Hermit

I was out and about yesterday! Actually, I've been out and about a few times, but yesterday's excursion in the town was the longest I have been out for!

I also went to a friend's birthday party last Saturday, but I kind of had to be talked into going by my sister-in-law. Don't be offended, friend of mine, if you're reading this! I'd just become a bit of a hermit. (In fact, sometimes when I'm sat in this particular armchair, I feel like a little bit Rear Window!) It was hermitage on the point of agoraphobia!

I think I'd just got used to being indoors. My shoulders still hurt, so I don't want to be too far from a comfy chair. I feel like public transport would super uncomfortable (not to mention that I don't even know what the bus fare is anymore!) and even if I could drive, I'm not sure I am in a fit state to do so. Oh, and it rains sometimes, and who wants to go out it in the gross weather?

After my friend's party though, I decided that getting out and about was good for me, and if my shoulders started to hurt, well that is what paracetamol is for!

So, my sister and I went into town yesterday. I'll be honest, it was a little overwhelming, and there were times when all I could do was sit and stare at everyone and everything! We took it easy though and I know my limits, so I knew when to call it a day and go home.

It is still a bit frustrating though, because I got very achy and weary yesterday. To the point where I just had to have a little cry and a lie down. I guess that, even though I know my limits, I'm a little bit impatient with myself. I want to do more, but I can't just yet.

I still want to try getting out and about as much as possible. No more hermitage for me! It really wasn't a bad trip to town, either! My financial situation is not as bad as I thought it was (checking your bank balance is always frightening) and I got some new make up!

Now if you'll excuse me, sunshine is calling me!

St. James is a lovely place!

The next stage of my treatment is rearing is radioactive head! Today I visited St. James to have my pre-assessment and see the room I'll be staying in.

It couldn't be more different to the hospital where I had my operation! I mean, that hospital could really take a leaf out of this hospital's book! The staff were so polite, friendly, and well-informed. The building is beautiful. At one point my sister said she couldn't believe it was an NHS hospital!

It was still kind of boring though. Same old stuff. Form filling out and whatnot. I did have to swab my groin, though, which was...new. The nurse doing my pre-assessment turned around so I don't even know if I did it right...ANYway, let's move on!

This part of the treatment is less of an ordeal and less scary than the operation. The operation felt like it was coming towards me like a freight train, whereas this is coming towards like a different thing. Something a bit nicer. A puppy? No, that's too nice...This isn't as scary, let's just say that!

It's crazy though. They bring me the capsule in a lead case. I drop the capsule from some tube thing into my mouth. My sister pointed out that it's a bit weird that no-one can touch it but I can ingest it!

Visiting is very restricted, and the amount of time visitors can spend with me is dependent on how much radiation. So, on the first day, visitors might be only able to spend 20 minutes with me. The same thing kind of applies when I come out. I'll have to be in isolation for a while, but how long for is dependent on how much radiation is still in my system. So while I'm at hospital, I have to shower twice a day and pee a lot, and if getting to spend more than half an hour with someone is dependent on how much radiation is in my system, then that is a good incentive to pee a lot!

The only possible side effects are a queasy feeling and some swelling and tightness in my throat, and I would take that over calcium crashes and vomiting everyday!

I just want to get it over with and do it, because once this is all over and done with, I feel like I can relax and start getting on with life!

Weirdly excited

I'm in a good mood this evening! Possibly because the sun is shining and it's been a warm weekend! I've also just realised that this whole radioiodine isolation thing might be so bad after all.

Why? Well, the room I'll be in has a TV in, an en-suite bathroom, a kettle, and a fridge! So, it is like a hotel room, and if there is one I thing I love, it is a hotel room. Mostly I love a hotel room BECAUSE of the fact that there's a kettle in there, and when I'm in my morning stupor, it's just easier when I don't have to walk very far to make a tea.

The fridge I'm excited because it means I can have a load of Innocent juice and vanilla cokes in there. I have to drink a lot in order to pee out all the excess radiation so I might as well drink stuff I like, right? 

