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Supporting brother with mouth cancer

LizyT
  • 2 replies
  • 43 subscribers
  • 544 views

Hi,

I hope it’s ok to use this service.  My brother has had surgery for mouth cancer and is nearing the end of radiotherapy and chemotherapy.  My mum and I are with my brother and sister in law as often as we can - they live two hours drive away so we stay for a week at a time.  My younger brother has also helped out but he works making it slightly harder for him to be here.  My concern is that mum and I will be going home tomorrow and are concerned how they will manage.  It has been a balancing act of being here to support but also allowing them some time to get used the new normal and coping.  My brother is struggling with side effects from his treatment - horrific mouth ulcers, sore and bleeding lips, and now constant thick sticky saliva draining from his mouth.  He has a PEG feeding tube which is his only means of nutrition as his mouth is too sore for him to eat.

we have gently questioned them regarding contact with their macmillan nurse but don’t believe they have done this.  Our feelings are that if they make contact before end of treatment in 2 days time, it is someone my sister in law can ask for advice and my brother could text with concerns about how is wife may be coping.  Obviously this is something we need to be very careful about, but wonder if this might be the right/useful approach?

  • Hello  

    My name is Steph and I am part of the Community team here at Macmillan. 

    I'm just posting here to let you know that a nurse will be along soon to answer your question. I'm afraid that your question had got a little lost in the 'Ask a Work Support' section and needed to be moved here for a response from our nurses.

    I'm so sorry that you didn't receive a response prior to setting off home and I hope that your brother and sister-in-law have the right support in place. It sounds like you and mum are doing a great job and we're here to help you with any questions you might have.

    As it sounds like you might benefit from some immediate support, I'd encourage you to contact our Support Line teams directly. They are here to support family (in addition to the person with cancer) and can help you find your best way forward. Even if you'd just like to talk everything through, we're here for you.

    Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

    We will offer a further response to your question, but in the meantime, please do reach out whenever you need.

    It's positive to see that you've also found some support from our family and friends forum and I would encourage you to keep chatting.

    Best wishes

    Steph
    Online Community Officer

  • Hi LizyT

    Thanks for getting in touch with us. My name is Tricia and I’m one of the Cancer Information Nurses on the Macmillan Support Line.

    I am sorry to hear about your brothers’ difficulties through his treatment for mouth cancer. This must be tough for him and all of you as his family supporting him.

    It sounds like he is suffering with the radiotherapy side effects and these can be more severe when this is given alongside chemotherapy . Even though he has completed the treatment, the side effects will continue and may get worst over the next 2-3 weeks which is important to know so he can be prepared. Although side effects are expected, it can still be a shock once they happen.

    There are ways to try and manage the side effects, but I think the first thing to say is he should contact the 24hr chemotherapy help line to discuss the side effects he is experiencing with the mouth ulcers and sore and bleeding lips. Although these side effects are expected it is important that they are assessed to make sure no signs of infection and to help find ways to manage and help ease them so that your brother can feel more comfortable. I wonder if he has adequate pain relief such as a morphine patch and has been prescribed adequate products for his mouth care to help with the ulcers. All this can be assessed via the 24-hr helpline and it is important for them to know about the problems so they can act as necessary.

    It is also worth him contacting his Clinical Nurse Specialist (CNS). She may or may not be Macmillan but hopefully he will have been given a contact number on diagnosis. The CNS can help co-ordinate his care and to liaise with others who should be involved with him during treatment. A Multidisciplinary team (MDT) for head and neck cancer include speech therapists ( who specialises in helping with communication and swallowing problems) and dieticians (checking on weight while he is unable to eat and drink and managing the nutritional side while on PEG feed)  for additional support alongside the Consultants and CNS’s.

    The CNS can also provide emotional support for your brother and sister-in-law also and helping them understand what is happening now and going forward. So again, he shouldn’t hesitate to contact them as that is what they are there for. 

    It sounds like at the moment , he will be unable to eat and drink due to the treatments but in the future there are tips regarding Eating and drinking after head and neck cancer treatment. Again, guidance from his dietician and speech therapist will be vital for when he can start again.

    The saliva changes  again can be expected  for this stage of his treatment but there are ways to try and help with this by rinsing with his mouth regularly without swallowing it and other advice on  mouth care after head and neck cancer treatment to help manage this. Dental care is important for the future also.

    There is support available for your brother and his wife which may be beneficial now or for the future. They can contact us on the Macmillan Support Line. Your brother himself could get free counselling  through Macmillan  when the timing was right.

    There is also a Head and neck cancer forum on the Macmillan Online Community  if they would benefit from sharing experiences with others with a similar diagnosis. Also there is The Swallows Head & Neck Cancer Support Group and the Mouth Cancer Foundation  Helpline that could be helpful.

    It sounds like you are a great support to him as a family. Supporting someone with cancer can be difficult, emotionally and physically. It is important to look after yourself too. Sometimes being able to share experiences with others in similar situation can be invaluable. Our Family and Friends Forum offers this type of support. Remember also the Macmillan Support Line is available for support for any of you as a family too.

    I hope this is helpful. Please don’t hesitate to get back in touch at any time.

     Best wishes to your brother and all the family

     

    Tricia
    Macmillan 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. 

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