Flops' Friday mini blog

nivrip

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they took tissue sample from areas adjacent to it and looked at them under a microscope and found no visible traces of cancer.

The former MRI scan to my neck and biopsy to an area under my chin showed no signs of cancer.

Great news.


Keep that pecker up. :)
 

crazylegs

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So glad to hear everything went tickety boo Mr Flopp's

Lets hope the surgeon got everything this time, with what you have been through I think the speech therapy will be a breeze..

Take it easy mate :nod:
 

Taffycat

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So how are things going Flopps? I hope you're able to get a decent night's shut-eye and that your tongue is beginning to heal and feel a little less swollen now? :nod:
 
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good to hear all seems ok, tony.:thumb:
sorry not been round much but it will be all over on the 13th!:dance:
 

floppybootstomp

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Sunday evening 22-07-12: For anybody who’s interested, update time: At time of writing listening to The Groundhogs’ ‘Split’ album on vinyl. Not best album ever and not really relevant but I like it.

The worst thing of all right now is swollen/decimated tongue meaning I can’t eat normally. Eating ‘normally’ may be considered something of a misnomer, actually, considering I’ve had very little saliva for the past five years or so and eating in all that time has been problematic.

But right now the left hand side of my tongue is still swollen six days after surgery and I can’t consume food unless it’s in almost liquid form. Put food in mouth, swallow, no chewing is possible. It’s worth mentioning here that, somewhat miraculously following surgery, my sense of taste is still intact. So I still have some idea of what it is I’m swallowing in liquid form.

I gathered some beef mince, onions, garlic, stock, herbs and cooked and pureed it. Done the same with veg stock, broccoli, cauliflower and carrots. Slurped it up, veg actually tasted very good indeed which surprised me. Finished, it filled me up but looked at what was leftover and couldn’t face it again so threw it away. This is horrible.

Eating like this is just a life-sustaining function and a chore, not a pleasure.

Still, let’s get things in perspective – number one: I am still alive, which is a pretty good thing. Things may get better. There are people one helluva lot worse off than me (don’t scoff, this IS relevant); I can still hear, see, smell, walk, feel and appreciate things.

My weight on Wednesday was 66Kg. Today, Sunday, it is 70Kg so all these pureed meals are working, it seems.

When I eat the surgery side of my tongue feels like one big swollen numb lump, like it was actually a foreign body in my mouth – horrible, horrible.

So there’s the tongue side of the crap that’s going down, the other side is my speech impediment. This doesn’t bother me too much, in fact, in a perverse way, in some small way (and I emphasise SMALL) I am quite enjoying this.

Why am I enjoying this? Watching people’s reaction when I talk/try and talk, it’s like being a totally different person to other people after being on this planet for 61 years.

That was written yesterday, now continuing the day after (Monday 23-07-12) @ 21:15.

Rode my bike to the plumbers today, bought a cartridge for kitchen mixer tap, fitted it, no more leaks. Shouldda done that months ago. On way back met Rachel and Peter who then realised what had happened to me. Rachel hugged me, Peter shook my hand and both wished me well.

Around 19:00 rode bike to Cutty Sark pub, nobody there I know except Nadia and the Gay guy whose name I always forget so I went to Pelton Arms and met Roy, Jason & Kate. Not being able to express myself the way I used to be able to meant the banter between Roy and I was not the same, but it wasn’t too bad. After a couple of pints I tried talking more often and Roy understood most of it. Cycled home, sun setting over Greenwich, I love this place, think I’m lucky to live here, except for the bloody Olympics of course.

Home now, belly rumbling, don’t really fancy anything that I can consume but I suppose I should try and get something down me. My tongue sometimes seems to be alive, tingling, pins & needles, sharp jabs of mild pain, quite odd.

My sister messaged me on Facebook and warned me against alcohol as this can cause oral cancer. My first reaction was to say to her ‘don’t lecture me’ but on reflection I think she may have a point.

