Tonsil Cancer - Whirlwind Week

Hi All 

Firstly Hats Off to the NHS in Wales, they have been super amazing since my diagnosis on New Years Eve. Thank you all 

The title of the post is Whirlwind Week and this is why:

New Years Eve I have a phone call from ENT confirming tonsil cancer.  Very apologetic confirmed over the phone.  Wants me in for a biopsy.   Later the same day I get calls from ward team and covid test centre booking appointments.

Monday 4th January i have a covid test at 9.30am. Results back same day, negative for Covid19.  On route to test centre call from pre assessment team asking me to go in straight after my covid test for my biopsy pre assessment.   Forgot to mention biopsy booked for 7th January. 

Tuesday 5th January have an ultrasound at 9.30am and an MRI ar 11.00am.  The ultrasound was an external ultrasound of my neck. They decided to take two needle biopsies of lymph nodes which took some doing as the nodes were so solid they couldn't get needle in... Thank goodness for local anesthetic :)

From ultrasound they decided to send me for a 3d scan of my jaw.  This was done primarily in case I need any teeth removed pre radiotherapy treatment.  Apparently radiotherapy can cause your back teeth to crumble.  Don't panic not everyone has this done.  i believe it totally depends on size, position of tumour and the amount of radiotherapy you need.

After the jaw scan I went straight for my MRI.  Think I  had two 10 minute sessions,  the second 10 with dye injected into my blood.  I had also had this done for a CT scan on 18th December.

Wednesday 6th January day off.  Which I used to eat as many nice things as possible :)

Thursday 7th January 07.30am its minus 4 degrees c and I'm back at the hospital with my overnight bag ready for another biopsy, I was told to expect to be in hospital overnight.  Due to covid we have to wait at the entrance.  Just 3 of us, asked lots of covid related questions and temperature checked before being escorted to the clean ward.

The ENT surgeon comes to see me to explain the procedure.  Remember everyone is different.   So for me they are going to remove the good tonsil and send it for tests.  What? Not the bad tonsil?  The reason for this is because when you have cancer in one tonsil it is pretty much a done deal that you will get itin the other.   Also by leaving the cancerous tonsil in it allows for more treatment options.  If they cut it out there will only be one treatment path.

During the tonsillectomy they also took biopsies of my bad tonsil and my tongue.   After the op ENT told me that it would take about 7 days for the results so they expect to be calling my Wife and I in a week on Wednesday. 

I was allowed to go home as long as I had eaten something, drunk something and had a pee.  I was home by 7pm the same day.

Sunday 10th January its 6am and I am sat in bed writing this post.  Next to me is a glass of water which I sip all night, my 6am pills and a lip balm.  My bottom lip took a battering during surgery and is very swollen and sore.   The cancerous side of my throat and shoulder is still painful and the right side is even more painful from the tonsillectomy.  Even my lymph nodes seem to be complaining  :)

But you know what, I don't feel sorry for myself,  I don't feel sad.  I'm going to lose weight, but hey I'm 5ft 6inch and 13 and a half stone (male) i could do with shedding a few pounds ;) 

I know this is just the start of a long hard journey,  but I'm ready... bring it on I say!

Parents
  • Just come across this post.  I'm in pre diagnosis. I only went down for antibiotics last Thursday.  Since then I've spoken to the GP more times than I have in years.  Pelvic ultrasound, abdominal ultrasound. ECG abd x rays.  Now waiting for 2 week refer.  I'm not sure I feel as stomg as you at the moment but thank you for inspiring post. 

Reply
  • Just come across this post.  I'm in pre diagnosis. I only went down for antibiotics last Thursday.  Since then I've spoken to the GP more times than I have in years.  Pelvic ultrasound, abdominal ultrasound. ECG abd x rays.  Now waiting for 2 week refer.  I'm not sure I feel as stomg as you at the moment but thank you for inspiring post. 

Children
  • Hi Clarke's

    Just noticed your post hope your ok yes its definitely a whirlwind of appointments, you havnt put what your problem is but try not to worry which is hard to say I know I have tonsil cancer that's spread to lymph node and will be starting chemo radiation soon, good luck and hope all is well with you 

    Take care Alli x

     

  • Hi clarkes0812

    Welcome to the thread :happy:

    It is a whirlwind at your stage, hence the title of the thread.  The best advice I was given was to 'take each day at a time'.  If you let it your mind will explode with all that is going on right now.  At least you are on the fast track 2 week referal.  The waiting is no doubt some of the most difficult times during the whole process.  Try not to think about it too much, try to fill your time with things that make you happy.

    There is a strength to be had and you will find it, it's amazing what the body can muster up.  But also we all have our days where we question our strength, it is only human.

    Please keep us updated on your journey, feel free to post at anytime.  You can post on here about anything you like.  We're here even if you just want to let off steam.

    Be postitive, stay strong (you are  stronger than you realise)

    Al