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Thyroid cancer

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

the youngest.....

No. of entries: 37 | Posted on 23 Jul 2011 05:35

the youngest.....

  • goliver4
    Do you get access to an SCN

    Whats one of them? Big Smile I could do with some sort of stick as the carrot isnt working here lol. 

    Linda Blair of Exorcist fame? 

    Thanks for the input Ol, dont want to go on about my treatment but I think push is slowly becoming shove, I know TC isnt a priority, Im as laid back as the next ,but I think somewhere someone needs to get their finger out.

     

    Dean

  • Funny isn't it that a lot of us patients don't know what SCN's are, and it's because PCTs(while they still exist in current form) don't want them on cost. Specialist Cancer Nurses. 

    Ah there I am day 2 after surgery!(green+ puke add to taste).

    The side effects will come & go Dean as you know. When you have next ultrasound drop a few hints to Doc doing it to see if they can spot your saliva gland, and if any damage shows up. My lead consultant in that Dept who, more's the pity, has just retired  spotted it clear in me. She said it was distorted and that she hoped it would come right over the following year. It seems she was right.  We put our lives in these peoples hands, and my lot get thumbs up.

     

  • Just read your post Kazzmo, and despite you putting a brave face on things, your med team(s) sound a bit slack if u don't mind me saying so. If they couldn't clear you out during TT then surely your bloods would have been more emphatically screaming 'cancers back' in the years following. Sounds like you got a raw deal. And I'm sorry to hear the RAI failed on(both) trips. Wishing you well- Oliver.

  • Thanks Oliver, i have asked them on several occasions how the TG could be undetectable all these years if the cancer was recurring. and they just fob me off with technical crap..

  • I'm a bit of  recent convert to CNS's  Cancer Nurse Specialists who I've been referring to as SCN'sup till now(though I think SCN sounds more apropos), and when I sit in med pro/patient group and listen to the surgeons and clinical director fighting to get them in the hospital(St Marys Paddington in this instance) I dimly see that this is such a benefit to us as patients, and clearly to the health pros. When I read your cancer story Kazzmo I have to ask - did you have an SCN er CNS?? Because even though I had no benefit from knowing one, specially during the early dark days of pre and diagnosis, I really can see that it would have helped. And whatever your set up re nursing - if a no I would have thought having someone fighting your corner with you might have saved you a shed-load of heartache.  When you get cancer it's time to 'cut the crap' ~yeah.    Ol.

  • Kazzmo

    Thanks Oliver, i have asked them on several occasions how the TG could be undetectable all these years if the cancer was recurring. and they just fob me off with technical crap..

    I have to say you've got me a bit unsettled with that post. I'm overdue for my WBS because of the thyrogen shortage. The onc wants to wait for thyrogen because I had a hurthle cell carcinoma and he wants me to max the TSH to encourage as much pick up for the scan as possible.

    I keep telling myself not to worry about the delay because so far the thyroglobulin results have been fine. Now I'm wondering if I'm just taking for granted that they would show up a problem if there was one.

  • Barbara, i think i have just been unlucky, they say they have not come across this before, they say i am an enigma. Either that or they are trying to cover something up that has gone wrong.

    When they first realised i had a recurrence, they were passing me from pillar to post, i was told the op would be done by either of the two top ENT surgeons, then after 3 weeks of hearing nothing i contacted my Head and neck specialist nurse, to be told neither of them were going to do the op, they said it should be done by the Surgeon who did the original TT, so i went to see him, and he said it could not be done by him as he did not do neck dissections. i was left in limbo not knowing who or when i would get my surgery. In the end the surgery was done by one of the Surgeons who had originally refused to do it.

    So i didn't and still don't know what was going on between them. I have considered asking for my medical records from my TT to current to scrutinise them.

    To be hoonest i am still not convinced i am RAI resistant when i was given the huge dose 6140mbq in March 2010 my TSH was only 27, when i raised this with the oncologist, i was told it didn't matter there should still have been  some uptake, but when i read on other forums from the American patients they do not go in for RAI until their TSH is above 50. They are sent for bloods prior to RAI and also for uptake scans. (i know i shouldn't compare with the USA patients, but if it had not been for them i would not have asked for a blood test prior to RAI) I am not sure about anyone else but i was not given a blood test prior to my first round of RAI back in 2006 and would not have been given one had i not asked on the day of the RAI in 2010.

  • I know this is going off track....... 3 1/2 weeks post op do you think it's ok to go swimming?? I really fancy going but not to sure if it's ok to. I feel well enough to go but dont know! I'm well on the outside but does it mean theres still lots goin on inside???

    oh dear im confuddled!!

  • I was allowed to have baths after the stitch was out - one week post surgery. So if your scar is healing up well, I can't really see why you wouldn't be able to swim. Maybe get a bit waterproof dressing if you're worried about all the pee and poo in the municipal pool (sorry - not a nice image)

  • I swim, but I left it a bit longer than 3 weeks to go again after the TT.

    Can you move your head fully? Put it right back and stretch your scar? I suppose it depends what kind of swimming stroke you do. You could start gently, doing what you feel comfortable with, and build up to full-throttle butterfly stroke thrashing in a few weeks!!!

  • good point I think I would only manage to keep my head up out of the water for a few length's and Im not one for bobbing!!!

    See I feel like Miss Invincible and I know I need it but resting and not doing very much is not my thing and the thought of being in isolation oh noooo!!! I know it's for a good reason but outside, fresh air, countryside, flowers and birds are my thing not four lovely painted walls plastic covered pillows and bedding, hospital food and the smell eww the smell!!! But I have been told by an experienced visitor that The Christie is a lot better than North Manchester so fingers crossed.

    Might leave the swimming and take a nice walk instead.

     

  • Walking is exactly what I did. Head out to the countryside and pick a circular walk so you end up back at your car (or train station, or bus stop).

    As well as the exercise bit, I found it really good for sorting my head out. A chance to process everything that you're going through. And it's just great to get some fresh air!

  • Get yourself a dog Big Smile

    my little fella was a ray of sunshine all the way through my treatment, on down days, he was bouncing around and full of beans. On good days, we were off around the park and having a daft time. Cool

    Dean

  • Absolutely yes to having a dog, cat, even a snail ~ ol

  • Hi Kimbers867!

    I also feel like I was too young to have the same as you, hopefully you will get better soon. I was 13 when it all started now five years on and I still don't feel the same or close to what I used to feel like before, as I am still trying to get the right doses that I need of my meds... although I beat it it's still part of the process!

    My advice for you through this process would be to make sure you say and react to how your feeling when your feeling it, and also ensure you are comfortable about talking about this with fam and friends, as it can mess with your head dealing with it all on your own- keep them close to you! 

    Get well soon :) xxx

    (P.S- I'm a newbie I know how it feels. lol)