Hello, my grandfather has been diagnosed with vocal cord cancer and has been told that given his age and health, he will be receiving palliative radiotherapy instead of the full dosage and Will most likely pass within the year.
Before hearing his prognosis he was brought into hospital and given a tracheostomy and a rig tube for feeding himself. Initially we were told that these procedures would be temporary but following his last appointment with the consultant where he was told that they wouldn't be able to cure him, they have now said that the tracheostomy will stay in for the remainder of his life.
I'm looking for some advise here, as we feel very lost about everything that is happening. Originally, he was brought into hospital for the procedures and told he could go home (he lives alone) once he was trained. However, now we are being told he can't go home alone and will need to either go to a care home or move home with us. We brought this up to him and he seemed shocked that he wouldn't be able to go home alone. Should there be a medical person talking about this stuff with him?
If anyone has any advise or knows how we can make this process easier for him and us that would be amazing. It is a horrible moment anyway, but especially horrible when he doesn't know what is going on.
Last thing actually, anyone know how to get a macmillan nurse????
Last thing actually, anyone know how to get a macmillan nurse????
Hi. I thought I’d answer this first then try to help with the rest.
Cancer centres have clinical nurse specialists CNS. These are trained in cancer care. SOME are sponsored by MacMillan but some aren’t. It’s just a name.
Your grandfather will have a nominated CNS. Ask at the hospital
If your father is now receiving palliative care it might be time to see if Marie Curie care is available in your area when the time comes.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
However, now we are being told he can't go home alone and will need to either go to a care home or move home with us. We brought this up to him and he seemed shocked that he wouldn't be able to go home alone. Should there be a medical person talking about this stuff with him?
Yes the hospital should be and should be arranging some sort of care package if he can’t go home.
If you can have him with you then you have to be taught how to look after him by the hospital staff.
Next time you visit arrange an appointment to discuss all this with his clinical team.
Im so sorry you have been left in limbo like this.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Either the hospital or your grandads GP can arrange visits from a palliative care team too. Another thing to discuss at the hospital.
Meanwhile give the MacMillan support line a ring. The number us at the bottom of this post
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening, Im sorry to hear about your grandfather, in normal circumstances he should be entitled to help and care and it should all be explained to him and maybe a family member as it is a lot to take in and deal with although the PEG is fairly straight forward where you might find it easier for him to be pump fed twice a day rather than using a syringe. I have been a neck breather since having my voicebox removed in 2010 and have not had any issues but it all takes time to adapt to the PEG and tracheostomy, hopefully, he will get the support and care he needs during this difficult period. He should also be seen by a speech and language therapist as well as a dietician, wishing you and your grandfather all the best, and take care.
Chris x
Its sometimes not easy but its worth it !
