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 Allie :happy:

    You ask as many questions as you like, I will try and be as helpful as I can.

    The feeding tube that I have is an NG Tube, goes up the nose and down the throat.  Sounds worse than it is.  The ones that they connect straight to the belly I believe that they avoid those if they can.  More trauma to the body.

    The full body PET Scan does help to ease your mind.  I didn't even mind if they found something, just knowing was enough for me.  

    It's good that you are out walking, even better that you are enjoying it :happy:  It all helps, just be careful not to over do it.  Last thing you need going into treatment is to be fatigued.

    I will be thinking of you today, dental appointment.  Fingers crossed you need no extractions.  The dentists that I saw at hospital were a breed apart from my regular dentist.  They will do everything they can to save your teeth.  My regular dentist is no longer allowed to remove any teeth.  If they feel that I need one removed I have to go back to the hospital and they will do their best to save it.

    Just reading through your posts, I would love to illustrate a mini mafia book :happy:

    All the best today.

    Be Strong

    Al x

  • Hi 

    AL please take things very easily then if you have chronic fatigue and possible mucositis. (hope ENT goes ok tomorrow) seems like you are breaking all rules about being different. hoping this is nothing serious and nothing to worry about. i thnk though people will get a brilliant idea of what you and sam and Alli will be going through by reading this thread. 

    am feeling bit better today much like you guys i have good and bad days with fatigue but not so bad as you. trouble is i cannot get to sleep during day very much hence watch a film. 

    hahaha we will all be gardeners here!!! should build ourselves another group the cancer chat gardeners lol. well i have always found it therapeutic - yes sorry about spelling, head goes ahead of fingers so sometimes comes out wrong!! my yakon roots are arriving in about a week so that will be exciting to see what they look like. glad to report some of my little plugs are growing yay!! 

    going to take hubby into town this morning - my first trip out since christmas - apart from hospital and doctors etc. not sure about wanting to go still even though we have masks and are vaccinated because not sure i should but need to get to bank and he is hankering going round poundland!! he has a sweet tooth lol. i think though he is just looking forward to getting out. At least it is sunny. 

    hubby came through this morning to inform me that there was a mini mafia funeral last night (he was truying to make me feel sorry for the mini mafia lol) - the one who had been scrapping a lot to try and get back into carport. he said they made a real racket, had beer cans piled high on top of the coffin, one leg was hanging out, there was a lot of singing and wailing as they walked past. the men were as *** as neuts. (they were faking everything!!!). the protests have begun. as far as iam concerned the carport looks really good now and ready for the hedgehogs. 

    am being pestered by rumple teazer now boy he has claws, since he has lost his shyness he has got quite affectionnate but also i need to clip those claws since he pats me with them and they hurt!! - especially at 2am!!! 

    well enjoy your day 

    keep smiling x

     

  • forgot Alli good luck witht he dentist appt

  • Hi Elona :happy:

    Look at me posting two days in a row!  probably because we spent all day yesterday doing absolutely nothing, bar watching a film and a few tv shows.

    It does feel like I am breaking the rules again, I'm fed up with rare lol.  Just one bit of normallity, that's all I ask...  Actually life would be boring if everything was 'normal'.

    Cancer Gardeners Chat Haha!  Love it.   It is raining here today, all day I believe, which I am actually happy about.  Can't beat a bit of rain water for the young plants.  My Grandad had a water butt to catch rain water, think I am going to put one on my shopping list.  Good to learn that your plugs are growing, here's to blooming gardens this year, such a shame we cannot post pics on here.

    How did your trip with hubby into town go?  Our friends that visited, he absolutely loves Poundland.  I am sure he must have shares in the place lol.

    Sounds like the Hedgehog Hotel will be opening it's doors soon.  We used to get a lot of hedghogs when I lived in the countryside.  Didn't see one for years after and then we happened apon a weak young one last year in a local park, I was shocked that it was the first time my wife had ever seen one. We kept an eye on it until a local hedghog sanctury picked it up.  We often wonder how he/she got on.

    Hope you have a great day today

    Stay Strong.

    Al x

     

  • Hi

    Will have to get tomatoes growing now so I can be part the gardeners chat group  Elona lol what is a Yakon  root? hope your hubby stocked up on goodies from poundland they do have a good selection. Hope your appointment went ok Al how did you get on, hopefully your energy levels will pick up soon. Had a busy couple of days went out Monday to New Brighton and had a lovely time and had chips and fudge so no chance of losing weight before treatment that's my excuse anyway lol, hospital yesterday the mask fitting was an interesting experience got a bit panicky cause I'm claustrophobic but they were lovely had scan of head and chest with mask on that's going to take some a getting used to, after dental assessment they said I didn't need extractions so treatment starts Thursday  so scared and pleased at the same time, the doctor has decided against the tube in tum because I have ulcerative colitis so will see how I go and maybe ng tube if needed. The bird I saw was a Rhea I was talking to a neighbour and she said its the farmers so mystery solved, catching up on cleaning today not very exciting  but has to be done

    Hope you have a lovely day

    Alli x

  • Afternoon 

    bit late today needed more mellow time, and a dog to cuddle up to lol. 

