thoughts. Your love and caring for Andrea has been an inspiration and I'm sure it will continue to be. Love Catherine x

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Dear Paul,

I'm so sorry to hear you have lost Andrea, your journey sounds so familiar to mine & Bills a real struggle both with the illness & the medical. We too had great support from Marie Curie & DN's.

I'm still waiting for it to get easier, people keep saying it will.

Your in my thoughts, take care & do it your way.

Jools

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PCUK Nurse Jeni

Dear Paul,


we are so very sorry to hear the news of Andrea's death |(sorry not to reply before now, but we have been out visiting in Wales).


Please accept our deepest sympathies at this sad time. No more pain for Andrea.


Take care and our very best wishes,


Jeni and Dianne, on behalf of the PCUK team.

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Once again, thank you all for your support and kind thoughts - it means a great deal to me. The funeral is confirmed for next Tuesday morning at 09:30.

I made it to the hospital on Tuesday. I had the opportunity to look at the referral letter from my GP (which should really have been dated April 2012 if they had done their job properly). It was dated December 21st 2012! Only 8 months late!

Chase everything! Don't let your loved one get lost in the system!

I did it, Andrea. I chased it up and went for the appointment as you said I should...

Hugs to all


Paul

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Hi Paul - well done you for looking after yourself. I think we have all learnt that we can't rely on anyone else to do it. I think the whole NHS is so under-resourced that everyone is struggling to do their jobs properly and unfortunately patients are suffering. I don't know what the answer is but I do hope that things improve soon.

Thinking of you and hoping you are OK, all things considered.

love

Deb

x

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Thanks Deb. Today I should have been driving up to be with my love. Instead, I will drive up on Monday to stay in her house with her sons ready for the funeral on Tuesday. I console myself with the thought that her suffering is over but, to be honest, it's not helping me enough. I need to find a way of gaining strength to face the future without her. I haven't decided how the heck I am going to do that yet. Maybe I need to take one step at a time - Tuesday 09:30 is the next milestone.

I learnt a lot about the NHS machine during our fight against this awful disease. I am already 8 months in arrears with whatever it is that is causing my problems due, once again, to GP apathy. My Andrea told me to push like hell to make sure I am not overlooked like she was. Rest assured, having seen how things do not always run smoothly within the NHS machine, I will push and question at every opportunity. I owe it to my Andrea not to fall through the same holes that she did. Hopefully, my results will show nothing of importance.

Fight the corner for your loved one at every opportunity. Best advice I can give, based on our own experience. Stay strong and positive everyone.

Hugs,

Paul x

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Hi Paul - you are right - it really is one step at a time, one hurdle at a time and one milestone to reach but reach them you will. You know how strong you are, you have shown that with your ability to cope with everything over recent months and that strength will see you through the coming months too. It will not be easy but you will get there. Keep your focus on remembering your lovely lady, your shared loving moments and remember she will be encouraging you to carry on and take care of yourself now. I will think of you both on Tuesday and send lots of love.

Deb

x

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Just wanted to pop on to say I will be thinking of you and Andrea tomorrow and hope you find that strength we all know you have inside you to get through it.

Love and hugs to you and all the family

Sam xx

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hope things went as you wished today paul, i cannot imagine how you must be feeling, but so hope that slowly you will be able to move forward, safe in the knowledge that anything that needed doing for your wife, YOU DID.

you have been an absolute tower of strength, and i hope now that your strength will once more come into play, and that you will receive similar loving support.

thinking of you, love laura xxx

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Thank you so much my wonderfully supportive forum friends. Yesterday went off ok in spite of the snow (having to wait in falling snow with the flowers at the top of Andrea's street as the hearse and cortege car would not be able to get back up the hill). The minister did a nice service and read out the passage that Andrea had dictated to me and then had been tweaked by her son with her a day or so later. I don't need to tell you how much I was in pieces - you will know that. Andrea's lovely Welsh family had driven up through the bad weather. We all had a meal in Durham at their hotel in the evening. There were more tears of course (not just mine).

Today, my feeling of devastation and loss is indescribable. It's as if I have nothing to cling to now - even though in my brain I knew she had gone forever - I was with her when she went remember. She wanted me to be strong and to keep going. I will try. I have to work as normal today, but God knows how I will be able to focus. Maybe working will help...I don't know.

Big hugs to you all and thanks again,


Paul xx

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Hi Paul - glad all went OK (as much as these things can) and that the awful weather didn't stop you saying farewell to your lovely Andrea. Work can help but you will feel foggy headed and will find it difficult to concentrate so take things VERY slowly and be kind to yourself. Nothing can prepare you for the loss, even knowing ahead of time. It is a cleche, but time is a great healer and you are at the beginning of a new journey that is bereavement which I know you have travelled before so I don't need to tell you what to expect and you know it is difficult but know you are not alone. Hoping that work is a healthy distraction and that family and friends are supportive. Take care.

love

Deb

x

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Oh Paul, you are amazing! I think I was on automatic pilot for a long while with a very foggy brain that is just beginning to lift (some days). Take it gently and look after yourself. Hugs, Sue, xxx

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PCUK Nurse Jeni

Hi Paul,


Glad the funeral went as well as possible.


