9weeks post treatment

Hi Brisbane1 he's doing really well eating almost normal after such a short time from the end of his treatment. It is still early days for him, and he has a lot of healing still to do, it often seems like one step forward and two back. The chemo can make your limbs feel odd, my legs used to feel fuzzy, and still do sometimes, nearly 7 years on. If you are very worried, you could give his team a call.

Ray.

Hi, he really does sound like he is doing quite well.  Your right about highs and lows of recovery.  Fatigue is a common problem in recovery.  There is nothing you can do about it, even sleep does not really help.  Try to get him to keep his "battery" at least half full rather than empty before resting.  Recognise that he won't be up to doing what he did before treatment right now.  That will come with time. Outdoor exercise is good for fatigue and mental half - walking the dog etc.

Knowing you have that scan coming up does raise the anxiety levels.   Easy to say... Try and relax you'll know the result soon enough.  Difficult in practice! 

I had carboplatin so can't comment on the cisplatin side effects.  I do have some nerve twinges but I don't know if it's the treatment or just getting older! 

Hi Brisbane

I finished chemoradio for T2N1MO Tonsil cancer in June 2023.... treatment is very challenging and at your husband's stage in treatment I was having a tough time, as you say 2 steps forward and 3 back, low mood was the norm, but things do improve, I have started Swimming again, playing golf, sunshine hols, eating well, enjoying my food...

Just takes time 

Take care and best of luck 

Peter 

Hi Brisbane1,

I'm also 9 weeks past treatment and after a fairly good start (although I've had phases of being sad and anxious and posted about them) I've found myself currently very fatigued and having issues with food and it's made me feel very low. I'm also waiting for my scan in November. It's demoralising when you think you're doing well and then you go downhill, and I fully empathise. After some weeks of feeling low and so tired (I've had a cold too) I felt better this morning. I wasn't sleeping well so I got a new pillow. I was worried about not eating so I spoke to professionals who have referred me for help with it. I think he needs to speak to his CNS to get reassurance about the tightness in his arms, otherwise he'll just carry on worrying...as will you. There are so many layers of anxiety around recovery and not knowing if the treatment has worked that it's very difficult to stay constantly positive, but we get past our low patches - although listening to the experiences of the people in this group, there'll be many more along the way!

Re cisplatin, I had 7 rounds of cisplatin, and apart from fatigue I've had no side effects so I can't help. Talk to a professional. You're not bothering them. I've been told to phone any time I need to. Take away as much anxiety as you can and his mood will get better and hopefully he'll start smashing it again x

Thank you for taking time to reply. I hope you continue to recover well and get good news when you get scan in November.  X

Hi sounds like neural peripheral damage which isn’t uncommon and a known side effect. Contact his cns either my email id phone. The tiredness can be radiation fatigue I did get that. The only thing he can do is listen to his body it’s telling him to rest. I became the queen of the 20 my. Power Nap. Gentle exercise in between will help. Yes 2 steps forward and 3 backs the burn. Have a read of this’s article it helps lots of people.  Our treatment is brutal but remember a good cure rate. It all takes time.

hugs Hazel

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Thank you Hazel.always reassuring to hear from people who have been same place we are. Think I need to remember how well he is doing and focus on the positives rather than the negative. X

Hi no problem although keep focusing on the positives slowly they will overcome the negatives. We all recover at different paces but he will get there. Some side effects  take longer than others. I’ve now learned to live with my dry mouth and inability tk eat anything remotely spicy. Bug j can eat chocolate so that makes up for it xc