Hi new member with Medullary TC

Hi There,

I had MTC diagnosed last year - only left side of thyrod and associated lymph nodes removed for me. My left shoulder and arm were badly affected, which was really awkward because I am left -handed! I know for the first few months it just felt so *weak* and incapable, I could not sleep on that side comfortably at all, nor fnd a compfrotable position that did not cause pain somehow - just an ache inside. So yes, sounds pretty much as you say, you have my sympathy and understanding!

I also felt battered around the neck - one of the reasons I went to the HP oriinally was feeling like a constant lump when I swallowed. Soon after the operation that came back, but I think it was possible swelllng from the intubation used and also maybe bruising from all the rummagnig around the surgeon did in such a crowded area. It did ease off after a few months, so that will go, just take it careful.

I was told I would get tingling when the nerves stated coming back, which did not really hapen - I just noticed I could begin to feel a gentle jav with a fingernail. I was also told 90% of the healing takes place in the first six months, and then n the next six months the remainng 10%, So I guess it takes a full year to really recover to your new normal.

Be very kind to yourself, and rest as much as you can. I think seeing me so incapable surprised those around me because I am normally someone who just gets on with things at a hundred miles an hour. Ask for help, take what help is given, delegate shopping / cleanng / anything yuo are simply finding you are not up to, rest a lot, and let yourself sleep as much as you need/can, it will get easier. Yes, it will.

Thank you so much for your reply, that does give me some hope. I'm sorry you had to go through this too.

I'm so glad you said the strangled feeling eased off after a couple months, I've found it one of the hardest symptoms to get my head around. I think the shoulders may take alot longer and I'll just have to see what my "normal" turns out to be.

Like you, I did everything at 100mph and am a single parent (of a wonderful, caring teenage daughter) so have always been strong and independent. So this has shocked everyone around me, including myself!! It's hard to not feel guilty because you can't do all the stuff you did before! And you can see people thinking "Oh well she's had the op, he got the cancer out, she should be okay by now!!" Thankfully my daughter has been a tower of strength and has been realistic about it all, which has helped no end. So we're muddling through. We've also got the results of whether it's the genetic type hanging over us at the moment aswell, they're taking ages to come through!

Thank you again for replying. Sometimes I don't like to keep worrying my daughter with all this stuff aswell, so it's good to know there's others out there with similar experiences. I'm glad I braved it and posted. I never normally do forums, I'm not even on FB! I'm very private. So thank you 

Oh yes on the expectation of others, and the timescales:  people sort of get bored asking 'are you feeling better now?'  when frankly there have been and still are good days, and bad days. They want you to say that you are fine - when it is not like you have accidentally cut your knee open  or something, it goes on much longer than that! Also, you look relatively normal especially if you cover the wound (which will go to just a thin scar line in time).  So they cannot see the impact it is havng on you physically emotionally and mentally. I am so glad you have a daughter who is being so helpful for you - tell her from me she is a real star!

I have got metastases so am on some TKI drugs too that hopefully will deal with those, and really do not want to go into the detail of discussing side effects with anyone who asks 'how are you feelng?' so I do not.  If people are baffled, then tough - it is me I am looking after, that  have to be looking after, and mine,

I am also waitng on the genetic outcome - I had my op in October, apparently it was checked n April (!) and it seems probably it is not familial but the blood test was finally requested a couple of weeks ago for a definitve decision which can take up to two months , so it is still n the back of my mind that it might be....  

For someone who was generally healthy before all this, I can say this thng can really change your mindset and priorities.

Ohh yes you have said it exactly!! They just want you to say "I'm fine" in answer to their "How are you?" And it makes me feel I've disappointed them with my reply of actually about the same or somedays worse!! I expect I'll give up soon and just say I'm fine!! Yes and the "Oh you look so much better" statements when I feel like crap! You're right about mindset and priorities, I've done some deep thinking during all this about my life.

I'm sorry to hear you have metastases. I will cross everything for your treatment. When did they pick that up? Was it after your op? Gosh that's a long time to wait for the genetic results!! 

I am truly blessed with my daughter, she helped me in hospital and when I came home in ways I would never have wished for either of us at this age but she just says, well you've done the same for me for 19 years!

I've got to extend my sick leave off work I'm nowhere near ready to go bac mentally or physically. How long did you have to take off? 

Take off as long as you need from work - certanly if your arms/shoulders are weak, you probably simply cannot do much of the thngs you did automatically before. I think it took a couple of months before I could raise my arm and hand enough to tie back my hair, for instance. Little things.  When you do get more movement, you will find it aches like crazy probably, so you need to be so gentle with yourself. Bearing n mnd you cannot yet feel all your muscles properly until the nerves come back.

I only officially took a week off (!) which I was in hospital for much of anyway. I work from home as the sole employee of a Trust and told my work that things would be slower but that I would get done what I can. They have been really good, and taken some things off me to do themselves, e.g. savng me driving to somewhere for meetings etc. If I was in a more normal 9-5 or office or shop type work I would have taken several months off, I think purely because it would have wiped me out to do full days and travelling.  As it is, I can do some work, but have a sleep in the afternoon if necessary, then more maybe in the evening. I do that less now, but the first couple of months  - plenty of times. With all your thyroid out you will also get the crash tiredness from low thyroxine - are you on the tablets for that yet?

They told me about the metastases after the op - and they are spread so inoperable, hence the TKIs. So far t is lookng hopeful they are workng, but I still want the reassurance from blood results and scans etc.  I am not keen on needles, but I am getting *so* used to blood tests nowadays...!

Yes it'd be good to get those blood results and scans back to give you some definite results and reassurance. I hope you don't have to wait too long.

Wow only a week off!! I work from home too but my lower back and of course my neck and even my shoulders just using a mouse, all hurts like crazy if I sit up at my computer for even an hour at the moment. Got the rest of this month off still, so will just have to see where I am after that. Definitely need a new supportive desk chair though, mine's rubbish!!

I was started on the thyroxin tablets straight away in hospital. I'm still on codeine too (which I keep hoping to come off but the pain's still too bad), so the combination of everything's probably not a great recipe for tiredness!

Hi there,

Hi there,

Hi there,

How are things doing with you, k9crazy?   I hope the strangled feling at least is starting to ease for you.  Is the numbness any better?  How are you doing getting soe sort of new normal for yourself?