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!

  • Hi Sam

    So glad to hear from you and so happy to hear that since stopping the tablets you have been brighter and eating better. You will need to maintain that weight so eating is important. Stock up on all those favourites! 

    It is always scary when you have to do something new to yourself. People would probably say that due to your job you should be used to surprises with the never knowing what to expect but I think it is always different when it is yourself involved. When I went through my tests my blood pressure rocked lol and I freeze!! they tell me iam a good patient its because iam petrified lol. I shall be nervous when i get the next lot of appointments! 

    Definately enjoy your hobby. It is important to have something to make you smile as well as family. I have a policy to do one thing each day have mentioned it before but it works for me otherwise i wouldnt bother but it can be difficult to get motivated. I love gardening and painting but have not done either recently so i have done a job around the house instead that has needed to be done like painting a skirting board - not exactly a wow but it gives satisfaction when done. 

    Let us know how you get on with mask fitting etc. Al says it is quite comfortable. 

    take care 

    x

  • Hi Elona

    So sorry I've been so quiet,  I knew you would worry.   But still I did not have the wherewithal to let you know l was OK.  

    I was having a glitch, a kink in the path.  Trouble with this 'c' thingy is it constantly throws curve balls at you.   And its not like you can practice,  get it wrong and then get it right next time :happy:

    So happy that you're food is becoming much more varied,  and Curry Yum!  Food is very important for happiness.  Happy belly, happy brain.  Happy brain, happy wife.  Happy wife, happy life :happy:

    I too think that when the time comes it'll be Kormas for me.  Although have you tried Butter Chiken?

    I have all but lost my sense of taste now.   Not is all lost though, my absolutely amazing wife and I (I do have her permission to take some credit lol) are testing out a method of still attaining some pleasure from food without the need of taste buds.  Its kind of  worked the last couple of days, if it works again today I will reveal all.

    I know how to keep the suspence haha!

    Radiochemo, 2 weeks down 4 to go.  Unexpectedly its the chemo I'm finding harder than the radio at the mo.  But I have been informed that that will change lol.  

    Watched a beautiful frosty sunrise over the mountains this morning,  from the centrally heated comfort of my living room I might add.  Now its gone dull... boo!

    Hope the weather is brighter in the East.

    Al

     

  • Hi Al

    so glad I got your reply as yes have been thinking about you. 

    My motto - take one day at a time. an old favourite and one thats true. after all we never know whats round the corner. - hope! 

    i hate suspense!!!!!!

    telll meeeeeeeeee!

    thick frost last night could not believe it thought we were entering spring hmmm .... blowing bubbles.....

    dull today too but suits am very tired. 

    glad your telling your wife how amazing she is. Behind a great person is a greater person! 

    stay smiling 

  • apparently someone wrot that a spoonful of sesame oil before eating helps taste buds and this person had recovered taste after a few days ???? dont know if thats worth a try x

  • checking hoping your ok 

    had to get the charity to take my hedgehogs as have not got the energy to look after them at the moment seems strange outside now. 

    Rodney is still on rat protrol though looking out the window lol. 

    Pedro is disgusted with me cant sleep got over tired so watching most haunted - love a ghostie and writing this. i have had the evil eye  dispite the fact he is sprawled all over my bed leaving me very little room for manoeuvre. 

    new sloppy food - smash and mushroom cuppa soup mixed together quite nice lol. love cooking but no interest today, thankfully the hubby didnt mind. 

    keep smiling 

  • hi the sun is shinning get some rays if possible and soak up those vitamins. 

    hope all going ok. x

     

    lymph node being pain today, sore, red and uncomfortable,. did some painting but cant be arsed!!! good job i make myself do one thing a day or i would not bother. 

  • hi 

    hope everything is going ok. still waiting on my referral to respiratory clinic. apparently my diagnosis is necrotising granulomatous inflammation - what a mouthful!! basically means my body is killing itself lol i have had something harmful and the body has tried to but failed to get rid of it so its causing the tissues to die. thats why i had to have my tonsil removed. 

    well rainy day today what joys but thankfully the dogs are giving me a few minutes peace and quiet. the hubby is having a snooze - i should try that - but still dont find it easy. pottering this morning now come over tired so doing zilch! i hope the same is with you. 

    so exciting yesterday i won £10 on the postcode lottery lol i was thrilled havent won anything before!! 

    well Al your half way through arent you three weeks so the light must be showing at the end of the tunnel, rest easy 

    Sam hope your doing ok

    take care 

  • Hi sorry to jump on this post but it seems like your all going through what the docs think I have. In a 36 year old Female

    I have a widening of the base of my tongue a swollen tonsil with growths on and a lump inside my throat  all found on a ct scan for something else. Two weeks ago.

    I had an urgent E.N.T last Monday was great he said he wasnt a 100% but it was highly likely it was cancer.

    Yesterday pre op on phone

    Today pre op in hospital ecg bloods Mrsa swabs etc etc

    Sunday covid test

     Next Tuesday 16th panendoscopy and biopsy in getting put to sleep.

     

    Do you guys know the recovery time like eating etc as I have a teenager at home who I need to look after

    Thanks c

  • Hi C

    Even though my results are now going down a slightly different route i went through all the same tests. It is incredibly worrying but you have to remain positive until you get the final results. Good luck. x

    As for eating well your mouth will be sore and even though the consultants say try and eat normally it is not easy. I ended up with the panenscopy and tonsilectomy and that was incredibaly painful for nearly three weeks. Ice packs are ideal!!! A biopsy should get over quicker. 

    soft food is a must you can eat but it tends to be easier to have softer food available, - ice cream that is left to sliughtly defrost for a five mins before eating as Al put in one of our blogs, wotsits are great they melt in the mouth - i am still eating them!! soups, smash, cauliflower cheese, what you can eat will vary on what you like and how your mouth feels. Nothing spicy though that can irritate and cause upset. 

    if you want to ask anything please do we are here for you. 

  • Thank you so much for your reply I feel totally alone in all this it nice to know there are real people going through the same thing