Hi Everybody

  • 11 replies
  • 154 subscribers
  • 880 views

Hi

Just a brief hello.

I was diagnosed with stage 4 cancer on the base of my tongue in late August and completed my chemotherapy (6x Cisplatin) and radiotherapy(30x) a week before Christmas 22.

It hasn't been easy and although I feel an awful lot better than I did late December/early January my recovery seems to have stopped.

I'm probably expecting way to much too soon but I'm still PEG fed and although I can eat I have no hunger and everything tastes awful regardless.

I could sleep practically all day if I didn't force myself to do things but tire easily and, despite wearing thermals, several jumpers, and heated blankets feel constantly cold.

I've always been fairly active mainly through my work so all of the above has impacted my mental health to a degree too.

I'm just looking for any advice and to exchange chat, views, opinions with anyone who has been or is still going through this recovery process.

I wish you all well and look forward to hear form anyone

Steve

  • Hi Steve, welcome to the group. You are still early in your recovery really, things do take a while to get back to anywhere near normal. Your body has a lot of healing to do, as for eating it does take a while before you will feel like eating, but if you can try to eat as much as you can, just look at it as fuel for your recovery. If you feel you need to rest, do so it's all part of the healing process. Things do and will get better with time, give yourself the time to heal, there is no real time limit, we all heal at different times. Any questions or worries, just ask away, someone will be happy to help, if they can.

    Regards Ray.

  • Hi Steve. I’ll echo Ray. It’s still really early in your recovery you won’t even have had your post treatment scan yet. 12 weeks often is a turning point. I can tell you I wasn’t interested in food for six months. I just ate to keep myself alive. It was a slog. It was a year before I felt my old self…… ish 

    I remember sleeping in a fleecy track suit with a fleece jumper on top and a hat. I was a month later than you calendar wise and that winter felt bitter  

    Our support teams are fond of telling us we will be better two weeks after RT. Heaven knows where they get that. 

    Patience. Try different foods and if you can swallow it get it down 

    Take it slowly. It gets better. 
    Hugs 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • PS. Listen to your body. If it needs to sleep then let it. Cuddle up on the sofa under a duvet and watch a box set. Get up to take a turn round the garden. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Thanks Dani

    It's reassuring to speak and hear from people who have actually 'been there' and know the score.

    I am a stranger and afraid in a world I never made.

    Steve

  • Yes it’s overwhelming but taken piecemeal it really is doable. The trouble with our cancer as far as mindset goes it that it strikes us “well” people out of the blue. BANG! 
    I was great and on top of the world when I found my tumour. I knew what it was straight away and my heart hit my boots! 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Steve  welcome from me as well my blog below might help shows how I progressed  I had 35 radiotherapy and 2 x10 hour cisplatin chemotherapy the chemo affected my body thermometer for around a year it’s fine now. Radaiatiin fatigue is like nothing else you can’t fight it listen to your  body. I got into a routine where I had a 20 minute Power Nap every day that lasted a good 3 years. But inbetween I still rode my bike and hill walked but friends and family got used to me turning uo and having my nap. As for food if yiu can swallow ok just take the mantra food is fuel forget about enjoyment just eat to live nit live to eat. It will improve but in the meantime start introducing high  calorie stuff. Poached eggs in toast so toast much easier than bread try it lots of butter. Hime made soups fortified with double cream.Dip  biscuits into coffee. I’ve got links for a few cook books if you want them let me know.  plus give  thus a read it really highlights how  we all felt it’s written by a consultant at my cancer centre Leeds. 
    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
     Hooe this helps Hazel 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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Yes it sure did creep up on me unawares - I had a sore throat off and on for several months but me being me did nothing about it but buy sore throat sweets every now and then.

    It wasn't until the family got so fed up with me whining I booked a trip to the doctors.

    6 teeth removed as a preventive measure and a PEG plumbed in, then came the not so fun part - it all seems like years ago but it's barely 6 and a bit months 

    I applaud you all for giving the time to support and aid all of us starting out on this unexpected journey

    Thank You

  • Hi Hazel

    Thank you for spending the time to share your tips and suggestions - much appreciated

    Steve

  • Hi Steve I had similar treatment and it took me around 7 months before I could eat, but when it improves...it does so quickly...you will get there 

    I now live normally and the tiredness fades ...I now play golf and work part time in a physical job..

    Good luck

    Chas