There's a DVD player in there, too, but given that I might have to put some stuff away for a while because they might have traces of radiation on them, taking in my favourite DVDs in seems pointless. 

(There's an exercise bike in there, too. Will I get that bored, though?)

So, there we go. I choose to treat this experience as some kind of holiday. In between now and then though, I have to have a boring pre-assessment, MORE blood tests, and a couple of injections. Then I GET TO HAVE A KETTLE IN MY ROOM!

 

Okay, I'm really tired and I haven't really spoken to anyone today which is probably why this got weird...Goodnight! 

Little bit surreal

Today I got the information about my radioiodine treatment and the other day I received a letter that had been CC'd to me, and contained all the information about my treatment up to this point. Before I went into hospital I received a letter like that as well and, I've got to say it's a little scary to see it written down as cold, hard facts.

The other day I was talking with my sister about how I'd been slightly in denial and wasn't really allowing myself to think about the enormity of the situation. She pointed out that maybe a little bit of denial is a good thing. If you're not at least a little bit in denial, how is your brain supposed to cope with the situation.

Every so often, usually at consultant appointments, I get stark reminders that I am being treated for cancer. Cancer. I'm working on another blog entry about the connotations of that word, but, that word is frightening. Not only that, but it was easier to deal with before my operation, when the problem was referred to as "several suspicious nodes". While I was in hospital however, and now that I'm out, these nodes are being referred as "tumours" or "cancer" (I feel like Dr. Evil). Each time that word is used, I feel like the doctor has slapped me in the face, and I need to second to compose myself.

I'd say 95% of the time, this whole thing just kind of washes over me. Which means that the other 5% of the time I'm like,"WAAAA WHAT IS MY LIFE ABOUT?!"

Would I call myself brave? I don't know. Maybe I just haven't fully comprehended the situation? Maybe our brains just don't allow us to fully comprehend something so mental? At least not all at once. Clever little brains!

I could never ignore this 100% because I'm always getting reminders in some shape or form. It's just so surreal that I haven't really grasped it. In fact, sometimes I could laugh out loud at how crazy it is! I almost feel like I'm outside of myself, just watching it happen. I relish those moments if I'm honest, because it's not fun when I realise what's really happening.

I really don't know if that's a healthy way of dealing with it, and frankly I don't care. I'm dealing with it the best I way know how. Which is mostly with sarcasm and humour!

Looking forward

I have to go in for radioiodine treatment in a couple of weeks time. This involves me being in radiation in hospital, and then being isolated for a couple of weeks afterwards at home (just because I have to avoid pregnant women and children under 16. Just in case).

This gives me a chance to sort out a few things around the house. Like, organising my drawers (*snorts*), organising my toiletries and make up (*snorts...at any attempt at organisation*). Once I'm allowed to be around other people again, there's some other things I'd like to do!

For instance I'd like to go on some day trips, because Ilkley and Harrogate look like lovely places! 

I might revamp my make-up collection and give myself a nice little Spring/Summer makeover!

My sister is getting married so I'm looking forward to the wedding and hen do.

The Lion King is apparently coming to Bradford so I would like to see that if I can!

So, that is my summertime to do list (let's be real, the stuff to do with organising my life might not happen)  I may add more, but for now this gives me something to think about when I'm avoiding people!

Hard work feels good

Today, during a train of thought, I was thinking about how I would like to go on a hike when all this treatment malarky is over. This led me to thinking about hiking in my summer camp days.

It was hard work, and I never did it without thinking a LOT of negative thoughts and having a lot of internal grumbling about it. When we got to the top though, it was all worth it! I got a real sense of accomplishment, and a lot of satisfaction. (Not to mention the joy of taking in the view!) I would be exhausted, but it was a satisfied kind of exhaustion that can only come from putting in a lot of effort. (Oh, and this one time, on the way back down, it started raining. My friend Laura and I just started running through it and yelling at the top of our lungs. Pure joy and very liberating! That has nothing to do with this. I just like the memory)

If we're using this hiking analogy, then I am not even at the top of this hill. If anything, I'm sort of mid-way, eating a pack lunch and wondering how long it's going to take to get to the top. Knowing that there's still a long way to go that's probably going to be tough.

