The trial begins

FormerMember
FormerMember
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Hi folks 

After a couple of weeks of uncertainty I heard today that I have been accepted onto the clinical trial my doc had proposed. She waved the written confirmation in her hand, looking delighted, and then had me sign the consent forms. 

It’s good news on two counts. First, I am hopeful this trial will achieve something for me. It’s an approach that’s worked for me before and it fits with the genetic profile of the cancer I have. Second, my doc has managed to persuade the trials team to let me skip the genetic screening normally required by the trial. I have had a lot of work done on the genetics of the cancer in my body so the data were there already but it took some work to get hold of some of these (the testing was done at a different hospital) and to have the trials team accept them. If I’d had to go through screening first it would have taken about 3 months. My doc doesn’t think I can afford to wait that long so I would have been offered chemo instead. Who knew it could get so complicated? 

I had some blood tests today and the results are looking good so I’m cleared for a liver biopsy on Friday. Next they need an echocardiogram, possibly on Monday. That’s tricky to book at short notice, I’m told, and apparently will require a willing technician to do it in their lunch hour as a favour to the researchers. Finally, my team need to get all the info to the trials team for them to log it and complete the registration on Tuesday. Do they work on Christmas Eve? Nobody knows.

If we can jump all those hurdles, I’ll start treatment on December 27. If not, it will be a few days later. I kind of hope it will be later as I have plans to be away at Christmas. But I can see my team pulling out all the stops to get this moving and I am reluctant to slow their momentum. I can change plans if needs be. 

It’s an odd feeling. I just rock up at the hospital and give them my arm to stick a needle in. Behind the scenes there’s so much going on. 

When I got home the puppy took sick so obviously I had to sit and stroke her paw, all but ignoring my younger daughter who’d been sent home early from school feeling unwell. In fairness, she was fast asleep and when she awoke and found her puppy was sick she was as attentive to the puppy as I was. 

Phew! What a day. No surprise we didn’t manage the Christmas decorations today. Try again tomorrow 

xx

  • FormerMember
    FormerMember in reply to FormerMember

    Daloni, the view s wonderful, but I bet 100% better high up where you are. Are you going home today? Safe journey home.

    Has anyone heard of Robert Frost’s poem; The road not taken? If you haven’t, then this poem fits all of us like a fine glove. The poem lets the person chose two roads. One well trodden, whereas the other, so over grown, that it looks like no one has ever gone that way. Well, I think all of us are on the unworn road, the road is a trial of of its own. We never know where this road is taking us what we endure on it, the hardships and the toil it has on our health. I’ve been on this road sometimes with my deafness... but now I’ve been aware that I’m permanently on this road for better or worse. But then, I’ve never been one to take the easy road! 

    Safe journey home Daloni

  • Hi

    I hope you realise that was written with tongue firmly in cheek. My wife and I were up at the top of the shard s couple of years ago and had a meal,  part of the bucket list Slight smile

    You're going to smash this trial. If it was based on resolve and determination you would sail through with flying colours! 

    Good luck (again)

    Tvman xx

    Love life and family.
  • Hi Annette

    My son is now home, I picked him up at the boat terminal in Belfast. He hasn't been here at Christmas since 2011 or 2012 so I'm going to make the most of him. Christmas day is going to be special this year, pity my daughter wasn't here, she's somewhere in The Borders in Scotland at her in-laws this year but we'll see her  and little Harry in January. 

    Imps? No,never heard of them either, but then we have our little fairies at the bottom of the garden  Slight smile

    Tvman xx

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

    Dear Tvman

    im so glad you have shared your Christmas plans with us. It is certainly going to be special to have your son with you. Are you going to have a proper  Celtic Christmas this year? I love playing my Irish drum. The Celtic people have always believed in the little people. I think they call them the Shee. 

    The only imp I know, the little bugger, is at the Lincoln Cathedral. He was so naughty, he was turned to stone!

  • Tvman, Oh that's great he's already arrived! I thought the Irish had Leprechauns and we had Faries at the bottom of our gardens!!! 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Annette, we have leprechauns too, but we don't mention them or they'll be tricking us in some way, like hiding the Christmas pudding!

    Tvman xx

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

    Hi folks 

    I did get home from hospital on Saturday around lunchtime and had a nice afternoon playing a dice game with my daughter.

    Sunday we had a quiet morning and then went for a celebratory lunch at the local gastro pub. It was right festive. We decided that, since we won’t be home for Christmas and we don’t have any parties planned, we would leave the tree outside in its pot where it grows quietly all year and let 2019 be the year we didn’t get the decorations up. 

    I was all set for a quiet evening when the doorbell started go ring. My neighbours had got together and decided to come round with bottles and biscuits and chat. It was unexpected and quite lovely. I felt I had to explain the lack of decorations mind you. Nobody seemed bothered. 

    Now the final hospital appointment is over. All fed checks and screening is complete. We are at my niece’s in Norwich. I start treatment on the trial on Friday but until then, it’s time to relax. 

    xxx

  • Have a great time at your niece's Daloni, and get to sleep! Lol Joy

    Tvman xx

    Love life and family.
  • Hi Daloni, I'm so pleased you are now at your neice's and can sit and watch all the goings on while resting! (Remember R&R). Let everyone else do the running about and you just enjoy your meal! Are you taking Noodle with you?

    That was a nice thing for your neighbour's to do, although I'm sure you were exhausted by the time everyone left!

    Im so glad all the hospital checks etc are finished. It's a shame you have to interrupt your week for treatment but if it keeps you around for another while yet (I'm thinking years!) then I'm all for it! I hope everything goes smoothly and you don't have any hiccups on Friday!

    Oh don't you worry about your decs this year! Our daughter put our tree up but I have only written a handful of cards, to our children, grandchildren and our elderly neighbour next door! I thought by the time I write them and post them, they'd be too late for Christmas anyway!

    I wish you and your girls and extended family, a Healthy Happy Christmas and to everyone else here too!

    Take Care 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Good you can have Christmas with your family and have hope for 2020 with a new trial.

    lovely to have people around you decorations are not so important.

    i have the hope of taking my drug again in January and can enjoy the Christmas break as well.

    love Ruth 

    Ruth