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!

  • Morning 

    Yay so good to hear from you Alli - and hear your news. I am glad you are feeling on the up and not so tired. Glad your eating a bit too but hope the saliva sorts itself seems to be a general thread that. Afraid according to Judy that takes time. Keep in touch lovely to hear from you. Keep safe and keep improving the light is shinning at the end of the tunnel! 

    gloomy dy here quite a bit of rain last night didnt help with the shoring up of the mini mafia hotel made the foundations hard to sttrengthen so it took the builders quite some tim The builders were huffing and puffing as they worked after all they have been sitting on their butts for the last couple of mon ths so to have to work again was a bit of a struggle - and they could not stop once started since the foundations would fall down if they did!! the manageer was going round very restless his business was in jeapody and he needed the business and the rooms filled. there were a couple of families that desperately wanted to get back too as they did not have anywhere to go and had been sleeping outside under the oak tree. 

    There has been a mini mafia restaurant open down the garden in the evenings to help the homeless and also paying customers. it shuts about 3am and unfortunately this was when pedro went out last night. he noticed them cleaning up and barked much to the dismay of the hubby who tried to quiet him to no avail - oops a forgiveness pressie to neighbours maybe needed!!! 

    did a little more painitng yesterday well a tiny bit so the porch is getting there may try a bit more again today. 

    was talking to my next door neighbour yesterday who had the same tonsil cancer when she was younger. hers had gone into the jaw too and she had had to have some of her bone removed. i mentioned i now get really dry mouths with som difficulty swallowing and she said she does so it is amazing that my disease is similar shows how hard it can be with diagnosis. (alongside the fact they had to send my iopsies for a second opinion). she also still gets a lot of saliva but not the thick sticky stuff just the stuff that makes her dribble! she is quite amazing since hers was about 30 years ago. 

    well at least despite the weather it is not cold so the sun may not be out but it could be worsee so keep smiling. xx

  • morning

    another gloomy looking day but actually not cold so we still managed to sit outside this morning with the dogs and the neighbours popped round for a quick natter and Ferdie offered to take me to the hospital tomorrow with hubby to save me driving. 

    hubby is getting a little worried about the footie this afternoon lol but i think i may just watch some wimbledon!! i didnt get any painting done yesterday so i should try to do some today but have no energy or insentive, thats the hardest thing sometimes getting motivation. 

    work has been great have furloughed me for july so i have a month to get organised as i have to get back to work soon. 

    no news on the mini mafia front today think they are all resting after the manic building they had to do to strengthen the foundations of the hotel before they can repair it. 

    take care and keep smiling x

  • evening 

    hope eeryone is well and doing ok. Hope to hear from some of you - just hoping you are too busy catching up on lost time thats why you dont reply. Al and Sam? 

    well its been one of those days - it was another D day for me this time at the thoracic clinic. Very nice consultant quite young, had already planned before hand what he wanted to do rather than discuss with you but thats ok it was what was needed. He discussed the biopsy results and that when they stained the biopsies they didnt find any infection or bacterium which would indicate TB or other infection so they are a little nun plussed!!! what a surprise. what he said was that the granuloma had the necrotising centre so was not characteristic of sacoilides so as a consultant responsible for the lungs they wanted to make sure it still is not TB. This meant more blood tests done today, will have to go back for another more specific TB one and then i had to have a chest xray this afternoon. I am now going to go for a CT on my neck and chest because the areas are still visible and feelable! then if nothing comes back concrete they will go back to ENT and discuss with them what next. Hes hoping to get this done in the next month. My chest xray i think is ok a few nobbles i noticed but i dont have the capapbility to read these xrays well so not sure probably fine and the radiography took it of screen as soon as she realised i had seen it!!. he said he would let me know and i had a missed call whilst i was on my way home. to be honest i have given up worrying now what will be will be just want an answer if it can be cured or not. 

    for now iam watching wimbledon and resting. neighbours offered to take us out but i am exhausted after everything. hahaha put wombledon down lol definately tired!! 

    keep smiling xx

  • morning all

    what a glorious day it is the sun is shinning and i am being lazy!! yesterday took it all out of me so tody i plan on nothing !! well we are due to go out with the neighbours tonight so i have to be uo for that. 

    hubby is entertainng the dog in the back garden and shugs is chewing his bone. 

    the mini mafia has started repairing the damage to the hotel they have no excuse today because it i dry and not to hot!! however, not too sure how much will get done but they can work hard when they want to and the manger is cracking the whip!!

    Missie had another date earlier than expected he took her to the rat rock for a boogey and she enjoyed it. (secretley she was unsure because rock was not her usual type of music so she was a little nervous) but they met hhis friends there and they accepted her and made her feel at ease and she began to enjoy (some) of the music. they plan on going back next week. 

    thats it for today enjoy the suns healing rays and keep smiling x

  • morning 

    what a lovely day today i have actually got up early - goodness knows why since i am tired but there you are!! have put out some washing and got some more on - wow - energy yay!! 

    going to see if i can do some weeding in the garden with the dogs whilst hubbby waits for wheel chair man to come and sort his wheel chair out. some of the sweet peas i had got before the ddead ones have come out in bloom and are lovely the sweetcorn has sprouted and so have the weeds lol. going to concentrate on the path so it looks better. best laid plans and all that we will see ...

