Help for side effects and support

Dear FamilyGirl04, 

My name is Liz, and I’m one of the cancer information nurse specialists on the Macmillan support line.  

Thank you for reaching out for information and support as your dad continues his treatment for colorectal cancer that has spread into his bladder and liver.  

Thank you for sharing so much information with us. Reading through what you have shared I have grouped your thoughts and concerns into five themes which may be useful to address.  

• Dad’s peripheral neuropathy and how it is impacting him. 

• How the news about the secondary cancer in his liver has impacted his mental health. 

• The lack of understandable information that both you and dad have about his treatment.  

• Dad’s need for someone to listen to him and his concerns about the impact treatment is having on him.  

• Where all the family can get further support.  

Peripheral neuropathy is a possible side effect of some chemotherapy drugs as well as other conditions such as diabetes. It is really important that Dad tells his chemotherapy team before his next cycle of chemotherapy about his symptoms so that they can tailor his treatment if needed. If you are unsure if dad will do that, I suggest that someone goes with dad when he has his pre-cycle blood test and prompts him to tell his team. If you are concerned that the neuropathy is worsening or dad’s condition is causing you concern, he will have a 24-hour hotline number for his chemo unit and that should be used immediately. If you feel that dad’s condition is life-threatening at any time, please dial 999.  

As you said peripheral neuropathy can cause symptoms such as tingling, pins and needles or numbness in the affected area and can affect balance, walking and co-ordination making the person feel unsteady.  

You mentioned that dad had been encouraged to exercise, and this is important but also hard to do if you feel unsteady.  Dad, with your support, could ask his GP to refer him to a physio or exercise specialist there may be a local programme where people living with cancer can have tailored support.  

If dad has pain from the peripheral neuropathy there are various methods it can be managed such as drug therapy, TENS, acupuncture and a referral to the pain management team.  

An occupational therapist would also be a useful person for dad to be referred to as they could assess dad and she if he would benefit from any equipment.  

There is a couple of things that dad should think about to protect his feet and hands and keeping himself safe from falls. In relation to his feet and hands he should always wear well-fitting slippers at home and not go barefoot, keep his hands and feet warm, checking the water temperature with an elbow before baths, showers, washing up. And take precautions, such as use the banister, keep room free of cluster and have a light on at night for bathroom visits.   

You shared that dad’s mood has naturally been affected by the news that the cancer has affected his liver. I would suggest that you encourage your dad to speak to his GP about how he is feeling, his GP will be best placed to assess him and suggest any treatment and support needed. There may be local support groups that dad could access, and you could search for them here. You mentioned the information centre in the hospital that dad goes too, that would be a good source of local knowledge and support. 

Dad could ask his GP to refer him to the local palliative care team. They can support dad and the rest of the family emotionally and with practical support. Dad might be a little concerned about this suggestion and think that such a team is related to end of life. But good palliative care is for anyone living with a cancer for the rest of their life and to allow them to live well with that cancer.  

Dad may wish, with family support, to discuss his decision to have treatment with his doctors and the impact the treatment is having on his life. In our booklet about advanced cancer there is a section on making treatment decisions which might be useful. If you’d like a hard copy of any of our booklets they can be ordered on Macmillan orders. 

You mentioned that dad is unsure who his key worker/ clinical nurse specialist is, if you phone his oncologist’s secretary or ask in the chemo unit, they should be able to tell you. They will want dad’s permission to share anything with you.   

Although the nurses on the support line are not part of the NHS or have access to your dad’s medical records, we would be more than happy to talk things through with you or dad and provide a listening ear if you would like to call us.    

Caring and supporting a loved one with cancer is exhausting so please make sure that you are looking after yourself as well. You could look on the “in your area” search to see what support is available for families around you.  

You may wish to explore our online community, talking to people in a similar situation may help a little. 

Take care.   

Liz  

Cancer Information Nurse Specialist   

 Ref LZD/PG