Hi Elona

Just wanted to wish you good luck for tomorrow.   I will be thinking of you.

Al

Al 

Thank you. I go in at 12.10 admin tomorrow. No news re covid so must be negative. I have been so careful about isolating too although a friend came round and let dogs out for me. Husband cant walk them in wheelchair. 

I am really sorry yours has come back as T4 having started to invade tissues but will keep positive for you that all goes well with treatment and will be on here for chats if your not too tired. 

It sounds like an array of diary appointments wow its been enough this far lol. 

Strangely I am not worried about tomorrow yet just hope they get it sorted. Covid test made me a bit hoarse yesterday. 

Hi Elona

I hope all went well on Friday and that you don't feel to groggy or in too much pain today. 

I have some good news Yay!  I was called in for a PET CT Scan on Friday, there's a lot of waiting around with those.  If you have one make sure to take something to keep you entertained for an hour and a half.  It takes that long for the radioactive glucose that they inject to do its thing.  

Had that at 10am, left hospital at 12.30.  Oncologist called at around 4pm with results... No cancer anywhere else, phew.  But then he went on to say that they think I may have covid as I have inflammation of small areas of my lungs.

So off l go at 5pm for another covid test.  This morning given the all clear again for covid  yay again.

Of course this does now beg the question 'What is up with my lungs?'

This journey is such a roller coaster  isn't it.

Wishing you well,  be strong 

Hi

Goodness me what a rollercoaster isnt it! good news on the covid - could the inflammation be due to your health condition? My hubbie has a lump on his lung turns out it is scarring so fingers crossed nothing to worry about - good news on the PET scaN. 

well went in yesterday got fast tracked into a private hospital and it was lovely individual room, en suite, tv etc and lovely lovely staff. 

the MRI apparently had shown that everything was stemming from the tonsil so they descided to remove to the whole bad tonsil and leave the good one because as my consultant said in his knowledge it rarely spread from one to another so wasnt worth removing both. 

No cancer cells had shown up in the aspiration they took but he said that didnt always mean anything so the tonisl has been sent away. He was very cautious. 

I ended up having to stay in because my oxygen dropped and my blood pressure highered so they were not happy with me and the night was up every hour to pee lol and feel grotty. 

The throat is quite sore but I have good pain relief for my back already so it could be worse. 

Currently dont need the diet because I have not been able to eat much swallowing hard and feel choked occasionally not a pleasant experience. If I need a feeding tube I am going to be a nightmare as thats scary not being able to swallow. Anyway the wait begins for these results. 

Consultant said I may have to go back for my lump because it has remained red. slight headache and tired so bed day today. 

stay strong yourself and take care 

well three days in and the throat feels no better the pain killers dont last long enough so 4am seems to be the hour of the day thats the worst. So tired still has totally drained me. 

Hope Al you are getting on ok? as you said yourself stay strong 

Hi Elona

Sorry I've not been here for a few days,  fatigue hit...  I  think everything just caught up with me.  

Look at you with your private room, too right too you should be treated like Royalty 

I am so glad that your op went well and that they were able to remove the bad tonsil.  Hopefully they got it all.  And thank goodness your aspirations came back clear.  I expect they'll all be sending you for a PET CT Scan next.  Fingers and everything else crossed for encouraging results.

Its funny how different consultants work different ways.  They couldn't cut my bad tonsil out as the cancer had started to invade surrounding tissue.   I did check with ENT regarding the good tonsil and they confirmed what you said that there is only about a 1% chance of the good tonsil becoming cancerous.   It must have been the morphine after the op that confused the info in my head... that's my excuse and I'm sticking to it.

So still not really sure why they cut it out.  I will get to the bottom of it one day.  Not too bothered though as I do know that adult tonsils are pretty useless. 

I so feel for you right now. I  too had the advantage of pre prescribed pain killers, but was still up all hours with the pain and discomfort.  Looking toward the next hour that I was allowed to take more pain relief.  Did your consultant warn you about day 5/6?  It does get better I  promise you, but I won't lie it gets worse first.  

Towards day 5/6 ìt starts to feel remarkably better, not great but better all the same.  It leads you into a false sense of security and then it hits... Two to three days of 'i want it to stop now!'   But stick with it, it gets better quite quick from there and before you know it its just a bit of discomfort.   I found ice cream a very good soother.   

We saw the oncologist at the cancer centre yesterday (Tuesday).  I now have two specialist nurses, starting to feel quite important haha.  So this is the plan...

... I have to see a special dentist at the centre,  should hear from him today.   If I have to have teeth removed,  which I expect I will,  they will not start Radiochemotherapy for 10 days.  This is to give the gums time to heal.   I have to go in pre treatment to have a mask made and to pre align the radiotherapy machine with my cancer.   

