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 Judy

    I am glad to hear the treatment has now finished and there is a light at the end of the tunnel. You must be as exhasuted as your hubby is. Tiredness will last a long time but hopefully will improve gradually. Hopefully the horrid mucus will also strt to clear. Good news the burns are now healing. Also really good news the consultant is happy with progress. 

    I hope you are getting you time during all this so important how are you feeling? 

    take care x

  • Well I'm certainly falling asleep faster. I'm ok, what with drugs and Rig feeds there's something due every 2 hours, I would be totally lost without my phone alarms! but it is exhausting as you are all only to aware.  We have a morale pack delivered every week from our children with some very useful and thoughtful things in although one of the gifts was a bell for him to get my attention as his voice is very weak at the moment, I will throw this bell through the window before long, If any of you watched Breaking Bad you'll remember the old man in the wheelchair who used a bell to communicate, I feel like I'm there .  The kids are amazing though and very helpful.

  • Hi Judy 

    so glad you are ok its nice to hear about you actually. I think sometimes people forget the other person because there is an important issues being addressed, its not intentional but it is important that you dont get forgotten. I love your kids box each week what a lovely idea and how good but yes i can imagine you throwing the bell out the window. If my hubby had a bell he would be wheeled down the garden with his bell!! (he is already in a wheelchir!!). Glad your getting some sleep that is also so importantl 

    the nice thing about this thread is that you can treat it as a chat thread too because sometimes it acts as a distraction from the daily life and nice to hear different things even if it is garden, wildlife etc. you are more than welcome to contribute if you wish, inbetween your hectic life. 

    tonight for instance we have been watching Eurovision - now if you had asked us that years ago we would have bulked at the idea being heavy metal rockers!!! but we thought it quite fun tonihgt and there were two suitable rockers on GFinland and Italy so not bad. Hope you have had a good evening. 

    keep smiling and remmeber you are quite amazing doing what you do x

  • morning 

    looks like a nice day and have already had a text saying a friend may walk Pedro for me. he will love that. slight wind blowing through the trees so could be quite chilly but we will see. 

    had some blue *** and sparrows yesterday playng around the fence and bird table that was lovely to see. 

    have rasputin curled up next to me whilst i drink my morning cuppa 

    have a good day x

     

  • just had some pigeons competing with blue *** and a rook for the fat square i have hanging up on my grape vine, seems to be a popular place. hoping it will attract more birds and the blue *** come back to nest. 

    a friend came over to walk pedro for me that was so kind of her as she lives 10 miles away. they tried to take shugs but she became lame again so came back earlhy but the guys loved it and they said they woulod come again. 

    very very tired today sat outside for a while bt have done nothing. have got a new book arrived - how to make chocolate and candies - yummy!! a hard back so i have ordered some things and will have a go in a few days. i am also going to try making my own pasta got a nice blue maker from amazon - hubby treated me. these things are keeping me going although i should concentrate on the diy and doing some more painting. next door want to do a couple of dogs for them sometime. to be honest have not had the energy so these new things might give me the push. you can see why some unfit people just dont bother. Onwards and up wards!!! 

    cooking programme now favourite cakes - mouth going to start dribbling lol not good for the diet !! 

    keep smiling x

  • Morning 

    Hope everyone is ok. Quite quiet on here just me rabbiting on hoping you are reading and smiling at these nothings! 

    they promise us rain today but so far so good so door open dogs out and in and washing on horse in car port to try and get dry. hahaha horse just gone ut so it is now raining!

    Starling on fat square this morning looking quite healthy. 

    mini mafia grandpa and his brother Arbuthnot (relative of rat who knicked all the grain in the Battle of Waterloo who left the French hungry! so he did his duty for King and Country) were absailing again in the wind and rian doing about 40mph down the road steering quite uncontrollably and having the nerest of misses you had tyo look through gaps in your fingers it was so scary! Grandma went spare and was yelling at him at the top of her voice but he took no notice!

    Watching SAS programme with people who want to be in it quite good but i think they are nutts!! i certainly could not do that at all. Iam after all scared of heights lol. 

    Done a little sanding this morning ai say a little well it was a little lol you probably cannot even see what i have done but that will do for now. 

    keep smiling folks hope the birds and plants are doign well 

    x

  • Hi Elona

    i really enjoy reading your posts especially the bits about the mini mafia .
    Our dog walking has fell to me for the last 3 weeks, we have a miniature Jack Russell name Rory and a Parson Russell name Pickles, fortunately I only have to go around the corner and we have open fields and hills for them to run about on although when it's windy and raining it's wicked up there. Hubby has had his PICC line removed today so at least it's one little step closer, also it might be my imagination but I don't feel he's been coughing on the mucus as much today either!  Baby steps

  • Morning to a bit gllomy outside today! 

