Post treatment recovery for hpv tongue cancer

Hi Maj , my hubby had chemo years ago for bowel cancer and suffered with pins and needles but this will pass quite quick. Sending you my best wishes to you both xxx

Hi Maj1 

I was still on morphine at 12 weeks post treatment. What pain killers is your husband on? If they are not working ask for something else at his next review. RT damage takes a long time to heal but it does. 
The tingling is called peripheral neuropathy and is caused by the cisplatin. That’s a tricky one. It often improves but sometimes doesn’t. Exercise helps. Wearing soft warm socks to bed helps too and wear  gloves especially during the winter when he goes out. You can get those squeeze balls for hands that can stop the tingling for some people and I would definitely explore acupuncture 

Best of luck 

Thank you so much for replying, it helps to know that it's a normal part of recovery. I think acupuncture is a good idea. He's taking morphine and now trying codeine as well this evening which has helped. Feels like going back a bit as he was trying to stop taking so many painkillers but if its making you feel miserable with pain and its early days it's worth trying for a bit longer. He has no energy at all either, it's difficult when you can't help 

Maj1 said:

He's taking morphine and now trying codeine as well this evening which has helped. Feels like going back a bit as he was trying to stop taking so many painkillers but if its making you feel miserable with pain and its early days it's worth trying for a bit longer.

Spot on. Take pain killers by the clock to keep ahead of the pain. We are all different and recovery is a marathon. Get on top of the pain for a week or two then try a little less. Honestly it does improve. Don’t let him be tempted to just stop when he feels a little better. The body gets used to the opiates and you have to reduce slowly or you get absolutely awful withdrawal symptoms. 

Maj1 said:

it's difficult when you can't help 

But you are helping. You are there for him and here seeking advice. He’s a lucky man to have such a considerate partner. Remember to make time for and be kind to yourself

Hi. I started reducing my pain meds around week 13 as my oncologist says cancers bad enough csncef and pain is unacceptable use the pain meds. Your body will tell you when  you don’t need them Then do a slow withdrawal plan. Treatment is hard enough don’t fight it. 
Its a marathon not a sprint we all get there in the end. 
Hazel xx

Thank you. I am reading your blog, it is do helpful tonpeople going through it. I think getting back on regular painkillers will work for him. Is exhaustion normal? He feels very tired weak and wobbly.

Hi Hazel, you are right, he was trying to get back to normal too soon and is now paying the price, I think getting back on his painkillers for a while will really help. Otherwise it's too much of a struggle and getting him down

Mary xx

Maj1 said:

. Is exhaustion normal? He feels very tired weak and wobbly.

Yes it is. It’s a combination of the actual effects of the radiation causing radiation fatigue, his lack of activity over the last few weeks, the medication and the imbalance in his nutrition. 
Just encourage a little exercise. A turn round the garden or to the bottom of the road AND sleep when he needs it. 

Thank you Dani