Hi everyone. I was diagnosed with squamous cell carcinoma back in March.
I went to the doctor thinking I had a thyroid Issue. I was tired, loosing weight and either freezing cold or boiling hot and i had a swollen lymph node in my neck.
After tests and scans the cancer of head and neck was diagnosed.
The cancer in the lymph node is secondary so had the find the primary. A PET scan showed possibly tonsils is the primary but cancer has spread to the base of the tongue and throat. Also a lesion on my lung but that's being left for another 6 weeks to have another scan.
MDT meeting 19th April so I will have all the results and treatment plan then. UCLH appointment booked for that day.
I had surgery on the 6th April to remove tonsils, some of the base of the tongue and some of my throat.
I'm now on day 8 after surgery and the pain is excruciating.
I haven't slept at all as my mouth dries which then causes pain that is unbearable.
Has anyone else had this surgery that can please help me with this pain? I'm on medication every 3 hours which takes the edge off. I pace up and down all night as I can't lie down.
I can't eat much at all, I'm sipping water to keep hydrated.
My husband is as good as gold but is annoyed that I'm not eating as I've lost 1 and half stone and in a couple of months and he is worried for the next stage I won't be strong enough
The surgeon told me before and after surgery that the recovery will be extremely painful for 2 weeks. I can't see this getting better and am loosing my mind.
Thing is I was told I would be offered chemoradition as the next step of treatment. If I can't cope with this there is no way I can cope with chemoradition.
I'm feeling so useless and I'm letting everyone down as I can't keep my tears inside. I'm so so tired that I often talk rubbish and don't even know I'm saying anything. At 4am I was pacing the room holding my head, crying and trying to sip water.
My poor daughter is seeing me like this and it's rubbish.
Sorry I must sound like a child but I'm desperate for some help.
I know it's just a healing process that I have to get on with.
Thank you for letting me rant
Hi Warrior1 and welcome to the Online Community but I am sorry to hear about your diagnoses.
The cancer journey can be such a stressful and challenging time but reaching out to the community will give you the opportunity to ask questions and getting support from others who are navigating the ‘exact’ same journey.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend consider joining our supportive Head and neck cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To join a group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post. You can also scroll through other members posts and click “Reply” to get involved.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help.