The goal with the literal hill, was to get to the top of it. So we had no choice but to climb it. The goal with my metaphorical hill is to beat it. So I have to go through the treatments.

My literal hiking experiences were not always fun or easy, but fun to conquer. This metaphorical hiking has definitely not been fun or easy, but I know I will feel immense satisfaction when it's all over. I will come back down that hill yelling and running! I will feel good, because I put in a lot of hard work and effort.

The new normal

That's the second time I've named a blog entry after a TV show. Hopefully I won't do one called Have I Got News For You. If I do one called Skins, then assume I've become a psychopath and call the police okay? Okay.

One day in the hospital I started crying because I wanted things to just be normal again. I wanted to be in my pyjamas, in my own bed, drinking tea out of my Simpsons mug. What didn't occur to me at the time was that my life was taking on a new definition of normal.

I'd been in hospital for so long at that point, that it was becoming normal! The next day, my sister brought me my Simpsons mug and put a cup of tea in it that she'd bought in the hospital cafe. Don't get me wrong, I really did appreciate the gesture and if that mug hadn't had tea in it, I would have cradled it like a child. Something felt a little bit weird though. It was like I'd got used to drinking tea out of the NHS mugs. Drinking from my Simpsons mug felt a bit surreal.

I've previously mentioned about how I think you can become institutionalised in hospital, and I did. To the point where, even though having to come back in was incredibly annoying and upsetting for me, I don't mind  saying that part of me was kind of relieved. Some of the staff would say,"Oh, hello Adele! Are you back?" I was nearly like,"Yes! Yes I am! How have you been? What's the gossip?" That soon wore off though, and I wanted to come home again.

I was there for so long that I'd simply got comfortable with the routine. This had become my definition of normal. I knew when I would be brought medication, I knew when I would be given my main meals, I knew when I would be offered a cup of tea. I'd got to a point where I was chatting to the some of the staff like we were old friends! Once I started getting better, it was like being on a rubbish holiday.

Even now that I am out of hospital, I have a new definition of normal. Taking medication is now a normal part of my life. The scar on my neck is normal now. I am adjusting, because I have to. Eventually I will stopped being surprised by seeing my scar in my reflection. Eventually will take my medication without thinking about it (it's doubtful that I will stop whining about a certain calcium supplement though.) Hopefully I will adjust to this new lifestyle as quickly as I adjusted to being in hospital!

This, whether I like it or not, is my new normal.

The worst things

Look, I don't want to get dramatic, but it's going to happen. I'm here to tell you the worst things about being in hospital.

-Hospital food is THE WORST! (The mere memory of it makes me do a tiny vomit in my mouth)

-Blood tests are THE WORST! (Especially when they wake you up at 6.00 in the morning to do them)

-Ward rounds are THE WORST! (Yeah sure, I'll just sit here eating breakfast while you discuss me like I can't hear you)

-Vomiting is THE WORST! (Although Weetabix does make for quite a pleasant vomiting experience)

-Anti-embollism stockings are THE WORST! (They only come in one colour as well. What's up with that?)

-Hospital gowns are THE WORST! (Inadequate dresses)

-Canulars are THE WORST! (They get in the way and they itch!)

-Calcium problems are THE WORST! (Get it together, body!)

-Calcichews are THE WORST! (There's that tiny vomit again)

-Catheters are THE WORST! (Imagine constantly peeing but never getting any kind of relief)

-Using a commode is THE WORST! (They wondered why I had trouble "going". It was a chair with a cardboard bowl attached!)

-Overhearing a doctor and a nurse discuss your poo is THE WORST! (Yeah, this happened)

-Hospital beds are THE WORST! (Weird dimensions)

-Hearing me talk about my poo, pee and vomit is THE WORST! (For you. Probably. Sorry)

-Having to take so much medication is THE WORST! (Previously I thought the three vitamins I'd been taking each day was a bit much!)

