Its been a while since Ive been on the forum as its been a year and a day since my Aunt Marie was operated on for the cancer in her jaw. Part of her top jaw/gum was removed in the surgery,and reconstructed from her calf (skin muscle and bone) . I am sorry I don't know all the medical terms and don't want to press Marie for them its all confusing enough as it is. She was left with a scar from the bottom of her lip down her throat around her neck. She was recovering well from the surgery her main concern after her leg healed from the skin/muscle drafts was that she could only open her jaw a fraction to eat, this was being stretched in agony many times a day with a device that was like torture. However, in the last week of radiotherapy she was in a terrible way and had to be hospitalised. Shes a brave soul and will not complain but the pain on her tongue is unbearable, she has the cocaine mouthwash and has tried many other medications, tablets mouthwashes etc but nothing eases the pain. She barely sleeps, is skin and bone and feels so isolated and alone. Some times she says "will it ever get better" and I wish I could help her. She went to a group at her hospital but no one has suffered from oral cancer, she really needs to communicate with others. She is not online and asked me to post this message to ask if anyone else has suffered the same and would be willing to talk on the phone with her briefly?
Please PM me so I can either pass on your number or give hers, if you can help or advice her, I can't tell you how much this would mean to her. Thank you Lorna x

This message has been edited. Last edited by: Lorna,

Hello Lorna ,this is a worry indeed ,my husbands cancer was different from your aunts so would not be able to help with a phone call .My husband was very poorly after his treatment and took nearly a year to get him on his feet so all I can offer here is some advice as how to get your aunt the proper care and medication etc she needs .

The hospital and clinic we attended post treatment did the best they could but finally through our doctor and cancer nurse Paul was referred to the palliative care team at our local hospice .A doctor came from there to the house and within a few weeks got Paul's medication sorted out and he also went to the out patient clinic there for physio etc .They were our saving grace .

They are the best with medications post cancer treatment and also have people who are qaulified in dealing with personal and emotional problems .It should be noted that this team of specialist doctors are there for people who have had cancer treatment and have been cured not just for terminal cases they are excellent at helping with medications and rehabiltation post cancer treatment when doctors and clinics are struggling to help a patient .

Your Aunts doctor or her oncolgist at hospital should be able to set this up, but someone needs to make an appointment with either to get the ball rolling . Maybe you could do this for her .This is what we had to do as clinic and doctor could not deal with my husbands side effects as they were too complicated .It was the clinic cancer nurse who arranged this though as they could not think of anything else to do with him.

I do hope this may help you and is worth a phone call to both the clinic and GP .Please let us know how you get on .There may be another member who can be more of help who has had similar surgery and can reassure your Aunt ,but sounds to me as if she could be doing with a little more TLC from medical side .

Keep us posted Lorna ,

Bell and Paul

Hi Lorna, I think your Aunt should probably phone the MCF telephone helpline. The number is 01924 950 950. If you look in the Projects, Fund & Awareness section of the forum there is a post about it under Telephone Help Line. They will give her options on who is best to speak too. Some of us volunteer and there is also more in depth advice from professionals. Hagg.

Hagg, Bell and Paul, thank you so much for your replies and information, it really is appreciated. I will pass this on and let you know how we get on Love Lorna and Marie xx