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 

    What a lovely surprise to hear from you Sam glad your doing ok and last of treatment finished. Hope things settle quickly for you and swelling goes down and eating eases. 

    Alli glad you have day one over and done with I expect sometimes that is always the hardest. Hope the unusual sensations settle and you are ok today. 

    Al fantastic news you have the ng tube out hope you are now eating ok. I am so pleased have you all in my thoughts constantly. 

    My plants are being transplanted but not in garden yet either due to the unpredictable weather cannot be trusted with all the hard work growing the plants in the first place. Did order some more bedding plants yesterday for £9.99 for 72 garden ready plugs Suttons so hopefully i will have loads of colour this year have the need for colour lol. 

    Today the skip is here so hubby and i are going to try and move items into it little by little., Thankfully the end comes down so it makes it a bit easier getting the items in. 

    Hubby informed me of mini mafias family tree this morning he had been doing a bit of geaneology and it trasnpires that they come from France, Germany, Russia so they are planning a multicultural party late summer when travel bans have lifted. Should be a ruckus! The worry is if they invite the American cocodiles as well !

    Well caught up with a good friend i have not seen for ages on the phone today. Had a lovely conversation hoping we can catch up properly some day. She owns a GSD x Malamute who used to love walking with Shugs and Pedro. 

    hope everyone has a good day 

    keep smiling x

  • Morning and a lovely wet weekend! 

    so glad the garden is getting watered and i have an excuse not to do much as back is aching from filling skip yesterday/ I got a text from some people at work saying they are coming over to see me next saturday so really looking forward to that but also worried place will look a real mess. Put up the watering can it looks quite good just a shame the lights were not long enough for where i wanted them to go. You can get fountain lights which would be better ( i9 had curtain lights) but they seem to be only solar powered which i did not want. I also suggest if any one tries this to use a plastic watering can as the nozzle is further up the can neared the top. I tried with a metal one and it was impossible to get the lights down the nozzle. 

    I have also finished the floor finally in dinning roomarea wow that has taken ages!! Hopefully get some things back to normal. 

    Having a relaxful time this afternoon mexican on the hob and lying on bed with bengal boys and pedro watching Ghost wars on Amazon with Meatloaf in. He actually is a good actor as well as singer. If you like spooky things this is right up your street. 

    Hope everyone has a good relaxing weekend with improvements all round. 

    Keep smiling x

  • Hi Sam

    Took your advice as started to feel a bit nauseous and was so exhausted and miserable yesterday have also no appetite since chemo hope that eases, hope your ok to and are having a nice weekend

    Take care

    Alli x 

  • Morning

    Feel a little bit more human today but still no appetite so that's not helping, I'm feeling pretty down and just hope I can find the strength and positivity to get through this, sorry having a bit of a wobble day. The watering can lights are a lovely idea think I could do with some lights in my garden to make it a bit more sociable. Hope your ok Al and still trying lots of different things to eat you were brave taking the tube out

     

    Hope you have a lovely day

    Alli x

     

  • Morning apologies i did not reply yesterday but spent the day in the garden.

    Alli dont worry you are bound to wobble and feel down with chemo Al was the same. just try and think positive and see the good in everything find things that make you smile and remember hope there is light at the end of the tunnel that gets brighter each and every day. We are here for your wobbles every day. 

    The sun was lovely yesterday i had to get outside but it took all day to do what i wanted with hubbys support. We even had coffee outside and sat outisde listening to the birds in the evening. Feel it this morning though!!! We then had tons of rain last night so i weeded one bed this morning and it was great the weeds came up easily shame cant finish the job. 

    mini mafia have been sneaking around recently hubby has caught the backsides of a couple each day and there has been eveidence of their presence. the rumours are the war plans are coming to fruism and will start any day. Next door informed me she had also seen two running between our gardens. they appear to be residing under her shed and the two she saw are the scouts. 

    Have left my plugs uncovered for the last couple of days to adapt now to the weather, especially as the sweetcorn and butternut squash need to be planted soon. Some of my flowers are also needing planting so exciting if they take. 

    lights are definatley lovely in the fgarden they do bring something to the garden. i have adjusted my watering can and it now looks better and even managed to get it onto a laburnham branch so it hangs down nicely. Worth it and you can get some quite cheaply now. 

    Hope this week goes well for you Alli and AL and Sam you continue improving. Bet Al you are feeling better with no tube now hope the eating is still ok. 

    keep smiling x

  • what a day thought you might like a laugh! 

    Decided to paint spray the chimney iam now working on and had obtained a fire proof black aerosol to use so when i had sat down i felt like trying it out! 

    for the next hour or so we had to sit outside with doors and windows open as it stank the place out totally strong fumes i just breathed in lol and can still taste in the back of my mouth lol. so shivering (as it is now getting dark and cold) we are pacing outside looking like two idiots because i had sprayed the chimney black!! 