I drink mostly beer, mostly Guinness, and very rarely drink spirits, having the occasional neat brandy about once a month and sometimes a Jack Daniels & Coke, but really not much, I have an almost full bottle of Jack Daniels that’s been here for about 6 months. That’s it, as far as spirits are concerned. But I do like red wine and let’s consider that ever since my original cancer cure that finished in December 2006 I have finished the day with a glass or two of red wine.

Most red wine, especially the Merlot types I favour, are full bodied, high in tannin and tend to leave a residue on the inside of the drinker’s mouth. This residue will contain some alcohol. With most people this is probably not a problem, their saliva will wash the residue away but with me since my radiotherapy in 2006 my mouth has only been able to produce limited saliva.

Therefore a fair amount of red wine is left in my mouth for some considerable time after drinking often giving me a black tongue. As I rarely cleaned my teeth or rinsed my mouth before retiring this meant that over a five year period I always slept overnight with a coating of red wine residue covering my oral area, including my tongue, obviously.

I now wonder whether this could have been the catalyst for the onset of the cancer I recently suffered. My consultant likened the onset of my original cancer as an allergic reaction against the streams of carcinogenic smoke that passed through my mouth and throat areas, could not the red wine residue have also caused an ‘allergic reaction’?

I should point out that I haven’t smoked for over six years now.

Or could this second bout with cancer be just bad luck? My GP told me of a female patient of his, about the same age as me, who went through a similar type of cancer as I originally did, only for the cancer to return five years later in her tongue. As a result her complete tongue was amputated. She neither smoked nor drank alcohol so who knows?

Perhaps having smoked for a total of 33 years (I managed to give up 3 times for 2, 2 and 4 years respectively) the risk of cancer is accumulative, I don’t know, I just don’t know.

My appointment with ENT at Guys is now confirmed for 15:15 on Thursday, the text I received today told me I should allow times for tests. These appointments always cause me stress, I always think they’re going to tell me some really really bad news. They may have the biopsy results from the samples taken during my op, but likely not.

If and when I do get those biopsy results and they show no cancer I will allow myself a smile and lean towards a little optimism. But even then, assuming I manage to speak fairly normally again and assuming I may one day be able to eat fairly normally again I wonder – will the cancer return? Out of the blue?

That has always been a worry of course, ever since I heard my diagnosis on March 15th 2006, but having experienced a ‘cancer comeback’ it’s now more of a worry.

As of now I’ve quit red wine. If and when my tongue settles down and I’m able to clean it with a soft toothbrush I may drink it again in the future. If I do, then thorough mouth clean and teeth clean before going to sleep. The red wine may not have been the cause of this latest cancer but it sure wouldn’t hurt to clean mouth before retiring anyway.

Funny thing is, for the past six years I have conscientiously cleaned teeth and used mouthwashes three times a day. But perhaps not at the time of day that mattered eh?

One last thing, I have read that having cancer makes you tired. Over the last few months I have found myself nodding off at all times of the day, often napping for 20 or 30 minutes or so several times a day, often felt sleepy. Was also often sleeping 9 or 10 hours overnight where my usual sleeptime prior to this was 6 or 7 hours.

Since the op on my tongue I’m now back to my usual sleep pattern, 6 or 7 hours a night, and not feeling at all sleepy during the day. I wonder if this is related or relevant?
 

Becky

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I really hope your appointment on Thursday gives you some positive news, we'll all be keeping our fingers crossed for you. It sounds like you are doing well despite everything, but I agree that red wine might be worth avoiding :(

Here's a recipe for my favourite ever soup - roasted butternut squash with chilli and ginger. If you're not keen on chilli/ginger then fear not - it just adds a delicious warmth. The recipe is from Lorraine Pascale:

http://www.bbc.co.uk/food/programmes/b015fprp

1 medium butternut squash (about 800g), unpeeled, cut in half from top to bottom
1 clove of garlic, unpeeled and squashed
2 tbsp olive oil
Salt and pepper
50g butter
1 large onion, peeled and finely chopped
1 x 2cm piece of fresh ginger, peeled and grated
Pinch of dried chilli flakes or 1-2 fresh chillis seeded and finely chopped
900ml chicken or vegetable stock
Squeeze of lime juice