-Shoulder and neck pain is THE WORST! (Can't get comfy. Or do anything!)

-Having a really weird numb feeling in my neck and ears is THE WORST!

Okay. I'm done. I think I'm done anyway. Phew! It was so good to get that off my chest!

Angelina Jolie's boobs

Will be the subject of this blog. Without visual aids though, cheeky!

As far as I understand it, she had a double masectomy. A preventative measure, because she was found to have a cancer gene.

Now, I wouldn't necessarily call her a hero. She was presented with an option, and agreed it was the best course of action. However, I still think someone could draw some inspiration from this and I'll explain why.

Aspects of cancer treatment can be demoralising. Having to have a masectomy. Losing your hair during chemotherapy. Even I got a bit of an unpleasant shock when I first looked in the mirror after surgery! You can't always find the strength to say,"Well now I can get a bunch of fun scarves to tie around my head! It'll be fun!" or,"Well now bikini shopping might be a bit easier!" For some it is probably a constant reminder of how unfair the situation is. 

Here's where I come to Angelina Jolie. Yes, the woman has done some weird stuff, but she is still strong, confident, and incredibly beautiful. Losing her boobs is not going to change that (and even she probably had to brace herself when she saw her reflection for the first time after surgery). I hope that other women who've been through this kind of thing would see that they can still be strong, confident, and beautiful. They ARE still strong, confident, and beautiful! 

Strong. Confident. Beautiful. 

The next step

So, today I went to the hospital where I will be having radioiodine treatment soon. It was mostly just a chat with the consultant and the thyroid specialist nurse (that is a thing you can be). Mum took loads of notes, and I just kind of nodded a lot. I'm not as nervous about this really. I just want to hurry up and do it.

This particular hospital is kind of, well, nice. As far as hospitals go anyway. It had a Costa Coffee in for crying out loud! Yes, that is how I measure how nice a place is. By whether or not there's a Costa Coffee. There was art everywhere, and a piano for some reason. The waiting room had some terrible poems on the wall. It's obviously geared towards making you feel more at ease, and probably to trick your mind into thinking you're not in the hospital at all.  Your mind isn't that stupid though. It knows a waiting room when it sees one!

The next stage sounds like it will be less of an ordeal, though. I'll take a capsule of radioiodine on the day I'm admitted and then spend the next few days in isolation. That won't be as bad as it sounds because the room has a TV in it and stuff (not to mention a kettle and a fridge. It's basically a hotel room).  So, hopefully no vomiting or calcium issues. The worst part will probably be when I have to be in a scanner for an HOUR before I leave, to check how much radioiodine is still in my system! An HOUR! I might take a nap.

The highlight of my appointment was finding out that there's actually a thyroid cancer foundation that you can join and they will hook you up with a buddy, amongst other things. So, I will be getting involved in that, I think!

On a different, and more vain note, I feel like I've kind of let myself go a bit. I think being in hospital, even though you're clean, you just get used to wandering around in pyjamas with no make up (and matted, greasy hair because you can't wash it properly). You don't have to really make an effort for anybody so you don't. I just felt a bit self-conscious today because I was actually out in public and I was just very aware of my hair, and my face, and just everything! I just need a lick of mascara and I'll be fine.

I'm apparently sounding better today, and my shoulders do not hurt as much and are easier to move. I still think that being referred for physiotherapy wouldn't be a bad idea, though. I just need to be more patient with myself, I think. I'm recovering from a major operation, not the flu!  Life has not changed that much really. I am without a thyroid and on medication. It's just getting the balance between over-exerting myself, and just sitting around.

Speaking of medication, I should probably go take it now!

The voice

 No, not that TV talent show (though I could go on one, given that I have a killer sob story), I'm talking about my precious little vocal chords.

In my first entry I mentioned that when they take out your thyroid they have to be careful to not damage your vocal chords. I'm sure they were as careful as possible, but unfortunately my left vocal chord no longer works. (All part of the elaborate sob story I will tell at the TV talent show audition).

