New & unsure

Hi all, new to this, so not too sure where to post or where to introduce myself.

Am a 44 year old male, who until now has been healthy. Have been through. a roller coaster few weeks 

about 6 weeks ago while having a shave I noticed the left side of my neck was swaollen, I left if for about 2 weeks, then when to see a dr (I was away with work, and accessibility to U.K. Med cover wasn't available) since my visit to the Dr, I have had a series of appointments to include an initial camera down the nose, into the throats where a lesion small was found then had the MRI, with some "sum cells taken by needle" from the lump, followed by a CT & MRI Scan, then Fri just gone, had a biopsy in Southampton.

Now the 2/3 week wait (as I was told on Fri) for a diognosis. not a lot of detail given so far, which I understand other than on Fri when I had the first mention of the C word, and what I may have.

not really too sure what to make of things, I am very practical and worry about work, future promotions etc, where as my partner, she worries about me, the kids, life etc.

I guess i hope to see how other people manage their journey to recovery, see their Experiances so I have an idea what to expect........

 

Original Post

Vinod, 

Thanks for your reply. 

I know its a waiting game now, it seems that my partner, parents and sister are more worried than i am. Maybe its just my perspective and the fact that other than using this website to understand how others feel and what they go through, i refuse to diognose on google. 

Work knows, as i inform them of appointments and my line manager is supportive, but i appreciate that being in the Military makes the work/appointment & possible care path easier to manage that those in civilian employment  

Am still very posative about what lies ahead despite 2 loose teeth as a result of the biopsy and endoscopy 😳

We'll, it's been a few days since I came on, I now have a date to see the consultant, two weeks to wait.

Still not much info as to what it isn't etc, but I then spoke to the Medical Officer, who called the hospital.  She was able to tell me that the lump on my neck is the secondary cancer, and the tongue is the primary.  She also said that I should get all the information I need in terms of treatments etc when I see the consultant Mid Nov.

think after that appt, I will have to tell my family and more importantly the kids.  

So, had the appointment on Thu.

i took a note book with me, but was told not to take notes and just listen, and that the MacMillen Nurse will take the notes for me (which was a relief to be honest) the consultant, who was fantastic (Mr Sipaul) Explained what we already knew about the primary cancer being at the back of my tongue/tonsil and the secondary being the lymph node on my neck. 

I am very lucky that is is early, and after 2 operations over the next 4-6 weeks I may not need any further treatment., but tests will confirm that. Apparently  I have a T2 N2a M0. 

we then met the MacMillen Nurse Nikki, she was nice, gave us a lot to read and we chatted about the next steps, along with advice, and support available to me, us and the family 

for me the next big steps are telling my parents, and our children which I am dreading but know that the support is for them as well as me, plus there and some useful tips and info in the MacMilllen book I was given.

i have an appt next week, to meet the Multi Discipline Team (I think that's their name), so will see how that goes.  

In themean time it's time to start telling those closest to me.  I am so lucky my wonderful partner is there to help me 

I remember my date with the surgeon so well.  It sounds identical to mine.   The surgery isn’t pretty and I didn’t bother researching it I just  got on with it.  

Recovery is as much a mental and physical challenge as it is a medical one.  

I told my entire family in one day and I’m glad I did   I also told everyone on Facebook   I didn’t want people to point and stare so I made sure everyone knew everything   It’s just how I dealt with it   

If I can help further please just ask   

 

 

Thanks Paul for you support.

i Had my MDT (Multi Discipline Team) appt yesterday.  

Didnt go to plan. My lumpy node is now larger than the MRI shows, so it's an N3 not N2a.  Have been given a few options in terms of treatment 

1. Radiotherapy & Chemo only

2. Operation to remove my lymph node then a scone op to remove tonsils and the stuff on back of my tongue followed by Radiotherapy and Chemo

i was given a third option, which is a trial.  It is similar to option 2, but instead of 6 weeks radiotherapy and chemo, it's just 5 weeks of radiotherapy only. 

Have opted for option 3, in the hope that if it can't help me I may be able to help others, I think physiologically, to see everything removed I would be able to see results (if that makes sense) 

i was pretty low, as when I saw the team last week, it was suggested that the 2 ops would be enough, but due to the increased size of my neck the surgery is now more complicated.

my parents now know, then at the weekend I told my daughter as she was with me, (from previous relationship) at 14 she understood more than I thought but have signposted her to support should she need it and not want to talk to me about it.  This weekend my step son is with us, (partners son from previous relationship) he is 10 so like my daughter will tell him then he has time to ask questions over the weeeknd.  Once we have done that, will tell my sister.

i went to the MacMillan "lounge" in Southampton on Thu before my apt, the staff there were wonderful. (Mary & Phylis) It was an oasis of calm and relaxed before the onslaught of all the info at the MDT apt.

despite feeling low yesterday today I feel good again - I will beat this 

My heart goes out to you. And I send special love and compassion to the children too.  They’re resilient but they’ll be anxious.  