    A little pair of pathetic eyes was watching me yesterday cleaning near a window and it skirted out a couple of times to collect a piece of corn litter before running back. felt a slight pang of guilt but it soon passed! there were a few bangs last night too but we could not assertain where they came from this morning. - the plan is afoot!

    the trip into town yesterday was not enjoyable. There were too many people not wearing masks i did not like it. Even though iam now vaccinated until i get sorted i do not want to come into contact with stupidity. One woman went into poundland with her young child, put a mask on herself to go inside but didnt put on on her child! could not believe it. even if the risk is low for children i would not have taken any risk. We did not stay out long. 

    I let hubby go into poundland by himself and he came out with a bag full lol./ - with the pretence that he had thought of me at the same time and some of the items were therefore for me! Always a good excuse. 

    cant believe how cold it is today, we certainly do not have any sun and the wind chill factor is freezing. It is supposed to be summer time - the only indication is the beautiful blossom on my fruit trees. (i have made a small area into an orchard with plum, apple, pear, saskatoon, elderberry and walnut. The apple and pear act as a fence surrounding one side. They also act as a divider for the garden and a wind break. 

    there have been a few lovely birds around this morning. The pigeon came for his morning feed, there was a blackbird at the bottom of the garden, a rook next door - what an amazing pointed beak he has - very dangerous!, blue *** and sparrow. i do love this time of year. cant say it enough but love the emergence of new life. 

    watching sony movies today - love disaster films! after watching asteroid versus the earth we now have eruption LA lol keeps me happy - no energy for work on paper or book or anything else today, probably just me being lazy lol. shame though have a lot i want to do. Doea not help when a cat attacks you at 2am when you dont need to get up for medication until 4am! the swine you cannot reason with them lol. 

    anyway hope you have a good day 

    Al great to see you two days in a row lol 

    Alli hope went ok. 

    keep smiling x

  • morning

    Alli glad you did not need to have any teeth out thats good and that your treatment can start. Hope it goes ok anmd remember we are here for you. x By the way have no idea what yakon roots are like lol they just sounded really interesting so thought i would try them lol!! 

    At the moment it is lovely and sunny but they have forcast some rain. Boy the plants need a good downpour they are very dry. it also gives me an excuse not to be able to do anything or feel guilty about not being able to do anything outside. ! i have created so much junk we need a skip!! 

    Next door had put out a half coconut filled with stuf for birds and the rook was on it this morning, byt the way it was pecking i would be surprised if there was anything else for the other birds left. Rum tum has taken great interest in looking out the window at them and still forgets there is a window separating him from getting at them ! 

    couple of thumps in the carpart again last night but no visible evidence! ....

    keep smiling x

  • Hello

    Weather doesn't know what to do with itself here so using time to sort house ready for treatment start on Thursday then if the sun comes out ill go for a walk later, hope you and Al are feeling ok the yakon roots will be a lovely mystery while you wait to see what springs up, poor RumTum will have concussion at this rate Elona lol, next doors cat wandered in this morning while I was in the garden he nearly give me a heart attack when he come walking down the hall he got a bit panicky cause I had shut the door so didn't have any trouble vacating him lol, I'm going to miss the tales of the mini mafia I think maybe they are realising they can't win the battle you may see a small white flag as they leave with there tail between there legs quite literally. Al hope you have been given something to ease your mouth and you are feeling better. Well back to work hope you have a good day

    Alli x

  • Hi Alli :happy

    I am so glad to learn that all went so well with the restorative dentist, you must be very happy too.  One less stress for your body to go through and believe me the less stressess the better.  It also means that you can get on and fight the real fight.  I was so happy when I got my treatment start date, it was a relief to be able to finally start fighting back. But like you I was also a bit nervous about going into the unknown.  This is why we need more people like you and Sam talking about their experiances of the journey.  I think an NG is much better as it isn't invasive, again less stress on the body.  Did you get a small dot tattoo?  I had a tattoo on my chest to help line up the radiotherapy machine.  As soon as I am better, and can afford it, I am going to have another tattoo in the same place incorporating the dot.

    Which part of your treatment starts on Thursday?  Did they decide to go for the two or six chemo sessions?

    Go on start growing some tomatoes, if nothing else they will be something to do and think about to help take your mind off of all that is going on.  Loving watching things grow and there is nothing like home grown.  I too have no idea what a Yakon plant is, I am sure Elona has told me before, but with my brain it totally escapes me.

