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!

  • hi 

    hope today goes well. 

    cold again cannot believe the change in temperature hope you are wrapped up warm and cosy.

    still no news will try booking in a telephone appointment with doctors to discuss my neck sometime. 

    woke up to be snuggled up with the bengal boys so cute - may have a bit of a crook neck due to being squashed to one side ! but they kept my head warm or as suspect my head kept them warm!! Pedro was also next to me bless him and tort is next to radiator. At least that meant he was keeping his distance from Shugs. 

    excitement yesterday some of my celeriac seeds stated to emerge so pleased but still not impressed that none of the butternut squash have. - feel i have been done! the sweetcorn are doing well love watching new growth emerge. 

    went to lift the new bag of corn to the hens and thought this is a little light perhaps i am getting better being able to lift this so was quite pleased until i went to empty into the metal bustbin and discovered the mini mafia had chewed a hole in one side and had eaten a lot of the corn the buggers. no  wonder they have been keeping a quiet distance recently. 

    well not sure whsat i will get done today but hope you are ok

    take care and keeop strong x

  • Hi Elona

    Hope you are feeling better any news on treatment, I had op yesterday to put cameras in to see what they can do unfortunately I can't have surgery the *** has welded itself to my jaw and is to big now so looks like the chemo route, just got wait to be told what's next, any new visitors to the bird table

    Alli x

     

     

  • HI Alli

    Sorry to hear your news but on the positive at least you only have to have one difficult passage chemo not chemo and op. I always try to find something positive out of everything if i can. Reminds of a really really old film I love about a little girl who lost her parents and had to go live with her aunt in a very old house. The aunt didnt want her and there were no children to play with so she made up good stories and used to find good things for the villagers etc. Then one day she had an accident and broke her legs and the villages all rallied round her leaving her pressesnts and telling the aunt all the stories. It might be considered pathetic in todays standards but helps me see the good in everyone and everything when sometimes it can be hard. (think age has also helped mellow me lol). Any dates? 

    no news on me yet sigh so have arrange a telephone consult with doctors for 19th to see what they have to say and think. 

    Had the cutest sparrow today in my garden so sweet. I was over the moon lthough it didnt appreciate my appearance! it tried to shuttle down the side of the garden by the fence I thought it was a baby mafia. !! Wol tells me they are planning a wedding party soon hmmm.

    put out some fat balls on the table and np one seems to like them what a waste but no wonder they were reduced! cant blame the birds if they are rubbish. Trouble is at the moment the wind is blowing the seeds away. However, pigeons have been around as i have seen their silhouettes on my windows through the blinds. 

    The jackdaws are nesting in my redundant chimney again i dread to think what fire hazard that chimney must be lol they come back every year. Think they must be quite successful. 

    Think positive, 

    stay strong 

    x

  • looks lovely outside but things are a bit deceptive. there is a cold breeze in the air, no wonder i have animals cuddled around me. the weather is very disappointing because ilove seeing the new plants emerging and the daffodils at this time of year makes me smile and smiling is an imoportant healing process. I have eventually got some celiarac seeds emerging yay or at least i hope so and not weeds lol. will keep posted. 

    the fat balls have still not gone so will have to replace with seed I think they are putting of the other birds and even the pigeons who are quite suspicious. Not sure how they can think a fat ball is dangerous but who knows. 

    Al hope your feeling a bit better now you have finished your chemo sessions.

    Alli hope your ok 

    have started getting my brain working again it has not been easy with meds but the paper iam writing on hedgehogs is coming along slowly and iam getting quite interested into the ins and outs of pain, fear and stress and pain leading to pleasure etc. understand why we like chillies now lol and why pedro keeps m

    licking his sore. 

    apologies about writing not quite there yet keep making mistakes and having to go back and change. 

    anyway going to do a different small job today 

    stay positive and strong and smile your day away! 

     

  • saw a beautiful male blackbird on the bird table as soon as i had removed fat balls - quite a handsome fella. this morning woke to practically all the seeds gone but it is still quite windy so definately need to get some more. 

    pedro decided to give me a heart attack this morning the hubby left the gate open and he was running out in the road. thankfully a lovely van driver had stopped and he came back aas soon as i called. didnt do my blood pressure any good lol it was 155 over 100 and pulse 112. i have to test at the moment but had been putting it off think it is connected to my neck. 

    the little or rather bu=ig *** is now settled on my bed which i have crawled back into to have a cuppa and chill. 

    sun is shinning again so deceptive looks lovely and would love to go out but its still cold. may do a job indoors. 

    keep smiling and stay strong 

  • Morning

    Wish I was as positive as you I'm in a bit of a dark place at the moment after speaking to the Macmillan nurse, I was asking what happens now and she said it goes in front of a board of experts and they decide whether treatment is curative or palliative I didn't even think there was a possibility it would be palliative and now feel so scared cried myself to sleep trying to be brave but feel so sad, sorry to be such a misery she did say I'm a young at the beginning of our conversation which is good but I'm 53 is that young so maybe she was just describing the process she did say she didn't have my information so she couldn't say what would happen so maybe getting ahead of myself, have to wait till the 14th till I know my fate, hope your ok