    Next Tesco arrive with the delivery thats great no problme i unpack and put everything away and we finally sit down to watch the television. I finally get up to a winging dog who doesnt understand why i have not gone to bed yet and walk into a kitchen disaster! a lovely fresh white loaf for the ubby lies half eaten on the floor still in its wrapper i hasten to add with bits and pieces spread daintly over the place - mummy we have rats i am told hmm i said they dont come in the house - this time i know it is not the mini mafia but Pedro the thief!!! he has finally sheepedly come to bed and curled up with full tum for a snooze! 

    night all x

  • Hi Alli :happy:

    The chemo does sadly affect your appetite and mood, but you will find the strength and positivity.  Some days you have to dig deeper than others.  And some days you just don't feel like digging at all and that's ok.  Some days it will feel like it will never end, but it will and it does.   You will get through this and you will come out he other end a stonger person.

    On the really down days I would watch things that make me smile and laugh even if I didn't feel like smiling or laughing.  I would also rest or sleep as much as I could, sleeping would make the day go faster plus the body is going through so much right now it needs all the rest and sleep it can get.  In the beginning I would fight the sleep as it felt wrong at 2 in the afternoon to be snoozing.  Your body does most of its fighting and fixing when asleep, so I soon allowed myself to listen to my body and sleep whenever it wanted, no matter the timme of day.  

    Also I expect you have been told to drink plenty of water.  I was up to 3ltrs a day and still am.  Definitely made a difference.  Dehydration can make you feel down too.

    You will no doubt get lots of advice, but we are all different and you have to do what ever works for you.  Just remember that we are all here for you.

    Be Strong, on the wobbly days we will be strong for you.

    Al x

  • Hi Elona :happy:

    Sounds like you have been having a busy time of it, black chimney, mini mafia, half eaten loaf of bread :laugh:

    Its been raining so much here we've had no chance to get out into the garden, though we have notice another couple of eaten plugs Grrrr!  We did manage to get a bargain from Facebook Market Place...  We wanted bubble insulation for the shed conversion, I had priced it at £167 to do all the walls and the roof.  Found a 50m roll on FB for £40 a couple of miles down the road!  I do like a bargain.  Now we just need a decent week or two of weather so we can take everything out of the shed and start actual work on it.

    I repotted the herbs, but they are still inside.  The plan is to keep some inside and the rest to go outside, again just waiting on the weather.  Its at times like this I do miss living on the south coast of England.

    Not eating as much as I should, lost over a kilo in the last week.  Not enjoying food at all, eating because I have to rather than wanting to.  Spoke to dieticians yesterday and she told me to purchase full fat milk to drink, a pint a day.  Seems like my tatse buds have taken a break from getting better.  Going out for a meal with two of my daughters on Saturday, goodness knows what I am going to order.

    Off to see my oncologist today.  Before treatment I had a lump on the back of my head which I thought was just a fatty lump.  Strangly it disappeared during chemo and radio, but now it has started growing back.  There was amusingly a lot of interest in it during treatment.  They now want to check it out as neither chemo nor radio should have had any effect on it.

    Stay Strong

    Al'

  • Hi Sam

    I never got to ring the bell.  There was one at chemo and one outside radio, I didn't do my last chemo and I was hospitalised with nutropenic sepsis two days before the end of my radio.  So I am so glad that you rang it so hard :happy:

    So good to learn that you are coming out of the other end, I think that you had a much rougher journey than me through the treatment.  Hopefully your post recovery will be much smoother.  I removed my Ng last Thursday, like you I had to be bolt upright with it, and lost over a kilo already, not that I mind too much as I could still do with losing a few pounds :laugh:  Told by dietician yesterday to drink a pint of full fat milk a day for the protein.  

    6 weeks to PET Scan is quick, I have to wait 4 months from the end of treatment which leaves me 3 months from now...  Yet another waiting game, although ENT did say that visually it looks like it has at least retreated.  My tonsil and lymph nodes have definitely gone down.

    I hope you mucus buggers off soon, it is an absolute pain.

    Here is to our recovery, may it be sooner rather than later.

    Be Strong

    Al

  • Afternoon

    AL hope the oncologist trip is ok and the lump nothing to worry about. You have been through enough. Sorry about the taste buds thats a pain on Saturday go for the sickliest and sweetest thing on the menu lol that will prevent loss of pounds. I could do with loosing your kilo!! 

    We have been incredibly lucky with the weather these last couple of days it has been lovely and so nice to have the energy to get into the garden. Hubby came and sat out with me whilst i weeded some of the veggie patch. The sweetcorn and butternut squash are now planted in the garden. Celeriac are still too small and yakons have not arrived yet. 

    Got through 6 more bags of compost to help raise some beds. Unfortunatley this mnice day was slightly tarred by reversing into the corner of the skip when i got home yikes!! broke the light cover thats all thankfully. Scellotape emergency fix. typically skip was removed half an hour later!!! 

    Forcast is for us to have some rain tomorrow so if thas the case will do some more of the chimney breast but after last nights fiaasco will not bother with a second coat even though it looks like it should have one. 

    Al what a bargain you cannot beat a bargain especially one on your doorstep! the shed conversion will be great once you start it. Sounds also like you will have loads of herbs to use too. I used to have a herb garden in my old house and loved it but sage was a *** it attracted all sorts of midges on summer evenings and i used to get bitten a lot so they are limited here! 

    Alli hope alls going well and you are over your wobble. take care we are here for you. 

    Sam hope the recovery is going ok

    keep smiling x