Sublingual Salivary Gland Cancer- my journey

  • 6 years now.......

    It’s been 6 years since my treatment began now. I’ve just had a check up and my consultant was happy with everything. 

    I still have 6 monthly checkups because of the patch of osteoradionecrosis on my lower left jaw. Both my dentist and consultant are happy with how it looks at the moment, but it is quite close to the first tooth on that side, which has a wobble, and the gum has receded. I’m worried about loosing…

    • 23 Aug 2020
  • 3 Years since radiotherapy finished- update on my journey

    It’s been about 3 years since my RT ended now. last post I mentioned a little patch of osteoradionecrosis on the inside of my jaw. 

    A quick google gives the following definition-.....

    Osteoradionecrosis is bone death due to radiation. The bone dies because radiation damages its blood vessels.

    Osteoradionecrosis is a rare side effect that develops some time after radiation therapy has ended. It usually occurs…

    • 24 Oct 2017
  • 2 Years since thre end of Radiotherapy

    Just thought it was worth popping back here with a quick update.

    So I'm now onto 3 monthly checkups. I've got this small patch of osteoradionecrosis by where the end tooth is. It's on the inside of my jaw. Fortunately the tongue on the that of my mouth is partly arm,  so it's can't feel the patch. That would be really annoying! 

    All my scars have healed up pretty well. I'm even wearing…

    • 16 Dec 2016
  • 1 year 7 months on

    Well thought it was worth doing a quick update on this blog, incase anyone else has a similar journey to me. 

    I'm now 19 months post surgery and I'm supposed to be on 2 monthly check ups at the moment but a few Hic cups since August have meant it's gone back to every month. 

    Had a funny feeling in my throat in July/ August last year.  Have had a few things looked at to try and see if there was…

    • 27 Feb 2016
  • Christmas update

    Well it's been about 14  months since this journey began, and 7 months since diagnosis and the big operation, 2014 has been quite a year. 

    I'm still signed up for monthly check ups with the radio therapy team, although I think they will sign me back over to my consultant after this months visit. I started back with the consultant in November and am on monthly check ups there too .

    im seeing a lymphoedema nurse…

    • 30 Dec 2014
  • Update about 7 weeks post radio now

    I've stopped counting, so that must mean it's lots better. Had a dentist appointment on Tuesday. He was the one who originally referred me. He's checked my teeth and prescribed me some mouth was and extra floride toothpaste and I'm back in 2 weeks where he is going to do a gentle clean. I'm working a lot more now, almost 4 days a week. I do notice how much I'm suffering with the dry mouth when I'm at work. Disaster…
    • 21 Nov 2014
  • 2 lots of appointments in one week

    I am due my second follow up

    appointment with the RT team this week. Hopefully they will be pleased with the big improvement in my eating and subsequently the improved energy levels. I won't be running and marathons yet but I do feel more up to coping with more day to day tasks and I'm going into work 3 days this week. Not for the whole day, but we'll see how Friday find me  

    I got in touch with my macmillian…

    • 10 Nov 2014
  • Recovery 5 weeks on and found a use for that mask (pic attached)

    I feel like I've really begun to turn the corner now, and the biggest factor in this is the improvement in my eating.  The steroids have definitely improved my appetite, and I seem to be hungry all the time! I'm also managing to eat a much wider range of foods. I can chew on the side that still has teeth, and my swallowing has improved. Stuff does sometimes get a little wedged, but a discrete coughing it back up and…

    • 3 Nov 2014
  • 4th Week of recovery

    The steroids have definitely helped with my appetite, and the more I've been trying to eat the better the swallow reflex has become.

    My preferred meal at the moment is pasta soup and bread (all in the same bowl) with cheese on the top. I think I do need to try and include a few more vegetables, but I am definitely eating a lot more.

    The side that received the main RT still has a bit of soreness, and a few new ulcers…

    • 27 Oct 2014
  • 4 weeks into recovery

    I think it's 4 weeks tomorrow that I finished my 6 week course of RT for salivary gland cancer. This week it feels like things are picking up. Firstly I have started to eat real food. When I say real, I'm not sure it would be to everyone's tastes, but I'm moving beyond ensures, and pureed meals.

    I have some fork mash able meals from Wiltshire farm foods that I've been eating. I've also had soup with bread…

    • 23 Oct 2014
  • Hairy Wrists!

    Whilst my wrist flap scars are healing quite well I have noticed that the skin from my stomach is obviously far hairier that my wrist!!! But at least my wrist wasn't hairy as a friend I made in hospital had the reverse problem and the flap in his mouth is sprouting an awful lot of arm hair. I think I'd much rather the slightly hairy wrist!
    • 19 Oct 2014
  • Check up with the consultant.

    Had my check up with the consultant and it was a weird to be back at the RBH. It brought it home to me there is nothing else to conquer now and it's just me allowing my body to recover.

