I finished 30 Radiotherapy/2 Chemotherapy treatments at the end of June & find myself some days wondering when I am going to feel better. Some days are better than others & I understand from what I have read & heard that it will take time...a lot of time !
On the plus side I am managing to maintain weight without the aid of a PEG although eating isn’t always easy & usually never enjoyable due to swallowing issues & the need for water (or milk) after each mouthful. I also don’t have any pain which is good although my throat is terribly dry and sticky most if not all of the time. Tiredness is another issue which doesn’t help my sense of well being as 4 or 5 times a night I wake to rinse my mouth & throat which disturbs my sleep. The ensuing tiredness is very debilitating & my ability to do anything is dramatically impaired which results in me feeling low .
I know it’s relatively early days by all accounts but I just wondered if anyone feels or has felt the same way & what lessons have been learnt that will help me moving forward.
Thank You in advance
Hi. I felt exactly the same post treatment. I had bilateral tonsillectomy, PEG, 6 weeks of chemoradiation. 6 x chemo & 30x radio. I used my PEG from week 4 of treatment.
Recovery is a slow, frustrating process. I remember feeling a loss of all hope that I would ever feel ‘normal’ again. I couldn’t imagine eating, drinking, socialising, working …ever again. It was isolating & lonely. I contacted Macmillan & was offered 6 free counselling sessions. They were extremely useful & helped my mindset enormously. My biggest objective was to try to eat enough to put weight on & get my PEG removed. The fatigue is overwhelming - take naps, rest when you can. I found that if I went for a short walk each day it made me feel a bit better. I had several sessions of auricular acupuncture to stimulate saliva production. The mouth dryness at night eased over time, but I used Xylimelts for several months. Sugar free gum helps with dry mouth too.
Keep going!! I am now 17 months post treatment & can honestly say things DO get better. I am not the person I was before treatment, but am navigating my way through my new normality & feel good.
Hi Paul. Recovery is a long plod forward some days, back other days. Be kind to yourself and remember you will get better.
BioXtra make a mouth gel you could try at night and if you do have any saliva try Xylimelts at night. I used two at the beginning, one popped into each cheek, and they kept my mouth moist. A vapouriser in the bedroom can be useful too.
As for food just try soft stuff and don’t be disappointed if something doesn’t work, just abandon it and try again a week later.
You’ll be coming up to your PET/CT soon and that will hopefully give you an all clear to give you that extra boost.
Slowly slowly day by day.
There is an article written by an occupational psychologist involved in cancer care. It’s really worth a read
Base of tongue cancer. Out of radiotherapy January 2019
Blog about my cancer.
You will have good days and bad days but eventually the good days will outweigh the bad days.
Just take it one day at a time. The tiredness is awful and you feel like you just sleep your days away but that gets better as well. I used to get up have a shower get dressed and then sleep on the sofa, i would then do something minor around the house or in the garden and then fall asleep in the chair, my whole day was like that. I can now do all the housework, some gardening, look after my 5yr old granddaughter for a few hours and still stay awake to watch a film, however that all depends on the film Lol
I finished my treatment at the end of April so your approx 2 months behind me, by my reckoning you will be wide awake and ready to party by Christmas! Lol
Hi Paul Best advise I can give you is listen to your body. I had Radiation fatigue yiu can’t fight it I found out listening to my body and sleep when I needed it intersperse with a gentle walk gradually extending the walk every day. It’s a marathon nit a sprint our bodies take a battering to get rid of the cancer so we need to treat it gently whike we are recovering You’ll get there we all do just at different paces.
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
It WILL get better and it will take time for me it was a looong time, almost 12 months
I had all the issues tiredness, loss of taste, appetite,saliva etc but my swallowing issues were mild. I lost interest in everything and lost confidence and couldn't make decisions. I wish I had discovered this forum much sooner because I thought I was the only one feeling like I did. At the end of treatment (35 RT on the Parotid gland) I was hospitalized for 4 weeks fed by NG tube at one stage was down 3 stone. I was living on custard, thin soup and Fortisip.
After about 11 months things quickly improved taste started to return appetite got better and gained weight.
I think we have all felt similar post treatment, though the length of time varies. It is very difficult when in the depths of despair to see light at the end of the tunnel It DOES and WILL get better.
I am now 21 months post treatment and life is good again, I now enjoy my pint of Guinness (couldn't face alcohol for a year) it tastes so much better than Fortisip!!
Hang in there Paul brighter days are ahead.