    Judy - fantstic news about the tube and less coughing baby steps can seem like milestones at times and exciting news. LOve the dogs Shugs is a patterdale and behaves quite like. terrier at times. You are lucky too then having fields just behind you - cannot beat this to have walks and let dogs off. Bet it is lovely where you are. Glad you like the mini mafia. 

    today i have to gain the strength to do my tax return lol something i absolutely hate although it is nothing really because i do so little 'me' jobs. they keep changing the form and making it so complicared its not fun but will be a huge relief once done. so i have designated this a day for stress!! at least it is not sunny and i cannot want to go outside. -even the mini mafia have been quiet last night they are working towards a mass chistening on the field opposite. it has to be organised in advance of the breeding season and is done this way because normally there are too many babies to christen in one go so when the name is read out they all yell the babies names it can take an hour for everyones names to be yelled out. then there is a mass baby pen where all the little ones are placed in to socialise and meet each other - the probalem with this is at the end of the party the parents often have problems finidng their own babies at the end and it has been heard of that they can take someone elses home having to return the next day. I believe the event is planned for this weekend when the wether is supposed to get better. 

    the birds were squabbling on the fat square yesterday they were so funny i took some photos - a family of starlings were making a huge racket at one point. by the end of the day the whole new fat square had gone so i will need to replace today. It was lovely seeing the blue *** back again though they are probably one of my favourite little birds. so pretty. 

    well cuppa time then no more prograstinations !!! 

    keep smiling x

  • Morning 

    Well the weather is supposed to get a bit better hurrah!!!! at the moment it is still dull but like the rest of our lives we have hope! 

    so pleased got tax done and also hubbys blue badge renewal both turned out easier than anticipated so huge relief. always good when these neccessary jobs are done. off to chemist this morning to collect our hundreds of prescriptions lol.

    might even attempt to bathe the dog if the weather gets better!! that will be a feet and a half and will proably involve me getting wetter than the dog. so will clip him first then bather him .

    have a gorgeous jackdaw on my fence so handsome! they have this amazing silvery neck and jet balck top of head its very handsome. they nest in my redundant chimney and have done for years. i have been very lucky over the last few days with the birds visiting. 

    keep smiling x

  • Hi all

    Sorry its been so long had a bit of a rollercoaster with the treatment, the chemo made me really ill the first week just slept couldn't eat cause felt sick all the time had the anti sickness tablets changed which helped but then my ulcerative colitis flared so then had chronic diarrhoea that was bloody so was admitted to hospital for 5 days to get it under control and had a colonoscopy to check there were no other problems thankfully not, on steroids and lots of medication so feeling better but have blisters in mouth and throats very sore but that's to be expected, after today's treatment I'm halfway through doctor said that its probably to damaging to have any more chemo but the tumours shrunk so the radiation should be enough so fingers crossed, hope you are all well 

    Take care Alli x

Reply
  • Hi all

    Sorry its been so long had a bit of a rollercoaster with the treatment, the chemo made me really ill the first week just slept couldn't eat cause felt sick all the time had the anti sickness tablets changed which helped but then my ulcerative colitis flared so then had chronic diarrhoea that was bloody so was admitted to hospital for 5 days to get it under control and had a colonoscopy to check there were no other problems thankfully not, on steroids and lots of medication so feeling better but have blisters in mouth and throats very sore but that's to be expected, after today's treatment I'm halfway through doctor said that its probably to damaging to have any more chemo but the tumours shrunk so the radiation should be enough so fingers crossed, hope you are all well 

    Take care Alli x

Children
  • HI Alli 

    Sorry to hear about your journey so far you are very brave and sounds like you are doing well glad tumours have shrunk that is good news so hopefully as you said the radiation will do the job. Wow you have been through the mill but so pleased you are feeling better. We are here for you all the way through if we can xxx Half way through thats good that means the light is getting bigger at the end of the tunnel xx 

    stay strong as AL says and keep smiling xx

    how are the birds on your table?

  • Morning to a sunny day (we hope!)

    both hubby and i are having a reasonably lazy day both of us are tired although we dont know why. i could easily have stayed in bed today and slept for longer but forced myself up. so the job for today is simple to make a corn chowder for tea. 