Serves 4

  1. Preheat oven to 220 deg C. Put butternut squash halves on a baking tray with the garlic. Slash the squash with a knife and drizzle with 1 tbsp olive oil and season with salt and pepper. Roast for 30-35 mins until soft.
  2. While the squash is roasting heat the remaining 1 tbsp olive oil and the butter in a pan over a low heat, add onion and cook until soft (about 20 mins).
  3. When the squash is done, scoop out the flesh and add to the pan. Squeeze out the garlic from the skin and add to the pan.. Add the ginger, chilli and stock and bring to the boil.
  4. Blend the soup until smooth (might have to be done in batches). Once it has all been done, return to the pan and reheat. Add a squeeze of lime juice.
The recipe also calls for it to be served with a splash of coconut milk drizzled on the top and a sprinkle of coriander leaves, but I never bother. I also use frozen garlic, ginger and chilli as it is much easier!

It sounds more complicated than it is! Hope you like it :)
 

floppybootstomp

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Thanks for that Becky :) You know what? I don't think I've ever eaten or tasted a butternut squash in my life. Odd eh? Nor oysters but I digress.

I'm off to sainsburys later, I shall gather the ingredients and give it a try.

I've tried lots of foodstuffs now and I think the way ahead for the time being is with soups. Yesterday had one of those M & S Chicken/Mushroom/Rice soups and added a little stock and 2 small slices of Hovis to it in the blender. It was almost palatable ;) But I did manage to consume it all.

Today is the first day I haven’t woken up to find a big patch of dribble on my sheet and pillowcase. The first couple of days after coming home the dribble contained blood as well but not anymore. So, washing machine stays silent today.

Yesterday was the first day I didn’t take any paracetamol.
 

V_R

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I shall be thinking of you on Thursday Tony. :thumb:

That soup sounds nice, i'd probably leave out the ginger myself, as i dont like it, but i wouldn't mind trying it.

Some of the fresh soups at Asda, Morrisons etc are very nice, and most are creamed. Maybe worth a look? :)

Oysters are horrid horrid things, i tried them once and never ever again. You really are not missing anything!
 

floppybootstomp

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Well, just had a text message reminding me of Thursday's hospital appointment and it tells me to allow time for tests at the appointment. Then the appointment letter arrived today with a paragraph that tells me I may have to undergo a pre-operative medical at the appointment and to bring a list of all current medication.

The last and only time I've received that instruction in an appointment letter was when the hospital had diagnosed cancer and knew I would have to undergo surgery. So I'm crapping myself, 50 hours to go to appointment,

Of course, the hospital may have revised it's standard letter and that clause is included in all post operative appointment letters and the surgeon said on the 16th July he didn't expect biopsy results for 'about two weeks' so maybe biopsy results aren't completed yet.

But I may be clutching at straws. Whatever the case my mind is in a turmoil atm and I feel like crap.
 

cirianz

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It might just be a standard practice now. I've noticed over the last year each time I've had to go into hospital after a seizure injury the ambulance staff have insisted that I take in samples of all medications I'm on (once I was completely out of it and they just asked Morgan where I kept my meds & emptied the entire contents of the draw [which had a lot more than my meds in it] into a bag & took it along). This was not the practice a couple of years ago, they would just ask me once I was in there if it turned out that I had to stay overnight, so I'm guessing it's a policy change maybe they've instituted something similar over there.
 

floppybootstomp

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Thanks ciri, I've just noted the letter was dated the 19th, which would be three days after surgery so if the letter was actually compiled on the 19th it's almost certain the biopsy results wouldn't have been ready. The 16th was a Thursday and if the letter was posted the day after on a Friday by second class post then arriving here today (Tuesday 24th) would be about right.

I'm a born worrier but this really is a mind ****

I really wish hospitals would phone people immediately their results are known but they don't. I suppose they have their reasons but it don't do the old grey matter any good at all.

