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 see you have met another friend Bobby that is good - great to have as many friends as possible to discuss things with. 

    Turned out my day is one problem after another lol - that is because i was expecting a day of fun hahaha should have guessed - anyway have no sorted out the problems and await my zoom talk. 

    boy it is perishing cold outside took Pedro to the field and saw a metal detector looking for bits and pieces = cant say i was hugely impressed the only thing that interested me was a tiny farthing coin. Pedro just sat down and patiently waited he was not impressedd either! we wont bother in investing then he said he just keeps everything to himself so i was a bit peeved as the owner had stopped us walking on the field but then said he could dig it up and keep the findings - something does not compute perhaps she does not like our dogs? 

    going to be frosty tonight and cold again tomorrow that will be fun the neighbours want us round for the outdoor barbeque with me in PPE lol wrap up warm me thinks! 

    caught the two fatty pigeons havning ruckus in the hedge - more interesting than my measly seeds i think at the moment. 

    have good evening 

    smile and stay strong x

  • Yay the sun is shinning and what a wonderful surprise to hear from Al so thrilled to bits. 

    Alli hope your having a good sunday.

    Hoping the sun is not to deceptive since we are suposed to be going next door for a BBQ the first time me and hubby have been out except for doctros etc since Christmas and even if it is next door it will be nice. Still a bit dubious about meeting people incase i could be infectious, but it is outside so should be ok. 

    think i over did it yesterday had a headache all night so that made me a bit hypertenisve this morning - am suposed to be testing for a week twice a day already forgot last night and only 2 days ion lol - useless!!! so i am sitting in bed writing this with morning cuppa recovering before i get up and guess what a huge fat pigeon has arrived lol.they maybe vermin but they are quite handsome. I am surprised he did not knock over the bird table when he landed! He is now stuffing his face - good. 

    The nintendo arrived yesterday with the ring game - totally extravagence when we really could use the money on more sensible things like a skip, house etc but it  has already brought abig smile to the hubby and that is good to see him interested in something. i wanted the ring because i need to try and get some excersices done and refuse to do them to stupid people telling me to do this that and the other when i physically cannot so as this is moving the ring to do an adventure game i am hoping i can get round some of the moves with this! should be hilariously funny watching me try. I must at this point mention I have spinal stenosis in my lumbar vertebrae due to herniated disc i did at work years ago and arthritic hips, hands lol bit of a crock really lol. 

    job fir this morning if i can manage is to get the cd shelving unit made hmm maybe a tomorrow job. 

    well enjoy the sun and keep smiling and stay strong x

     

     

     

  • Morning

    Hope you are feeling well today, sounds like your neighbours are a bit mean never mind you might get the last laugh if the metal detectors dig up a Roman haul or something and they have said they can keep it, how did the barbeque go hope you didn't get frostbite it was chilly yesterday just realised I said Nintendo wi and it was a switch you said my brains turning to mush I keep blaming the menopause lol, all ok my partner Gary brought me a bird table yesterday so I'm quite excited as we are going out later to buy tasty treats that will hopefully tempt the wildlife, I was looking up tonsils cancer with hpv and Bobby popped up so can ask about treatments and stuff unfortunately he has had to have more lymph nodes removed as its spread a bit so hoping he gets the all clear now, have you anything nice planned today hope you have a good day

    Alli x

  • Hi

    Sorry was a message behind and was answering yesterday's thought barbeque was yesterday told you brain is rubbish, hope bbq goes well but wrap up is Al ok I can't get back on there to see how his treatment went hope he is ok still trying to navigate this website pretty much just answering messages that pop up on my emails ill get the gist eventually lol x

  • Hi

    Alli know about the menopause lol have gone throughthat early for various reasons but have only just started with some hot flushes lol typical! 

    glad to hear Alli you have a bird table you will have to let me know what you attract so kind of Gary. Sounds like you have a good guy there. 

    As I said brilliant to have more friends who have similar things but you have to remember each persons treatment will be slightly different and you will all react in different ways. Al is ok thanks for asking he will be pleased you asked and will no doubt tell all about his treatement etc when he is able to get back on here. I thought your lump was base of tongue not tonsil? or was i having a moment too??? 

