Papillary cancer

I’m sorry to hear this.  
I would suggest taking someone with you to appointments, ask them to take notes perhaps.  
Also you may have a specialist nurse you can contact easily who can answer questions etc.  Everyone should understand the difficulty of understanding it all, even without brain fog. 
Good luck! 

I did have my husband with me  I think it was just overload and we are in shock as I had Breast cancer 18 months ago. I do not have a specialist nurse as yet there was no one at the clinic.  I must admit this journey so far has been completely different from my breast cancer journey. I can not fault the staff or treatment received so far but the lack of communication and waiting times have  been awful.

Only just read this message so a bit late in replying, but just wanted to say @Grapaul that I hope your operation went well.  I think it is a lot to take in when first being diagnosed and there is such a lot to learn about Thyroid problems.  All my appointments, operation and RAI treatment have all been on my own and there have been times I have not heard what was being said properly (my hearing is a tad poor at times) or I haven't understood something, so it would have been nice to have had my hubby with me, but the letters for appointments have all stressed to go on your own unless you need a carer for support, so I have gone alone.  My hubby isn't well himself anyway so could do without the 20 mile journey, or 65 miles to the hospital where I had my op.

Hi, that's a shame you were at your appointments alone, was it when covid was at it worst when  you were treated?  My breast cancer was 18 months ago so restrictions were still in place but even then my hubby was present at my appointments, I went to the first appointment alone and was told he could be present despite the wording in the letter. None of my letters for my appointments for the thyroid cancer have ever said come alone.  

No it was from April 2022 @Grapaul, so for the last 8 months all letters have stated to attend on your own unless you need support from a carer or are under 18.  Having said that I have seen other people in the hospitals with their partners so unless they are all ignoring the instructions I have no idea why that is.  At my appointment with the Oncologist last November she did ask if I was on my own, and silly me should have said yes because I was told to, but you don't think until afterwards.  It would be nice to have someone with me so that when I haven't picked up on something they might remember what was said, but I have got through it and it hasn't been too bad.

I think the letters are generic but I definitely would not be going myself. I just had a look at my letter for the 23rd of this month and there is no mention of going alone.  At least you have not found it to bad and have put it behind you.

Do you mind me asking how you are now with regards to your thyroid cancer? And how was the radioiodine treatment? Have your energy levels etc improved?

They must be generic I think and not worth worrying about it now, my hubby doesn't need to put himself at risk from COVID either, and he suffers a lot of pain so it was better I went on my own.  I have been fine since my operation thanks and was back to normal quite quickly even though I am 67 years old, I was so pleased to get the op out of the way.  RAI was fine too, I had a couple of days feeling a tad queesy after getting home but had anti sickness pills so wasn't too bad at all.  I think general tiredness is to be expected after such a long op, I had TT plus central and rh neck dissection, with 60 lymph nodes removed, 14 of which were cancerous so the op took 6/7 hours..  My main problem has been my vocal cords and I am waiting for an operation to try and improve them, the cancer was attached to my rh side vocal cord and has paralysed it permanently unfortunately but other than that I have felt fine, probably a bit tired of an evening after my op for a few weeks and the increase in Levothyroxine may have contributed to that.  What about you @Grapaul how have you been since your hemithyroidectomy, I read about so many people who have a hemithyroidectomy and then have to have the other half removed, but it is worth the try if possible to keep half of your Thyroid, but I guess if it all needs to come out then best get it done.

Hi, jeez you sound as though you have been put through it, I'm glad you are over the worst. I had a TT on 24 of Feb I was 3 days in hospital and still feel really tired and have aches and pains. My Vit D was really low and they think this may be the cause . I go on 23rd for the rest of my pathology results and will find out if I need radioiodine treatment. 

Oh yes I see you wrote your original message 12 days ago so of course you have had your TT by now.  I was low on Calcium but only on it from op in July - end of Oct 22.  I was on Vit D too, both before my op then Alfacalcidol after.  When they stopped my Calcium they gave me an extra Vit D Colecalciferol and last week they said to stop them too now as my tests are fine, but to have a test in  7 days just to check my levels are still fine without Vit D.  Have that on Wed this week.  Fingers crossed.  Hope your results are good for you @Grapal and you don't need RAI.  Let me know how you go on.