SCC of the mandible help if anyone has experienced this

Hi Pickles.

Welcome to our little group.

I'm sorry I can't help you personally and I can't recall anybody here recently with a similar situation.

I could suggest you take a look at two groups that might offer some help The Carers Group and Supporting Someone with Incurable Cancer

I Hope you find what you are looking for and take care

Thank you Dani for your welcome, and responding to my message, it’s a strange one nobody can tell me or has experienced this in any sites or groups I’ve tried. It sounds like yours was something similar but in a different place and thank the lord you have been successfully treated. Stay safe x

Hi Pickles , I can't really add anything to what Dani has  already said, other than could you pass your concerns onto the Macmillan team maybe with her memory declining she may need a little more  help than she realises.

Sorry you've  found yourself on here but your friend is very lucky to have you in her life.

Please pop back on to forum when you need to,always someone willing to listen if help if we can.at some point in the day.  

Hazel

Hi Pickles

So sorry that you and your friend have found yourself in a very difficult situation. Your friend is so lucky to have you to help her.

I recently had a very frank discussion with my surgeon about what to expect if I have a recurrence of cancer in my mouth and what would occur if I did not have any more treatment.  This was prompted by the need for another biopsy after I have developed some new symptoms.

He was very up front with me speaking about how things would develop if untreated and how palliative care works. However he was very encouraging to me as he is certain that at this stage if I do develop more cancer that he can successfully treat it.

I needed to hear about it as I didn’t want to stick my head in the sand as I was weighing up the value of more treatment.  Unfortunately the worry of a cancer recurrence is always with you.

I am sorry to hear that your friend is palliative.

Could you speak to your friend’s doctor or one of the Macmillan nurses and have a frank discussion with them to help you understand how things might progress in the future to help you know what to expect and how to manage things.

Not an easy conversation but worthwhile to help you and your friend to cope with things.

Best wishes to you both at this difficult time.

Lyn

Hi Pickles 2020

I'm sorry to read of your friend's diagnosis - I do have some experience of providing palliative care for someone with jaw cancer.

My otherwise very healthy and active 93 year old father in law was diagnosed and given the same options as your friend.   The consultant who recommended the op suggested to my father in law that it would be a cure so he was very keen to go ahead with that option.  Unfortunately the tumour had wrapped itself around his carotid artery so although he went through the trauma of the op he wasn't cured.  He was fitted with a PEG and discharged into our care after 3 weeks in hospital.  At this point we weren't aware that the op hadn't been successful so we were caring for him on the understanding that he would eventually be able to return to independant living.  It therefore came as a terrible shock when the cancer began to reveal itself on his neck after only a few weeks.

I don't know whether the cancer spread any further through his body - there were no outward signs of it other than on his neck.  Fortunately a District Nurse regularly visited and dressed the area for us.

I'm pleased you have input from the GP, District Nurses and MacMillan nurses lined up as they will prove invaluable.  We had very little help and support so it was a struggle both physically and emotionally.  

As he deteriorated my father in law required 24 hour care.  He became very sleepy, confused and disorientated.  We would check on him through the night and a couple of times found him on the floor where he had tried to get up.

I don't know whether the plan is for your friend to go to a hospice towards the end or whether you plan to continue her care in her home.  If you plan to care for her at home then I can give you some more information as to what we experienced although I expect each case will be slightly different.

All the very best.

Linda x

Thank you Lyn, I hope everything works out for you, you are in my prayers.

Linda, thank you so much for the valuable information you have given me, please if it doesn’t upset and distress you could you send me updates on what is happening with your father in law, the person I am talking about is my mum, she is 73 years old, she was always a larger lady and the cancer has reduced her to 7 stone (at her last weigh in probably less now) she gets very confused about things and is always tried, which is expected, she also has random lumps on her wrist and arm, yesterday I noticed one on her shin to. I have lived with her for 11 wks now and even though I can see the cancer taking its toll, she still continues to putter about most days. Her pain is now bad and she is prescribed Zapain and morphine (which she refuses to take yet), around six wks ago she had a bad period where she didn’t get up, it became so bad I called her GP out, she was put on end of life, DNAR and statement of intent (all still ongoing). My main concern is what to expect, I have amazing support from the professionals, my husband and children, but I am here 24/7, your experience will help me so much by giving me some idea of what to expect, this will help me process it.

thanks

PS Linda mum will be staying at home

Hi Pickles

I'm more than happy to share my experience with you.  I'll send you a Friend Request so we can exchange personal messages as I wouldn't like to upset anyone else reading them.

Linda x

Hi Linda, I have accepted I think, new on here so please let me know if I’ve not done it correctly , thank you so much x