    We have decided to give myself something different as well as a job a day or instead of we chose a country to cook a dish from. This week is American week. I love cooking and this is to hopefully bring myself something to smile at and enjoy when being tired you cannot be bothered. So far this week we have had 'naked' chicken burger - a chicken fillet marinated in tomato sauce, paprika, italian herbs, onion powder and garlic powder then griddle panned added to toasted burger with lettuce and pepper mayonnaise. We had bacon and cheese seed waffles yesterday and corn chowder today. Tomorrow is pasta making day we hope! 

    Just got Pedro a new pair of clippers. We invested in a pair of oster clippers - we use them at the vets so i know they work - and the old pair i had took me two weeks to clip the boy and i dont have that energy so need something good. They arrived today (very expensive but worth it ) and tried them out boy wow and wow took me 5 minutes to clip Pedros legs. all four of them too !!!! Bless him he was soo good he just sat there. (that was my other job and will be to finish him by the weekend or over it so he can have his bath). 

    the birds are being greedy little so and so's they got through another whole fat square yesterday - am down to only two left so will have to see if we can get some more!! It is wonderfula watching them and the fighting squabbling starlings so funny and so noisy!!!! 

    mini mafia have been constructing a new palace at the bottom of the garden I nearly fell throught their ceiling yesterday when i was looking at my veggie patch to one side i noticed a new pile of freshly excavated soil! took a step forward and felt myself sink slowly and slowly further and further into the ground!! their ground work has now been flattened at one point so hopefullly they will change direction but am not sure about that. we will keep an eye out. The builders were shouting explenatives at me at the time as well as running in all directions they were definately not amused but then they did have their hard hats on and the soil was soft since it was new compost. 

    have a good day and take care. 

    Alli if you feel up to it sometime please write all your esxperiences here even how emotional tyou feel it will help others to read everything how are the burns and what it was like etc. We know everyone is different but am not sure people write enough down as they try to forget or get through and therefore people are not totally armed with all the information. Hope you are feeling ok today. xx 

    AL and Sam hope you are both ok 

    Al bit concerned have not heard from you xx

    keep smiling all xx

     

  • Morning - what a lovely morning it is! sun is shinning lots of people out in gardens gorgeous. Have just been up road to get a couple of bags of compost to finish of my water feature surrround and then will plant my little plug plants. 

    today am feeling bit brighter so am aiming on making raviolo later with my new machine - chicken and chorizo ravioli. our neighbour is spanish and he and his wife are coming round for dinner sunday so will be doing some spanish dishes for them. 

    pedro was naughty last night he barked at 5.30am so have had to get a plant for the other neight=bours as a sorry she is a light sleeper and unfortunately when hubby lets him out early he can be a little noisy for her. most other people would not notice so typical but thankfully she has not really complained yet.... does not help that the naughty sister initiates it hmmmmm ...

    blue *** and black bird were waiting for fat square this morning but they will have to wait i didnt realise how expensice it is they have good taste typical for this household never a cheap animal!! thankfully we did get some seed with bogof. 

    hope everyine is feeling ok and getting some healing sun. catch the rays this weekend if you can and relax and start to heal. 

    have a good weekend 

    keep smiling x

  • hope everyone has enjoyed the sun today. managed to plant the plugs so pleased. now just have to wait for the water feature and it willl be finished. did not get to do pasta but have made the filling, so job for tomorrow but am really tired now. planning a cooking day tomorrow if i can for friends who are now coming sunday. 

    have a good evening x

     

  • what a lovely sunny day so instead of going inot garden decided to change the living room round lol. never did do things the right way round. trip to currys to get tv extension aerial and the moving of the tv unit with all assessories on began .... 4 hours later....... manged to get it moved now the reasemble ..... another hour later yay!!! no humax doesnt work move out the unit andother fiddle around had not plugged something in phew! everything else can wait until another day including the hubbies 500 records ...

    tortoise has got confused moving around he is trying to get into corners he definately cannot and getting quite stroppy about it the silly ***. the bengal boys have not been through yet so they have yet to find their way around. the room certainly looks bigger or longer now. we will sleep well tonight. 

    mind you have still got pasta to make and cheesecake looks like i wont be getting a break anytime soon tomorrow will probably see me in bed most of the day lol x and shoff we used to say. in other words all or nothing. 

    hope people are having a good restful day and are ok. 

    mini mafia were responsible for letting down one of my tyres yesterday. Grandpa informed the hubby it was his sons Sniffy, Stiffy and Spiffy, - Sniffy has a cold, Stiffy has all the children in the household and Spivvy is a spiv selling watches nylons etc. this was the start of their revenge by playing pranks like youngsters instead of being the adults they are now. thankfully the tyre was ok this morning after bine pumped up yesterday so we will see. 

    right back to cooking. 

    x

     

  • morning, 

    well i was right am tired and sore this morning lol, neighbours turned up for a game of canasta last night so it ended up a late night as well. they very kindly said they would help us move the records tomorrow. 

    the sun is already shinning and it looks gorgeous but there is quite a wind. hope for everyones sake it settles because so many people have been needing this nice weather. hoping to get things ready for later then go outside for a short bit. 

    hubby is still asleep lol hoping he recovers for later!! 

    have a good day keep smiling x

     

  • evening 

    hope everyone is ok and enjoying the sun. 

