Hard times

FormerMember
FormerMember
  • 30 replies
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Hi I hope it is ok that o post this here but the end of life group seems to be a bit stunted with people joining but hardly any posts. 

Anyway I have so many friends here I wanted to touch base. 

Since last posting I got the full scan results last Thursday and they are as bad as expected. I am now on Pallative care and hoping to last out at home. 

My husband has been amazing, family and friends are all being so good and helping out where they can. I have nurses coming in each day and I was amazed when a bed for downstairs arrived on less than 4 hours. 

Although I can only tolerate 2 paracetamol alternated with 100gms gaberpentin I am just about managing certain pain and I now have a anti sickness pump. 

I fortunately although I am managing some small amounts of food I cannot taste the beloved chocolate. 

I am not sure how long I have they will only say it will not be long and to say my good byes. That has been difficult I tell you and as strong as you try to be that knowing that this is probably the last time you will see someone hits home like a ton of bricks. 

So I am not saying this will be my last post but just in case I am saying farewell to you all, some of us have travelled together for a long time some of us are new to the group but we all have a common bond. There has never been a time when at least one of you have not been there for me day or night and I have appreciated every listening ear, every piece of advice, every sympathetic response and of course ever amusing story and photos. 

Good luck to you all

Love 

  • FormerMember
    FormerMember

    OH Maz59, 

    I'm sorry to read your post , I hope you are as comfortable as you can be, I'm glad your care team are looking after you, please as long as you can keep us up to date, 

    Oh not to taste the chocolate,  your post have made me laugh and cry, but darling your a strong woman, kick butt hun, kick butt, 

    just in case this is the last time we hear from you I will say until we meet again, ill be the one waving widely, 

    Love Max xxx

  • Hi Maz

    Hi Maz

    You are one amazing lady, Pat is so lucky and vice versa

    Tvman xx

    Love life and family.
  • FormerMember
    FormerMember in reply to tvman

    I have to say that if I last much longer he will not only be amazing but a foot shorter. He has been up and down those stairs like a yo yo. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    How nice to hear from you - and to hear you joking too. You were joking, weren’t you? Of course you were...

    How is the pain control now? I am glad someone has been able to persuade you to try some options other than two paracetamol. 

    Lots of love xxx

  • You wait till he has to go up to heaven and back, he will need to hire some angel wings!

    You are one in 10 million .

    If I ever feel like moaning, which I do a lot, I must look at your posts and pull myself together.

    Xxxxxxxxxxxxx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear Maz

    I have only just seen your post and it is extremely sad to read that you are where you are now.

    I cross all things that you can get comfortable on the new pain medication and your husband, friends and family are surrounding you with all their love.

    I will be thinking of you Maz and hope you can make more posts in comfort to us. Just rest when you need to and dream about all the good things you have achieved or done in life. Listening to music is always a powerful thing for me for this.

     

  • FormerMember
    FormerMember in reply to Norberry

    Hi everyone and thanks for all your words of kindness and encouragement. 

    I had a particularly bad night last night as the pump driver kept going off so my sickness meds stopped. Them unfortunately pain kicked in. 

    This pain thing is no fun at all is it. I have been very lucky that I have not really suffered much pain till now and my sensitivity usually means I need only over the counter meds. I know many of you have to cope with it every day and I feel such a wimp. I have had a form telling off and now know to ring any time even in the night so it doesn't get that bad. They are also sending someone to look at the pain management side of things today. 

    The weather is a bit grim here so I am based upstairs as they said I needed to choose as they don't want me on the stairs which I understand as it was taking my husband and brother to get me back up. But I do hope to get down to see the garden again. 

    We've certainly shared a lot of good and bad times onwon this site, laughter and tears some of those from happiness rather than sadness. There has been nowhere like it, even though some of us have found ourselves in trouble along the way when we have not been too diplomatic bit even then support has been given. 

    Keep posting what you feel as you never know who else that will help now or in the future. 

    Love you lots 

  • Hello Maz59.

    Your thoughts and words should be bottled up and given out as medication, much more effective than anything the NHS can prescribe.

    Everytime I read your posts I feel a bit perked up, like a bacon sandwich on a Sunday morning!

    Xxxxxx

  • Truly inspirational Maz59 - hope I can face the final stages with as much bravery as yourself

    Per Ardua Ad Astra
  • FormerMember
    FormerMember in reply to Norberry

    My husband can really relate to that Norberry. 

    The nurses came earlier and something must be working as I have just worked up to find my husband keeping watch. 

    At least I get a good excuse for bring totally lazy.