It's really not that big of a deal as apparently the right vocal chord compensates for it, and people have said that they do not think my voice is all that different. It's just that when you're on your own in a room, your thoughts wander and get pretty melodramatic. All I could think was,"What if I can't ever sing again?" and I had to shake myself out of crying on my pillow like a Disney Princess. 

I have sung a little bit. Just to myself, and the only difference I'm hearing is not being able to hit high notes as well as I could. All I really need to do ,when I'm up to it, is call my singing teacher and fill her in on what's happened so she can try to help me out.

So I have a goal in mind: my sister is getting married at the beginning of August, and has asked me to sing and play something at her wedding. Now, I may only have one functioning vocal chord (which may or may not fix itself apparently) and I may have "limited movement" in my shoulders, but I WILL do this for my sister! Even if I can't play anything properly, I will find a way to sing!

Look out, Current Popular Singer, I'm right behind you!

Pesky calcium

So, turns out, calcium is like, REALLY IMPORTANT YOU GUYS! If your levels drop, it can wreck you.

As well as your thyroid, you have a thing called a parathyroid, and that is responsible for your body not being an idiot with calcium (see? we're educational here at Pandora's Neck) My parathyroid stopped working after the surgery (apparently it is now "waking up") and so I was basically have to feed my body calcium and was at the mercy of raspberry yoghurts and chalky calcium supplements.

Two days after surgery, I was tingling all over, all day. At one point I thought they had set my bed to vibrate or something, it was that bad. It got to the point where I felt like someone was tugging at my skin! Oh, and the rotting cherry on the world's worst cake was that my hands locked! My fingers fused together and could barely move! That was the scariest part.

The most frustrating part is that I couldn't seem to get anyone to understand, or at least be as concerned as I was. Don't get me wrong, the staff were great and eventually helped. Their initial reaction however, seemed to just be,"Yeah it happens" and I was like,"Why is it happening? Make it stop!" It seemed to be wearing off after a while, but then as the night progressed it just got worse. That, dear reader, was possibly my worst night at the hospital, and it took one nurse to finally help me out.

That night I was tingling all over and was severely dehydrated. I did not sleep. I couldn't get comfortable and I was absolutely terrified. At one point, all I could do was shoot up a prayer and say,"Okay, I can't do this with my own strength. Help!" At around 5 or 6 in the morning, a nurse asked me if I was okay, I told her no and explained how I was feeling. My right hand had completely locked, but a nurse had not realised and stuck a canular in it so she could put an IV in. Jess, who'd asked me if I was okay, grabbed my right hand for some reason, at which point I yelped. She asked me if that had hurt me, and when I nodded she FINALLY leapt into action.

She wheeled me around (on the infamous commode, as there were no wheelchairs to hand) to a part of the ward called the Progressive Care Unit, full of beepy machines and IVs. The first thing I saw was a woman, who was not only attached to IVs and various beepy machines, but also had a tube coming out of her neck! I realised then that the situation had got very real and very serious. I want to say that that was my exact eloquent thought, but my exact thought was,"WHAT'S HAPPENING?!" I lay there, bewildered, and feeling like a mannequin again, as Jess and another nurse attached me to an IV and a heart monitor. I told Jess that I felt frightened, and she promised me that it would be okay...and I trusted her, wholeheartedly. Simply because she was the only one to kick into high gear and help me.

I spent about 24 hours in the Progressive Care Unit, but I didn't know at the moment that the was beginning of a vicious cycle. My calcium would drop, they'd hook me up to the IV, I'd be fine again, then my calcium would drop and it would start all over again!

When they thought they had sorted it, they sent me home. It wasn't over though because, guess what? You can have TOO MUCH CALCIUM! I know. I didn't think it was possible either. I spent my second day at home feeling slightly in denial and trying to hold back whenever I needed to vomit. On Sunday morning however, my body fought back and I could not stop vomiting!

