Another Day

And a little bit better. Slightly more energy, slightly less pain, slightly more movement in my neck.

I had a shower and although I couldn’t wash my hair, as my incision is supposed to stay dry, I felt better all over. I’ve been downstairs a lot more today, but although I’m exhausted, I can’t seem to nap.

I changed the dressing for my drain hole, and it looks great. Overall, recovery is happening daily. I’m still getting major headaches, I was having them prior to surgery and keeping them at bay with cbd oil. But I’d hoped they were being caused by the huge thyroid and associated issues. There was a few things I hoped would go

  • Constant, and I mean constant headaches
  • Tinnitus with vertigo
  • Lymph node pain in neck and collarbones (for years)
  • Thyroid pain when leaning forward, or twisting or just in general (for years)
  • Compression symptoms when lifting arms or lying flat
  • Trouble swallowing
  • Palipitations and atrial flutter/fib
  • Shaking
  • Twitching
  • Muscle jerks and spasms
  • Feeling edgy
  • Major stomach issues

It sounds like a lot. It those are the symptoms that I don’t think are related to other disorders, like my connective tissue disease, or just ibs. Those are things that I believe are separate and related to thyroid, a large nodule, hyperthyroidism, or taking of toxic carbimazole for so long.

So far my tinnitus is worse. My palpitations are not better, headaches are the same or worse. But I know I can’t judge until I’ve made some major recovery time. The incision is about 4 inches, so I reckon they had a task getting it out. And hopefully I’ll see some improvements in other areas over the coming weeks.

My incision looks good though. It should heal pretty invisibly.

Advertisements

Discharge notes

I read my discharge letter today, and noticed they forgot to actually test my t3. I have t3 toxicosis, I was diagnosed with a high t3, low tsh and borderline t4. It’s kind of an important test. Really silly not to test it. My Tsh is low but t4 is normal. That doesn’t help me.

But I also noticed it says thy 1c under diagnosis or problem. So that took some Googling. It appears that the wonderful FNA they took, some 7 Or 8 needles on 2 separate occasions were non diagnostic. Meaning there wasn’t enough cells to test for cancer because they took fluid. From a complex nodule. I was told everything was OK. Not to worry for 3 years. Not that it wasn’t diagnostic, not that they couldn’t know if it was benign. And they let it grow. Had someone said to me, “hey those aspirations we did, we can’t be sure from those whether it’s cancer or not,” I would have said, take the damn thing out right now. Why wouldn’t I? It was big, it was obstructing my airway, it was making me hyper and it could be cancer? Who would even want to keep that? I had no reason to keep it.

But last scan, last year I think it was, I refused another FNA. The last one had left me in pain, caused the cystic part of the nodule to swell up more, taken 5 needles, no anaesethic and really caused me discomfort. I said no. They told me that my previous complex cyst was mostly solid now. And still no one mentioned that the previous FNA were nondiagnostic. It doesn’t feel great, it’s pretty crap.

A cyst can be a simple degeneration of an old thyroid nodule. And of course there’s the t3 issues which make it most likely benign, but I really don’t know what to think. I’ve been so unwell with it, for years. I like to be kept informed and this is not it. The discharge letter says outpatient appointment in 3 weeks. I wasn’t told about it, but maybe they’ll let me know at some point.

I sat downstairs for a couple of hours tonight, watching Netflix with my husband, and eating chicken soup. I am tired, but I’m getting there. My neck is really stiff and the muscles at the back of my neck really hurt, from sitting up to sleep.

But I’m getting there. Tomorrow, even better.

Recovery day 3/4

How do you work recovery days? I had surgery wednesday morning, was out by 12:15. So does that mean after 12:15 today is day 3 or 4? I’m hoping for day 4, people say they start to feel much better day 4. And that day 3 is crap. Well I look like hell. I won’t lie. Or try to edit it with my camera.

I mean, I actually gained weight. 3 days of barely eating. And I mean i ate one half of a half of a plain, no mayo, no butter egg sandwich in Wednesday, a little bit more the next day and again the day after, plus removal of a large nodule, and I gained more weight. That’s my body. I don’t want to hide away, this is reality. This is what my thyroid did to me. I can’t lose weight. I don’t overeat, or very rarely. I haven’t for a long time. But my thyroid, even when hyper, as the last tests showed I’m actually still mildly hyper, the weight won’t go. In all honesty, it depresses me. But this is me. My body. And I’ve got to love it.

You know what else is my body? It’s cycle day 16, yesterday my period started. What? That doesn’t even make any sense. I thought I had at least another 10 days. Who has a 15 day cycle anyway? I wouldn’t mind, but I felt ovulation pain on day 7/8 (didn’t believe it was possible) which is about right for my luteal. Phase, but that was before I found out about surgery. So I can’t even blame surgery. I always feel crap on my period. It makes my uctd (autoimmune disorder) worse. The pain is always worse. And I can’t even shower. So dealing with this and my period, and no way to even get clean is a bit hellish.

