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

    That's not good Elona hope your feeling better, what will happen now about your treatment hope they sort things out soon it's making you really poorly, I can't believe how cruel people can be to hurt animals like that unfortunately in your job you probably see a lot of it. Finally got phone appt with oncologist its tomorrow 10.30 so will know what's ahead with a bit of luck, had a lovely day at mums and the weather was glorious so we sat outside for hours my eldest daughter came as well who I hadn't seen for months,and have just spent a lovely couple of  hours chatting to my friend in the garden so think I have well and truly topped up my vitamin d. Hope your ok Al and you had a lovely day Sunday 

    Have a lovely day

    Alli x

  • Hi Al 

    Glad your ok I'm a message behind again story of my life lol, my son has helped my navigate this a bit but I'm still rubbish but have managed to send friend requests, it sounds like you had a lovely day with your friends and as things get back to normal you can have lots more, that sounds like a lot of pets and the names are fab I may be wrong but someone told me once that poptyping was Welsh for microwave I think they were kidding, I don't have any pets now we had a cat misty that was my mum's, she got depressed when mum got another cat so we took her she was lovely but she started getting nose bleeds and couldnt breath properly  and vets couldn't figure out what was wrong she got really poorly and had to be put to sleep she was 13, my daughter has just got 2 guinea pigs called Ben and Jerry and there so cute

    Alli x

  • Popty Ping is indeed a Welsh word for Microwave :laugh:  

  • Haha I thought they were pulling my leg, I think i will use that name from now on its so much better than microwave 

    Alli x

  • lol I love that name too!!!!!

  • morning 

    bit dull this morning but not too bad. 

    hahaha to eurovision!!! the hubby as a true rocker and metal head absolutely detests the veurovision, howver, there was a take off on you tube last year that was absolutely brilliant. i find the original amusing at times but the scoring too long drawn out. i dont think though i have actually watched one all the way through! 

    Al will look out for that film. thanks. told hubby name of microwave and he thought it was brilliant!

    hubby is having second covid jab friday - we are hoping they will be able to do mine too. At least that will be oned thing done then. 

    Alli good luck with the mdt phone call. 

    bit disappointed with some of my plug plants but then surpose thats always the risk you get with offers. the plugs were so tiny the journey did not help so think will loose half of them. some of the geraniums ding well, so keep hoping. have now got 5 butternut squash plants so really pleased. they obviously just needed a good tallking too!

    Al love your pets names and Alli your girls guinea pigs! 

    i have two hens celeste and cecilly who live with sir reggie perrin. five koi carp two originals were named susies spirit and sharras soul. 6 cats rum tum tugger, rolo lee haggis, rumpleteazer, rodney, stanzia, rasputin, 2 dogs pedro and shugs and an african grey socrates. most have come from work lol never work at a vetslol. like Al we have to say no more at moment cannot go back to ten cats like we were two years ago!!! they all have amazing stories but are all wonderfully affectionate. thesevare my family!

    having another restfukl day, hope you all have a good day

    enjoy your days keep smiling

    x

     

  • Hello

    Sun is struggling to come out and a bit cooler today here, will have to stay out of Sun today as my face got a bit burnt after sitting out yesterday kept thinking I was having a hot flush till I looked in mirror lol. Hope you are feeling better today Elona you and Al are so lovely to take care of so many pets I love all the names you have for them. Had my phone appt off the oncologist and he explained I would have 30 sessions of radiation over 6wks you were right Al and 2 sessions of chemo, he said they do either 2 big doses or 6 smaller ones so they have gone with the 2 doses for me, I will be going in the next week or so for scan and mask fitting and to see dentist I think all in one day, he mentioned about feeding tube and said I might be better getting it fitted in the beginning did they discuss that with you Al ?  he also said that I have a 70 to 80 percent chance of beating it so feeling very positive. 

    Just filled the bird table with goodies so will sit with cuppa and wait for feathered visitors 

    Have a great day

    All I x

  • MOrning 

    lovely here too thats good. 

    Alli glad you have had your chat sounds really positive and thats great just got to remember when you feel down to have something to remind yourself of the positiivity that there is that lovely light at the end of the tunnel with lots of hope. 

    thank you am feeling better today as Al says you have up and down days well i do too! now furloughed until end May so dont need to worry about work, one relief of my mind. 

    I like to write all sorts of things here, the animals, the birds etc because although this is for everyone to share expereinces and we do it is I also feel a place of hope and to make peopple smile a welcome distraction in the hard times people go through. so if i can make people smile and give. little distraction i have helped. (i hope). 

    The mini mafia has been spotted down the garden so the banners are out - declaration of war is being discussed in the war room of the bungalow and plans are being drawn to expel them from the garden - humanely! may involve cementing more holes and barracading. 

    some light painint today i think and going to make an indian for tomorrow. Cant eat spicy food like i used to which is a shame but then sometimes you get more taste without too much spice anyway. Have not tried butter chicken AL like you suggested but am allergic to cream so have to be a it careful, will have a look at the recipe. -oh and will look up that film you suggested. 

    enjoy the sun today and get rest

    keep smiling x

  • Hi Al

    Was wondering did they give you a full body scan pre treatment or just head and neck

    Alli x

  • Hello

    It's been a massive help being able to come on here and listen to all the lovely positive things you say its been a godsend, I look forward to reading about what all the animals are like and the mini mafia, I think your hubby will miss making up the stories about them when they go lol maybe you could get him to write the stories down would make great children's books. Had my appt date its Tuesday apparently it's for dentist scan and mask fitting so a busy day I'm getting transport from them as I don't drive and Gary's in work so I don't have to worry, so looks like the balls rolling now also had pack in post about treatment the chemo I'm having is called Carboplatin. Hope your ok Al and feeling better each day I didn't ask did you lose your hair, can't say I'm that worried you can get some amazing wigs and I would save a fortune on shampoo lol. Good news about being furloughed Elona that means you can concentrate on getting well and not have to worry about work

    Hope you have a lovely day in the sun

    Alli x

     

Reply
  • Hello

    It's been a massive help being able to come on here and listen to all the lovely positive things you say its been a godsend, I look forward to reading about what all the animals are like and the mini mafia, I think your hubby will miss making up the stories about them when they go lol maybe you could get him to write the stories down would make great children's books. Had my appt date its Tuesday apparently it's for dentist scan and mask fitting so a busy day I'm getting transport from them as I don't drive and Gary's in work so I don't have to worry, so looks like the balls rolling now also had pack in post about treatment the chemo I'm having is called Carboplatin. Hope your ok Al and feeling better each day I didn't ask did you lose your hair, can't say I'm that worried you can get some amazing wigs and I would save a fortune on shampoo lol. Good news about being furloughed Elona that means you can concentrate on getting well and not have to worry about work

    Hope you have a lovely day in the sun

    Alli x

     

Children
No Data