    Alli x

  • Hi Alli 

    I know the dark place your in and it is hard but until you know for certain there is always a light at the end of the tunnel and there is always hope always hope no matter what they say for instance there are many new trials going on all the time so it is possible you would be accepted for that. I think the nurses have to give you all the possibilities from the extreme palliative to the curative. I have been reading about my condition and it depends upon where the condition is to living 5 years to not having mmuch more problems. Unfotunately the waiting is again the pain in the preverbial because you wish you could be at the board discussion and be able to have your say after all they have your life in their hands. I remember mine the oh you are having more biopsies then we are referring you on as we dont think you belong to our clinic anymore bit like a piece of meat not do you mind because ...... 

    just try to see that bit of light that always shines at you in the corner of your mind and focus on all the things you want to do then start to plan doing some of those and make a list of all the things you want to eat or have not tried and start eating them because if you have chemo which i cannot see why not then you mayb loose your sense of tast so start enjoying it while you have it. It is not the end of the world it is the beginning of a new chapter in your life one that mybe a pain but one where you still can enjoy life and have the wonderful family and friends around you. Be honest tell them when you are down but look outside see the bees - boy some of them are fat!! all those ladybirds at the moment, listen to the gorgeous bird song and be happy you are alive. I am here with you like Al all the way to listen to those worries and demons we all have if you want and write something that might bring a smile.

    shrug those shoulders, wipe those tears, decide on one thing to wrote a list for. By the way I am also 53 so we are young!!! plan a distracting weekend. 

    i have just planted 220 plug plants am knackered now! they are so tiny and fiddley will be great if they all survive we will have to see. Celeiarc seeds now emerging yay! not sure about the butter nut squash yet though. it has actually warmed up so get out and soak up the rays! 

    take care, smile and stay strong x

  • Hi 

    Thank you again for lovely positive words I e-mailed the Macmillan nurse and she called me back and said that there's no reason the cancers not treatable and to be positive, I think I just took her words literally and practically had my funeral planned so I am looking to the future again and I'm feeling calmer just hope the mdt feel the same, how will it work with you can they give you medication to keep your illness under control or cure it how are you coping, I know what you mean about the bumblebees they are huge my garden is full of worker ones that are black with red bottoms I wonder how there little wings get them off the ground sometimes lol I'm going to invest in a bird table and encourage the robin to keep coming back

    Take care and thank you again for making me smile x

  • Alli 

    Brilliant there you go the positivity of life. 

    i went and got more birdseeds from the garden centre yesterday. The gardden centre is the only place i have allowed myself to go to due to my infection and covid. i actually have not minded not going anywhere am. a person who can obviously cope reasonbly well on my own if i have to. 

    feeling a bit sore after planting all those plug lants yesterday but hopefully if they all grow my garden should be quite pretty this summer. the interesting thing is i dont know what they all are since it was a special surprise packet! i can see some begonias and geraniums but dont know the rest. so exciting!!! 

    in reply to your questions thank you for asking - if it is like TB then yes cytotoxic medications are used and can cure. Have to have them for 6 months. if wengers disease then the same i believe. other reasons who knows i have to wait and see. iam checking vitals to give doctors next week when i spek to her and they seem worse in mornings airflow is down and blood pressure up am( slight hypertensive). not horrendous so removing of tonsil has helped. am very much in limbo at moment. 

    love your fat bees too they are great critters and very beautiful to see. it looks cold today and a bit dull probably because sun is not peeping out yet. will have to ask him why not when i go outside. its the weekend and people at home would like to have a good weekend. 

    have a good day today hubby has bought a nintendo switch a huge extravagons that we cannot really afford but i think he needs cheering up sometimes and he is aching to go out even if to supermarkets lol so it arrives today. 

    we also have a zoom with some friends later to look firward to. 

    my task for the day is a small section of floor to clean so i can make hubbby his cd shelving unit we have had boxed up for ages lol. reminds me of those peopple you hear about that have unfinished rooms for years - well since iam the only one who can do anything this bungalow is one of those !! it will never be perfect and superbly clean after all i sleep in the conservatory but it is mine. 

    have a great weekend now you are happier with your condition and yes invest in that bird table its worth it not just for those birds but for your enjoyment too. Two positives out of one definately a plus! 

    am going to feed the fat pigeon 

    keep smiling and stay strong x

  • Morning

    It sounds like you have a busy weekend planned hope CD unit goes ok I'm a disaster putting things together the wi sounds fun though, its the 19th you go to doc's isn't it hope that they can get you on the road to recovery as soon as possible, feeling an lot better today so think I may tackle some cleaning I'm still in the thinking phase lol

    Hope you have lovely day xx