Viewing from the other side...

Hi

first of all don’t Google! I have had the best support/info on a social media page- not allowed to name it on here.

I had neck dissection almost a year ago as 7 months of investigations were inconclusive. TT 7 weeks later and RAI July.

didn’t find either ops particularly painful.V shaped pillow, I would recommend and also, when taking levo post op, take on it’s own on an empty stomach and don’t have caffeine/ other meds with it. I wasn’t told this and wish I had been.

Some units seem better than others on advice and support, I am in S Scotland and was also a nurse. 
Even watched the op on you tube before I had it!!

There have been updated NICE guidelines recently published which you will probably find useful . Many improvements!

Have had no complications, and now on 3 months bloods/ checks and shall have ultrasound in April, 9 months post RAI.

Wish I had been given a plan of what to expect afterwards- eg when check ups would be, other scans, bloods  etc. Never thought of myself as a control freak up to this issue!

Pleasevtemember to look after yourself, listen to your body and ask questions. 
I have all my blood results sent to me and I like to keep a record of everything. Once a nurse always a nurse!

Also it is perfectly normal to be anxious - my anxiety is through the roof at times, especially whilst waiting for results of bloods/scans etc. 

Take care, and hope your surgery goes well

Avril

Hi Archiesdad! I agree with Avril and all the advice she has given. I too was diagnosed one year ago and had TT and left neck dissection in February last year. RAI in May last year and had my latest check up in November last year. Due back at the Beatson this May. You can read my profile and you’ll see my story. It’s been a total whirlwind and shock to the system but take every appointment and procedure one step at a time. Keep focused on the end goal. I recovered quickly physically as I am a very active person and went back to my teaching job in August last year. However we all really need to take care of ourselves mentally as it can hit you later on and you wonder what the hell happened!! Surrounded by those who love you will see you through. I’m going in for a knee replacement next week (was a runner!) and think I’m more worried about that as I’ve had too much time to think about it. Take care and let us know how it all goes x

Thanks Avril and Dexx!

I've kind of come to terms with the need for surgery and RAI, but don't think I'd fully understood the way RAI may make me feel.  The thing that is playing on my mind most is within the last month I have started a new job (which I am loving!) and had the diagnosis.  

I feel I am carrying a lot of guilt also because of my diagnosis as we were supposed to be going on a big family holiday to Florida on the 30th March, so would have 2 days window from being allowed to fly after 3 weeks post surgery, so a bit close for my liking!  I'm gutted as my 14yr old and my 12yr old nephew have so been looking forward to going and they have been great, understanding why we can't go presently, but doesn't make it any easier...

Good luck for your upcoming surgery @ArchiesDad, I had mine last July and RAI just before Xmas.  Best advice I had was to stay hydrated as it helps with the recovery process but being a community nurse you probably know that already.  Hope you manage to get that holiday booked for later in the year when your treatment is out of the way.

Well Archiesdad, not sure what more I can add after the other wonderful people responded. Whilst mine is a slightly different thyroid cancer, the main surgery and worries around it are the same. Will defo pick up on the levo taking. My surgeon was very insistent I take mine a good hour before any other food or drink first thing. Also the pillow works so well after the op. I had my TT last Friday and after 5 hours of surgery when I woke all I wanted was to eat so not bad!!!

keep away from the internet also, you can read so much in to stuff about. I had an amazing cancer support team in my Norfolk hospital so any questions I had I went straight to them for assurances. 
it’s never good cancer but keep strong, use the support you have and definitely be kind to yourself.

good luck 

I was the same after my TT and was so hungry.  Well I left home around 5 am to get to the hospital for 7.30 am, was in surgery for 6/7 hours and it was 10 pm before I was settled on the ward, so it was ages since I had had anything.  I managed a sandwich and a yogurt and then tried to sleep, but the Ward was so busy with nurses on it and watching us all through the night, with a couple of ladies getting upset which of course kept everyone awake.  Hope you are recovering well @Gtee it sounds as though you are, eating straight away after a big operation is always a good sign and hope you are doing well in your recovery.

Thank you so much for the advice Gtee Just had my preoperative appointment which kinda makes things real!

Have an MRI scan next Tuesday as concerns about pain in groin and ribs, but this is hopefully just ageing pains!

Keep up with the good recovery, sounds like you are doing ace!

Thanks Petal66, doing ok so far and still eating. Stitches out on Monday so that’s good. For a bit of a rash come up on head and face which is annoying but guess just my skin adjusted with the levo!?!

Guess my big hangover still now is waiting for genetic testing as that’s the type I have and just want to make sure haven’t passed anything on to my 3 girls…. Probably the biggest thing on my mind tbh

Gx 

And keep us informed how you are doing hey

I  get a rash on my legs, ankles and knees and started to get a few on the back of my hands recently @Gtee.  I have had this for a while and was on a low dose of levothyroxine for a couple of years before my op but since my dosage has been increased post op it is much worse.  I keep forgetting to mention it to someone and must try and remember at my next appointment on Monday.  Others have said they get a rash so I am kind of thinking it is the levo but it could be other medication and I do suffer from allergies, so never sure.