Day 5 - homeward bound

Going home – YEAH!!!

Couldn’t wait to go home, nurses and hospital great, but no place like home. This as far as I am concerned is where it all starts.

Before I left, I had to wait for my prescriptions to be filled - one thing I had coming is called a Therabite. This contraption is to help you excerise your jaw opening to help Trisumus (lock Jaw). Here is a picture:

Therabite to help with Trismus

You put the white part into your mouth and then squeeze, this forces the mouth open. I will enjoy using this device! Hmmmm.

Before I left, this was funny - a lady came into my room "Oh hello, I hear you are leaving today, wondered if I could ask you a few questions about your stay?" she said. "Of course" I replied.

She asked "Can I ask you if you were comfortable in your room?"

"Oh yes, fantastic thanks, no complaints there" I squeezed out of my mouth.

"and what about the food?"

"The food" I said... "yes, the food, how was that?" she said

"Oh, can't fault the food here." I replied smiling

I looked at my Dad, who was in tears...

"Nope, definitely can't complain about the food!" I said.

The lady looks at my Dad wondering I am sure if he is a nutter, then she looks around the room and notices (right in front of her) that there are nutritional drinks ready for me to take home, the penny drops... "You haven't been able to eat whilst you have been here have you?" - she didn't finish the rest of the survey for some reason.

Anyway, I leave the hospital.

I have a 7 year old son (just turned 8) who was at home off school with a cold, my kids weren’t told exactly what was wrong with me, as Cancer is a horrible word, even for an adult and we agreed that perhaps they wouldn’t see me in hospital just in case I looked horrible – so when I pulled up at home, I got out of the car and immediately broke down – I was worried that perhaps he would think of me differently, I would look horrible to him or some other imagined thing.

He was great - didn't care, he could see that I was generally ok, moving, talking and that I had come home - he continued to watch TV.

I spent a lot of time with him and my daughter explaining that I would be wearing false teeth and that I might look a bit strange for a bit when I get home - I think this helped. If you have kids, remember they can actual handle a lot more information than you think.

I was glad to be home.

Day 4 - nutrition education or so I thought

In my hospital bed, not eating obviously and I get a visit from a nutritionist. She seems really nice and tells me that she is here to assess my needs and guide me on what I can and can't eat etc.

Then she blows my mind completely - don't think I will ever forget this. Let me set the scene again for you. I have just had major surgery, part of my jaw that has been eaten away by cancer is currently in a bucket somewhere waiting to be tested for clear margins, I'm not looking great, sounding even worse and very tired. I can't feel or control most of the left side of my face, my nose is running every few seconds and I probably smell...

After about a minute of introductory speech from her, she says:

"Were you a smoker then?"

WHAT? Oh my god! Firstly, let me say that my cancer has nothing to do with smoking or drinking, it is just one of those unfortunate things that can happen to anyone (that's from my Consultant, not me). Now, let's say I was a smoker and just had this done - would you honestly look me in the eye and basically say, "well, there you go, cancer, jaw removal - you did smoke!" - NO of course you wouldn't, well you certainly wouldn't if you had any empathy towards another human being!

Firstly, it ain't none of your business, you are a nutritionalist, not a doctor - secondly have some compassion - if I had done this to myself, I think I would realise it without being reminded?

With hindsight I should of thrown her out of my room, but at the time I was shocked not only from her but also that I had just had major surgery - so I let her prattle on for about 20 minutes. Frankly what she told me I could of worked out anyway, yeah I know I won't be chewing on steak love, yes I realise that my food intake will be liquid for sometime... sheesh!

Day three

Rough as you like... Still can do the "Wink and the Gun!"

Rough as you like... Still can do the "Wink and the Gun!"

Feeling a little more normal in my head, not fuzzy anymore – VERY clear about things – feeling a little depressed actually. It’s quite difficult to feel depressed properly when you have to be chipper for family, maybe that’s a good thing, stops you getting really down.

I guess family will either annoy you, or will be a comfort you long for. 90% of the time I longed for it – when I got very tired, I wanted to be on my own – nothing bad about feeling like that and I certainly didn’t feel bad – all normal I guess.

Talking about being tired – this was something that really got me. I find it difficult to sit down and do nothing anyway, unless I am really into it (i.e. a book or tv programme) I get very restless – so I would move around a lot, get off the bed, shift my position and that made something like going to the toilet really tiring, it would take it out of me and at 37 I still feel quite young but I really felt tired, to a point whereby I just had to lie down. 

Bear that in mind, I think I was pushing a bit too hard at times – just give in a little to it, you’re not actually giving in, you are actually helping yourself to rest and heal. Hindsight and all that…

Today was the first time I looked in the mirror. It could have been worse with a scar and I can’t help you with that – I looked at myself and my left side of my face was puffy, my left side of my lip was slanting to the ground as if I had been struck by a stroke, my nose was bloody in my left nostril and I generally looked pretty rough. I didn’t cry or anything – it wasn’t that bad for me. Been used to looking back at ugly for many years anyway! 

Oooh check this out...

Oooh check this out...