Just finished a nice big tub of lentil soup and half a litre of ice cream :)
 

Taffycat

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Hospitals seem to use a standard format for many of their letters - I would guess it saves them time, money, or whatever to cover all bases when they send out any communications. It might serve a purpose for them, but does nothing for the worry-levels of patients. I don't suppose they think about that.

Mmm... roasted butternut soup is one of our favorites too, the recipe I use, was adapted from a roasted pumpkin recipe, so we've not tried it with added ginger and chili. I can imagine how tasty it would be though, and shall certainly be adding some next time I make it, thanks from us also Becky. :)

That's one thing about soups - they can be concocted from an almost endless choice of ingredients so there can be plenty of variety when it comes to flavour. But of course, when you absolutely HAVE to eat them, the prospect can feel a bit daunting. I sympathise with that, because I've just spent a couple of weeks on a soupy/liquidised/soft-and-squishy diet, thanks to a recurring jaw problem. Have you tried liquidised curry and rice...? lol It didn't look too inspiring, (cow-pat on a plate came to mind...:blush:) but it actually tasted rather good.

Congrats on the dry pillow today - sounds like you're progressing in the right direction. So sorry that text message has left you feeling so low and crappy though. Hopefully your appointment on Thursday will bring some much-needed relief and good news. As always, our thoughts are with you and we wish you well. :)
 
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Abarbarian

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floppybootstomp;14159779. said:
Then the appointment letter arrived today with a paragraph that tells me I may have to undergo a pre-operative medical at the appointment and to bring a list of all current medication.

Same thing happened to me. Got to the hospital and the pre -operative medical consisted of a blood pressure test and a big blue arrow penned on me leg pointing to me knee.

Chin up mate. Sounds like your tongue is healing well.

One way of getting around the late night alcohol drink would be to mainline vodka with a syringe. Don't know how it would work for red wine though. Least you don't get that nasty residue in your mouth.
breakfast.gif
 

floppybootstomp

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Have just returned home from appointment at ENT (Ear Nose & Throat). That appointment was cancelled. They did send me a letter apparently but it obviously didn’t reach me in time to stop my journey. Good job I have this freedom pass thingie, didn’t cost me to travel.

The appointment has been rescheduled for 10:20 tomorrow at Outpatients.

This may be a good thing, not sure, as ENT is where you go when you have a problem or they are keeping a really close eye on you whereas the outpatients department is where you go for a routine checkup. As far as I can work out anyway.

Also, my appointment letter for tomorrow didn’t have that clause about being ready for a pre-operative medical which bodes well.

So, rather than get annoyed about having to make a wasted journey I came away feeling a little better. Then I went to see the speech therapist and asked her first of all about the clause in the ENT appointment letter, how it worried me and she told me it’s just a standard clause but lots of people have had the same reaction as myself and on reading it feared the worst.

So, more relief. When I left hospital 8 days ago the speech therapist gave me a list of tongue exercises, designed to make my tongue stronger and therefore speech easier. I told her that until I was certain the remainder of my tongue had a future I hadn’t been bothering to do the exercises. She gave me a mild rollicking and explained that as my tongue heals, some tissue will harden and some will shrink which would make speech more difficult.

She added that to make future speech as likely and coherent as possible I should have been doing the exercises from day one. So I am now, me bad.

So, now waiting on tomorrow morning.

Today, for some odd reason, I woke up feeling optimistic. Then I won a tenner on a lottery ticket – which I rarely buy – and then I had a phone call to tell me I’d got the fairly big job I surveyed and priced up on the 9th. So all in all I’d say today was a good day, let’s hope this mini run of luck continues.
 

Taffycat

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Awww... that's torture. If they could text you with an appointment date, one would have thought they'd do the same with a cancellation. But at least your mind was set a wee bit more at rest re the pre-operative clause thingy.

Congrats on the Lottery win, plus the job, great news. Hopefully, the third thing will be good news tomorrow, so keeping everything crossed for you here. Hope all will go exceedingly well. :nod: :D
 
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hope all goes ok tomorrow.
sorry not been round much busy with some big event in london?:blush:
 

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