Since my whole thyroid issues started my periods have got less and less. I attributed it to having babies, they used to last a good 7 to 14 days, of heavy bleeding. On average, they’ve been 2 to 3 days of light bleeding or spotting. I know that’s very light. They’ve been getting lighter and lighter for years, but I still got pregnant with my little girl really easily. If my periods come back like they used to be, I think I’ll have to consider a different solution.

If I seem a bit down today, blame the period time.

Home

I am home. I actually slept most of the day since I got back. I tell you, most of my pain is the drain site. My BP was high before I left the hospital for the first time since admission, due entirely to the drain removal. The woman opposite me didn’t have a drain and left earlier. I wonder about the need for the drain. But it probably drained 45 ml. So that’s quite a lot. But it’s nice to be home. My son has been reading to me about dinosaurs. My daughter is just so pleased to see me and wanted me to sing twinkle twinkle before bed but my voice just isn’t up for that yet. In general, it’s just good to be back. Yes I know I look rough, this body has been through the wringer.

My husband forgot to mention we had no paracetamol in the house. And it’s blowing a storm outside, but he went and got some kids one from the shop and that will do.

I find it a bit hard to believe this is all over with the thyroid. Maybe it’s just the pain, or the storm blowing a gale outside, or the reality that new challenges keep finding me, but yeah, I guess I’m worried this isn’t the end of Bernard the giant thyroid nodule. I’ll believe it when I’m told it clearly.

So keeping hold of those tiny glimmers even now.

Thyroid drain removal

Hell is drain removal. Fuck that. Sorry about the language, but it hurt like hell. Worse pain I’ve had from all of this. I nearly fainted, which is not like me, I take my pain pretty well. But this is all types of nope. I should be going home soon at least. Just resting and feeling nauseous. And not looking fantastic. But home. Sweet home to my babies and my bed.

I actually slept

I must have slept 5 hours in a row last night. Then woken by people inexplicably remaking beds and drawing curtains, even though there is no one in those beds.

I feel OK. My throat hurts and my neck is no longer numb. Yay I guess. At least there is no damage. The surgeon was worried that the facial nerve was damaged, I think it just took time for the feeling to return. Its 5am. And dark. And lonely. And I’m ready to go home.

I persuaded a nice nurse to remove both cannulas yesterday and it felt so much better. Today, hopefully the drain and then home. I’ve read drain removal can be interesting, so I’m preparing myself for that. All in all, considering I took no painkillers yesterday, I feel OK. Someone cut into my neck and removed an 8 to 10cm tumour and I feel OK. It’s weird. Hurts to yawn or laugh though. My two favourite activities.

It’s been weird being in this hospital, it’s the same hospital I stayed at most of the time while pregnant with Gideon and where I had him. Different side of the hospital, but my mind knows. My heart remembers. In a way I feel close to him here. His memories, the only place we ever knew him. All the nights lying in bed, looking out the window, and hoping. Dark nights leaving NICU, our hearts broken, tears in our eyes, but filled with so much love. Long days and longer nights and never enough time.

We visited the parent accommodation where we stayed a few weeks back. My son, now 5 years old, did a craft sale, when we asked what he wanted to do with his profits he said give them to charity. And spent a long time discussing which one. In the end it seemed right to give it to the place that housed us during those 17 days. That made it possible to see Gideon throughout his life. It wasn’t much money. But it meant a lot. When we got there, the lady that runs the house remembered Gideon. And when we left back in 2011, she bought a statue with the donation we gave her. This is Gideon’s statue. An angel holding a book, which is fitting, in our book loving house

It’s been 7 years. And so much has happened. I wonder what the future holds. I hope I find out quickly this is benign. And can move forward with my life. I hope I can finally lose some weight, because I love my body, and it’s so hard having all that extra fat. It really is. I hope my health improves. It’s been poor the last year or so. Worse than usual. Bad the last few months. But I’m grateful I’ve had the surgery. I know I needed it. I’ve been scared of it for so long, now it’s done, I can focus on recovery. Don’t fear the thyroid surgery, folks. I won’t say it’s easy or comfortable but it is what it is.

Numbness

So the numbness I believed was still local anaesethic, isn’t. The surgeon says they don’t know why my ear and neck are numb. My ear has recovered a bit but the left side of my neck is very numb. It is somewhat worrying, its like after the dentist when your face is numb. Hopefully it won’t last forever. I am experiencing some pain, on the right side mainly, where its not numb. And around the drain site, so I took some paracetamol.

My husband and the kids came round, he brought me cottage pie, which was delicious and my first proper meal. The kids were kind of hyper, and missing me I think. It’s hard being in here. Lunch is corned beef salad. But it’s not that nice. Preferred the cottage pie. They also brought biscuits, with milk in them. I’m allergic to milk. Thankfully my husband brought dairy free biscuits.

I’m tired out from the visit, so may just nap or watch bake off.