I attended a biopsy as an outpatient on the base of my tongue at the hospital on the 24th August, which quickly turned into an emergency tracheostomy, and a two day stint in icu and then transferred to the ENT ward. During that time, I have found things very confusing. The result of the biopsy was a stage 2 cancer at the base of my tongue and nodes both left and right of the throat. I was fed through a nasal feed line but in due course had a stomach feed rig inserted - oh my days!
long story short, i was discharged the 9th September, with the view to start chemo/radiotherapy for 6 weeks on the 26th october, with feed bottles and an overnight bag feed with a list of medications to take at various times of the day. and whilst my partner was very encouraging whilst i was inhospital, he is totally overwhelmed.
and i am becoming increasing concerned and now i feel very alone and very unsafe and feel sick with worry.
I am incredibly body exhausted and dont know who i can turn to for help and support in what is commonly known as a 'dead zone' where i live. The community nurse who apparently covers 2 or 3 counties will visit on the 22nd october.
until them, i am concerned that i may be dead before then due to not having hte inhome care
i just don't know where to turn to for help
please can someone signpost me somewhere or help me call/visit the places/people i need to be. bearing in mind, i can walk less than 5 minites without becoming physically exhausted.
Add in T1 Diabetes.
due to the trach and feeding rig, few in my social circle could be trusted as i don't have the energy to teach them
Hello Tudzie
A warm welcome to the online Community although I am so sorry to find you joining us under these circumstances.
The Community is divided up into cancer specific groups and to "meet" others in the same or similar circumstances I would suggest you join our head and neck group - here's the link you need:
Once you click on the link I have provided and the page opens up, click on "join" on the black banner at the bottom of the page. Once you have joined the group you can introduce yourself in the "New here - say hello" section. You could copy and paste or repost your post from above.
As to your other issues I would advise you to call our Support Line on 0808 808 00 00 (8am to pm 7 days a week) who should be able to point you in the right direction for the help you need.
If you need any further help in navigating the Community please do get back to me.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
