Wanna play guitar (update Fri 23.04)

FormerMember
FormerMember
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Hi All, weekly update for me (Tim). It’s week 7 since end of treatment!

I’m glad to say I haven’t taken any painkillers for a week! That’s not to say there isn’t pain, it’s tolerable though. It’s been 12 months since I’ve been taking them and I feel a bit drowsy without them. I’m hoping it’s a bit of cold turkey and my system needs time to full eradicate the residual drug effect.

  • Taste: still poor . I get a bit of flavour initially, then it dissipates as I carry on eating. So some way to go there.
  • Neuropathy: no worse, but a tip is to keep your hands and feet warm. Again, some way to go there.
  • Mouth: the mucositis has largely cleared now apart from one area between my last tooth and roof of mouth.
  • Fatigue: no total wipeouts this week, so definite improvement there.
  • Dry mouth: this is a problem, especially at night, but I’ve found Trident no sugar chewing gum works in between time

So not a great deal to report, but I can do a 3K bike ride(flat). I’m so pleased I’ve found the energy for this as my muscles were very depleted after virtual non movement for ten weeks. I encourage anyone in treatment or just post treatment to exercise if you can-even a 100 yard walk helps.

One last item. I had my first Covid jab last Saturday and felt fine for 24 hrs but the following 48 hrs left me tired with a  slight stomach upset. I wouldn’t rush into getting the jab until at least 8 weeks after treatment ends as long as you van isolate. Plus I would check with your Consultant or Macmillan nurse before you get it.

Anyway, any comments, advice or just to say hi would be most welcome. Stick with it and have a relaxing and pain free week . I’ll post next week!

Best wishes to everyone. Tim(wanna play guitar)

  • Hi Tim can you try the xyimelts at night time ? I still use them snd find it helps the mouth throughout the night. Well done on bike ride  yes concur the gentle exercise is a key I found it helped me ok some days onky to nearest lamp post. 
    the xyimelts but on line Amazon or mouth ulcer company . Even if you’ve very little saliva a sip of water just before you get down for sleep then stick it onto gum  I still take water to bed rarely need it now until I wake up  

    onwards n upwards. Have you played the guitar yet ? 
    Hazel x

    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/

  • So glad it’s going well Tim. Gentle exercise really is key to a swifter recovery, if it can be managed. Onwards and upwards! 

  • Sounds great TIm 

    I would second the  xylimelts. 
    I forgot to put one in last night and it took waking four times with a dry mouth and glugging  water before the penny dropped. Just shows you can drink in your sleep! 

    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

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  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Hi Hazel, Nice to hear from you! I do use the xylimelts but find them a bit sticky and I need to brush my teeth as soon as I wake up . I’m managing at the moment with Biotene gel which seems gentler. If I can’t get to sleep then I’ll go to the xylimelts which do work.

    Ive been dabbling on the guitar as well so things are on the move. I’m still tired out by 9 o’clock and have to go to bed. But! There is definite improvement.

    will update next week. Hope you are very well indeed.

    Best wishes. Tim. xx

  • FormerMember
    FormerMember in reply to Beesuit

    Hi Dani, Yeah the xylimelts are effective but I find the Biotene gel a bit gentler . I’ve always got the xylimelts at the ready in the night if needed.

    Hope you are very well indeed. I’ll post again next week. Take care.

    Tim xx

  • FormerMember
    FormerMember in reply to MarkEL

    Hi Mate thanks for reply. Gonna take the time to full read your full blog later as it’s superbly ordered and written with lots of tips and similar events to myself. 
    I hope you are very well indeed.

    I’ll post again next week. Best wishes. Tim

  • Hi Tim I  will be  3 months out of treatment soon. I was walking over 3 miles every morning  before treatment which I think really helped my treatment and recovery. For weeks I would just go from bed to couch everyday and was feeling crap and ended up at A & E for blood pressure problems which probably contributed to slowing my recovery. They altered my medication and I feel much better and went for a 3 mile walk this morning so I really believe this is helping. I use to have the cold feet which was down to medication which I since stopped. All the Best Regards Min 

  • FormerMember
    FormerMember in reply to Minmax

    Hi Min, nice to hear from you!  I too would exercise 3 times a week for 3/4 miles on my golf course Some people even said I was playing golf! But that’s debatable. Anyway, I’m sure I benefited from it now being 7 weeks post treatment. I virtually spent 10 weeks in bed apart from attending my chemo/rads sessions , I just hadn’t got the energy. My big problem was constipation and having enemas and Laxidose to sort it . It knackered me. I’m so pleased for you being able to do a 3 mile walk again. The exercise is truly uplifting. I’ve got a few more weeks to get to the fabled 3 month mark . The Consultant said this is normally a turning point in recovery.

    Anyway, keep me posted on your progress. Best wishes Tim

  • Hi Tim Gosh we really are all different. I was admitted to hospital for nearly a week. It really was a tough time mentally and had really bad throat stuff. As the weeks go by I feel as if I am getting better slowly. I can now eat a lot of stuff but the taste is still off. Regarding the energy thing I would literally go from sofa to bed and that was it for weeks. I did have an issue with my blood pressure which made me feel ill and dizzy standing up. I think this slowed down my recovery but appears to be sorted now Thank God. I saw my team last week and they say I am doing really well and dont need to see them for another month. It sounds like you had a really rough time and constipation does not help. I would just take it handy and dont push yourself. Apparently recovery can be a year or two which I am hoping won't apply to us. I have been blessed in some ways and cursed in others which is hopefully over. They didn't give me the anti sickness tablets and I wasn't taking evening pain relief which didn't help things , Hopefully all in the past lol . Things will get better soon Keep me posted All the Best Regards Min