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 

    Had the day surgery Wednesday and it went well just a sore throat afterwards, the doctor said he doesn't think there's anything to worry about

    2 weeks for biopsy results so will know for definite but until then I'm not worrying, I'm back on the enenemas again colitis flare refuses to give up but if it works eventually ill keep doing them, hope you are all ok and getting excited for Christmas

    Take care Allison xx

  • Hi Alli

    Just a quick note to say glad your surgery went well, everything is looking very positive, I'm really please for you. Hope you're colitis settles soon.  Take care

    Judy xx

  • Hi Alli

    so glad all went ok and your doing ok. yes definately dont worry hopefully the two weeks will go quickly. x

    hope the collitis settles too cant be nice. you take care x

     

    Hi JUdy how are youdoing??

     

    well the manager of the hotel was very upset the extension was squashed and all the builders hard work demolished in minutes! (my demolishing!), he is trying to decided whether he can sue or behave in a decidedly vengeful manner! the builders dont care because of course it just means more work for them and naturally they are guaranteed jobs so alls good there. so far no signs of any work being done so suspect they are sitting on their laurels again. 

    Little miss boyfriend has been out and bought a ring - well i say ring rats dont do rings for fingers because they cannot find anything small enough so its for their tails. after all they are very proud of their tails so this highlights it and shows oif to everyone that they are engaged or married. this ring was a bead he found from a bacelet that was thrown out and handed into to the local 'jewelers', the inside of the bead needed to be made a bit bigger but it is very pretty pink shades in colour so he thinks she will like it. he is also organising the families to get together on the parade for a picnic where he hopes little miss will say yes in front of everyone. (he has already got permission from little miss dad, her mum is not convinced he is good enough but hopefully with all the effort he is putting in she will come round). 

    there has been a mass baking day in the village where everyone is making Christmas cakes they spent all week foraging for nuts and fruit thrown out for the birds or dropped by people and birds and this has now been divided per household and everyone has been baking. they all like putting their own spin on the cake some like an extra piece of fruit or a dribble of alcohol or anything else they fancy. tomorrow they are going to make a gingerbread house to erect on the field and be part of the feast afterwards. they will be able to nibble at it after the day has gone. 

     

    i have been really tired this week it has been a bit busy at work we have had several people go down with covid because they went out for a leaving do for one of our receptionists and this was her final goodbye giv them covid,. luckily iam ok. thibk iam running on air though and trying to breathe when busy through nose is impossible. hubby is quite surprised i have coped so that is a bonus. still on mopre sickness tablets and steroids for another three weeks then i go back for another appointment. 

    take care x

  • Hi Elona

    im good thank you, hubby is doing really well. We have an appt with the dietician this week and going to ask if he can drop to just 1 ensure a day now, his RIG tube is gone and he's eating well and maintaining weight.  We're going to Chester at the weekend for the Xmas market, a bit of shopping followed by a nice Thai meal then spending the night at the lovely Chester Grovesnor hotel.  This is the last of the morale gifts that the children gave us on his final radiotherapy day.

    its lovely to see minimafia back and also lovely to know you're back at work ( don't know if you agree Lol) but it's a step forward to some normality.

    take care

    Judy xx

  • Hi Judy 

    glad to hear the hubby is doing really well and eating ok. the weekend sounds lovely and one I am sure you will both enjoy - have fun. really enjoy it. I want to hear baout all the goodies you get lol 

    Being back at work is good to have some normality so from that point of view is good lol i am having to adjust my hours slightly to cope and make sure i get enough breaks. 

     

    the mafia are still continuing the cooking for Christmas they are making ginger bread cookies. These are deterrant cookies as well as decorative and the mini faia believe in krankus who comes for all the naughty kids and is very bad. so they make a huge krankus that has horns on his head and a hunch back. he walks with a staff and is coloured in black. it is to scare everyone as well. near his feet they make little mini mafia whoi are more colourful and are trying to run away. as they run away they are throwing pressents at each other. this is part of the christmas celebration to be put up in the field and can be eaten on january 5th. it will get covered in scellophane to prevent it getting wet and run away! 

  • Hi Elona

    The mini mafia sound like they have been very busy lol, hope your ok and are not finding work to tiring, I know what you mean about work making you feel more normal I am actually missing it I got made redundant from debenhams in April so once I'm back to normal will be looking for a new job

    Went to lymphedema clinic on Wednesday and have lots of excesises and today went back today to get special plasters that help open capilarys had to do patch test first in case of allergys, hoping double chin will have vanished by the 10th as we are going to a wedding but think I'm expecting a miracle lol, we are off to Ludlow for medieval fare tomorrow back Monday so I'm quite excited

    Take care Allison xx

  • Hi Judy

    Hope you hubby are both well, how is is hearing my ear has been popping a lot and I think some hearing has come back. I noticed you are off to Chester for the weekend hope you have a wonderful time I don't live far from there and used to work there its a lovely place to visit and the Grosvenor is fab

    Have fun Allison xx

  • I meant to say your hubbys hearing think my brains gone to sleep lol xx

  • Hi,  his hearing is back to normal, he had it checked at the time with the audiologist but they said it was the same as his previous test then shortly after it went back to normal, we think his blocked saliva/parotid gland was probably responsible.

    Think we're in for a cold Chester weekend lol, but I don't mind as it will feel more xmassy and like you say it is a lovely place.  We only live an hour away from there also.
    Hope you have a great time at Ludlow, another lovely place, there's some great restaurants there too.

    also, just wanted to say, hubby has to do excercises for his lymphoedema, he's been doing them everyday for about a month now and you can really see a difference.


    Have fun

    Judy xx

     

  • Hi Judy

    Hope you had a lovely weekend and the weather didn't put you off, the medieval fayre was cancelled in Ludlow because the wind had caused so much damage which was disappointing but we still had a good time. Had the results from biopsy and they are clear so I'm cancer free

    Take care Allison xx

Reply
  • Hi Judy

    Hope you had a lovely weekend and the weather didn't put you off, the medieval fayre was cancelled in Ludlow because the wind had caused so much damage which was disappointing but we still had a good time. Had the results from biopsy and they are clear so I'm cancer free

    Take care Allison xx

Children