    A day of moving things around and sleeping lol! 

    hubby decided that he could quite happily loose his 'mancave' at the end of the living room - i should say he lives in the living room and sleeps in a recliner so for him to say that i could alter the room around that is a double room one side being our dinning area ws qjite a coop. 

    bonus for him was to move the tv away from the window so he could look out that did it and it actually does look good. it has taken all day since 6 am with couple of hour sleep breaks inbetween lol a few tweakings and it should look good and easier to clean now too. also when i get round to decorating the other end of room will be easier now too. 

    hopeing tomorrow i can just go into garden play with dog and rest. 

    next door unfortunatly broke into the rat hotel and upset a new family who had decided the garden room was nice and comfortable for them, unfortunatly not for the plant so it was dug up reveling them. the room next door was the sauna since it was under some garden slabs and gets quite warm so the hotel is now having to be renovated. We are hoping this might give them the opportunity to move location and get a new location worth a bit more!! after all location location location !!!

    the birds have been out in force tody too it has been lovely seeing them all. the mealworm fat square certainly goes down well and i have moved the bird table nearer the pond away from the house but where i can still see it. there was a wood pecker yesterday on our fence, our other neighbours saw it. they have a lot of feeding stations and i thinnk it feeds there. 

    really hoping people are ok its a bit quiet here so hoping my ramblings are giving people things to smile about. 

    keep smiling x

  • morning all

    hope everyne is getting better and feeling more positive and enjoying the sun, let the suns rays heal and make you all smile. 

    summer is getting here at last and the plants are all coming out and beginning to show colour. flowers are coming out and looking good and there are more to come. garden is looking really pretty. will need to get the hose out later to water the garden the breeze dries out the plants quite quickly. 

    furlough is now extended again so i dont have to worry about work yet until my hospital appointment. 

    relazing day is going to be had by all (except pedro who will no doubt give me aball to chiuck to him all afternoon)!!! 

    tske care 

    keep smiling x

  • Morning

    another lovely day albeit still a little breezy. Tortoise has been put outisde to enjoy the warmth. the dogs have the door open which is lovely so they can come in and out as they like. I might do a little weeding later and more watering. 

    job though is to do a little of the entrance porch area of bungalow to do a little sanding if i have energy. i have not done any for ages. chanigng the living room round took it all out of me i fell asleep again yesterday afternoon with the hubby. 

    all quiet outside the mini mafia have been having a holiday and some of them have decided to visit the seaside because of course a lot of peopple have also been visiting so it seemed there maybe a lot of pickings there and they could sun bath too. they took with them a sun umbrella an empty picnic basket for forage and gatherings. they took a huge blow up ball and cricket set to have games with and of course their swim suits. this means we have had a few days of peace and quiet. the hotel is also slow since the renovations are having to go ahead. 

    have ordered some home covid tests so i can test myself before i go to my appointment end of month. not going to test every week seems pointless when we dont go out. the last appointment letter even says to test using the home tests before appointment now. will be interesting doing it. 

    managed to also get blue baadge sorted for hubby but can taek four weeks to arrive no wonder we have to order it way in advance. 

    starlings are growing up they still squabble on the fat square which is hilarious shoving and bickering to get an appropriate place for a bigger mouthful!! they are definately ready to fly becasue they are as big as the parent!! 

    hope people are getting some healing rays and watching the flowers grow and the birds fledge and relaxing. 

    take care peeps

    keep smiling x

     

     

  • morning 

    well i hope eveeeryone is still enjoying the weather and lapping it all up. very quiet here just my ramblings!! 

    planted my celeriac yesterday because they were not doing anything really in the tray so they have a 50/50 chance now. did a bit of weeding around the hen house to tidy up whilst they insisted on trying to kick things out at me!! 

    will need to water the plants again later the weather has slowed things down it is strange things are not growing as well as they should. the veggies usually sprout up by now and are not will have to keep an eye on everything. my pond plants should be arriving any day so thats exciting. 

    may also do a little sanding too if i have the energy. that should be my job of day but these jobas have gone out the window a bit so need to get a grip and start again. 

    find something nice to do today and keep smiling xx