    My appointment went very well thank you Alli.  I do have ulcers in my throat, but ENT said that they believe that they are clearing up (forgot to ask what the cause is).  They gave me a script for a mouthwash which also has a pain killer in it.  Also prescribed 3 moths of Antacid, and that is a lot of bottles.  Suffering really bad with acid reflux, probably due to starting to eat real food again, stomach not used to it.  He had a look down my throat with a camara, which was interesting as it goes up the nose but I only have one nostril and the other has the tube.  He said that he could not see any sign of the cancer, Yay!  But obviously they wont know 100% until I have the PET Scan, but still great news.  Diet and speech were there too, decided to stop the 10 hour 1 litre night feeds.  Now on 4 hour 500ml feed 6pm - 10pm plus try to eat as much normal food as I can throughout the day.  They're going to contact me on Tuesday to see if its working.

    Alli, have a great bank holiday weekend, enjoy every moment.  Start growing tomatoes.  

    Stay Strong

    Al x

Reply
  • Hi Alli :happy

    I am so glad to learn that all went so well with the restorative dentist, you must be very happy too.  One less stress for your body to go through and believe me the less stressess the better.  It also means that you can get on and fight the real fight.  I was so happy when I got my treatment start date, it was a relief to be able to finally start fighting back. But like you I was also a bit nervous about going into the unknown.  This is why we need more people like you and Sam talking about their experiances of the journey.  I think an NG is much better as it isn't invasive, again less stress on the body.  Did you get a small dot tattoo?  I had a tattoo on my chest to help line up the radiotherapy machine.  As soon as I am better, and can afford it, I am going to have another tattoo in the same place incorporating the dot.

    Which part of your treatment starts on Thursday?  Did they decide to go for the two or six chemo sessions?

    Go on start growing some tomatoes, if nothing else they will be something to do and think about to help take your mind off of all that is going on.  Loving watching things grow and there is nothing like home grown.  I too have no idea what a Yakon plant is, I am sure Elona has told me before, but with my brain it totally escapes me.

    My appointment went very well thank you Alli.  I do have ulcers in my throat, but ENT said that they believe that they are clearing up (forgot to ask what the cause is).  They gave me a script for a mouthwash which also has a pain killer in it.  Also prescribed 3 moths of Antacid, and that is a lot of bottles.  Suffering really bad with acid reflux, probably due to starting to eat real food again, stomach not used to it.  He had a look down my throat with a camara, which was interesting as it goes up the nose but I only have one nostril and the other has the tube.  He said that he could not see any sign of the cancer, Yay!  But obviously they wont know 100% until I have the PET Scan, but still great news.  Diet and speech were there too, decided to stop the 10 hour 1 litre night feeds.  Now on 4 hour 500ml feed 6pm - 10pm plus try to eat as much normal food as I can throughout the day.  They're going to contact me on Tuesday to see if its working.

    Alli, have a great bank holiday weekend, enjoy every moment.  Start growing tomatoes.  

    Stay Strong

    Al x

Children
  • Forgot to say Al that's brilliant news that they couldn't see cancer when you were examined x

  • morning all hope your having a good weekend. 

    Al fantastic news re your endoscopy, i had that down the nose it was quite uncomfortable as i remember but fantastic they could not see any cancer - looking positive. 

    Alli thank you that made me feel better, and am glad your appointment went ok although you had a bit of a journey. 

    well i had a stand off with mini mafias cousin who i think lives near the pond. (i should charge him for having to patch up the pond liner making a large hole for a window), he was up on the bird table eating happily until i opened the window then he scooted into the flower bed and i could feel his little bedy eyes watching and waiting for my back to be turned before yes he was up gain! three attmepts later and he had eaten all the bird seed i lost that battle. 

    as for the mini mafia well there was a scuffle in the carport last night and a fight broke out. they were trying to get a plan together and could not agree on the details so mini mafia junior threw my disinfectant spray bottle at his brother who retaliated, grandpa had to intervene and pull the brothers apart leaving them black and blue. 

    i decided that i need colour to brighten my life so have chosen some fragrant parrot plants for the garden adn some poenies. not usually a peony person but these have ruffled flowers and look pretty and i have a bed that used to be a foxgloce and grases bed that could do with a change. colour is another thing that can make you smile. 

    easy day today after yestrerday that really drained me and when iam in pain and tired i do get emotional so some gentle sanding me thinks. am hoping that pushing myself to do these things will help with my illness. 

    keep smiling x

  • Hi Elona 

    I think the mini Maffia are here to stay lol, your right about the colours of flowers making you smile I have a plant that despite the winter and me looking after it lol survived and has a mass of lovely little purple flowers that look like little stars. Don't overdo things you have to keep your strength up. A day of washing and ironing not my favourite job but am getting prepared so I don't have to worry about finding something to wear when going to hospital

    Hope you have a lovely relaxing day

    Alli x