I wish I knew then…

Hi MrsPooks unfortunately RT does come with many side effects, however he won't get them all, and the ones he does get, he will be given something to ease them. As for burns, my wife used to apply Aloe Vera gel on my neck after each RT session (only after not before). also if it gets really bad you could ask for Flamazine, which works wonders. Try not to focus too much on the side effects, they are manageable. All the best to you both. Any question ask away on here, someone will always help if they can.

Regards Ray. 

Hi Difficult one my oncologist promised me cure which he did do. He also apologised for the fact he was going to make me I feel iller  than I had ever been before he did that as well. 
The side effects are numerous but  we don’t get them all. 
Recovery everyone gets told in a few   weeks  you’ll start to feel better it’s very few that are that lucky.

For me radiation fatigue hits you like a wave and there’s nothing you can do apart from listen to your body .If you try to fight it you’ll loose. I became adapt at 20 minute power naps. 
Take everything one day at a time and don’t compare to others all our treatment plans are individual 

Here to help any time.

Hazelx

Hello Hazel my Husband has P16+ HPV base of tongue cancer.  Also in lymph nodes.  He is due to start treatment soon.  Radio/chemo.  Hes 73.  Im worried that hes so tired already...how will he cope with the treatment side effects of fatigue?

Hi Welcome to the club none of us want to join. Remember we don’t get all the side effects we are told about. As fir radiation fatigue mine didn’t start until around 3-4 months post treatment. Only advise I can give us listen tk your body you can’t fight it. I became the queen of taking a 20 min nap. I literally went to ged fully dressed under the duvet and closed the curtain snd slept. I was able to eventually got it down to 20 minute  Power Nap. I had a routine sone oeopke manage by sitting down quietly I coped with going to bed. 
Take everything one day at a time don’t look if plan too far in advance. Remember HPV driven tumours respond extremely well to treatment. Blog below might help you.

It does  go as quick as  it came  I was unlucky mine lasted over a year most don’t.
 

Hazel x

Thanks Hazel for your reply.  Your tiredness started MONTHS after treatment?! Do you mean you had the cancer for a year or the treatment?  Thanks for the advice xx

Thanks Hazel for your reply.  Your tiredness started MONTHS after treatment?! Do you mean you had the cancer for a year or the treatment?  Thanks for the advice xx

I have looked at your blog now...when you had the cancer did you have trouble swallowing and/or pain in head and face (as my husband has)  also how is your swallowing affected now? Although I realise every person is different.  (Enjoyed reading your blog)

Hi I was diagnosed May 2018 after finding a lump in my collarbone 2 months  earlier. Treatment started July finished 31 August and I got my results in the January the radiation fatigue started around that time in Jan 2019 . 
You can explain what radiation fatigue feels like but  it’s nothing like general tiredness that you have prior if during treatment. It comes on suddenly and poleaxes you. But please don’t stress as it’s unusual ti get all the side effects . Just take everything one  day at a time you cant legislate for what you may or may not get. 
j had no issues swallowing prior to bei g  told j had cancer. Swallow became difficult during treatment hence my n g tube was fitted week 3. I did and still do my swallow exercises every day. Now I have the odd issue but nithjng that a sip of water can’t solve. 
yesterday we went out for s Chinese the duck was a tad dry.  I can’t eat spicy food but that’s just me. 
I had  no head mouth or throat pains prior to being told I had cancer i was  the fittest I had ever been no illness at all just Larry the lump. Which was cancer in my lymph node. 
hugs Hazel x

thank yoh for reading my blog hope it helps. 

I think I had been prepared well by my team and wasn’t overly surprised by the usual neck burns, loss of taste, loss of saliva, lymphodema, fibrosis and general throat and swallowing pain around the RT area, but thing that I most wish I’d known about back then was the awful constipation caused by the masses of painkillers, which came on very suddenly twice, once on a weekend!  My advice would be to get in a load of Movicol (aka Laxido) from the chemist and take it religiously. If he still has an attack (which I did) take the max dose allowed (shown on the packet) and that will probably shift it. All the other side effects I felt I had control over but the constipation was really scary and excruciatingly painful. 

Hi Mrs Pooks. Like Mark I was well prepared by my team too but I wish I had been more prepared for the sudden crashing down of the curtain. One day I was mumbling along thinking , this isn't too bad then one Friday( Why is it always at the end of a week?!!!) at the end of week three my pain hit the roof and I struggled trough the next two days not eating or drinking anything at all. I think that period of a week getting my analgesia titrated properly was the worst week of the whole treatment but when that was sorted the last two weeks and immediate recovery were OK...a challenge, but OK.

I wish I had discovered that mucositis can be almost entirely prevented in some people with Propolis mouthwash and that Aloe Vera Gell can be used similarly (as well as topically to help neck burns). I didn't have a chance to try that.

One thing I'm glad I discovered was this community

Chicadee16 said:

Husband has P16+ HPV base of tongue cancer.  Also in lymph nodes.  He is due to start treatment soon.  Radio/chemo.  Hes 73.  Im worried that hes so tired already...how will he cope with the treatment side effects of fatigue?

Hi Chicadee16 and welcome to our little group.

Have a look at MarkEL  profile too. He has a good diary of his treatment.

Radiation fatigue is a side effect but not everybody is that bothered by it. I must admit I spent much of the last couple of weeks and a good few after pretty tired but that's helped enormously by a gentle walk outside. I'm quite sure that a heck of a lot of it was down to the morphine because when I stopped that I was much better.

There isn't much to "cope" with. Just don't fight it and rest.

It isn't easy but it doesn't last forever