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!

  • tuesday morning guys  nearly half way through. 

    rain watering the garden hmm not good when ive got some plugs coming. hoping it might be the bulbs instead. 

    house is nearly back to normal - mine means not perfect loads to do etc etc, in otherwords livable! then i can feel bit more relaxed job for day attempt to move a bookcase - not full size one lol, and only from one room into next. the phrase light at the end of the tunnel comes to mind. 

    Al - please just let me know how you are. i expect your going through the darker periods of treatment - hang in there have hope. 

    gotta go and have my early morning cuppa cant do without it!! 

  • hi 

    hope your ok, its half way through gthe week dont forget I am here for you. 

    am c urrently having the morning cuppa surrounded by 4 cats who are preventing me typing well laptop being pushed righ up my chest so hard to type! cats of course get prferential treatment. these are the Bengal boys (my mafiosa!) i have feet of Rumpleteaser sticking in my side, Rum tum tugger on lap hence laptop and rolo lee haggis pretending tobe angelic and washing. Rasputin curled up down the bottom. to complete the picture Shugs is on the floor flat out. 

    i cooked my first meat joint yesterday for ages - slow cooked so fell of bone and no real chewing  lamb in rose harissa (so not too spicy) with coriander, mint, wine and honey. was a tesco recipe quite impressive. 

    well hoping your smiling and have hope x

  • thursday peeps sun is promised to us at the weekend so when you are relaxing you can soak up the important rays. I am then going to try and plant some bulbs. 

    morning cuppa time bit late today was up last night with bad indigestion - an unusual occurence for me so watched click at 3am. weird concept - buying the digital rights to digital art??? basicslly as you probably know the first edition has a special trace and this is what is being sold so although people can see, download etc they dont own the original not sure how that will go but is racking in loads of money!

    hope the taste buds are coming back Al and you are eating ok and not loosing more weight. 

    Sam and Christine hope your both ok too. 

    still awaiting my referral :(

     

  • friday guys the sun is shinning its looks lovely outside. new shoots bring hope and regrowth. 

    Al your treatment for the week is over so you can relax, hold your lovely wife, smile through every adversity and remember your only a couple of weeks of the end of this treatment. things can only get better.x

    pedro had his feet sheared yesterday he is now getting a bit knotty but i can only do a little at a time so back legs yesterday, got it a little uneven one side goes up to his butt the other thigh ! looks like his top is lop sided! the only bit i do not touch is his head because it is a mop and i love the scruffy mop!

    well cuppa time speak soon x

    be strong yourselves 

     

  • saturday folks a lovely weekend ahead with no treatment. you can relax and concentrate on getting better. keep hope in your heasrts be positive and smiling. it is important to keep your spirits up. 

    my morning curled up with three cats at my head and one large dog lol what could be better. yesterday managed to get into garden for half an hour and planted a few bulbs. i have that to look forward to. 

    let us know how you are 

    be strong smile and hope 

  • morning its sunday today although i woke up thinking it was monday. 

    feel the need for a mellow day today, not that i do much these days anyway! but you never know after a cuppa. hope your feeling a bit better today. let us know. 

    stay strong as you like to tell me - my turn! 

    keep smiling or ill give you a photo of pedro sheared 

  • Morning Al hope your doing ok, its week 5 so nearly the end of the treatment the light is definately at the end of the tunnel. the sun is shinning here s lovely sight to see we need the spring makes everything feel better. 

    no news on my referral think i have been shoved to the bottom of the list as unimportant now thats worrying but keep hoping. 

    the mafia have become brave there obviously is no food about they are trying to gtet on my bird table now to eat theiur seed, hence i have not seen many birds, :( went out with my psoriasis crem and smothered the stem hoping it would help - based with liquid paraffin and didnt have anything else but looks like has not helped much. will have to try and think of something else. cheeky buggers saw one run across the garden yesterday. 

    keep smiling and keep strong minded. you can cope with anything we believe in you 

  • Morning Al and all, 

    hope your all ok, wole up feeling a bit rubbish this morning the infection must be having a bad day lol. 

    started shaving Pedro a bit more yesterday since his goldden doodle fur is awful - the retriever and poodle furs matt and form a thick coat so it often needs shaving. its very hard to do and ususally i hve to do it in stages so 

    stage 1 the feet dip - a shave feet looks good and sensible to keep feet clean 

    stage 1 the sheep shave - a more radical leg shave leaving a distinct sheep look about him

    stage 3 the lion cut the *** has been clipped and back side so a mane is left across the shoulders a nd head 

    stge 4 begins today the mop head this leaves the top of the head un touched because the fur here is exactly like a mop and does never get touched if it did it would get matted like the rest of the body. here the shave finishes. 

    oh i had a staring competition with a little mafia boy so cute but despite my creaming the bird table was sitting on it eating bird seed cant be good for him. 

    have a good day 

    keep strong and smiling

  • 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