A bit overwhelmed

Hey Drew,

Sorry to hear you've been taken by surprise like this. I'm just wondering if they told you why they are going for the full TT and RAI? Is it a big lump?

On the positive side, it's still just a few weeks off work. The weeks are just split into 2 blocks. It could have been worse if you'd had the hemi, then needed a completion. So, there's a mini positive spin on things.

For after the surgery, make sure you have a pile of pillows to build into a slope to sleep on. Lying flat isn't comfortable after the op. Also, you should grab a supply of paracetamol and ibuprofen in - if you're ok taking them. Some hospitals don't give you pain killers to take home, or not many. So best to have a supply in. Also, have in some ready meals, or cook up some batches of food that's easy to reheat. You'll be sore and tired, so anything that makes things easier is a def plus. Oh, and when you're sitting down, make sure your head is supported. Holding your head upright can be very tiring and painful for the first week. If you work, tell them you will def need a week off, but it might be more like 2. 

Finally, if you feel you need to talk to someone then Macmillan do have a helpline. Just give them a call and there are plenty of folks you can talk to about everything you're feeling at the moment. And of course, you have us here too anytime you need us.

Lass

XX

Thanks, Lass - I appreciate your taking the time to respond

I have no idea what makes a big lump - they said it's 2,7cm.

That's really helpful advice - will I be able to eat normally? 

And do you know when they start with the replacement medicine? and when they start with the radioactive iodine? Unfortunately they were running really late yesterday evening and everyone was trying to leave so it felt like quite a rushed appointment.

I'm a bit tearful at the moment, so don't fancy blubbing on the phone to somone - so appreciate the text message.

I hope you have a great weekend.

It's no problem at all. We've all been where you are now, so we totally get it!

2.7 isn't a big lump. It's slap bang in the middle range which is when it's down to the specialists discretion as to how to proceed. You may find that once it's out and investigated under the microscope, they change their mind again on the RAI. So we always advise to be prepared for anything to happen!

You should be able to eat fine. Quite often people have a bit of a sore throat and a cough, but that's from having the tube down your throat to help you breathe. So making sure your food is saucy is a good plan for the first few days.

The thyroxine will normally be started the day after your op so there's no interruption to the hormone levels in your body. You'll be started on a dose, probably 100, and then you'll need to arrange a blood test roughly 8 weeks later to check your hormone levels. Then let your consultant know what your levels are once the results are back, and they'll change your dose as needed - if needed.

RAI is usually done a few months after the op, but it depends on how busy your hospital are. So at a guesstimate, you'll be looking at about July for the RAI. So that will be another week off work, maybe two. However it's nothing too bad, it's more boring than anything as you're in isolation in the hospital. Usually no side effects or anything from it. But we can go over plans for that once you've got a date and it's a bit closer.

Lass

Xx

Hi Drew   I am not as experienced in all this as Lass but I do understand how you feel and it is overwhelming when you get a cancer diagnosis and if you are like me my mind goes into overdrive and the worst case scenario's seem to be at the front of the mind and there when you wake and the last thing you are thinking about when you go to bed.    I thought I would respond as I have had two cancers, Breast Cancer in 2010 and Melanoma last year 2018.   I have had treatment for both and I won't say its easy but you do get through it and I look back now I almost feel proud....     Anyway to the point on one of my follow up appts they did a routine scan of my neck and found a nodule in my thyroid (that was in January 2019) and since then have had three ultra scans and FNA (biopsies) but as it looks suspicious and has the characteristics of cancer they decided to do a Hemi (half of my thyroid removed) so they could do full pathology and I am waiting results of that (get them on Monday so am a very apprehensive about that appointment).   What I wanted to say was that I had my Hemi about 2 weeks ago - obviously its not a full TT but I think the surgery is similar.  I was dreading the surgery but coming on here and getting advice from this site helped me so much.  I did the full pillow mountain tip and got in loads of ready meals etc.  To be honest it wasn't half as bad as I thought and I was out in two days.  I did feel quite tired though and had no energy but as it was only hemi I didn't need any additional replacement medicine or calcium (which they sometimes prescribe).   I am fine now though, my neck is healing really nicely and I even went to the gym yesterday for a class, didn't use weights or anything but was fine moving about and doing a lot of cardio.   I will know on Monday whether I need to go back and have the other half of my thyroid removed and/or RAI not something to look forward to but now I have been through the surgery once it is not so daunting.   My hospital has a Macmillan nurse that you can contact and chat to and my experience of them has been very good - they are so, kind and informative and do understand exactly what a cancer diagnosis does to your brain and I find its much easier to talk to them rather than 'burden' family and friends.  It might be worth you finding out if you have a similar service at your hospital.  Good luck with it all xx

Thank you so much for the advice and support. I really do feel that I can’t burden my family with all this so value this space and hope that the Macmillan centre will be open again next week so I can go in. I hope you have a good weekend, even though you’re waiting for those results. Wishing you all the best!

Hi Drew,

I'm onto 3 weeks recovery after my surgery. I had a thyroidectomy, central neck dissection and side neck dissection with 70 lymph nodes removed.My surgeon was thorough lol. Anyway I can do most things apart from heavy lifting. I'm going for my RAI in 9 days. It all happened Pretty quick for me but I prefer it that way. Less time to worry. I was getting really anxious before it all but I can report it wasn't half as bad as I expected. You are asleep through the surgery and you get painkillers when you wake up. The worry and anxiety will make you feel worse. I know it's hard but try to focus on the positives. I have my down days and get frustrated because In tired but think it will get better when my medication starts working for me.

Thank you Jay1979. I appreciate your taking the time to respond and your experience is encouraging. I hope the good days are on the increase.

I would advise to take plenty of water in, maybe even some flavoured. I was really thirsty when I woke up and the warm tap water is yuck. Also plenty snacks and maybe a book or magazine to pass the time .I was able to eat most things straight away and the hospital food is a bit bland, and who eats macaroni with mash tatties, that was a new one lol.I was fortunate to be in with 2 lovely ladies with completely different issue s from me. Their chat cheered me up. At one point I was rolling about my bed laughing. If you need to talk to family and friends do it, don't feel like you are a burden, I'm sure you would be there for them if they needed it. You need support at a time like this. You can definitely find it here if not, every time I'm on Lass and the others have been really good at giving me answer s.

Thanks, Jay1979 - these are really useful tips. I am new to the UK so haven't been in a hospital here, but it sounds like there is a universal bland hospital food regime! I will definitely take some water - that's useful to know, and the books are already lined up! And I agree, the support and response I have had here have been fantastic, it's really made me feel I am not alone, and there is a safe place to acknowledge the struggles.

Hi Drew

I also thought I was in for a long wait, my appointment date was on 16thMay. I got a phone call last Tuesday telling me I am getting my operation on Tuesday 9th April. I had a bit of a panic but like you glad it will be over soon. I am having my thyroid removed and my worry is what else they may find. I have got magazines to take and a book for when I’m home as I don’t know what my concentration will be like after the operation.

I was in hospital for something completely different in December as found the other patients very sociable. I didn’t find the food that bad, but every hospital is different. One random thing I found handy was a polythene bag to put my clothes in while I showered as there was only the door handle to hang clothes on. 

Good luck