Would you not be entitled to some compassionate leave after burying your wife?


Do take care,


Jeni.

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Thanks again Deb, Sue, Jeni. I am self employed Jeni so would be able to take time off if I had more of a cash reserve behind me. So, I haven't had a holiday in 6 years, and have only had one day off sick in that time too. Work did keep me focused for some of the time yesterday but, I have to admit, I feel exhausted. I have Andrea's wedding ring. I was going to wear it on a chain around my neck. However, on the night before the funeral, I slipped it on to my wedding finger and it's a perfect fit! It was her mum's ring too. I never got a ring. On the day she was allowed out of the hospital for us to get married, I said I would rather spend time sitting close to her on the sofa than tramping round town to find a ring for me. Every moment with her was so precious and we knew she was only out for 24 hours at that time.

One day at a time. Rollercoaster ride - up and down with emotions.

Hugs to you all,


Paul xx

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PCUK Nurse Jeni

Hi Paul,


So sorry Paul to hear that you are not really able to take time off, due to being self-employed. Sorry, I was not thinking along those lines, only thinking of you having some time off! This is a tough one indeed, and I am not surprised that you are exhausted.


Gosh, hard too to think you can't even have a weeks holidays. And not having time off for 6 years, oh goodness, you need some time out Paul? Can you have a bit of time at weekends even? Really hope so, as you will be drained physically and emotionally from all the recent upheavals. Would be concerned about you Paul - will you be able to get any help for even a week, to let you at least have a bit of non-work time?


Do take care Paul - I can't imagine how hard it is for you right now. So lovely that Andreas wedding ring fits you! Very special.


All the very best Paul,


Thinking of you,


Jeni.

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Paul, just stopping by to see how you are doing?

Been thinking of you this last week and hoping you managed some time for yourself at the weekend.

Take care Paul

Sam x

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Hi Sam,

How kind of you to think of me! Weekend was a tough one _ I would normally have been going up to Andrea on Saturday after work. My friends realised and invited me round for a chinese (didn't eat much) and a film. It was really good of them. I got the blubbing over with when I first got there and got lots of hugs.

I am still in a kind of daze. I am working full stretch again which I think helps a little. I wake up thinking it's all been a bad dream - only to find it's reality. My eldest is going travelling for 10 months on Friday. It was his 24th birthday yesterday, so we three took him out for an Indian. Andrea loved going for an Indian, so she was (as always) very much in my thoughts.

Went for my biopsy result yesterday and was given the all clear with some conditions attatched. On the way to the hospital, my daughter took me to a music shop in York and bought me another guitar to add to my collection (that's the 9th!). It's a Taylor acoustic. I've wanted one for 40 years, not just because they are a great instrument, but because it happens to be my surname too! So, a guitar with my name on it! My girl bought it for me because, unknown to me, Andrea had told her to encourage me to get back into my music when she had gone as I would not handle things well and would have a little time on my hands. I think Andrea, being the kind and generous person that she was, would have a smile on her face as she saw what my daughter had done. I was in tears.

So, one step at a time. Every day is difficult, but my love was insistent that I didn't think about giving up.

Big hug for you Sam,

Paul xx

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How wonderful of Andrea and your daughter, Andrea truly was an inspirational and strong lady to have been so thoughtful in that way despite what she was facing, what a blessing to have had her in your life. I'm glad your friends are looking out for you Paul and what a relief to have food news from the biopsy! I just hope that when I need to I can be strong like you, Andrea will be so proud of you and you must follow your passion for music, I'm sure it will be a comfort to you just as Andrea said.

Stay strong and hope you get through the weekend with the support of your friends and family again..

Take care

S x

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Hi Paul.

So lovely to hear of your good results from the biopsy and how your daughter treated you to your longed for guitar (with your name written all over it...literally!) I know that feeling when you first wake up and for a moment you forget...and then you remember and you get that sinking feeling. That does get better over time, as everything does. So, you keep going as you are - doing amazingly well, carrying on but with Andrea in your thoughts. I hope your son gets off on his travels OK and that you continue to spend time with people who care for you.

Much love Paul

Deb

x

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Thanks Deb and Sam.

I am braced for the rollercoaster. One moment seemingly ok, a bit later feeling like a train has hit you. I so want to get off this horrible fairground ride, but I have 3 grown up (allegedly) kids who need me to stay on it. Thank you so much for your kind words. It does help when things seem very dark.

Big hugs,

Paul x

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