They are hoping to start treatment two weeks Monday.   Each Monday I will have 6 hours of chemo and each week day 10 minutes of radiotherapy.   This will last for 6 weeks.    Also learned that they are zapping nodes on both sides of the neck with the radiotherapy. 

After the 6 weeks I will have another PET CT Scan.  They don't like to talk too far ahead and told me to take each day at a time. 

All goes to plan I will be sent back to ENT after around 4 months.  ENT will keep me in check for 5 years post treatment. 

Oh nearly forgot the chest.  They are going to get some other experts to look at the scans again today (Wednesday).  They still think it is the remnants of covid.  Strange though as I  had two clear tests in 3 weeks and neither my wife or daughter showed any signs. 

The saga continues...

Well this was a longer post than I anticipated, hopefully it'll take your mind off of your throat for a few minutes. 

Stay strong  stay positive... it will get better

Hi Al

so good to hear from you. Sounds like you have a real adventure ahead from the way you describe things i am glad you have possitivity and bravery.

Well am at day 5 and i can hardly eat. you are spot on i wait for the next round of painkillers lol and am still so tired. I didnt get morphine you were lucky lol they expected me from day 1 to swallow tablets. the consultant also said i should eat properly - hahaha no chance! i have ordered some ice cream and more smash lol. 

My neck became infected yesterday only lasted a short while but although it has gone down outside my neck in size is still hard and quite big internally. glad on antibiotics. 

after everything you have gone through am not in the least surprised you are tired we dont realise how stressful this can be even if we do not feel stressed. I think this contributed to my blood pressure alongside any infection present. I have spent this week between a chair in living room and bed. 

rest as much as you can 

A neck like a Cardasian!  lol :laugh:

I came on to find out how you were not realising that you had posted only yesterday pre answering my question, typical woman knowing the answer before the question lol.

Sounds like you are really going through it, I feel for you. Why do they make antibiotics so big? Makes me realise how fortunate I was with mine. That feeling of something in your throat is very common, I still have it now 22 days after the op.  The amount of pain that you are in I think the scabs have come off, I believe that's why the pain worsens after around the first week mark plus having the infection wouldn't have helped.  When do you see ENT again?  I would give them a call, especially if it is preventing you from drinking, you need food and drink to keep your strength up to get better. Promise me you will call ENT as I am worried about you now....  I will be checking.

Talking of weight loss, each time I see a Dr or Nurse they ask if I have lost weight, I answer very sadly 'No, it's a shame as I could do with losing a few pounds', they never seem to see the light side of it.  Looking forward to seeing a 6 pack again, not seen that since I was 18....  33 years ago!

Everything is still roller coastering, I am so tired.   Had a call from both the cancer nurse and the dentist on Wednesday booking appointments for yesterday (Thursday). 

Video call on Thursday morning with Cancer Nurse, Dietician and Speech Therapist which lasted over an hour.  I now have all these jaw and throat exercises I have to do each day. It was a really useful and informative chat with them all.

3pm Thurday I had to go to the fourth hospital this month to see the resotrative dentist.  Thought I would be there half an hour.... Nope! We should have learned by now lol (5:30 we left) .   First he explained his roll and why they remove teeth pre radiotherapy.   Told me that they will have to remove 6 teeth including a wisdom tooth.  He also gave me two tubes of super floride toothpaste (Duraphat 5000) which I have now to use forever and can only be replaced by perscription.  I then went down the corridor to an hygeinist who gave me a filling and cleaned my teeth within an inch of there lives.  They were all lovely.  I am back at the hospital today (Friday) and Wednesday for the extractions.  I did ask if the could do it all on the same day, get it done and dusted, but they said no.  Apparently  thats mostly down to having to have the wisdom tooth removed.

Onwards and upwards!

Take care, be strong...   Call ENT :wink:

Hi Al

EEk the thought of six teeth removed - and i wisodm tooth makes me cringe you are quite amazing. 

No have not phoned ENT but managed a tiny amount of scrambled egg and since it takes 2-3 weeks will give it that long. 

Last night was the worst night I have had kept me awake nearly all night with agony still cant wait for tablet time! 

Another appointment for 8th Feb for more biopsies on my neck lump. Apparently the FNA aspiration was inconclusive so they are going to take proper biopsies under local. Must admit lump has gone down quite a bit so was obviously infected. 

First appointment next thursday for blood clotting screen at doctors. 

Mind you before that have to get car sorted lol been sitting it now has a flat tyre and suspect slow puncture grr never just one thing is it. Have ordered a cheap air compressor from amazon to pump it up to get to a garage. too tired to sort out today. 

you take care and try and rest up. you need your strength too.