TinaDavis

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Viewing 15 posts - 31 through 45 (of 164 total)
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  • #108120

    Tina
    Participant

    Dear Sue, Hope you have a nice break with your daughter fingers crossed for nicer weather for you both.

    Keeping busy has definately worked for me I would have gone to the dogs [i](only way I [/i][i]could get the word dogs into this post)[/i] if I hadn't started my photography and windsurfing. At times I do feel terribly alone and quite often chatter away to Patrick as if he is there listening.

    I keep a picture of Patrick in the kitchen – he's wearing a Christmas cracker hat and has a huge cheeky smile. Whenever I feel down I only have to look at that picture and I stop crying and smile back at him. I still think of him as being around me just on another level.

    I have still not emptied the wardrobe of his clothes but I don't feel pressured at all when the time is right it will happen.

    Big Hug
    TinaX

    #108098

    Tina
    Participant

    Dear Sue,

    I am sure Michael was a much loved man and friends and colleagues supported you saying your last goodbyes.

    You are now at the begining of a whole new life. But for now just take each day as it comes, no doubt it will be tremendously hard at times but you just like others left behind on this site, have the opportunity to live – and what a gift that is.

    Michael will continue to live in your thoughts and memories, he has not left you completely.I am sure he will whisper in your ear from time to time and make you smile.

    It would be lovely to hear from you when you feel ready.

    Love
    TinaXX

    #110681

    Tina
    Participant

    I would like to know what you and your dog deal in….

    #108087

    Tina
    Participant

    Dear Sue,

    If you need help with anything at all please let me know.

    Thinking of you

    Tina XX

    #108079

    Tina
    Participant

    Oh Sue,

    So very very sorry to hear your news, God bless you both. If you ever want to to talk please contact me at any time. I wish I was there to give you big hugs and the assurance that you will be ok. You are so strong and like me our husbands were everything to us and your feelings of loss will take you through a myriad of emotions – it is normal and you will get through it.

    Tears fall as I think of you and dear Michael life just isn't fair – is it?

    Lots of love and strength to you dear Sue.

    Tina XX

    #108066

    Tina
    Participant

    Dear Sue,

    I am so very sorry that you are going through this pain. Somehow you need to think of the tiniest positive thought to get you through. Michael is no longer suffering pain and believe that he is no longer feeling fear or worry. He is being looked after and at the very least his final days will be calm and with you at home.

    I wish you all the strength and love you need to get you through this truly terrible time.Would you do it all again – of course you would. When the the one we love needs us the most – we are there.

    Love Tina XX

    #105129

    Tina
    Participant

    Dear Dai,

    I think you are right to be concerned about your cocktail of meds especially if they are coming from different sources. Your consultant however should be aware of all the drugs you are being given and should be available to explain everything you need to know, unfortunately it seems you don't get told unless you ask. I would be surprised if a centralized pharmacy was co-coordinating any drugs you take.
    Patrick's GP was never involved in his treatment or meds, his consultant managed it all from the hospital.
    I'm questioned absolutely everything Patrick was given as I felt it gave me a modicum of control.
    Speak to your consultant asap.
    Best Wishes
    Tina X

    #108025

    Tina
    Participant

    Dear Sue,

    I am so glad you now have support from the district and Macmillan nurses. Although I feel you should demand an explanation for Michael's treatment (which you are surely owed) I feel you are doing the right thing focusing your attentions on Michael. You will benefit from this in more ways than you know.

    Love Tina X

    #101607

    Tina
    Participant

    So glad to hear you are not suffering too many side effects from the Bendamustine Dai.
    Onwards and upwards!
    Tina X

    #108020

    Tina
    Participant

    Hi Sue,

    As Gill says it's great that you are getting some help the Mac nurses are just the best.
    I am sure you will find you are not as stressed now that you do not have to worry about work. I gave up work to look after Patrick when given his prognosis and I am so grateful for those three months with him.
    Sue it makes me so angry that Michael is still having to see the GP, I am completely mistified as to why his consultant & Haem team are not looking after him directly.
    Michael can most definately entitled to the higher rate of DLA and you are also entitled to carers allowance if you are not working.
    I hope you will both find some therapies helpful at the hospice and allow yourself to relax a little.

    Wishing you strength and love

    Tina XX

    #101417

    Tina
    Participant

    Dai,

    I have been thinking of you on the Bendamustine treatment and have my fingers crossed for you and all others on this journey.
    It's strange to think that when Patrick was having Bendamustine treatment 2 years ago it was not very well thought of. In fact I remember suggesting it to one of our gang and she said that her Doctor had told her that it was a waste of time.

    My very best wishes to you

    Tina X

    #108013

    Tina
    Participant

    Sue,

    Mainly because of Patrick's ulcer caused by what turned out to be a terminal bacterial infection District Nurses visited every other day. I will say this reduced the strain and worry I was goibg through – they were just so helpful and understanding. They supplied me up with end of life drugs which were to be used, by them, when Patrick was in need of them as they understood he wanted to stay at home.
    I could call them anytime and they did come on unshceduled days if I needed them. Patrick did not want to go into a Hospice and I could not bear to be apart from him for a minute. That was our choice, but I do think a Hospice is a good alternative.

    Love Tina XX

    #108003

    Tina
    Participant

    Dear Sue,

    As Tom says you must call 999. I usually called the consultant on the Haem Ward at Stoke Mandeville where Patrick stayed plenty of times and they always told me to bring him in straight away. But the night he developed chest pains, the day before he died, I called 999 They wanted to take him to the local A & E but I was having none of that. I called the consultant at Stoke (this is important) and he spoke to the emergency team who agreed to take him to the Haem ward. Patrick always said he wanted to die at home but as he was in so much pain he agreed to go to the hospital that night not knowing he would never return home. I stayed with him at his bedside for nearly 24 hrs until he slipped into a coma and left me for good.
    When the time comes Sue you will be strong. Don't let anyone make you do anything you don't want to you can stay by his side throughout.
    If you have anymore questions I will be happy to help at any time.

    Love Tina XX

    #108000

    Tina
    Participant

    Oh Sue,

    I can only describe this period you are going through as the very worst feeling in the world, I so want to give you a big hug and make it all go away.
    At the very least Michael's pain is controlled a little better now, I hope he is not too distressed and you are able to talk to him about your fears as well as he is about his own, this isn't selfish on your part but purely natural. Somehow doing this made Patrick's last few week's a little more bearable. I am sure you are there at every turn to comfort him in any way you can and really that is the most you can do.
    I am thinking of you both

    Love Tina XX

    #107978

    Tina
    Participant

    Hi Sue,
    Thought I'd answer your question re: driveras eve is on the other side of the world. A driver is a small portable pump which can deliver a variety of meds at regular intervals for symptom control. This could be morphine or any other med required.
    Patrick had one fitted when he slipped into a coma. Morphine was given at intervals to ensure he was not in pain.
    Homeade scones sound yummy.

    Love
    Tina XX

Viewing 15 posts - 31 through 45 (of 164 total)