Hi! I’m new here (but not to health issues 
) and just seeking some views from people who’ve been through or going through similar stuff
Firstly my medical history (it’s long so I’ll summarise!) I had chronic myeloid leukaemia (CML) age 11 and bone marrow transplant within 6 months of diagnosis. All went well. Age 15 returned at molecular level and treated with donor lymphocyte infusions. Killed the CML but left me with graft vs host disease (GVHD) which attacked my skin and connective tissues and has left me physically disabled.
Fast forward 15 years (and all the minor things the GVHD caused) to September 2020; I have a large neck lump. Scanned and it’s a goitre on left side of thyroid and totally fine but on the other side is a small lesion (unknown if benign or malignant) and best treatment is removal and decided best to remove all thyroid since the goitre is large and could require removal later if left and with my other medical issues one surgery is best. Had surgery nearly 4 weeks ago and they told me they would test the lesion just in case. (Surgery was a breeze and wasn’t at all as bad as expected except for the whole pandemic thing stopping me having family with me to help with my care needs)
Got the result today at my follow up and turns out that little lesion wasn’t a nice little lesion!! 
It was cancerous (papillary I believe). Dr obviously pointed out that the main thing was that it was already out so that’s the main step dealt with but I need radioactive iodine pill (RAI is that right??) which will involve another stay in hospital.
my questions are mainly:
1. what’s others experience of this been?
2. anyone have advice on being physically disabled whilst undergoing RAI? (I’ve asked the nurses and they said they’ll get back to me but I wondered if anyone here had experience? Mainly the fact I need someone 24/7 for basic care assistance).
(These are all I can think of right now but I’m an over thinker so I may add more to the thread later 
)
I am trying not to google and have read all the information leaflets and booklets given to me today (hence how I ended up here!) but I really would like some info from people who’ve been through this or similar or are going through it at same time. As I mentioned I overthink everything, especially when it comes to my care as my family do a lot of it so we’ve all kind have got used to it and it’s autopilot, so it’ll (hopefully) be reassuring to hear from others.
thank you in advance for any help!
Hi Can I offer you a warm welcome to the Macmillan Online Community. I’m sorry to read about your diagnosis but I’m glad you’ve found us. My cancer is different, but a cancer diagnosis of any kind makes us ask lots of questions, causes confusion, stress and probably emotions we’ve never experienced before. We all agree, the endless waiting for tests, results and Consultations is so debilitating so to be able to talk to other people who are in the same situation will help you get through this.
The Macmillan Community is organised into dedicated support hubs. You’ve joined our Thyroid cancer group, this will be a good place to meet up with others making the (support of a family member on the) same type of cancer journey. I'm sure someone will be along to chat soon as there was discussion about radioactive iodine recently. If you look back through the posts and find it, just click on reply and chat>
The Macmillan Support Services also provide lots of information, support, financial guidance or just someone to listen.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Sending you welcoming hugs B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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