Thursday, 7 July 2011

Please can I just have a little bit of certainty? Another setback.

My hearing test went fine yesterday and we were on all systems go to start radiotherapy on July 18th, with visits to the Marsden tomorrow and Monday.

Then I get a phone call from the hospital to say there's a discrepancy between what the consultant's referral letter states I have and what the histology shows, so they are doing further reviews and as a result will be putting back the start of my treatment. And they want to make sure there's nothing behind the tongue or in the larynx. And, depending on what they find/decide, there's a possibility I may have to have chemo as well as radiotherapy.

I feel as if I have had a huge setback. I was ready to start the next phase and now I have no idea what that next phase is, or even what it is the next phase is designed to treat. Feeling very fragile and low.

Something nice did happen today, though - some friends visited and presented me with the most beautiful, hand-made quilt (made by an extremely talented friend, Yvonne) and all my Runners World friends had written comments on it to give me encouragement and comfort at this - quite frankly - bloody awful time. Thank you to all of them for caring for me and to Linda for arranging it all. Such a great bunch of friends!

Neil and I need to process this latest setback. It seems as if I am having the most extraordinary run of bad luck all the way through this and I don't feel very strong about it all at the moment. It feels as if I have been knocked over and am struggling to get back up. I know that Neil, the children, my birth family and friends will help and support me through it but I feel terribly fragile right now.


  1. Sending love and hugs to you Ali, and more tissues. I'm sure the quilt is fairly waterproof too, but it's a bit too big and pretty to be a hanky :D.

    Going to PM you too xxx

  2. aw ali, that is just fecking rubbish news x x huge massive hugs from loon land. when you wrap yourself in that quilt we will all be giving you a massoof hug

    shall be sending all the positive vibes I can

    love Loon xx

  3. Hugs and positive vibes your way Ali.

    Saffers xx

  4. Oh hell Ali. Hugs and thinking of you from Hash and Blouse xx

  5. Hugs from me. Sofa and quilt and take care of yourself during this grim time
    Madge xx

  6. Ali, so sorry to hear about this setback. I do understand when you're having to deal with so many new situations having things shifted at this stage can really shake the foundations. It sounds as though they're taking very great care of you though. I hope you've slept well and feel a bit more able to cope today. Wish I could do something.

    Lots and lots of love to you Ali, and a huge hug. xxxxxx

  7. Ali: Sorry to hear of the news. Really wish was there to give you a big hug. I know Neil will do a great job in my place.
    Wishing you all the love I can give.

  8. Ali: Thinking of you, wish I could give you a mile 17 special hug.

  9. Hi Big Sister,
    Sorry to read about your latest set back but you must all remain positive and be sure in the knowledge that eventually you will get through it all. I imagine you must be at an all time low but you have all your friends across the country and the Norfolk branch of your family who are always praying for you. I wont drivvle on too much but keep your chin up and just take each small step at a time. At least a small consolation is you get to see me, Mel, Ellie and Daisy a week Monday. Love you Alison from all the Norfolk Smiffs. XXXXXXXXXXX

  10. I'm glad I was there to give you a real hug, hope it helped a little bit. It was so good to see you, and despite how you may feel, I think you are doing an amazing job of coping with everything. You have to keep believing that you are stronger than it, and know that we are all standing with you xxxxxxxx

  11. we love you auntie alison, lots of love and cuddles Ellie and Daisy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  12. Womble just pointed me at your blog ST. So sorry to hear all this news. Sorry about this latest setback.

    Lots of love from mava and Scotty xxxxx

  13. Hi Ali, we are both so sorry to hear all this latest news, life is really not fair. It was lovely seeing you last week, I think you are an absolutely amazing person! Whenever you fancy that walk let me know ...... thinking of you, Karen, Roy and Emily xxx

  14. Hope it all went well at the Marsden today

    Denise xxx