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

  • Hi Elona

    The mini mafia sound like they have been very busy lol, hope your ok and are not finding work to tiring, I know what you mean about work making you feel more normal I am actually missing it I got made redundant from debenhams in April so once I'm back to normal will be looking for a new job

    Went to lymphedema clinic on Wednesday and have lots of excesises and today went back today to get special plasters that help open capilarys had to do patch test first in case of allergys, hoping double chin will have vanished by the 10th as we are going to a wedding but think I'm expecting a miracle lol, we are off to Ludlow for medieval fare tomorrow back Monday so I'm quite excited

    Take care Allison xx

  • Hi Judy

    Hope you hubby are both well, how is is hearing my ear has been popping a lot and I think some hearing has come back. I noticed you are off to Chester for the weekend hope you have a wonderful time I don't live far from there and used to work there its a lovely place to visit and the Grosvenor is fab

    Have fun Allison xx

  • I meant to say your hubbys hearing think my brains gone to sleep lol xx

  • Hi,  his hearing is back to normal, he had it checked at the time with the audiologist but they said it was the same as his previous test then shortly after it went back to normal, we think his blocked saliva/parotid gland was probably responsible.

    Think we're in for a cold Chester weekend lol, but I don't mind as it will feel more xmassy and like you say it is a lovely place.  We only live an hour away from there also.
    Hope you have a great time at Ludlow, another lovely place, there's some great restaurants there too.

    also, just wanted to say, hubby has to do excercises for his lymphoedema, he's been doing them everyday for about a month now and you can really see a difference.


    Have fun

    Judy xx

     

  • Hi Judy

    Hope you had a lovely weekend and the weather didn't put you off, the medieval fayre was cancelled in Ludlow because the wind had caused so much damage which was disappointing but we still had a good time. Had the results from biopsy and they are clear so I'm cancer free

    Take care Allison xx

  •  Hi Elona

    Hope you are well and are managing to get enough breaks at work also get as much sleep as you can your body heals best when you sleep, all good with me the biopsy results were clear so massive relief can enjoy being cancer free now

    Take care Allison xx

  • That's wonderful news, I'm so happy for you, now you can relax and really enjoy this Xmas.

    we certainly picked the wrong weekend didn't we!  Fortunately we just had rain in Chester it was still really cold but the winds had died down.  Hubby had his thermals on Lol, he really feels the cold since his treatment, probably another long term side effect.

    Hope everyone has an amazing Xmas/new year.

    Judy xx

  • Morning

    Hope you are feeling ok and the medication side effects have settled, how are the hedgehogs doing I bet there all grown up and have been set free now. Just wanted to wish you a very happy Christmas I hope you haven't been to stressed getting ready for it I'm sure you will be cooking up a storm on Christmas day, try not to overdo things 

    Take care Allison xxx

  • Hi Judy

    Hope you and hubby are well just wanted to wish you a very merry Christmas hope you have a lovely time

    Take care Allison xxx

  • Thank you,  Everyone is good this end, just had a lovely couple of days in London for my sister in law's 60th birthday.  Hope you and your family have an amazing Xmas and a very healthy New Year 

    Judy xxx

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