I discovered I had cancer in early October after a biopsy.  I'd been referred to a maxillo-facial consultant a couple of weeks before that,  after I asked a dentist to double check the sore on the side of my tongue. She said it should be looked at by a specialist. I'd had a biopsy 10 years before in the same area of my tongue and that was negative.  This time it quickly became apparent that it was cancer, but relatively small to still be at Stage One.  I've decided to share my experience as I've always been a scaredy cat, absolute hate going to the doctor, let alone a hospital , and general am very picky at taking any medicine I've been prescribed. I'm the sort of person who looks everything up re side effects etc and try and resolve any symptoms by other methods.  Nothing wacky. Just a good diet, a few key vitamins, a bit of exercise, change of habits, ordinary things.  Quite often that's been successful. But this time I knew I've got to behave and there was no escaping hospital and scans etc. The wait between being told I had cancer and going for CT and MRI scans to see if it had spread (luckily it had not) seemed like a lifetime but was less than two weeks. And same for the wait until the operation itself. 

It's now just 18 days since I had the op.  I chose to have a local rather than general anaesthetic (!!!)  and I'm so very pleased I did that. It was scary at the start but I knew I wouldn't feel any pain, just a few of the movements being made in my mouth eg pulling the tongue aside but that was all.  I didn't feel any pain whatsoever and I surprised myself by coping very well. The surgeon kept me informed throughout about what he was doing, a nurse held my hand for the duration, and I enjoyed listening to some of the conversations the team had during the operation. I know this sounds nuts, but I actually enjoyed the atmosphere and the experience, not least because I was so incredibly surprised that I coped well with it.  I just focussed on trying not to move, not to cry out, and to listen to what was going on around me. After nights of not sleeping and worrying, panicking, wondering how I could escape from the operation, imagining the worst, dreading the outcome, worrying how on earth I would cope with the immediate aftermath of the operation given I knew I'd have to drink through a straw and wouldn't be able to speak properly.... I was truly terrified 24 hours a day for the 2 week period before the operation.  So it was a complete joy when the op was over (it took about 40 minutes from start to finish) when I realised I did cope and I coped well.  I didn't have any pain. The nurses and people around me were telling me I'd 'done well' (and for a change I knew I had!). And before I knew it, my short stint in the recovery room - maybe 30 mins at most) was over and I was able to go home. 

I guess all of that made me cope well with the aftermath too.  But again that was partly because it was nowhere near as bad as I thought it would be.  I was sent home with very heavy duty painkillers. I didn't need them at all.  For the first 3 days I needed two lots of two paracetamol per day, and half a paracetamol before going to bed.  After that I didn't need any more painkillers. The pain at that time was mainly around the jaw and shooting up to the ear.  The pain in my ear was probably the worst.  But it only lasted a few days and subsided gradually after that.  In the first two weeks post op I should have been drinking the protein drinks I was sent home with.  I tried one and thought 'noooooooooo'! I decided to make my own meals, mainly soup (but being careful that it was only luke warm when eating lest I burnt my mouth!), mashed or baked potatoes and baked beans and Yeo Valley Frozen Kefir.  After about a week I realised if I put a small piece of food in the back of my mouth on the 'good' side, I could swallow it, but I had to do this very slowly and very carefully to avoid choking or swallowing the 'wrong' way.  (So if you can be good and stick to the protein drinks you're supplied with, I'd say that's a much better and safer way to get decent nutrients into you and avoid any mishaps!). During the two weeks post op, I had quite some difficulty speaking.  It was uncomfortable to say anything and sounded weird too. But the main thing is that from the start I held on to the reality that all these problems and worries would gradually subside and of course they did.  Two weeks after the op I was eating fairly normally and speaking a lot better but it literaly got better every day.  I've always had a lisp so it didn't bother me that the lisp had got worse.  I'm confident it will improve over time and if it doesn't I'll cope with that too.  

I've now had the results of the extra tissue removed from around the tumour which was tested to see if that was cancerous. It wasn't thankfully,  so effectively I no longer have cancer.  I will have to return to the hospital once a month for some months and will then be seen regularly for the next five years.  

One of the most difficult things for me was on the day of my appointment to get the results of the biopsy which would show if it was cancerous or not.  I'm not sure if the following is a 'thing' that is always done in hospitals but I'd love to know. And that was when I was called into the office to be told whether I had cancer, I walked into the room to see one consultant seated by the couch which was obviously for me, but around him were about 7 people, all standing up and looking at me as I went in.  (This group consisted of another doctor I think, a speech therapist, a dietician, and others) It was an absolute shock to see this huge tableau of people.  And of course it made it very clear that the answer to 'do I have cancer?' would be yes.  I sat down, frankly in a daze.  I know that if it had just been the consultant, and maybe one nurse, I would have been fine.  But this really shocked me to the point that I did not even glance at the sheet of paper I took with me with all my questions on.  Not only did I not ask any questions apart from one I think, but I didn't take in any of what the surgeon said. In hindsight, however, maybe the welcome party was a good thing.  It's well known that you should take someone into the meet up where you're to find out if you have cancer or not, so they can remember things for you. So I realise most people would maybe find asking questions and hearing what was said difficult anyway.  It certainly drummed into me that this was serious, I did have cancer and I'd have to deal with it.  One good thing about seeing all those faces was that in a nanosecond I decided that under no circumstances would I cry in front of all these strangers!  And I was pleased with myself that I didn't cry. Of course there's nothing wrong with crying, but personally, I didn't want to do that.  Given I am a bit of a cry baby, I was inordinately pleased that I didn't.  And maybe the fact I did manage to control it also helped me cope with everything that followed, including having the operation with the local anaesthetic. 

Now I've been declared cancer-free, and am almost back to eating and speaking normally, I realise that it's been a strangely positive experience for me.  I genuinely didn't think I would cope or even wanted to cope with all that was ahead of me once I'd found out it was cancer.  And yet, here I am.  I did cope.  I got used to going to the hospital.  I wasn't in the pain I thought I'd be.  And I had a lot of support from family and friends who frequently whatsapped me telling me how brave I was. I didn't feel brave at all, but that continuous refrain seemed to help me feel I might be okay, I might cope and that sparked a determination to cope.  What's more, whilst I know I'm incredibly lucky it hadn't spread, I now feel as certain as I can be, that if it comes back, even if it needs more surgery or any other treatments, I just know I can and will cope.  It's helped me a lot to think in terms of 'what I can do' rather than what I might not be able to do if it comes back.  I sort of put a ring round the things I would probably still be able to do if the worse happened.  Listening to music for example, Even if it was only that, I tell myself it would be okay.  Easy to say I know.  And maybe I'm wrong. But I'll do my best to cope with whatever happens next.  I've also found humour, maybe a bit of 'black humour'  very useful , especially around family and friends who sympathise openly. Even in the operating room there was a sense of people being upbeat and having a bit of a laugh once or twice and I felt part of that and found that, in a way, I quite enjoyed that day  Bonkers as that may sound!

I've no idea if any of this is helpful to others.  I hope so.  I'm counting my blessings and thinking about everyone else out there with this scary cancer or any other cancer. Get as much support around you as you can.  And if they tell you you're brave, believe them. And maybe decide that you will cope with whatever is thrown at you, however bad it is.  And focus on what you can still do or will be able to do, rather than on what you can't do or won't be able to do.  Thinking of you all.  And thanking all those people who were in the operating room and then the recovery room afterwards too xx