I built a strong network to support me and hope you do the same.  I think you know this’ll be tough. If I can do anything at all I will.  Pick me up at my Tongue Cancer Journey page which covers my story and is a place you can chat through pprivate messenger if your on Facebook.

You’ve to fight it mentally emotionally and physically and Going with the new option is a brave move.  I’d have done anything to avoid chemo.  So good call imho.  

Take great care of you and yours.  Keep in touch too.  Sending my love.  Paul 

Just back from the hospital.

Finally have a date for my first operation! I will be having the nick lump removed first, then the second will be the removal of my tonsils & the cancer from the back of my toungue closer towards Xmas. 

Once the Ops are done, they will confirm if I am able to undertake the PATHOS Clinical Trial or not.  Once that decision is made, I will then know if it's radiotherapy only, or a mix of radiotherapy & chem.

i went to a Feel Good Feel Better men's skincare workshop today at the MacMillan centre at Southampton.  It was really good and very interesting. Michelle and her team were really informative, and the selection of male grooming gifts we were given was amazing. It is worth going to if you have the opportunity 

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WOW, looks like my wife after a trip to Boots!  You sound like you are very much on the front foot and tackling this head on.  I hope the family are feeling ok too.  Le'ts keep everything crossed that you get through the surgery smoothly and safely and that PATHOS is the choice.  Wishing you all the very best, thanks for the update and hope you keep us up to date with your successful progress.  Paul

Hi all, 

just a quick update, my tooth which was damaged during the biopsy was removed yestedday (it was a baby one, but no tooth fairy visit 😢) 

Thu is the neck dissection, im a little aprehensive as ive never had an op before (the biopsy was the closest until now) but posative i will be ok to enjoy Chriatmas & new year before op No 2  all is still

looking good for PATHOS trial so am happy about that  

Paul Roebuck & Roots thanks for the encouragement and support!  

 

Well, today I wanted to be able to tell you all about my neck dissection,however last night my first operation w cancelled due to the consultant being unwell.

i am a little gutted, as I was all ready to go, however these things happen and I would rather wait for my consultant than have someone else do the procedure.  

I hope to get a new date sometime soon, but hope I don't have to wait too long.

Hi all,

sorry for for the delay,  work has kinda taken over lately. 

Op now finally rescheduled for 9 Jan, there is now a need for another CT & MRI as the last one was some time ago now.  The PATHOS team are concerned that it may now too big for me to be part of the trial, which for me is a real shame if that is the case. 

The PATHOS team now seem to think that having the Ops if it's larger is not worth it, and that I may as well go ahead and just have Chemo & Radiotherapy. Am not too sure how a feel about that, but I will wait and see how the scans go first.

now time to focus on Xmas & New Yr 😃

Side effects of radio kicking in now, few ulcers, got packed off with such a variety of mouthwashes my gob is rarely empty(lol) so that's manageable but my taste buds are going. Not good, everything has a cardboard aftertaste exept fruit, yoghurt and ice-cream. Just got to think it's not forever!! Happy Christmas All , good luck and hope you enjoy your dinners in whatever form it takes!!

Afternoon all,

time fo. Quick update.  Had an MRI on Fri, in advance of the neck disection which was planned for yesterday, I also had an appointment on Tue to discuss the the results of the MRI

the results have now shown that an operation is now not viable, due to the increase in size and associated risks due it being in contact with my corroted artery.  The past I’ve news was that it has not spread, which is more important. tdthe lymph nodes have only grown so much due to the delays in undertaking the operation (originally told it would be Nov , re booked for Dec then cancelled again)  this will also rule me out of the PATHOS trail, which I was very keen to to in order to help others.

i will now be treated with Radiotherapy and Chemotherapy only.  I am dispointed but given how much it’s grown not surprised and the team are the experts in care! 

I have an appt tomorrow for the mould room, etc and with any luck should start the treatment in about 2/3 weeks.  Like everything I will believe it when it happens now, but know I will beat this.

tkae care and all the best to you all

As a follow on from my apt on Fri,

Have had my mask fitted, which was a strange experience, had an up todate CT scan and the usual bloods height & weight

my radiotherapy and chemotherapy dates have now been confirmed for 28 Jan  - 8 Mar so am now looking forward to starting that.

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