    So funny weather looked lovely this afternoon so we went next door with the idea that the BBQ would be nice and not too cold - heater on and a firepit looked good food cooking away nicely and all going fine enjoying it until the clouds came over and the sky darkened then suddenly hail storm!!! we courageously stayed put for about 20 minutes before beating retreat into their conservatory! 

    it was a good relief from building the cd shelving unit that heard a lot of swearing! rubbish design and rubbish fittings too fiddly shelves would not stay together easily an utter nightmare!!! will not get a good review from me thats for sure. poor hubby he had a moujthful from a stressed me! and i then had to eat something because i felt sick afterwards. however, it does look nice and will look better when i remove the excess glue i had to use to help attach indiviudal pigeon hole units. iam glad it is done and dusted. i think i could have lived up to the ideal true menopausal woman!! 

    hubby and i have decided nothing tomorrow we need to rest. 

    Al rest well

    Alli stay strong and dont think about the meeting any more until you need to. Enjoy the bird table.

    keep smiling x

  • the sun is shinning again today yay the fat pigeons have been about lol. Am curled up with the dogs and cats having preverbial cuppa and taking it easy as i was up all night so am really tired now,. poor hubby got him up several times too, will make it up to him with a game later. 

    Al hope you can enjoy some of the sun

    Alli hope the bird table is set up for you to enjoy.

    have a good day keep smiling and stay strong x

  • Hi

    Hope your having a nice stress free day today I'm very impressed that you did the CD unit well done I have to get my daughter to help whenever we have to do flat pack the instructions are double Dutch to me, sorry the bbq was a bit of a wash out the joys of British weather eh still its nice to do something different, after the camera last week they found the tumour has gone from my tonsil into lymph node and attached itself to my jaw so chemoradiation I think will know we'd after mdt meeting, spoke to my gp this morning and he said it looks positive as I'm in good health so fingers crossed, Gary's lovely we don't live together but have been a couple for 15 years he's been a star keeps buying me goodies to keep me eating which I'm not sure is a good thing lol, I think the bird table might be a bit close to the house as like you just a wood pigeon that kept sliding down the side until it realised it had to get inside to get the goodies so will move it later as have little hooks to put on to put the hangy things with seed in on, how's the Nintendo going hope its fun 

    Have a fab day

    Alli x

  • Good morning All

    Its so good to be back out of the rabbit hole that I fell into :)

    And what is even better is to come back and find that this thread is running stronger than ever!  Thank you Elona for your time, thoughtfullness and strength in keeping this thread live.  Your messages have been a saviour to me.  It's great to come back and find so many amazing people on here.

    I will run back through the thread and introduce myself and catch up with everyone over the next couple of days, so much to read!  And of course bring the blog up to date....  So much to do!  So much has happened over the last 4/5 weeks.  It's amazing to see so much positivity.

    Right I am off to do some much needed work on the blog.

    Everybody stay strong, be positive :)

    Al' x

  • Hi All

    Just reading back through the last couple of days threads and noticed  Wood Pigeons mentioned, I had a big fat Wood Pigeon visit me out in the garden yesterday.  Never before have we had one in the garden, but he/she came right up close...  Must be a sign :)

  • Hi Alli

    I'm Al' (Dragon Fach), Just thought that I would quickly introduce myself :)

    I have/had a T2 tonsil cancer, (Spread to local tissue and nodes) I say have/had as I have just finished 6 week radiochemo treatment and I won't know how much the treatment has worked for four months.  Four months is the time they leave it after treatment here (South Wales) before they give you a PET Scan to see if the treatment has worked, so back to the waiting game :(

    Pre treatment I had many scans and biopsys, I had an op to remove my good tonsil (more biopsys) and 6 teeth removed.  I was confirmed with cancer on New Years Eve 2020 and my treatment, including all pre treatment finished on the 4th April 2021.  So all in all it took 4 months.  Having the teeth removed did delay the start of radiochemo by two weeks.  Also my treatment should have finished on Good Friday, but I was taken ill two days before the end and had to spend 5 days in the cancer hospital.

    I went through theradiochemo virtually pain free compared to many.  However I did suffer with depression, hence falling down a rabbit hole.  They put the depression down to an underlying health condition which affects my nervous system.  The worst thing I had and still have is the total loss of taste which stopped me eating.  I lost a lot of weight very quickly due to this.  I am feeding using an NG Tube and can drink only water, this has been going on for three and a half weeks now.  This is all down to my loss of taste.. Though many that know me would say I never had any taste to begin with :laugh:  Not everyone loses all of their taste.

    I've learned a lot over these last months, so if I can be of any help I'm here.  Everybodys journey is different, but in many ways also the same.  As the wonderful Elona has shown, you are never alone.

    It's now 9:40am and time for my morning medicine regime.

    Stay strong, be positive

    Al' x