    mini mafia managed to get quite a bit of building done they oput up the roof and main supports and are now constructing the internal walls. the manageer is pleased and going around with a huge grin on his face as the anxiety eebs awway. the children are getting excited about the possibilities of a new home and running around inbetween the builders who are shouting at them to get out of the way of moving sticks and mud parcels. the children have already decided where they want theior bedrooms! 

    outside a summer BBQ is being planned for tomorrow night for the neighbourhood a bit of a summer carnival. its going to have lots of lorries and procession that goes all the way round the field and up the road. There is going to be a couple of corn roasts,m bread dippers and summer cider. its all hush hush at the moment and nothing is being given away until tomorrow. 

    enjoy the sun and stay safe. keep smiling xx

  • Morning

    It must be so frustrating not knowing what's causing your illness Elona hopefully they will figure it out soon, are you still on medication, all ok here still have pain in throat and blisters in mouth but I'm feeling a lot better in myself and its only  been just over 2 wks so the radiation has only just finished working so hopefully the healing will start now, glad to hear the mini mafia are back at work and the bbq sounds lovely hope you have a fab day

    Allison x

  • Hi 

    hope eveyone is having a good weekend. 

    Lovely to hear from you Alli glad you are feeling better , hope the blisters and sore mouth clear up soon. 

    consultant mentioned sarcoidosis a rare disease to me there is no cure but it can go dormant and have flare ups, some people can recover and a very small percenage go to stage 4. i looked it up and fit all the symptoms to a T so i joined their face book site and it sounds more and more like me - unfortunately it is not well diagnosed - sign - one of those and is often missed out or ignored. thankfully my consultnt knew about it but seemed to think it was curable so even his knowledge is debaitable. no news fromxray so chest is obviously fine so just waiting on CT now. yes on pain killers and anti inflammatories, hvaing to keeo the dose high so that does not help with the chronic fatigue. 

    mini mafia are all getting ready for the BBQ and carnival, the "boats" are looking fanbtastic and very colourful. one floral display has been pinched from the garden and consists of a lot of oxbow daisies surrounding the king and queen seats. some patches of next doors lawn has been dug up for the flooring. (not sure the neighbours are impressed with their lawn at the moment - wll we know why!). there is b oat made out of litter dumped by cars so it consists of macdonald bags blown hoisted up as parasols, tin can tables, sweet wrappers table cloths and bubble wrap chairs that are covered in moss and really comfotable. the rock dudes have of course a cool looking boat with their leather jackets, sun glasses and huge music speakers blaring out already even before theings ahve started. you can smell the start of the BBQ fires now even thought htye too are early - its not kicking of until 6pm tonight. 

    we cancelled the neighbours tonight the hubby wants to watch his footie and ia m too tired so it suits us we said they could come round monday or tuesday instead. 

    managed to get some gardening done yesterday and that pushed me over the edge lol serves me right!! 

    well have good day stay safe and keep sminling xx

  • morning 

    bit more gloomy today and we had a litle rain last night but not really enough to water the garden as required. 

    mini mafia had the most amazing summer carnival boy they rocked!! the girls all worm 60 esk dresses with the fullest of skirts and huge waist belts to accenuate their figures!! lots of floral prints and bright colours - you needed sun glasses!!!. there were amazing floats and a surprise one hidden undder wrapps by the Americal crocodiles who made one look like a swamp with ice mist machine and creeping ivy hanging down from the ceiling. it was decreed creepy because every now and then all the rats could see was either a face and beedy eyes, a claw comng through the mist of a tail swipping down. this float was the best design so won a prize of a large barrle beer!! Grandpa was part of the judging and had the final say. there were a lot of aaaahs when the nursery float went past and showed all the families little uns in their cots and play pens laughing and gurgling happily. the fire brigade went past on their lorry and  sprayed water everywhere people screamed with delight. the food went down well the roast corn was yummy and juicy and went in seconds! strawberries were picked from the garden and given to each person with either a cream or chocolate topping. like most mafia events it went on until late - the kids didnt mind missing their bed time lol and they all went home happy to meet again today to begin the clear up.

    i on the other hand am  not aiming on doing much today maybe a little painiting - feeling a little more with it today so thats promising. 

    habe a good day keep smiling x

  • morning all

    hope everyone is getting there. 

    another glorious day contrary to weather forecast! managed to get ten mins gardening done with break so pleased nearly weeded the path amongst the veggie poatch - really pleased. going for rest now then may do a little painting. this porch area is taking fior ever lol. 

    the jackdaws were on the birdtable have a right squabble lol they only just fit on there it was quite amusing , - makes you realise all species are really quite similar in their behaviours!!, they all have the family reactions to each other and against each other we call jealousy we think they call resource! its like us putting words into other peoples mouths what we presume sometimes. 

    other good news hubby thinks he aw hedgehog poo last night that would be great if the little uns have come back to visit. 

    anyway have good day keep smiling xx

  • morning - boy the weather has changed - its actually cold!! just when i had put the jumpers away lol. hope everyone is wrapping up warm too - very important as part of recovery keeping warm. 

    pedro has a new toy - a friend brought over some hedgehog supplies she had been gathering for us and gave him a squeeky aubergine - it is a hit he would not stop retrieveing it even with the new chewed top (am expecting that to come out the other end lol). 

    the plants have gone nuts again the wisteria reminds me of the triffids with their creeping tentacles. i took a photo of hubby dozing in his wheelchair in front of one who looked it like it was creeping towards getting him !!

    no news from hospital yet - aparently can take for ages to get diagnosed especially when not straight forward sign the waiting game is being played. 

    keep safe and keep smiling xx