Hello - I haven't posted for a while so wanted to give an update on recover. 12 weeks ago today I had my final RT treatment! I'm having my RIG removed on Monday!!
I've experienced the common ups and downs of recovery and some days /weeks seemed like I wasn't moving forward, but I just wanted to share that things do improve and much progress has been made!
RIG: I haven't used my RIG tube for 6 weeks, but I relied on it for 4 weeks in total. I've been signed off by speech & language, and my dietician and nutrition teams and oncologist have approved the RIG being removed. I could've done it weeks ago, but I'd already received an appointment at the hospital for a tube "change" so this was just converted to a removal!
EATING: Slowly added foods and while taste is still hit and miss I just forged ahead and ate regardless to keep my weight stable.
Bottom line is, I try everything and persevere as the more flavours you attempt the more it helps taste buds to return. My oncologist said improvements can continue for a couple of years with taste and saliva issues. Just persevere! I carry water everywhere! I might look into acupuncture in future as I know it's helped many people on here...
PAIN: I took morphine for about 5 weeks, now just alternate between paracetamol and ibuprofen. I'll admit, I didn't see me being able to just manage on those during the 'darker' times of recovery - but it does get better!
I'm planning a very slow, phased return to work later this month - just 2 half days per week up to Christmas and will review regularly and add more hours as I'm able to. Fatigue management is crucial. I've been speaking to an occupational therapist through work, who has been excellent in sharing tips around pacing yourself. I also have CBT counselling booked in to discuss how the last 6 months has affected me emotionally. This is all through my company, so I feel very lucky to work for such a forward-thinking employer.
I've bored you enough now but if anyone is starting this journey or in the middle of recovery I think it's good to know that things get better!! I sometimes have 2 steps forward and 1 step back. Take it a day at a time and slow down!
Helen xx
Helen you are never boring. That is such an encouraging post for all the folk just starting out. It’s very easy to feel so sorry for yourself and think that you’ll never get better but we do, some slowly and some fast. We are all different.
Im so pleased to read your very encouraging diet , especially the last item. 
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Hi Dani - It has been a whirlwind - especially the first 5 weeks or so post treatment, where I felt quite frustrated with progress gained then lost (and the first 3 weeks were pretty much a write-off!). I'm still seeing backward steps in some ways, but on the same day I have a step forward on something else. It really does help to count your blessings and take a day at a a time! We've just got back from a fireworks display where I had a hotdog with onions 
And I'm currently sampling a Baileys with lots of ice - it's very good actually, I haven't had one for years!
xxx
Hi Hazel - Yes, spice is not as pleasant as it used to be! I actually didn't like the taste of anything other than coconut/ cream - so I think I'll be a Pasanda or Korma girl from now on! I had a box of chocolates as a present and it lasted me a month; this would've been demolished in 2 nights in my pre-treatment days LOL!! The hardest thing for me is definitely bread - which I used to love (too much, probably). So, now I have a little and don't miss it really. When I did a swallow test a month or so ago the speech & language therapist tried me with a bourbon biscuit (level 7 apparently) and I passed with flying colours. I then told her, I've always despised bourbons and I had to admit that hasn't changed
xxx
Hi Helen. I’m now a custard cream or bourbon lady dipped in coffee or Jaffa cake. Didn’t really like any of them before. Bread try it toasted the grilling alters the texture plenty of butter on. It took me between 18-24 month the enjoy a sandwich still prefer dipped in soup. But I can eat any tyie of bread now as my waist will testify!Its still early days for you 2 steps forward one bsck is the normal. When’s your scan date ?
Hugs Hazel who is on holiday yet again One life live it.A Spanish mountain instead of a Welsh one xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
And I'm currently sampling a Baileys with lots of ice - it's very good actually, I haven't had one for years!
Well done. I love Baileys.
The first Christmas after treatment end I poured myself some in a pretty crystal tumbler with lots of ice It tasted like diesel! I cried over that glass.
I waited a year to try again and it was better. A year after that it was perfect.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
That looks fabulous, Hazel! My parents used to have a house in Los Romanes but sold it a few years back. My brother has a small traditional house in Comares, which is stunning. I've always loved Spain.
Yes, toast is better, loads of salted butter and poached eggs - my safest go-to for a while! I've given up biscuits and chocoale for now but found some desserts I really love now, but didn't like previously (cheesecake , trifle, panacote, crème brulee , even crumble with lots of custard yum!) I've recently discovered Portuguese egg custard (warmed) - I can't believe I've been missing these all my life! Basically I'll eat anything or give it a go, so the eating part is like a new adventure currently, as I'm leaving some favourites behind and discovering new ones
Enjoy glorious Spain x
Basically I'll eat anything
And the fabulous thing is that while our metabolism is in overdrive for a year or so we can do just that 
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Hi Helen thank you so much for your post...this is great to hear. I am 2 weeks into my 6 weeks of treatment and everything seems to taste terrible. This weekend I have started to experience pain when 
swallowing and am not going to lie to say I am really worried about being able to cope with the pain when I know it will only get worse in the weeks to come. It is great to read your account and I will keep this in my mind over the coming weeks. Thank you 
️
