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 Jake 

    Firstly and most importantly try not to worry, easier said than done i know so I will give you a couple of positive points to start.

    Neck cancer is rare, even more so in someone so young, you have youth on your side.  9 out of 10 people with initial symptoms come back negative.

    Make an appointment at your doctor to get it checked out by a professional, this is important.  

    I am just in the process of starting a blog site with my lovely friend Elona.  The site is live whilst we build it.  On the site you will see my journey from the point I first noticed something though to seeing the doctor.   There is a lot more to add to that page yet, but there is enough to answer your questions so far 

    Go to www.neckcancerjourneys.com  Then click on the My Journey tab.  

    Keep us updated Jake 

    Stay positive 

    Al

     

  • Hi Elona

    Sounds like you are busy, busy, busy, which is good.  Vision of  you feeding the animals made me laugh :happy:

    its lovely watching wild birds visiting and interacting on a bird table, they don't take long to find a new one.  Soon the whole neighbourhood of  feathery friends will be visiting.   Hubby did a lovely thing there. 

    My better half ordered 125 bulbs and 20 pots on Monday, bulbs due delivery April I think.  So looking forward to the spring garden.  Next on her list are some more garden lights.  My next job is to fix up the old front garden bench... I say fix up, more like rebuild.

    love your last sign off... 'Happiness keeps you positive'  

    It sure does :happy:

    Al

  • Hi Al

    misty morning here but thats fine as i can finally get spare room back to some normality - or start. 

    dont know about being busy lol just keeping myself out of mischief! and occupied whilst i wait and wait ...

    having a lazy hour at the moment before i drag myself up the cats dont mind though they are keeping me company. Thats the thing isnt it relax and rest is a great healer. 

    love the ideas for the spring your wife has the right idea - lots of colour. i have got to sort my garden out it needs some colour too. i did order some veggies to grow - celeriac, sweetcorn, butternut squash and some yacon a weird root veggie i took an interest in trying. i was going to grow courgettes again as we both love them but last year we had so many we could not eat them quick enough! 

    there is now the fattest pigeon on my bird table lol. he only just fits cheeky monster!

     hope the chemo/radiotherapy is going ok

    keep smiling it brings out the happiness

     

  • hi Jake

    I am glad you found us here and Al who is brilliant. As he said a lot of lumps are not cancer so there is always hope and even if it is you have to have hope always. I have a lymph mass and it was connected to my tonsil so I had a tonsilectomy. In my case I am lucky at the moment they are considering infection being left in my neck but iam awaiting test results. Like everyone you go through a whole mixture of emotions and I think we constantly think the worst - try not too. You wont know untik you get a doctors appointment. Anything like this needs to get checked out. please do. 

    take care we are here for any support

  • Hi Elona 

    I know where to come for my veggies this year.  I built a potting and planting table area in the garden last year for my wife to have a go at growing some veggies.   I wanted to use the bricks to build a bbq and pizza oven  but I lost.  To be fair she did buy me a shiny metal combined bbq and oven after.  

    I think she tried peppers, onions, tomatoes and some kind of cucumber.  We got a few results, but it was all a bit rushed as we were doing the whole garden.  Time to enjoy it this year and hopefully more success with the veggies. 

    Really interested to know more about the Yakon. Love root veg.  I wouldn't mind having a go at parsnips,  I could eat them all day long and we certainly get the frost here.

    Chemoradio taken its toll a bit this week.  Had a bit of a wobble lol.  Seems I have a rare reaction to the anti sickness steroids, but they were straight on it so hopefully all sorted now.  Starting to feel the radio inside my throat now too.  Taste buds all over the place.  Only food I can taste at mo is strong flavours,  sadly most strong flavours involve spices which I am supposed to avoid lol.  Saddest one this week was going right off cheese, cheese freaks we are.  Absolutely hated it this week... really hoping that ones not long term.

    Onwards and upwards 

    Al

  • Hi Al

    Stay strong and positive as per your moto! You can do it - wont be forever. Sorry to hear about your taste buds and throat you will have to try and be a bit more creative - loads of garlic? very good for you, dark soya sauce if you like chinese things, add tomato ketchup to add the tomoato flavour and thinkening. Hope your able to swallow ok still. What about the parmesan powder ? smells disgusting as i remember it but is quite strong. Hubby and i love cheese too and strong cheese not much point if you cant taste it. 

    Parsnips - yuck!!!!! my mother loved them she used to roast them but i absolutely hate the taste lol probably one of my worst veggies lol. Suttons have dispensed the veggies so will let you know re the yakons. Last year i grew tromboccini think thats how its spelt very suggestive looking vegetable lol but tastes like a slightly more solid courgette they were yummy. Do love being adventourous. You will have to tell me what your wife decideds to do. 

    Got annnoyed with our doctors this morning needed more meds and went to collect - chemist is about 15 mins drive away when i got there they were missing my painrelief. The doctors had not done it because i had asked for an increased amount and they had had the message since monday grr just about got enough to last until tomorrow. I am begginning to think that unless you are "important" you do get pout on the back burner. 

    take care 

  • Hi Al

    Well got my telephone call today ! 

    the consultant said they had to get a second opinion but it is not cancer. They think I have TB lol how funny is that looks like i will be going through a long journey to get better too so will be pestering you on here as much as I already do lol. I am being referred to the respiratory clinic now for further tests because since the biopsies are infected it is still fairly serious. Got to laugh but sad because i will have to ask the charity to look after jy hedgehogs for a while. 

    on the positive side - gives me an excuse to stay on the ice cream for the time being!! 

    on the bad side - my brother phoned and thought I was my hubby because I still get the husky voice!! - excuse was he was outside in America - hmmm 

    Hope your feeling bit better this evening 

    another food - the yummy tea cakes mashmellow topping and soft biscuit base lovely 

    take care 

  • well its friday you must be finishing your weeks treatment, how are you doing?

    thinking of you 

  • Hi Al

    Bit concerned have not heard from you, hope you are not too tired, fed up, feeling c... etc. Thinking of you. 

    rain today gloomy here. We trested ourselves to a chinese last night, first time in months and months. It was lovely but this infection has affected me because i cannot like you cope with the spices any more and that is a disappointment. will have to find a way to water down the curry!! - cant have yogurt/cream etc so will mix in with loads of rice lol. 

    take care will check in later x

  • Hi guys. Hope you're both OK. 

    Some positive from your Call Elona. Praying you're Cancer free!

    DF: Sounds like you're pushing the limits. Keep strong and hope you feel better over the weekend.

    Admittedly it's been a strange week or so. I finally finished work a few days ago in a blaze of tears. Having worked full time since I was 18 and 13 of those years within the NHS, I feel gutted having to stop. 

    My mental health is a bit better than it was. I made the decision to end my Sertraline treatment as it wasn't right for me. I was stuck in negative mode, so many negative emotions were having a massive impact on my good lady who has been my rock these last few weeks. My underlying fear still exists but outside Hospital appointments keeping normality is keeping it in check most of the time. 

    Admittedly, still scared about the what if's and beginning treatment. But I feel more in control over everything. Got everything in place, dental is sorted and awaiting to get my Skin treatment also, I go Monday for planning and mask fitting, then 1 further appointment next week and then I guess we wait till I'm called to start which I guess will be the following Monday.

    Been eating and drinking pretty well again. Not feeling sick at the sight of.food since stopping my Anti depressants. Sleep is coming pretty easy again too. Albeit some mornings I'm a bit fearful.

    I have a few hours free this week so I'm going to enjoy my hobby of flying Virtual Airplanes around the UK and Europe

    Love to you both.