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 Elona

    The watering can lights sounds fab hope your ok. Yesterday was a long day didn't get back till 7 and was ok but felt a bit shaky and weird feel the same today but its to be expected, round 2 today

    Hope you have a great day

    Alli x

  • Hi Sam

    Thank you it was a long day and was glad when it was over,  not feeling to bad a bit shaky and tired but not sick I've took an anti sickness just in case, hope your ok

    Take care

    Alli x

  • I'd definitely say take them even if you don't. 

    It's alot easier to stop sickness before it starts by having a good amount of meds in you.

    TC

    Sam

  • Morning 

    What a lovely surprise to hear from you Sam glad your doing ok and last of treatment finished. Hope things settle quickly for you and swelling goes down and eating eases. 

    Alli glad you have day one over and done with I expect sometimes that is always the hardest. Hope the unusual sensations settle and you are ok today. 

    Al fantastic news you have the ng tube out hope you are now eating ok. I am so pleased have you all in my thoughts constantly. 

    My plants are being transplanted but not in garden yet either due to the unpredictable weather cannot be trusted with all the hard work growing the plants in the first place. Did order some more bedding plants yesterday for £9.99 for 72 garden ready plugs Suttons so hopefully i will have loads of colour this year have the need for colour lol. 

    Today the skip is here so hubby and i are going to try and move items into it little by little., Thankfully the end comes down so it makes it a bit easier getting the items in. 

    Hubby informed me of mini mafias family tree this morning he had been doing a bit of geaneology and it trasnpires that they come from France, Germany, Russia so they are planning a multicultural party late summer when travel bans have lifted. Should be a ruckus! The worry is if they invite the American cocodiles as well !

    Well caught up with a good friend i have not seen for ages on the phone today. Had a lovely conversation hoping we can catch up properly some day. She owns a GSD x Malamute who used to love walking with Shugs and Pedro. 

    hope everyone has a good day 

    keep smiling x

  • Morning and a lovely wet weekend! 

    so glad the garden is getting watered and i have an excuse not to do much as back is aching from filling skip yesterday/ I got a text from some people at work saying they are coming over to see me next saturday so really looking forward to that but also worried place will look a real mess. Put up the watering can it looks quite good just a shame the lights were not long enough for where i wanted them to go. You can get fountain lights which would be better ( i9 had curtain lights) but they seem to be only solar powered which i did not want. I also suggest if any one tries this to use a plastic watering can as the nozzle is further up the can neared the top. I tried with a metal one and it was impossible to get the lights down the nozzle. 

    I have also finished the floor finally in dinning roomarea wow that has taken ages!! Hopefully get some things back to normal. 

    Having a relaxful time this afternoon mexican on the hob and lying on bed with bengal boys and pedro watching Ghost wars on Amazon with Meatloaf in. He actually is a good actor as well as singer. If you like spooky things this is right up your street. 

    Hope everyone has a good relaxing weekend with improvements all round. 

    Keep smiling x

  • Hi Sam

    Took your advice as started to feel a bit nauseous and was so exhausted and miserable yesterday have also no appetite since chemo hope that eases, hope your ok to and are having a nice weekend

    Take care

    Alli x 

  • Morning

    Feel a little bit more human today but still no appetite so that's not helping, I'm feeling pretty down and just hope I can find the strength and positivity to get through this, sorry having a bit of a wobble day. The watering can lights are a lovely idea think I could do with some lights in my garden to make it a bit more sociable. Hope your ok Al and still trying lots of different things to eat you were brave taking the tube out

     

    Hope you have a lovely day

    Alli x

     

  • Morning apologies i did not reply yesterday but spent the day in the garden.

    Alli dont worry you are bound to wobble and feel down with chemo Al was the same. just try and think positive and see the good in everything find things that make you smile and remember hope there is light at the end of the tunnel that gets brighter each and every day. We are here for your wobbles every day. 

