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Tonsil Cancer - Whirlwind Week

DragonFach
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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!

  • Offline in reply to samsamtheambulanceman

    Yes I imagine it is a bigger advantage, hubby's 60.

  • Offline in reply to samsamtheambulanceman

    Hi 

    Sam am over the moon that you are all clear that is fantastic! you certainly must be on cloud nine. 

    Judy hope your hubbies scope goes well on monday but glad he seems to be doing ok. 

    Glad your doing ok Alli. 

    am now being sent through haematology because CT scan showed enlarged lymph nodes on both sides  so they want verification it is not lymphoma nut thankfully they are pretty sure it is not. they say I have now got latent TB so if haematology agree it means six months of treatment. so on the up. 

    hope everyone is enjoyng the sun 

    keep strong and keep smiling x

  • Offline in reply to Alli53

    Hi Alli, 

    just wondered how you are doing Have you had your MRI scan yet?  The thread has gone quiet lately so not sure what's happening, I wonder about Dragonfinch too.

    My husband has an appt with the consultant on 27th Sept and he's going to organise his scan then.  Fingers crossed we all get positive results.

     

    take care

  • Offline in reply to JudyS

    Morning Judy

    Lovely to hear from you, I had my mri on 31st August and got the results while I was on holiday last week and it was clear there was no sign of the tumour so a great end to the holiday, I'm still having problems though mouth is finally starting to heal but now have lymphedema and awful heartburn but I guess it will settle eventually. How is your husband feeling hope your both ok, let me know how the scan goes ill keep everything crossed its clear but I'm sure it will be

    Good luck and take care

    Allison x

  • Offline in reply to Alli53

    That's fantastic news, really pleased for you

    hubby has lymphodema too in his neck, we're waiting for an appt with the lymph nurse.  He found a swelling just below his ear the other day which is tender and concerned him but it's gone down a bit now so hopefully it's nothing serious.  We did contact our CNS and she was going to speak to the consultant to see if he wants to bring his MRI forward so that he has the results for his appt on 27th but we've not heard back from her!  We only have this week then we go away for a week so I doubt we'll get the scan any earlier nowHe's eating and drinking fine but still having 3 ensures a day for the calories.  

     

  • Offline in reply to JudyS

    Hi Judy

    It's no fun all the waiting I had my mri earlier than expected as I only finished treatment 16th June, good news that your husband is eating normally and the ensures are great they are full of vitamins, I think recovery takes a bit longer when you get older I'm 53 and I was doing really well but I'm having problems now I noticed it was painful below my ears and jaw now I have swelling under my chin which is worse early hours and in morning and makes it difficult to swallow I'm going to the Maggie centre in clatterbrige on Tuesday so hopefully will get some advice about it I've also lost hearing in my right ear, I sound like I'm falling apart I'm supposed to be reassuring you lol I really do feel good in myself, try not to worry and have a lovely holiday

    Take care 

    Allison x

  • Offline in reply to Alli53

    Snap! He has also got hearing loss in his right ear (the same side as the cancer) I've just made an appt for a hearing check with the audiologist, he says it's like they feel blocked.  He finished his treatment on 18th May but from what I gather from other peoples experience he's had more chemo, (2 cycles consisting of 6 hours of 2 drugs then 4 more days of continuous infusion via pump at home, 2 weeks off then same again. After that he had 2 more cycles on day 1 and 21 of radiotherapy.  He's loads better now and actually starting to get back to 'normal' but obviously we can't completely relax until we've had a positive scan. X

  • Offline in reply to JudyS

    Hi Judy

    That is a lot of chemo no wonder its took a longer time to get back to normal, I was supposed to have 2 rounds of carbaplatin but only had one on the first week because it made me so ill I was in the hospital for 5 days to get a flare of my ulcerative colitis under control the consultant thought it would just make me ill again so I just had the 1 and 30 rounds of radiation, I think in most cases the hearing loss is permanent so they will probably give him a hearing aid I've just had mine and its been a godsend I was driving the kids mad lol

    Take care 

    Allison x

  • Offline in reply to JudyS

    Hi Judy

    Hope it was good news when you went for appointment, how are you doing

    Allison x

  • Offline in reply to Alli53

    Hi Alli

    we feel a lot more at ease after the appt, he had a couple of worrying issues, one was a lump/swelling on the same side as the cancer under the jawline and the other was a couple of small lesions at the back of his mouth but the consultant thinks the lump is a blocked saliva gland damaged by the radiotherapy and he wasn't concerned with lesions at all.  He had a good look down his throat with the camera and is happy, he says there's slight radiotherapy changes still there but even to me it looked healthy.  The deafness again is probably the chemo, he has an appt with audiologist next week.  He had his MRI yesterday too and we are going back for the results in 3 weeks, it would have been sooner but we are going to Malta in 10 days and I don't think they'll phone with results as we have always had face to face consultations with everyone from the start.  Thank you for asking, hopefully we will get the news we want xx

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