I finished treatment six months ago, six rounds of CAPOX following surgery for colon cancer and a liver ablation for a secondary tumour. I’m feeling more exhausted than ever, with residual neuropathy in hands and feet, and muscle and joint pain. I wake up feeling stiff and sore, as if I’ve been cramped up for hours after running a marathon! It’s really getting to me, and I’m constantly tearful. Is this just to be expected?
Good afternoon DaisyJane,
Thanks for getting in touch.
My name’s Karla, I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.
Welcome to our online community, I’m glad you’ve found us. You might like to join one of our forums to connect with other members. Our bowel cancer forum may be a good place to start.
We naturally hope that when treatment completes, we’ll feel better quickly. However, it often takes longer than we expected. Recovery can be a lengthy and frustrating time that varies greatly from person to person.
Fatigue (tiredness) is one of the most common side effects of treatment. So yes, it can be normal to still feel exhausted.
We’d recommend talking to your GP, consultant or nurse specialist (if you have one) about your symptoms. This means they can make sure there’s not another cause like low red blood cells or thyroid function. And check if anything else could be adding to your tiredness like pain or stress. They’ll be able to help work out how best to manage it and monitor your improvement.
If there’s no other cause for your fatigue, managing this becomes part of your recovery and everyday life. Unlike normal tiredness, treatment related fatigue isn’t relieved by rest so even the simplest of daily tasks can be a challenge. There are a few things that can be done to adapt to these changes in energy levels (see under ‘managing fatigue’ and ‘living with fatigue’).
The symptoms of peripheral neuropathy can improve gradually with time as the nerves slowly recover. This can take several months or more. Again, it’s worth talking this through with your GP or hospital team so they can recommend what can help.
Muscle and joint pain can be caused by chemotherapy but there are other causes that aren’t cancer related. Making an appointment with your GP will allow them to assess your pain, diagnose what’s causing it and recommend the best way/s to cope with it. This might be things like daily exercise (walking, swimming, gardening etc), physiotherapy or anti-inflammatory medications.
You’ve been through a lot and feeling tearful is natural. Sometimes we don’t begin to process what we’ve been through until treatment stops and we try to get back to normality. We’d encourage you to let your GP know how much you’re struggling. If they don’t know, they can’t help. There’s lots of support out there, it’s just working out what’s best for you.
Bowel Cancer UK has some good information about living with and beyond bowel cancer that might be worth reading through.
The support from Mission Remission may also be useful.
I hope this information helps to guide you.
I wonder if you might benefit from giving our support line a call. We often find we can explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed.
Take care and best wishes,
Karla (Cancer Information Nurse Specialist)
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email or use webchat.
Ref: KS/SMc