    The sun was lovely yesterday i had to get outside but it took all day to do what i wanted with hubbys support. We even had coffee outside and sat outisde listening to the birds in the evening. Feel it this morning though!!! We then had tons of rain last night so i weeded one bed this morning and it was great the weeds came up easily shame cant finish the job. 

    mini mafia have been sneaking around recently hubby has caught the backsides of a couple each day and there has been eveidence of their presence. the rumours are the war plans are coming to fruism and will start any day. Next door informed me she had also seen two running between our gardens. they appear to be residing under her shed and the two she saw are the scouts. 

    Have left my plugs uncovered for the last couple of days to adapt now to the weather, especially as the sweetcorn and butternut squash need to be planted soon. Some of my flowers are also needing planting so exciting if they take. 

    lights are definatley lovely in the fgarden they do bring something to the garden. i have adjusted my watering can and it now looks better and even managed to get it onto a laburnham branch so it hangs down nicely. Worth it and you can get some quite cheaply now. 

    Hope this week goes well for you Alli and AL and Sam you continue improving. Bet Al you are feeling better with no tube now hope the eating is still ok. 

    keep smiling x

  • what a day thought you might like a laugh! 

    Decided to paint spray the chimney iam now working on and had obtained a fire proof black aerosol to use so when i had sat down i felt like trying it out! 

    for the next hour or so we had to sit outside with doors and windows open as it stank the place out totally strong fumes i just breathed in lol and can still taste in the back of my mouth lol. so shivering (as it is now getting dark and cold) we are pacing outside looking like two idiots because i had sprayed the chimney black!! 

    Next Tesco arrive with the delivery thats great no problme i unpack and put everything away and we finally sit down to watch the television. I finally get up to a winging dog who doesnt understand why i have not gone to bed yet and walk into a kitchen disaster! a lovely fresh white loaf for the ubby lies half eaten on the floor still in its wrapper i hasten to add with bits and pieces spread daintly over the place - mummy we have rats i am told hmm i said they dont come in the house - this time i know it is not the mini mafia but Pedro the thief!!! he has finally sheepedly come to bed and curled up with full tum for a snooze! 

    night all x

  • Hi Alli :happy:

    The chemo does sadly affect your appetite and mood, but you will find the strength and positivity.  Some days you have to dig deeper than others.  And some days you just don't feel like digging at all and that's ok.  Some days it will feel like it will never end, but it will and it does.   You will get through this and you will come out he other end a stonger person.

    On the really down days I would watch things that make me smile and laugh even if I didn't feel like smiling or laughing.  I would also rest or sleep as much as I could, sleeping would make the day go faster plus the body is going through so much right now it needs all the rest and sleep it can get.  In the beginning I would fight the sleep as it felt wrong at 2 in the afternoon to be snoozing.  Your body does most of its fighting and fixing when asleep, so I soon allowed myself to listen to my body and sleep whenever it wanted, no matter the timme of day.  

    Also I expect you have been told to drink plenty of water.  I was up to 3ltrs a day and still am.  Definitely made a difference.  Dehydration can make you feel down too.

    You will no doubt get lots of advice, but we are all different and you have to do what ever works for you.  Just remember that we are all here for you.

    Be Strong, on the wobbly days we will be strong for you.

    Al x

Reply
  • Hi Alli :happy:

    The chemo does sadly affect your appetite and mood, but you will find the strength and positivity.  Some days you have to dig deeper than others.  And some days you just don't feel like digging at all and that's ok.  Some days it will feel like it will never end, but it will and it does.   You will get through this and you will come out he other end a stonger person.

    On the really down days I would watch things that make me smile and laugh even if I didn't feel like smiling or laughing.  I would also rest or sleep as much as I could, sleeping would make the day go faster plus the body is going through so much right now it needs all the rest and sleep it can get.  In the beginning I would fight the sleep as it felt wrong at 2 in the afternoon to be snoozing.  Your body does most of its fighting and fixing when asleep, so I soon allowed myself to listen to my body and sleep whenever it wanted, no matter the timme of day.  

    Also I expect you have been told to drink plenty of water.  I was up to 3ltrs a day and still am.  Definitely made a difference.  Dehydration can make you feel down too.

    You will no doubt get lots of advice, but we are all different and you have to do what ever works for you.  Just remember that we are all here for you.

    Be Strong, on the wobbly days we will be strong for you.

    Al x

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