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 Elona

    Hope you are ok and coping with the side effects of the medication they sound brutal, the Macmillan nurse chased up my pet scan results as I'm having a lot of pain in throat and ear and its shown something in throat she said we can be cautiously optimistic but feel like I'm not out of the woods yet. How are the hedgehogs doing is belvedene ok

    Allison xx

     

  • Hi Judy

    Hope you and hubby are well, the Macmillan nurse chased up my pet scan results and its flagged something in my throat she said it may be nothing but appt brought forward for another scope and possibly cameras down under anaesthetic, trying to be positive but my throats been so sore I can't help but worry

    Allison x

  • Hi Alli

    im sorry to hear you're still having problems, when is your next appt?  Your MRI was only 8 weeks ago and it was clear so although we all know only to well it's really hard, try not to worry too much.  
    As I said previously my husbands PET scan showed suspicious activity and he had to have an EBUS which is basically a scope which goes down the throat to the lungs and takes a biopsy, fortunately these were found to just be reactive nodes but it was a very worrying time.  
    I'll keep everything crossed for you, please keep in touch.

    thinking of you, take care x

    Judy

  • Hi Judy

    I know its never ending my appt has been brought forward the 10th November with oncologist and i have appt with ent to so hopefully it's good news and I can stop worrying all the time

    Take care 

    Allison xx

  • Hi Alli

     

    So sorry you are still having problems let hope it is little and nothing just time taking because you had really bad lymphadma. fingers crossed let me know how you get on, will be thinking of you. 

    thankfully anit emtics are helping stop me being sick and starting to eat again so thats good. the nausea is however an on going thing. Nurses hope once I get over the two months initial treatment and start the next lot i should not be so bad. 

    Belvedine is doing really well bless her and the four babies are too they are nearly ready to go but am unsure whether to release or not at moment as they are still inexpereinced and young. 

    keep faith girlie you can pull through this xx

  • Hi Elona

    The medication your on sounds awful I really hope it gets easier soon, are you still having to work as well. I bet its easy to get attached to the baby hedgehogs I'd want to keep them lol so glad belvedines doing well. I'm trying not to worry I was so relieved after the mri, just taking each day at a time and trying to do lots of nice things with family and seeing friends which has been lovely

    Take care of yourself

    Allison xx

  • Hi Aliison

    I think you are being amazingly brave and glad your able to keep yourself occupied as we have said many times the waiting is the worst. fingers crosed. 

    have been off work but due to no money have to go back monday. dreading it. 

    going to try and have some fun if possible thibnzs weekend but vaccines tomorrow booster covid and flu then dekivery  o we shall see. 

    there is apparently a diet called inflammation diet - maybe somethging worth you looking at?? keep thinking of looking at too is supposed to help with our conditions. 

    try to enjoy yourself this weekend xx

     

  • Hi Alli

    Hubby has had a letter this morning from Oncology stating that because he has recently had chemo/radiotherapy for cancer he needs to have an extra third covid vaccination followed by his booster! 
    He's already had his booster jab so we are a bit confused Lol, I'm going to ring them on Monday for clarification but just wondered if you had been given this information? 
     

    Thanks

  • Hi Judy

    No have not heard anything I had my second jab 21st of June so thought I would call gp tomorrow about booster, will let you know what they say  sounds hope its just the one lol

    Have a good weekend

    Allison xx

  • Morning Elona

    Hope your having a good weekend its hard to be enthusiastic when you feel sick all the time hope it wears off soon, is there any benefits you could get so you could stay off until your better. I don't feel very brave but I'm still smiling just lol 

    Allison xx