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

  • morning, 

    apologise if writing gets a bit dyslexic looking but have woken up feeling really dizzy got up at 4am with the world spinning so much quite scary and is still abit yuck. Bed day me thinks lol. Ecuse not to do anything anyway. 

    Love Softlad what a wonderful name and how original. Cats are my first love i ahve always had them i currently have six and they have theor own individual characters. Rum Tum Tugger has just jumped of my lap he is one of my bengal cats and named after tS elliott cherico cats. full of mischief and amazing. the three of them were picked up from kids that werere throwing them at brick walls so Rolo Lee Haggis and Rumpleteazer had to loose both of their eyes and Rolo has lost some of his orbital bione but boy he does not behave like a blind boy he jumpos at you and is really brave. the problem is he does not sit on your lap but trys to sit on youjr face!!!!

    your bird table Alli sounds fantastic mine has been quiet recentlhy or perhaps have not been looking at right time. 

    AL hope your ok and not been over doing things?

    phone call with doctors a disaster yesterday so came of feeling sad. Apparentoy the biopsies shoould have been stained to identify the cause so i should not have had to wait for cause. the referral should have happened so doctor is going to try and chase up for me. Hace to speak to work this afterniin as doctor said cannot go back until i have had the referral. more hassle. 

    anyway sounds like Alli you are goung to have a goo dday - brilliant hope you will have a good day to Al. 

    cuddle a cat day!!

    keep smiling 

    - oh uyes Eddie Murphy.

    x 

  • Hi Elona and Alli :)

    Had a great day with our friends, seeing them again on the 22nd May.  We always meet up for Eurovision - please don't judge me :laugh:  When we lived in the same place we would go to each others houses each year, sadly couldn't do it in 2020 so will make up this year.  Don't think I will be able to drive to theirs, so they are going to be coming back to us.   I was so tired yesterday, slept through most of it.  Found out today that my iron levels are low, so that's not helping with the fatigue.

    We loved Coming to America, so will definitley give number 2 ago.  Another film worth watching (Netflix this one) is Love and Monsters, it's very silly but very well made.

    Elona you tell me to take it easy, but reading your posts I think one needs to take a leaf out of ones own book lol.  So sorry to learn that doc didn't go well, more waiting :(  The NHS are either brilliant or rubbish, there seems to be no inbetween.  I hope that you manage to sort out your dizzy spell, finger crossed it was a one off.

    Alli it's a good idea to get a stock of films etc.  You'll be glad of them over the coming weeks, though if you end up being anything like me you'll end up sleeping through half of them :)  A few posts back you mentioned not feeling ill, that's the thing with this pre treatment, you feel great some days, like there is nothing wrong, almost to the point of feeling guilty.  Enjoy it is my advice to you.  I also forgot yo mention that after you have your mask fitting you go for a pre radio appointment where they set up the machine, when I had mine they also gave me a tiny tattoo on my chest.  They use this to help correctly line up the machine each time.

    One of my favourite cats that we had was a stray that adopted us, Stumpy was his name.  We called him stumpy as he had a silly stumpy tail.  He was the most lovable cat with a huge permanent smile.  Sadly he passed with an unknown illness.  They tested him for everything, but to no avail.  We now have two cats Twonky and Bubble, two dogs Eggie and Spoonie and 5 birds Popty & Ping (Lovebirds), Cheesecake (Cockatiel), Monet and Da Vinci (Budgies).   The wife says no more pets lol.

    Another beautiful day here in the valleys, apparently we are in for a week of it :)  I hope that the sun is shinning with you both too.

    Stay Strong.

    Al 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

Reply
  • 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

Children
  • 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

     

  • Hello Elona :)

    Cor blimey it's hard to keep up with you two :laugh:

    I find it hard to get on here every day so for ever playing catch up lol.  Away a bit longer this time, had my second covid jab on Tuesday morning.  Went to bed at 10pm Tuesday night, woke up a few times through the night with night sweats (nothing unusual there).  Got up at 6am feeling blooming awful, flu like symptoms.  Slept on the sofa all day, went back to bed around 9pm on Wednesday.  Woke up 8am Thursday feeling better than I had in a long time, go figure.  We worked out that I slept for 34 hours!!!

    Anyway back on the straight and narrow :happy:  Throat has cleared right up in the last week, looks like there was never anything wrong with it.  Tonsil has gone right down as has my biggest node, which looked at one time like I was trying to grow another head.  Throat still very painful though.  My Mum, who was in the medical profession for over 50 years, seems to think that the pain is down to my nerves fixing themselves.  Which makes sense.  Fingers crossed a few more weeks and I will be pain free :happy:  Myself, my Wife and my Mum are going to England mid May to see my two other daughters (I haven't seen them for over a year :sad:).  My target is to be eating enough to have had my tube removed by then.  I have found that I can eat very plain foods, I had boiled rice and a boiled egg yesterday.  Stomach must have shrunk as I could only eat half the rice and two thirds of the egg, wont do much for my calorie intake.  Off to buy some rice puds today.

    The flowers arrived, all 125 of them, Yay!!!  A mix of Petunia and Geraniums, all arrived in perfect condition with the words 'Warning Live Babies Inside'.  They also answered a question that I had for you, what are plugs?  I now know as these plants are plugs, every day is a school day.  So easy and fun to plant, can't wait for them to grow now.  Also transplanted my sprouts to outside on Tuesday, going to transplant the herbs today, but keep them inside till May.

    Goodness this has been about me, me, me lol.

    I can see that your hubby would not be a Eurovision fan.  We use it as an excuse for a party, we love the fact that it is so rubbish and by the time it gets to the scoring we are a few too many sheets to the wind.  Although this year I will be sober, scary.

    I am sure that you can make butter chicken with cream alternatives and it'll still be as nice.

    Loving the stories of the mini mafia, Alli is right there is a book there somewhere.  I illustrated a childrens book a few moons back.  It was for my late brother in law who sadly passed at the age of just 30.  I still have the original artwork and plan to do something with it in his memory.  Also thinking of writing a follow on book.  Too much thinking and not enough doing.

    I hope you are feeling better today Elona, the sun is shinning here again.  If you can stay awake, or you are up between midnight and dawn.  Look up into the heavens and you should be greeted with a meteor show.  One of the best of the year, usually between 30 and 100 shooting stars an hour at its peak.  Last night and tonight are the best nights to watch.

    Hope you have a great day

    Stay Strong

    Al' x