Newbie on the block - oropharyngeal cancer diagnosis , pre treatment

Hi, Roger, yes you have posted in the right place. It certainly is a lot to get your head around, when you are told you have cancer, the overload of information is also a lot to take in. However, once you start your treatment, you will feel a lot better about it all, and you will get into you daily routine. Don't worry about having a feeding tube, they are a really good thing to have, I was 100% reliant on mine for a good few weeks, it was my lifesaver, lots of others on here will say that too.  Be assured that the treatment does give a very high cure rate, many of us are living proof of this. We all know the feelings and thoughts that people have when first diagnosed or going through treatment, and we are all here to help when we can, so any questions you have just ask as many and as often as you want, someone will always help if they can.  

Ray

Hi Roger,

So glad you found your way to our group Sadly we all belong to the same club that nobody ever wanted to join !

Please dont feel guilty about feeling worried anxious and full of fear ..it’s totally normal … there is no room in your brain at the moment for positivity as you are feeling so overwhelmed … beleive me thats how 99% of us feel at the start.

Thankfully these feelings seem to subside once we start tChemoradiation treatment .

Friends and family are all doing there best by being so positive but I appreciate that it’s the last thing you actually want to hear , I had a dear friend who just looked at me and cried then gave me a big hug and said i’m hear for you x that’s what I needed at that time x

I had 8 teeth removed couple of weeks before treatment and it was a traumatic experience, local anestetic and then struggled to even swallow soup .

The PEG fitting is different for us all , I was petrified and had lots of pain aftrr op ( due to pain not being managed by nurse during night) first week was tough but by second week it had settled down then it became like second nature… it was my lifesaver

Treatment is tough for most of us (I had an unusually very rough time , spending majority of  7 weeks of treatment  being hospitalised ,,),, but I can honestly say I’d do it all again to hear those magic words months later that treatment has been a success!

My T4 tonsil cancer was inoperable as too big and too widespread but don’t let that worry you as this treatment has over a 90% cure rate for HPV+ cancers.

Im 9mths post treatment and never thought I could feel like I do today… getting ready for my third trip abroad enjoying my life ( even though I still have my PEG and lots of side effects) Life is sweet .

All the best for the coming months Roger we will be here. There’s always some lovely people on this group to listen support or advise you whenever you need them.

Debbie

Rogerb said:

I have been overwhelmed in the last three weeks with well remaining family and friends projecting toxic positivity which has the adverse effect of making you feel really alone and have also had this from Consultants and clinicians but almost Mike fail that there is no chance of coming through treatments and therapy Unless you are positive which is absolutely the last thing I feel right now.

I am hoping this resonates with others

Hi Roger 

Welcome

Ray’s advice is spot on

I can add that I have always been a glass half full girl  I am a natural born pessimist but I have always consoled myself with the fact that at least I am prepared for the worst and the best is a marvellous thing to be savoured  

My cancer was inoperable too but it was cured with radiotherapy  

I do mention in my blog that even miserable people get cured  

I too hated and resented this optimism thrown at me  

The” you’ve got this, you warrior”  rubbish comes from people who DO NOT have a clue  I really think that oncologists don’t either  

This time is yours  concentrate on yourself  

Come here to talk to us  we DO know

Ray - thanks for the heads up and reassurance. Means a lot at this point. 

Im a typical dad hitting 60 who keeps most of everything to himself and always been a rock for my daughters and everyone else around me. So sharing feelings is a new one on me. 

Regards

Roger

Hi Roger, welcome from me. I’m Hazel six years post  chemo and radiotherapy for tonsil cancer with seven lymph nodes treatment does have a very high success rate  so keep that at the front of your mind the waiting’s  is the worst one you  get started on treatment. Everything falls into place I can’t lie it’s hard. It’s brutal. I was diagnosed if I can do it anyone can fm them . Any questions just ask 

Hazel 

Thank you for your kind reassurance Hazel. 

kind Regards 

Roger

Hi look at my blog shows what u went through. With links  to other sites. 

Hazel 

Thanks Debs

I can’t deny I’m feeling quite overwhelmed right now by the openness and honesty of the responses I’m reading through right now on this thread. 
25 yrs ago I gave up construction to work in care and look after others. I believe from what I was always told I’m good at at although I suffer from imposter syndrome to the max.  Never been so good at following my own advice or looking after myself which is making me feel worse as I feel I should know better and be doing better. 

It’s quite emotive reading the wonderful responses and support from yourself and others. I’m at my lowest ebb and sought out the forums out of desperation. 

thank you for you frankness and kindness. 

kind regards 

Roger

Hi Roger

I think the others have given all the practical advice you need at this time so I will not chip in.  However, we are all here for you as you go through this.  With such a large group someone will have experienced the issues you are facing now, during treatment and in recovery.  We are all different so not everybody sees every issue.

Stay with us as we have got your back!