Ding, ding! Round 2

FormerMember
FormerMember
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Hi folks 

I’m back to the hospital tomorrow for another battery of tests ahead of starting cycle 2 of the clinical trial that I began on December 27th. 

It’s hard to believe it was just four weeks ago. I was so very unwell. The pain from my poor defunct kidney had overwhelmed me and it was a toss up between sitting it out at A&E at the Norwich and Norfolk Hospital or getting onto the train for London and the trials unit. I did manage the train and the trek from London Liverpool St to Warren St tube. How long those interconnecting tunnels between the mainline station and the tube lines seemed. My brilliant trial doctor and hospice palliative care nurses sorted me out, gave me a bag of drugs to take away and started me on the trial tablets. 

I am feeling so much better now. I’m cooking again - my daughter and I had survived on a diet of ready meals for some months. This week I made falafel, hummus and pita bread from scratch, soup, veggie cottage pie and salted caramel brownies. I still need my stick to walk and I still can’t get up a hill - or at least I can if I take it four steps at a time and have a rest in between. But I am no longer feeling crushed by the fatigue and I can stand unaided for the three minutes the trial requires for a standing blood pressure. Today I took not one but two walks with the dog. The sun was shining and it was blissful. 

It’s impossible to know what’s made the difference. Certainly being on top of the pain has been wonderful. I won’t know if the trial drugs have achieved anything until after a scan on February 18. I’d be very surprised if we see much change; the best I can hope for is no change and no new disease. 

Meanwhile I’m feeling so grateful to have this new lease of life. I’m taking it one day at a time and savouring each of them 

xxx

  • Hi Well, I'm amazed! Have you actually been 'hands' on with the decorating, if so that is amazing and you should feel pleased with yourself! I used to do all the decorating, gardening etc but have got to the stage now, I can only supervise and I hate it! I'm sure your daughter and family will enjoy their visit whether or not the decorating is finished! Oh and be very thankful your husband knows what an ironing board is for! My husband is amazing and I've slowly been showing him how to use our kitchen appliances but whenever I ask him to get the iron out, he disappears! Really don't mind as he does all the other things without complaint! Enjoy your visitors and rest before they arrive!

    I just found out today, our son, wife and son are coming to Spain for the school break, so that's terrific!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi So pleased you got your medication sorted out, it's such a worry when you get to the last few pills and don't have any more! If you want a job doing...do it yourself, good for you! I'm sure Penzance will be lovely as they get much better weather there! It will also make a difference with your daughter and her fiancé being there too!

    With your son moving to London, that means you have somewhere else to go on holiday when you visit him once he is settled! Does it mean you will see him less frequently? If so, FaceTime is a Godsend. We used it a lot when my niece moved to New York! It was great, she showed us around her flat. At the same time, her sister moved to London so we spoke to her too!

    You will be off on holiday sooner than I will, enjoy every minute!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Thanks for the. Message.

    it is good to have holidays and short breaks to look forward to.

    my BP is up again and after all the fuss of getting my tablets I will have a day off today and hope the BP comes down.

    my husband and I are getting the bus to go out for lunch today and will use our bus passes. I can no longer drive and Roger likes to be able to have some wine so it works for both of us 

    love Ruth xx

    Ruth 

  • FormerMember
    FormerMember in reply to anndanv

    I have actually managed a bit as I am very good at doing measuring and cutting wallpaper. I tried to do some painting but it made me quite ill. However my best role is supervisor much to my husband's dismay as he says I am a tyrant. Poor thing he actually went to work for a rest. Fingers crossed this weekend will see most of it finished but I have said he can rest of he needs to. 

    The ironing he loves always has says he finds it relaxing. I could probably timetable some ironing between papering and painting. 

    I do wish I could do more but it is as it is. 

  • FormerMember
    FormerMember in reply to anndanv

    have actually managed a bit as I am very good at doing measuring and cutting wallpaper. I tried to do some painting but it made me quite ill. However my best role is supervisor much to my husband's dismay as he says I am a tyrant. Poor thing he actually went to work for a rest. Fingers crossed this weekend will see most of it finished but I have said he can rest of he needs to. 

    The ironing he loves always has says he finds it relaxing. I could probably timetable some ironing between papering and painting for him but that might be the last straw. 

    I do wish I could do more but it is as it is. 

    Lovely to here your son and wife are able to join you in Spain. It is so good to have things to look forward to.  

  • Hi That's great you can actually help, you should feel good about that. Like Daloni the other day sorting out an electric problem on her own! Lol! I do think we make good supervisors, although my husband would say slavedrivers! Usually he'll say "oh I could be doing with a coffee" and I say, just finish that bit first then I'll make you a coffee! Sometimes he goes to work for a rest too!!

    I hope you both enjoyed your bus run and your lunch!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Ruth

    Hope you had a good relaxing time and a lovely lunch. As for Roger and the wine, he's a man after my own heart Grinning

    Tvman xx

    Love life and family.
  • Hi Maz

    You have a gem of a husband there GrinningAll the same, I feel for him!

    Tvman xx

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

    Hi to all,

    I haven't been on the site for about a year - so, firstly, I apologise for not keeping up with everybody. I just am sick of being sick and felt I really didn't have much to say re my treatment etc.

    I do hope you'll forgive me but, as you all know, sometimes hibernation seems the best option, especially when I have nothing very positive to report.

    I have recently sent a Friend Request to Tinalay and wonder if someone can PM her and let her know I do need to speak to her soon as PLEASE???

    Meanwhile keep up the fight and I will reappear a bit from now on. 

    Love n Hugs to you all#

    Diz xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    I love your profile picture!

    Welcome back from hibernation. There's a line from an Anastasia song, 'sick and tired of always feeling sick and tired' I hope you're feeling a bit better and look forward to talking to you xx