Here's hoping

I have an appointment next Tuesday 10.00 at the Churchill hospital , could be a good omen , that's my dads birthday , he passed away 3 years ago ,bit mawkish I know , but hey ! I need all the help I can get. Feel so good physically , walked 3 miles this afternoon , ate a hearty dinner , don't feel tired at all , been awake since 6, busy morning, mentally in a good place thanks to all your lovely support , just can't believe the news can be anything but good . Imagine this will fade a bit in the wee small hours . I will be really devastated if my and my family's optimism is unfounded . Wish me luck !

24 Replies

  • I most certainly do wish you luck Nigel and sincerely hope you come back with some positive news. Remember though that there is much out there for us to be optimistic about and lots of help from folk here who have 'been there done that and are still running around wearing the T shirt' 😀

  • Your thoughts are appreciated, adversity brings out the best in peopl

  • No oxford, thanks for your good wishes

  • Good luck. It will be here before you know it, keep busy until then! :)

  • I'm in a good place mentally right now , hope I can keep it up , feel so fit long walk this afternoon , another tonight 11 o clock not really ready for bed ,not in denial but hard to accept I have it , thanks for your continued support

  • Hi Nigel Q, I Am sure you will be ok . I am under the Churchill had chemotherapy last October and Was on 3 monthly checks which have now been extended to 6 monthly checks . The Churchill is a great place to be treated.Good luck for Tuesday. Regards Beano

  • Another encouraging blog thanks so much

  • Hi Nigel I go to the Churchill that are really good there - I have been on watch and wait for 6 years since I was 47 - just done Lands end to John O'groats Cycle ride - all is not doom and gloom Jules Flying for all of us.

  • If I go to lands end from John o groats it will be in my MGB , well done , thanks for the thumbs up !

  • Hi Nigel, fingers crossed all ok with tests next week, I'm sure from experience that it's never as bad as we think it will be, all the best, Terry

  • Thanks terry, I really hope so ,I lead such an active outdoor life , the idea of not being able to continue doing that scares me . At the moment every little niggle that this time last week I would have ignored makes you think, 'oh lord is something happening' would be easy to become a paranoid hypochondriac ! Lol, something I've got to get used to I suppose . Bit like living next to a volcano ain't it ! Every little rumble or puff of smoke , Would make you jump .

  • Hope all goes well for you. The fact that you feel so fit must be a good sign.

  • Saska , we live in hope ! Feeling so fit makes it hard to accept I've got it , checked my weight this morning, lost a couple of pounds this week , but as my level headed wife said , not surprising the stress and worry you've had this week , was on a diet anyway removing the results of a winters boredom nibbling, good excuse to have a big packet of crisps and a magnum lolly, methinks , bang on my target BMI so got a bit of wriggle room

    Best wishes x

  • I am also a Churchill-ite. You are in excellent hands!

    On BMI...I struggle with that despite a very active lifestyle - my son told me the other day I was getting towards being morbidly obese.........first, my son obviously does not want the huge number of taxi-rides I give him! Second, if I did get down to normal BMI, I would be a rake (must be my natural muscle and a massive brain me-thinks............)!

  • My motivation to keep my weight down is this next time you pick up a 6 pint bottle of milk ,imagine two of them tied round your neck , that's about 14 lb in weight or 1 stone , think how pleased you'd be if at the end of the day you could take them off, now imagine 4 ! And so on, depending on your weight. Re Churchill thanks for the thumbs up , just wish it wasn't so ! Uh oh a wobbly sign coming up, better get on and do something ! Lol

  • Nigel - The waiting is the worst! Check in with the Flyer. He knows all of the best places to stop for a pint or a little wine. Get out the MGB and do his route your way. Maybe with a designated driver for when you reach the point that he did of not counting the beer and not admitting to the wine! Then take a recording device (or phone app) with you to the appointment. When your brain has heard enough it will probably shut down - I call it brain freeze. It helps to be able to listen to everything again at home. Looking forward to a boring medical report from you! Best kind!

  • Ta , do you ever get over the paranoid thing where every ache and twinge gets you going thinking ' oh god it's revving up ! '

  • I have, but that doesn't mean that I don't have my moments. The more you know about CLL, the easier it is to think rationally about what those aches and pains could be. It is still important to keep an open dialogue with your doctor about them.

  • Thanks , what we do without this site, just sharing worries and having someone to support you or give you advice is so good. Wouldn't it be nice if one day this site had an extra C in front of its title , C for cured CLL . Dreams do come true ,

  • Good luck and rest assured that you are being seen by the best. I have nothing but respect for the Doctors and Nurses at the Churhill. Let us know how you get on.



  • Thanks Mike, any good feedback helps give me confidence, will keep in touch

  • I think the biggest battle being newly diagnosed is with your head .the job I just retired from involved a lot of forward thinking , if this or that scenario arises , how will we deal with it,being ready to preempt the situation . Seems to me this is the last thing you want to be doing with CLL ,the hospital visit will be a watershed in one way but I have no doubt I'll be asking questions he won't have answers to. Still Buck myself up, off to Newbury races today and a simply red concert there this evening. Birthday present from my children, it puts a lump in my throat when I think how then, only a month ago I was happy as hell, looking forward to retirement . ' if you want to make the gods laugh tell them your plans '

    Thanks everyone for sharing my moans and groans

  • Hi Nigel,

    Thanks for sharing - including your moans and groans... We've all been there, felt that way... Though so many years have now passed for lots of us (including me), that those early days have become a bit dim... Reading your posts has brought it back to me...

    Enjoy your day at the races and the concert tonight!

    Best of luck for Tuesday... Let us know how you get on...

    wishing you well,

    Paula (in Sheffield)

  • As D day approaches my wife and I are getting more nervous . I range from optimism to pessimism , a mental see-saw , still finding it hard to accept somethings amiss , so much energy without being tired, spent all morning on my allotment , carried 40 gallons of water 40 yds , it being hot and dry here , long walk in the evening , total of 5.5 miles walked yesterday , still not tired by 10.00 pm , up at 6.00 am no visible symptoms, I dream they've got it wrong , guess most people with no symptoms do. Feel tomorrow is a watershed , what a carry on ! Lol !

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