    Popped in to work before hand which I think threw me menally because everyone tells you you look great even though you are feeling dreadful inside. Then you feel like you ought to be feeling better than you are then you're down on…

    • 17 Oct 2014
  • Fatigue and Wiltshire a Farm Foods

    One thing that has come as quite a surprise is how much worse the fatigue has become over the last 4 or 5 days. I found that even taking a shower yesterday I felt exhausted washing my hair and had to stop for a break. I'm also sleeping for much longer over night so I'm not getting going till quite late morning.

    I have been managing a Wiltshire Farm Foods meal each day but I've found now that the soft option…

    • 15 Oct 2014
  • Old scars- neck, wrist and stomach

    Just thought I'd do an update on the original operation scars as you kind of forget about them during all that comes with RT. I have been applied a gel like cream called dermatix since the scars lost the scabs. This is pretty expensive gel, but came on prescription. There is a website on how it is supposed to work. I think it's been pretty good stuff. I didn't apply it to my neck during RT but have continued on the…
    • 15 Oct 2014
  • Two weeks into recovery

    It's two weeks since treatment stopped and I'm feeling now that I'm seeing the small steps to recovery now. The phlegm has definately reduced but I do wake up needing to have a good cough and swill my mouth out. Some days I wake up and my tongue has really swollen. Last night I woke at 4am and had a voltarol tablet and it seemed much better when I woke up this morning.

    The Wiltshire farm food meals arrived…

    • 10 Oct 2014
  • Recovery day 11

    The phlegm has definitely reduced a lot. I haven't had to use the spitting glass all night. It's still thickish in my mouth but more saliva like in texture.

    I ordered some puréed and soft meals from Wiltshire farm foods yesterday that arrive on Thursday. I did try some fish pie on Sunday and soup yesterday but it was quite hard work.

    I feel as though I have less energy this week than last week. Maybe…

    • 7 Oct 2014
  • 1 week into Recovery

    So I had my last of 30 sessions of radiotherapy a week ago last Friday. The past week has been a bit of a struggle, the worse thing being the sudden onset of the Phlegm monster. I can't believe how many toilet rolls I've got through. I took people's advice and found that the bi-carb mouth rinse seems to be best at getting the stuff out.

    For a few days eating ( well drinking ensure) was tough because I didn…

    • 5 Oct 2014
  • 1st Day without radiotherapy

    Today is my first day without radiotherapy, it feels such s relief not to be getting ready to trip of to the hospital although I do feel a bit lost without all those people around.

    The main thing that's changed is the increased mucous/ thick saliva that's being produced. There's a lot in my mouth, but I also seem to be coughing up very thick phlegm. I rinsing with salt water and alternating that with capholsol. I have…

    • 29 Sep 2014
  • Radiotherapy day 30 last one

    At last the last day is here. It il has seemed a long old journey but now I hope I can really relax to get the next two weeks sorted as everyone has been telling me to be prepared for it to get worse. I'm now trying too think of something to use the mask for. Any suggestions?
    • 26 Sep 2014
  • Radiotherapy - Day 29

    After having felt pretty similar for the last 3 weeks, after my original early dip, last night saw a decline and a pretty awful night. My tongue has felt much larger during the night and the paracetamols seem to really sting and burn my mouth when I take them. They do seem to be a different brand to the others I had previously but I wouldn't have thought that should make a difference.

    I've been taking more Oramorph…

    • 25 Sep 2014
  • Radiotherapy- 4 to go

    Into the final week. This seemed so far away at the start I can't believe I'm here now.

    Had the consultant meeting yesterday and although if lost a tiny bit more weight she said overall she was very pleased with how I've done on the food/weight front and that it's brilliant that I've got through it without a peg. I'm am being moved onto the more concentrated Ensures today though because I'm really loosing the…

    • 23 Sep 2014
  • Radiotherapy/ starting the final week

    As I lie here awake having had my 2am Oramorph dose I've been thinking through how I've been feeling over the weekend and trying to understand/ deal with things a little better.

    First of all I think I've been a bit in mourning for pre diagnosis me. I watched a video of a holiday with friends and it quite upset me to think ill never be that person again. Partly I suppose physically things will have changed ( and…

    • 22 Sep 2014
  • Radiotherapy- 5 days to go.

    I've not been blogging as much this week because there hasn't really been much to add. Things have stayed pretty much the same. The saliva has become thicker, but not really thick and I've found swills with the salt water and then later the carhopsol seems to give some relief from it.

    Denplan have paid out on the private prescription I had for that so that's fab.

    I'm still doing 5ml of oramorph about…

    • 20 Sep 2014
  • Radiotherapy - day 22.5

    .....and so creeping up in the middle of the night arrives the thick sticky saliva. It wasn't here at bedtime and now it just can't shake it. Salt water, Caphopsol, coughing...... It's here to stay it seems. Most unpleasant.
    • 17 Sep 2014
  • Radiotherapy day 22

    Things are definately hurting more today. Sore patch on my throat that makes swallowing tricky. Warm water seems to be less irritating than cold water.

    My tongue is feeling quite sore again. I have been upping the oramorph ( as I was told) and am now in 4.5ml every 4 hours. Still doesn't seem to send me woozy so that's good.

    Having real problems getting the mouth/ tongue guard in for radiotherapy but everyone…

    • 16 Sep 2014