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| | Joined: Jan 2020 Posts: 2 Member | OP  Member
Joined: Jan 2020 Posts: 2 | My mum has a recurrence of squamous cell buccal mucosa. She had surgery July 18 (flap/neck dissection) followed by 6 weeks radiotherapy.
In September 2019 she was diagnosed with a recurrence and has declined surgery, radiotherapy and chemotherapy as she doesn't want anything which will make her feel worse than she already does.
The tumour has now grown onto her lip, a hole is in her cheek and the pain is most in her chest now. Food needs to be pureed or mashed and frequent changes of dressings are required to absorb secretions.
She has a morphine patch and a Scopoderm patch to try to dry the discharge.
Anyone else living with this/observed this who has any advice on how to cope? Strategies that make life more comfortable/bearable? It would be nice to not feel so alone.
Last edited by Peachy; 01-24-2020 01:55 AM. Reason: Grammar
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Peachy, welcome to OCF! Im so very sorry to read about what you and your mother are going thru. I cant imagine how difficult this must be for each of you.
The best things I can suggest is to find a mental health professional like a therapist familiar with working with both patients and caregivers in this type of situation. Im sure they would have different coping methods to help. I would ask your mothers doctors and/or nurses for help finding the right person. Usually treatment facilities have specialists they can refer patients and caregivers to. Theres also hospice where they help both the patient and caregivers cope with end of life concerns while always focusing on whats easiest for keeping the patient comfortable.
Wishing you both all the very best with everything!!!
(((HUGS)))
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jan 2020 Posts: 2 Member | | OP Member
Joined: Jan 2020 Posts: 2 | Thanks so much for replying Christine, that's very kind of you.
My Mum has access to the hospice counsellor and will continue with that. I'll try your other suggestions too and hopefully they may lead somewhere.
With best wishes, | | |
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