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
  • H

    Had results today from biopsy on tonsil and now know its cancer, its all been really quick what with scans and hospital visits so not really had time to think about it now it's just starting to sink in but I'm pretty positive, I'm told its spread to a lymph node has anyone else had this 

  • HiAli

    I am sorry to hear your diagnosis, but the first thing I would say is there is always hope. Al my friend here has the same and is currently undergoing all the treatment. He is having a six week course of radiotherapy and chemotherapy over most of the week meaning daily trips. The first thing they have to do is make sure you have no teeth that will get corroded by treatment so need removing first,. They then measure you for the mask this apparently is quite comfortable. They then arrrange the neginnings of the treatment. It will not be easy so you will need a good support system around you - family, macmillans, friends especially when you have down days. Some people loose taste buds during treatment some can find swallowing hard but if you look back on our talks there are mouth exeercises to do. 

    Find all the exciting food things you love that are highly flacoured and stock up you will need to keep your weight up and need things that are exciting to make you smile. 

    good luck i am here is you want to talk. 

    stay strong x

  • Well Al its wednesday and iam keeping myself out of mischief this morning with a seminar to listen to on animal behaviour and pain should be interesting. 

    my sheep sheared dog got a little cold last night - he had had baby cut so i had to cover him in my dressing gown bless him - flet a pange of guilt! 

    sun is shinning and for the first time this spring say the blue *** in my garden - they nest in a box yearly or have so hoping they will do again this year. was gorgeous. 

    no news yet

    was frustrated last night someone used my card and i tried to phone bank took 4 hours to get through for a stupid man to say sorry cannot hear you and put the phone down!!!!! was not amused. trying again this morning. 

    stay strong and cheerful xx 

  • lovely sun is shinning birds are singing brings joy to your heart. Relax and forget the strife and listen to spring where there is new life there is hope for everyone. 

    no matter what happens to you there is always someone worse off that means there is always light at the end of the tunnel. 

    Al your session is nearly over hope it has gone to plan and you can come back and let me know. here evry day trying to cheer you up with a smile or a word - might be rubbish at it but the thought is there lol. 

    pedro has gone to his brothers for the day and night he will have loads of fun so am planning to get into front garden for a short while to get my vitamin concentration up! will be phoning and pestering the doctors next week. also must test blood pressure have not done that yet always put on dreading things lol.

    well stay safe and eat well all, 

    keep strong and have faith 

Reply
  • lovely sun is shinning birds are singing brings joy to your heart. Relax and forget the strife and listen to spring where there is new life there is hope for everyone. 

    no matter what happens to you there is always someone worse off that means there is always light at the end of the tunnel. 

    Al your session is nearly over hope it has gone to plan and you can come back and let me know. here evry day trying to cheer you up with a smile or a word - might be rubbish at it but the thought is there lol. 

    pedro has gone to his brothers for the day and night he will have loads of fun so am planning to get into front garden for a short while to get my vitamin concentration up! will be phoning and pestering the doctors next week. also must test blood pressure have not done that yet always put on dreading things lol.

    well stay safe and eat well all, 

    keep strong and have faith 

Children
No Data