Mums mouth cancer

Hi,

This is not like me. I'm not one to discuss family problems or feelings. This is probably why I'm struggling so much. 

My mum is not one to deal with health issues. I can't remember her ever going to the doctors and it was only just before covid she went to the dentist for the 1st time in easily 35 years. She only needed one filling (2019) after that she complained she kept biting the side of her tongue with the tooth that had been filled, she made another appointment as she thought the filling was the reason, her dentist checked and said there was no reason and he couldn't see any issue, months past by and she was in agony. It was near Christmas and she showed me her tongue. There was a huge growth at the base of her tongue. I asked her to go to the doctors asap, it looked horrific. One day while she eating, a piece of food jammed into the growth splitting it open, it bleed constantly and the growth doubled in size, it had obviously been growing inside her tongue and now it had burst out of her tongue. One day my mum and dad came to my house and told me they had just been to A&E (Sunday) as she was feeling so poorly, it was a young doctor who had examined her and from what my dad described the young doctor looked horrified when he saw it, he took photographs and sent it to another doctor who wasn't working at the time. They took a biopsy and after a few days we learnt it was cancer. 
My mum was told she'd need surgery, she had more than 80% of her tongue removed in 2021. Not long after the surgery we were told she had the all clear! We were all absolutely delighted!! 
After only 10 days, my mum complained of something growing on her jaw where her teeth had been. The surgeon told her it was due to her top teeth impacting the gum where her teeth had been prior to surgery. For peace of mind they took another biopsy, another few days passed before we got the devastating news that it was cancer. She started chemo and immunotherapy but she had to stop the immunotherapy as it was making her too ill. The cancer has since spread to her neck, she has 3 large tumours that look like the are growing out of her skin and are very painful. 
On Thursday my mum was given her last cycle of chemo, she has an appointment on the 8th with her consultant, I am terrified of what they are going to tell her!! She was told she'd always have cancer!
Will they continue with her chemo even if the cancer is still growing? 
I can't imagine living a single day without her, she is my best friend, I don't have anyone else I can talk to. 
My mum is bottling everything up and not talking about it, I know she's terrified and she needs to talk. I've tried asking her to talk to someone from MacMillan or her Cancer nurse but she just shuts it down. 
Because of covid we haven't been allowed to go in to the hospital with her, I feel so in the dark as to what's going on. 
Apologies for the long, winded story. I know I'm not the only one going through this! ️

  • Hello Lb120912, 

    I am so sorry to hear about everything your poor mum has been through. How did her appointment with her consultant go today? I hope that the appointment was helpful and that you now have a clearer idea as to whether they will continue with her chemotherapy and about what her treatment options might be. There is in-depth information on our website on mouth cancer which may be of interest to you. 

    It must be really hard for you to see your mum bottling everything up and not wanting to talk about it. Having you to talk to is undoubtedly of great comfort to her and you were right to suggest she gets in touch with Macmillan or her cancer nurse. If she prefers talking on the phone, there is also our nurse helpline she is welcome to ring on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. Our nurses will be happy to talk to her about anything that is on her mind and she would like to discuss. 

    It's a shame that you haven't been able to accompany her to her hospital appointments because of covid and that you feel a bit in the dark as a result. Perhaps you could try and ring her medical team for an update on the situation?

    You're definitely not alone on the forum going through this and supporting a loved one through cancer. There is useful information on our website for family friends and caregivers which I hope you will find useful during these challenging times. 

    We're all here for you anytime you want to reach out and others who have been in a similar situation will hopefully come and share their story with you. I hope that you have a bit more clarity soon on what your mum's treatment options might be. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Thank you so much for the reply!

    Today my mum was offered radiotherapy and a low dose of chemo. The radiotherapy will be 5 days a week for 6 weeks. When I heard the news I was happy they were continuing her treatment but when speaking to my mum she's devastated. This has left me so confused as I know she was worried they'd stop her treatment altogether . I don't know if it might be sinking in that they are only trying to prolong her life and not cure the cancer, or if they have told her something else and she doesn't want me to know. Thank you for suggesting I contact her medical team. I will do that tomorrow. 

    Tonight my teenage daughter was asking about the treatment and I explained to her it will help prolong her life, the look on her face - I'll never forget. I hadn't told her my mums cancer isn't curable, so my daughter has been thinking all this time that her Granny will get better. I feel broken now. Wish I was open with her from the start. 
     

    My mum doesn't open up to anyone, she's even told us not to tell anyone, even her brothers don't know. She won't talk to anyone on the phone as it is very hard to understand what she is saying, it kills me to see how  self conscious she is about it. 

    Again, thank you for your message!
     

    Laura xx