Re: Am I winding myself up?

Thyroid cancer

A group for anyone affected by thyroid cancer to get together, ask questions, share experiences and support each other.

Am I winding myself up?

No. of entries: 39 | No.of favourites: 0 | Posted on 23 Jan 2012 12:10
  • Very good news about your thyroglobulin result! Mine's been a similar level for 6 years now. Am hoping it stays that way now I've reduced my dose from 150mcg to 125mcg.

    On the book front, John Diamond's C Because Cowards Get Cancer Too is an excellent book. Moving and hilarious equally. He had throat cancer which did sadly kill him but it charts his journey from diagnosis and gosh I could relate to so much of it. Can thoroughly recommed this book.  Ruth Picardie's book was very sad and upset me a lot because my daughter was only 6 months old when I got my cancer diagnosis and leaving her and my older daughter behind was my MAJOR fear. So that was a hard book to read. If The Spirit Moves you by Justine Picardie, Ruth's sister, is a very good book too. Not about cancer necessarily but a glimpse of how cancer affects other family members too.

  • I've read the Diamond and the Picardie and I just started 'If the Spirit Moves You' but I think I'm going to hate it. I just don't get the whole spiritualism guff at all.

    I also read 'Singing the Life' which is about a woman who had BRCA1 gene and got pancreatic cancer as well as the book about Patrick Swayze's pancreatic cancer which barely even mentions the disease and is all the more moving for that.

    If I had Breast Cancer one thing's for sure I wouldn't want to go near Picardie's book - it's far too upsetting.

    If anyone wants a Thyroid cancer book, Laura Brunelle's 'Dirty Bombshell' is entertaining BUT she does rather overdo the whole pain and anquish at the beginning so I don't advise anyone to read it until they've got their surgery and RAI out of the way because her experience was SO different from mine that I think it's rather unnecessarily scary.

  • The problem about getting any type of cancer, even we the lucky ones, is that it always will be a huge shock then becoming normal as we get used to it. I also experienced the shock, treatment and people's experinces here, and in the day to day routine; it did change my life to quite a certain amount. So I understand completely Barbara that you are hoovering up info/writing etc on cancer/and overcoming adversity. We are living it too after all. I am also very glad to have postcode lottey landed with such a great hospital, unlike Ruth Picardie.

     

  • Hi Lauren, good luck with your operation on the 27th. Hope you'll be happy with Marsden. My Onc at Marsden is excellent. Hi Barbara, great news on TG! Hope your sister is ok with no surprises on her tests.
  • Thanks for your message (and remembering!)

    I had my first appointment at the Marsden on Friday - and my God what a difference..

    From the moment I walked in the door, there is a better vibe all round - the staff at reception are smiling and helpful and it continued throughout my morning spent there.

    They couldnt understand why the UCH hadnt operated before or over christmas (the doctor shook his head and tutted throughout my account of what had happened at the UCH)..

    They want to do the operation Weds / Thurs.. But they want to do a CT scan first so they know what they need to take out and arent "going in blind" - they were shocked that the UCH had not given me a neck and chest CT scan already and hadnt planned one for before the operation..

    I have been given a key worker for a point of contact, he said to me that I probably dont have questions now as its always a lot to take in, but gave me his card and said when I do have questions, dont hesitate to call and he will be there to answer my questions. A huge difference from the UCH where I was told "you have had your consultation - you should have asked your questions there - you dont get another one!"

    The UCH by the way, had still not sent through my notes! I phoned them and of course someone said they would make sure its done immediately - will phone them Monday to see if they have actually managed it..

     

    However, there is now another spanner in the works.. My son has had a terrible chesty cough and cold, and Im just starting to feel as though I have caught it today.. Will ask if its okay to have the op with a cough.. 

    Love truly, dance freely, give kindly, feel deeply, smile generously, speak openly, dream daily and hug your friends often

  • That's good to hear Flaurenoko, and Marsden does sound excellent. I do know they have a thyroid SCN(specialist cancer nurse) who can help with loads of problems & support. If you do have contact, I'd be grateful for any feedback as we're trying to get one for St Marys Paddington(ie for joint Thyroid). If you are going down with a winter chill you should be able to get everything checked, as I'm assuming you will be having a 'pre-med' before op? All the best with that too. Yours Oliver.

  • I had a really crappy cold when I went for my lumpectomy and I was worried they would call off the op. The premed nurse explained that if there's an infection in you they don't want to 'push it down' into your lungs with all the anaesthetic pipework - lovely image. But if it's not a full blown infection, more of a 'snuffle and snot' case, they may well go ahead.

    I had a shocking post op cough - they type so bad it wracks your whole body - and I can't help wondering if that was partly due to being full of cold before the op.

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