I did sound awful though – I spoke quite badly – but this was due to the healing plate in my mouth and the numbness of my left cheek and lip.  I can’t ready you for how the healing plate will feel, it is something that you will deal with yourself – but if you deal with it badly, let me say now, it becomes INCREDIBLY normal, I think I can promise this one thing, it will be ok! Just remember that, it won’t come quickly, it will take a few weeks – but it will be ok! And each day that passes, you are one step closer to feeling normal and one step further from feeling awkward and uncomfortable.

 Anyway, it felt like I had taken the sole out of my shoe, used the heal portion of it (the thick end) and jammed it up into my mouth. If you can imagine that, then you will know that your tongue has much less room to move and as such things don’t sound right and by goodness it certainly didn’t feel right.

Swallowing was also tricky, not a problem, not scary just a little tricky. I sort of had to work up to swallowing, then swallow… hard to describe – again, nothing scary.

Taking sips of water was difficult – but manageable – eating, well you won’t feel like it anyway, but if you did, I reckon it might be too difficult.

Also at this point I had trismus (lock jaw) – my mouth would open to perhaps 1 – 1.5cm from bottom of top teeth to top of bottom teeth. I didn’t really pay this much attention as I wasn’t in need of getting anything into my mouth – so if this is the case for you, ignore it and deal with that in a few days or a week from now.

Day one – 3 to 10 hours later (who knows)

I became a little more aware, awake and very conscious of everything around me and what had happened. My surgeon came round and I asked if they were satisfied that they got the cancer out, to which he said yes but obviously it needs to go to pathology to check the margins – so at this point the major part was over, there were no complications and the objective, from what can be seen by the consultants, was indeed done and dusted… time to recover now.

I found it hard to sleep, or even cat nap at this point, I felt groggy, like you feel when you have had a really late night and then had to get up early, that first half an hour – sort of feel like that.

I found myself dribbling from my left side of my mouth, this was the numbness I guess – so I was constantly wiping with tissues – this can get a little sore so consider Vaseline or other products to help relieve that. But more annoying was my runny nose – this just kept on running – very watery. Let me say now, this does stop, but in the first few days/weeks it is a complete PAIN. Of course it also makes your nose sore from wiping all the time.

Remember that morphine friend I told you about, well, I didn’t need him, but hey what the heck – let’s press anyway… now I can’t honestly say if I ever felt the effects of morphine, perhaps that is the effect of morphine – either way, I don’t remember anything happening…

2 days later I awoke – HAHA only kidding…

Day one – when I woke up

I woke up (apparently) long before I remember, weird? Totally! Even more weird to know that I actually had conversations with the surgeons and theatre staff – of, let’s say a somewhat embarrassing nature! Something like “I love you, no really I love you… “ – oh dear.

But I did, I woke up and all was ok. I knew before I went in that I would have a feeding tube in my nose as using my mouth would be at that time pretty much impossible for eating and drinking – so although this felt a little weird, I was ok with it – made my throat a little sore, but only very mild.

I noticed I had a number of tubes going into my left hand – all of which are normal, in fact only one actual tube, which was giving me fluid and two other plugs that they can use to give you other meds should you need any.

The next thing I did was ask the nurse if my scar looked ok – I was told before my surgery that I would have my top lip cut up underneath my nose, around the side and up to the corner of my eye, obviously so they could peel me open and get in! Turns out, I have a big mouth, so this wasn’t required. They didn’t need to cut my face.

I obviously can’t answer how this would feel and I am glad that I didn’t have it done – so ask your surgeon if they will try and expand your mouth first without cutting your lip, if they can’t get in through any other way, then try to accept it, easily said than done I know – but try and picture it before surgery. I did find a few images of people who had this kind of scar and it doesn’t look too bad.

(I just want to say, that as a Man it is much easier to deal with scars, after all we look like we have been in a few scrapes with scars, but for Ladies I can’t imagine how it would make you feel – if any ladies are reading this and have had it done, please send me some words about how you coped, I would be more than happy to include them here for others to read!).

Next thing I noticed was that the whole of my left cheek, left side of my nose (and filtrum) along with the left side of my lip were totally numb. I’m talking about properly numb – the kind of numb whereby you could of put a needle through your cheek and not feel it. I put this down to being like when you come back from having dental work, the anaesthetic they use, you know you have a cheek but it doesn’t feel right, sort of almost dead – weird. I assumed this would come back after a few hours – it didn’t.

Before the surgery, my consultant showed me the  temporary healing plate that he was going to be put in to cover the hole left from surgery – so I knew this was there when I woke, but I don’t think I explored it with my tongue for a day or so, I was a little scared.

So at this point I was feeling more of the effects of the anaesthetic than anything else. Not too bad really, certainly no pain.

I was also introduced to my morphine buddy by the nurse – I press the button and he comes running through fields of sunflowers, skipping and singing… whatever… I didn’t  need that friend right now, no pain... all good.

D-Day - or M-Day...

Trying to be the clown as usual!

Trying to be the clown as usual!

Well, here we go... time to get this rot out of my face. I can honestly say I was very scared, I hope my family didn't pick up on that, was hard enough on them as it was without them worrying about me even more.

What I just couldn't get my head around was the fact that I was going to walk into hospital on that Saturday, with no real symptoms, no lump showing if you looked at my face, yet by the evening I was going to have a part of my face missing forever.

Yes I know that meant I would be cancer free, but to be honest I didn't really feel like I had anything wrong with me... very weird.

Surgery at high noon - deep breath... all be ok (fingers crossed)