Newly Diagnosed -spouse diagnosed with Retromolar Trigone cancer

Hi Immy

itbis indeed a small world ,one of our people is in Guisborough and 3 others in Stockton. They all speak highly of the head and neck teams there and the Macmillian team so you’re in good  hands. My treatment was at Leeds  cancer centre and my oncologist is brilliant he never made me feel rushed he gave me as much time as we needed at each appointment. Ok that means somethings he’s running  late It’s learnt me one thing when I go for my regular review niw at ent I don’t stress if I’m running behind. I now thjnk the ooor person who has been in front if me is possibly getting the bad news I got in 2018.

One tip that I use is I type up my list of questions and give the consultant a copy, they them are aware of what’s to come it works for me so worry a try. 
Yes know Redcar well we used ti walk from Saltburn or someday s from Skinningrove  beautiful part of the world.  We’ve still got friends in the area.Hope  being jn touch with Dani and I you might get a better sleep tonight. 
Hazel xx

Hi Immy

I am very sorry to hear about your husband’s diagnosis. It is a real shock when cancer comes out of the blue when you have lived a healthy lifestyle. Waiting for a treatment plan is hard but be reassured that your husband’s medical team will do their very best for him.

Hazel flagged me in her reply to you as I have had 3 operations in relation to jaw cancer over the years although my diagnosis is not the same as your husbands.

Over several years I have had a partial mandibulectomy (removal of part of my lower jaw on one side) but I did not need reconstruction for this op. I have also had 2 maxillectomies (removal of my upper jaw) with a skin graft taken from my forearm to cover the roof of my mouth.  I am currently waiting for reconstructive surgery so I can have implants attached into my cheek bones that a denture can be attached to. I have also had 2 lots of radiotherapy.

I have been on this path for a while now so have the advantage of having plenty of time to adjust to the changes in my life. I am living a happy and fairly normal life with one or 2 adjustments around eating. There is definitely light at the end of the tunnel after jaw surgery.

Wishing your husband all the best for his upcoming treatment.

Lyn

Hi Lyn

Thanks for your reply. It's very kind of you to use your time posting on here when obviously you have all your own issues to deal with.  Although you say your cancer was different to my husband's, from an initial response from the consultant, it seems he will have to go through similar operations if they can help him at all. It all depends on the scans.   We thought that diagnosis day last  Wednesday was the worst but we are now going to have to meet the team again to find out what is on the scans and that is actually more terrifying.  

We are trying to think along the lines of it might be treatable but the mind can be your worst enemy and I keep imagining they are going to tell us it is not. How other people face this we cannot begin to think. He's 66 now but we have only been retired a few years. He has other medical conditions as well, although these are well-controlled and he is a fit person. If you are younger you probably stand more chance but you never know eh?

Like others on this forum, it is the agony of the waiting which makes it so much worse and you just feel how can this be happening to us.  Never mind, life goes on I suppose somehow no matter what  is in store.

I am so please that for you at least, you are currently happy in your life. From what you have said you fully deserve to be after what you have been through.

Thank you

Jan

Hi Hazel

Can you tell me why they treated you at Leeds instead of James Cook?   The MacMillan team do all seem very good at James Cook and I think if they can do anything for my husband they will do their very best. It seems you had all your treatment several years ago now.  Since then, of course we have had Covid and the curent huge waiting lists. They did say that if they could offer treatment then we wouldn't have to wait long.  It's the quality of the ward experience  though we are also freaking out about eg will he get Covid or sepsis if he can get to the recovery stage? A lot of people we know have not had great experiences over the last few years and a young ex-colleague of mine actually died of sepsis after  the minor operation she originally went in for.   I am a right misery I know Hazel but I am grateful to you all on this forum in trying to help.

Jan

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Not Hazel but I can say if your husband is going in for major surgery the hospital will do their utmost to keep him safe. Are all his covid jabs up to date? Keep him safe and away from visitors before he goes in too. 

Hi Jan although my hubby worked at Boulby and we temporarily lived up there  renting for  years but kept our home  in West Yorkshire .When John retired we just chose to move back home.
Leeds cancer centre is my nearest cancer unit that offered radiotherapy my local hospital Wakefield has no radiotherapy machines. Steve the guy both   Dani and I know from Guisborough was treated in May 21 in the height if covid and several times he was admitted for various issues into James Cook. I’m sorry o i hear about your young friend p, please try not too overthink the  hospital will do all they can to mitigate circumstances.

Being a right misery is totally understandable it’s human nature and the fear of the unknown. That’s why we stick around on the forum to help other. Please pop on any time usually somejnes around up to 2300 ish. One or 2 during the night sometimes. Lynn from Australia is a great example of getting on with living she’s on her 3 rd major jaw surgery and a fab asset to us all 
hugs Hazel. p.s

 Lyn from memory was 59 she’s now coming up to 69 xx

Hi Hazel. Oh! I see. I was thinking along the lines that James Cook sometimes send folk to Leeds for these ops. Thanks for explaining.

If  my hubby and me can ever be as happy as you and Lyn seem to now able that would be our dream come true.

Jan

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He's had all his jabs so that's a bonus. i will take your advice as well and keep him away from visitors beforehand if he has the chance of an op.

Thank you

Jan x

Hi Jan No problem,it’s the waiting that eats away at all if us in one way ir another. Day before my final diagnosis our daughters birthday we went to Chatsworth flowers show , a poor lady asked me to sponsor  a rare flower. I retorted sorry I will be dead next year I’ve got cancer poor lady was distraught.I didn’t even think before opening my mouth

. Is it Wednesday    at James Cook? Please keep us in loop will do what we can to help. Dani’s advise is goodI had chemo an the week before each treatment hubby put me and him I to quarantine and that was before covid ! Inwas at Leeds every day for 35 days Monday ti Friday a 90 min journey one way some days.
Hazel  

Hazel - in the situation you were in  you aren't thinking straight and I'm sure the Chatsworth lady would have understood even if you wilted her flower!

Tuesday we go for MRI. Had CT yesterday.  Then the  Tuesday after is result's day.

From what you are saying about your chemo every day for 35 days! that's another potential worry for us. I don't drive but so wish I had learned now. My sister has said she will give us a lift when she can but you can't expect someone to commit to every day for weeks. 

There's a train goes from Redcar to James Cook but not very often and it's quite often cancelled.  As for the buses, I would have to work those out but there will be 2 to catch I think.   We will have see if we are 'lucky' enought to get to that stage.

Jan

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