Blimey .....2 weeks since my last post...doom and gloom gone x

3 minute read time.

Blimey that last post was a bit heavy, didnt realise how down I had got. Im better now :)

A lot has gone on over the past two weeks and I wont bore you with the down bits.

We do have laughter in our lives and that is what I am going to share with you now.

Negative followed by a Positive is a good place to start I think.......

For those that dont know, Dave had the floor of his mouth removed and rebuilt, this has left him with few taste buds, limited tongue movement, scar tissue (cut from left to right ear) and obviously a lot of nerve damage. A daily battle that has left him deep in depression and me in despair on many occassions. He doesnt like taking pills...who does...and he wouldnt listen when I said he should take pain killers regular as this would help. Last visit to oncology, his surgeon told him how impotant it is to take the pain relief as obviously his mood would improve greatly if free of the pain.......YEAH he now takes the wonder pill twice a day and has been happier, along with the anti-depressants.

The Negative......he was very quiet on friday, going back into long periods of just starring into space, not talking to me. At first I put it down to the funeral the day before but as the day went on I had to ask him what was troubling him. "Hate being the way I am now"...here we go again, the downhill spirral. To cut a long story short I made him have something to eat and a cup of tea as we were having a later than usual dinner. I noticed he kept prodding his mouth....."whats wrong love"....he went off upstairs to come back shortly with a beaming smile like my old David...

The Positive......."I thought I had found another lump, its been worrying me all day, I wasnt going through another op Shaz, didnt know how to tell you"......."so whats changed Dave"......"I had to look in the mirror to see where the lump was and guess what!!!....it was a bloody grain of rice". ..."well you have always said you would never starve love as there is always something left behind"....

We cried with relief and pissed ourselves laughing, this bloody rollercoaster is never ending. So quickly our mood can change from good to bad then good again.

We went to dinner at no.1 sons yesterday. Our little star Honor kept us entertained throughout the meal with her humming the theme tune of "strictly come dancing" followed by her swan lake impression. Her test results from hospital were favourable, only 1/3 of her heart is working, she has been on new medication but hasn't had long enough to see if it is helping. The Brompton want to see her in 12 months (obviously they are really pleased with her progress) mummy cant wait that long (glass always half empty, not looking at the positive) so they agreed to bring the appointment forward, now 7 months. She has not taken a step back in any way shape or form, but too early to tell if improved much. The measurements are so tiny from one check up to the next as it has always been 4 monthly, hopefully we will see something more positive in 7 months time.

We had a great weekend, our daughter invited us for Christmas dinner, that will be a first in 21 years. Its not that she dont like us ha ha.....we had been married before, now there are too many mumd and dads, we chose to invite the kids to ours or just told them not to worry about us. It made things less stressfull all round.

The dog has broken the dog flap......she sucks her bed like a dummy, she has been on medication which gives her a new lease of life which in turn reverts her to a puppy on many occassions. This other day she decided to drag her bedding into the garden through the dog flap.......hope there is a spare £45 for another one ha ha.

Anonymous
  • FormerMember
    FormerMember

    Good morning Shaz,

    So glad that things are going well for you both again - it certainly is a long-haul journey. But yes, I really can sympathise with Dave as I have had the same procedure and the side-effects are so drastic and life changing. To be honest, I haven't come across many patients who have gone through the floor of mouth surgery / treatment at all ......... so it seems that Dave and I are of the few. Indeed, I too have said all the things like Dave ' I hate the way it's left me, etc ' but as time goes by it becomed a little bit easier to accept the consequences of still being alive !

    Just tell him that things do improve - albeit slowly - my ear to ear neck dissection scar looks a lot better and I have regained some tongue movement ( which helps with eating ) a little more saliva has returned ( although I still use the Biotene products ) and in general I'm feeling a whole lot better. Given time he will be feeling much improved too ( if there's anything he wants to ask me, then send a PM and I'll do my best )

    Obviously there are still the ' down days ' when I can't eat something or my mouth gets sore again - but I have my lovely friends here to cheer me up .......... as you have too, Shaz. So keep your chin up and enjoy being with Dave and the family ( oh, and an invite to your daughter's for Christmas dinner, lovely ! ) Stay positive and take care, all my best wishes to you both.

    Love , Joycee xx

     

     

  • FormerMember
    FormerMember

    Hi honey

    In the face of all you have to deal with, it's no wonder there are 'down' times. The miracle is that there are 'up' times. I don't always have a great deal of time for the human race in general (they're cruel to animals and they make ugly buildings), but sometimes they can achieve miracles, and day-to-day (relatively) normal living after cancer is one example of that.

    Who likes taking pills? I DO!!

    Yay for Honor the ballerina! And yay! for Christmas. I am being so pro-Christmas this year, you wouldn't believe - usually I can take it or leave it - I was only a step and a mass of practicalities away from inviting my brother and sister here and spending it in the bosom of my family. You have a lovely time at your daughter's - that's an order - and make sure someone else does all the work. You and Dave deserve to put your feet up and go to sleep in front of ... whatever's on the telly. (Note to self: better get a Radio Times.)

    Poor dog. How our animals love to add to the chaos of our lives. My ShadowCat decided to pick the week following my mother's death to get a urinary infection and start weeing on things he didn't ought to wee on. Just what we needed!

    And Dave's agreed to counselling? That is such great news.

    I hope there are lots more 'ups' on your roller coaster. Although I suppose if that's the case, the laws of physics demand there should also be downs. Huh. Maybe what we should hope for is a nice, long, steady, even plateau.

    Hilary

    xxx

  • FormerMember
    FormerMember

    Hi Shaz,

    Isn't it great how little piece of rice can have such a positive effect! I laughed when I read that, and I know just how a bit of laughter can make you feel better about things, especially when it is spontaneous.

    Well done to Dave for taking the right steps forward, I really hope the pills and counselling helps and it augurs well for Xmas and the future.

    Loved the picture of your dog!

    Tight Lines

    Tim xxx

  • FormerMember
    FormerMember

    Oh the horrors of when you think you've 'found something' and the relief when it turns out to be nothing....or a grain of rice!

    A couple of sessions with a counsellor earlier in the year helped me, in that I was able to see that I'd got the strength within me to make the changes I needed, and that life is never the same after cancer. I think quite a few of us also have issues with how we look afterwards, and its getting past that and recognising the beauty within. Its hard sometimes when someone stares or passes comment, but its their problem that they are so narrow of mind!

    Can I have some of your dog's medication PLEEEEEEEEASE? Could do with energy of a playful puppy.

    Love to you both

    Have a lovely week xxxxxxxx

  • FormerMember
    FormerMember

    Hi mumsy,

    Sorry, I am a bit worn out after work,so a bit short,  but wanted to say hi..

    Yay to all the positives and here's to there being more of them than the negatives..

    Take care of yourself and make sure you get to sit down and rest sometimes (remember to take that broom out of your backside first though!)

    Huge hugs to you and give fac of a dog a kiss from me

    Little My xxxx