Ding, ding! Round 2

FormerMember
FormerMember
  • 39 replies
  • 43 subscribers
  • 19234 views

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

    Tell you what, the community can't have a better CC, you are always thinking of other people, you know their problems, you're among the first to reply to people, if not the first. 

    Ask that young girl to get you something softer and more comfortable, no way to treat a lady of age Smirk It's going to be so difficult for her to understand how someone with incurable cancer feels but she has a good tutor. 

    Looks like the group is picking up the intensity again, it was very quiet for a day or two.

    Take care Daloni and good luck with your treatment.

    Tvman xx

    Love life and family.
  • FormerMember
    FormerMember

    Hi daloni

    glad to know you are feeling better and back for round two.  Good to hear that you have this new lease of life.

    take care  Hugging 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Daloni I have been thinking of you for the past couple of days as I have been a bit up and down myself and not kept up with posts as much as usual. 

    I found myself thinking I have not heard much from Daloni, TV man or Annette I do hope they are well. Then TV man got in touch yesterday then your post today I only need Annette now and I have a hat trick. 

    It's a strange yet wonderful thing that although we and many others on the site may never meet we can still be there for each other. It is also the nature of the beast that when you don't see a post from someone you can fear the worst.  

    Good luck to you all. 

  • And good luck to you too

    Thank you

    Tvman xx 

    Love life and family.
  • FormerMember
    FormerMember

    Really really lovely to read this Relaxed 

  • FormerMember
    FormerMember in reply to FormerMember

    Dear

    Have been ‘off air’ for a while and then found myself worrying about everyone, so many of our group seem to be having a difficult time.

    So it’s a huge relief to read this thread and hear that you’ve picked up a bit, enough to enjoy the most important stuff like good home cooked meals with your daughter & walks with Noodle.

    I’m so, so pleased for you after all you’ve been through, and hope there will be many more of these moments to savour xx

  • FormerMember
    FormerMember in reply to FormerMember

    So it seems we’ve all been worrying about each other! It’s so good to hear from you

    and

    also coo-eee ! I see you there liking posts and all. 

    It’s true. We may never meet but our friendships are real 

    xxx

  • Hi Maz59 & Everyone, I too have been having it a bit rough the last while but at last seem to be back on the right path! At one stage there I actually thought "well, the cancer isn't going to get me at all, it's going to be an infection that sees me off"! So you can imagine just how bad I felt!

    I saw a post earlier named "Tears" about someone being upset when she heard someone ringing THE BELL at the hospital, to which I replied. Then I found Ding Ding Round 2 and hope everyone is ready for this fight we have on our hands! Isn't it great, you can be fighting and still in a good place!

    I hope we all get to a good place soon! Speaking of which, I'm off to Spain on 9/2 so hope this is the opposite from our Manchester trip on 5/12! Sending best wishes to you all and yes, I too worry about people I haven't seen post or press like for a while! Take Care everyone! 

    Thats your hat trick Maz.....well done!!!

    Love Annette x

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

    sorry you have been unwell I missed your posts the Spanish sunshine will,do you good.

    we are going to Penzance at the end of Feb and hope to get some sunshine and walks along the beach. We are going with my daughter and her fiancé and their 2 dogs so 4 people and 3 dogs.

    our son moves from Oxford to London on Feb 1st so that will be an exciting new job for him.

    love Ruth xxx

    i still haven’t got my drug it has been ordered and I have chased the pharmacy they haven’t got it yet. The pharmacy just phoned me and it has now come in Phew The specialist nurse was hopeless and didn’t chase it all she said is she would send an email and I didn’t hear back from her.

    I phoned the pharmacy myself at last I only have 2 days left 

    Ruth 

  • FormerMember
    FormerMember in reply to anndanv

    That's made my day and it's been great to catch up with others I did not originally mention. Good to know we are here and fighting on. 

    Have a lovely time in Spain my prayers are with you. 

    I have to say I am beginning to wonder why on earth I started this decorating lark. Everything you do brings up another job and it is slow work. Bit of a two edged sword for the ego also as you realise how much weaker you are but there again you are still doing it and it looks nice when a bit is finished.  I think I might have to get a bell installed to ring to keep me going. 

    We have my daughter and her family down at half term so as long as we get there by then it will be worth it. Having a downstairs loo will be a big bonus. Better get back to my cupboard under the stairs as plumber arrives next week. How do you get so much stuff in one small area and where will I put the stuff that is not rubbish? Hubby is already not happy that his ironing board is moving upstairs ( sad isn't it, but he is worth his weight in gold at times). 

    Love to all keep trying to dodge those bugs and do what you can for as long as you can.