My family brought me back to the ward (where we encountered an annoying doctor who obviously thought that being sarcastic made him quippy and witty but instead he was just rude), fluids and anti-sickness medication were pumped into my body and we were back to square one. Apparently though, when your calcium gets too high, you can become psychotic so, I guess that puts vomiting into perspective!

Today I had a blood test, and they said my calcium was at an okay level. I'm still on disgusting medication but, when I initially came home and they had me on three "calcichews," three times a day. Now I'm one "calcichew", three times a day, as well some stuff called One Alpha, so it's slightly more bearable!

 The nonsense with my calcium is what was keeping me in hospital all that time, really. I'm sure I will relax at some point, but for now I am still fearful of it dropping or rocketing up and having to go back. I feel I am always on the alert for tingling, or my hands locking up. Or going the other way and feeling nauseous (or a weeny bit psychotic).  Got milk?

Honey, I'm home!

My my, it has been a while! Sorry about that, but I have been in hospital for an annoyingly long time. 

I have been in hospital for three weeks and now I'm trying to adjust to normal life. I was discharged  for the first time, last week, but then I spent the weekend throwing up and was right back in. If I'm honest though, that first weekend was tough. I just don't think I was mentally prepared for it. 

You see, I think you can become quite institutionalised in the hospital. They wake you up, bring you your medications in little cups (actually, they look like the little cups you can put ketchup in at McDonald's. Which is worrying). They bring you lunch, and more medication. They bring you tea. Then they bring you your final daily dose of medication at night and say goodnight to you. You don't have to take responsibility for it or think about it. When I came out, I suddenly had to do it all myself and I found it rather overwhelming! I felt like a ghost. A ghost who's life was about to revolve around taking medication! Of course, it didn't last long, for I was right back in hospital on Sunday because I couldn't stop vomiting! More on that some other time.

There's also something very undignified about being in hospital. My butt was hanging out of my gown, I had drains hanging from my neck and catheter hanging from...down there, like the worst burlesque act ever. A couple of times I had to use a commode, (if that is how it is spelt) and they are so awkward. I mean, I had a pretty shy bladder to begin with, but then they present you with a chair that basically has a paper bowl attached to it and expect you to use it as a toilet! Now, I don't know about you, but my parents spent quite a lot of time trying to teach me not to go to the toilet in chairs. So, for a nurse the present me with what is essentially a chair and tell me to do my business in it, goes against my natural urges! I've thrown up on myself quite a lot. A doctor pulled the curtain open while I was being strip washed. You just get used to it after a while.

It's been a frustrating time, because I went in feeling relatively well. I became ill after the op! My calcium levels have been up and down (that's a whole other blog entry!), another patient gave me her biscuits when she was discharged and they turned out to be TWO YEARS out of date and gave me food poisoning! I have been throwing up a lot and they didn't really know why. One afternoon I turned to my sister and asked her why my body wouldn't just behave. I had moments where I would just think to myself,"Come ON body! Power up!" I had to keep reminding myself that I'd had a major operation. I mean, they basically excavated my neck! It was taking a while to get back. The doctors were probably just as frustrated as I was. It can't be fun for the doctors when you're looking for answers and they just don't know. At one of my lowest points though, that amazing Cancer Research ad came on TV, and reminded me that I could kick this thing's ass!

I'm very proud of myself though. I have been exposed to needles thanks to endless blood tests and the injection they put in your stomach to prevent clotting or something. Actually, the needle in the stomach was worse than the blood tests and the nurses know it! I had one nurse come in and apologise for what she was about to do, and then tell me she had been trying to avoid it all afternoon! It hurts, and continues to hurt for a good while afterwards. Now when I have blood taken I just get on with it. I can even look right at it! Mind you, my veins have now had quite enough of your needles thank you very much! 

I still have a long way to go though. I have to go back to the hospital tomorrow for a blood test. Then on Wednesday I have a consultation at St. James hospital, so the next stage is rapidly approaching! 

Now if you'll excuse me, I have some medication to choke down.