Recurrence Fear with no adjunctive treatment

Oh Larry that is so sad. 
We HAVE to advocate for ourselves. I can’t help but feel angry for you though I know that won’t help. It beggars belief that you weren’t offered a scan. 
I’m a Vet and I know what an SCC looks like. I took myself off to my GP who honestly referred me as a professional curtesy. But what if I didn’t have the knowledge? It’s frightening especially as we KNOW there is something wrong. 
People here have written how a recurrence is always a worse experience than the original cancer 

I can’t help with coping mechanisms but I hope somebody can suggest something 

Hugs. 

Hi Larry

I am so sorry to hear that you have had a recurrence and particularly that it took so long for the doctors to get onto it.

I had my first occurrence of jaw cancer in 2013 and then had another occurrence in 2019. I did find the second occurrence was harder to deal with psychologically than the first and became depressed for a while.  

After the first occurrence I really hoped that that would be the end of it so was very disappointed and concerned when I had the second occurrence. It took me a while to come to terms with it but over time the worry and fear became less.

I found talking to my supportive surgeon about my concerns really helped. Finding this forum has also made a difference as there is always someone that has experienced something similar to me so I feel I am not isolated. Family are great but they cannot fully understand what you are going through.

When I had a third occurrence in 2022 I had previously gone through all the emotions and this time took it more in my stride. You definitely develop a different attitude to life. I look forward to every day when I get up now and appreciate the small things. I appreciate that my surgeon has kept me going for 10 years now and I don’t want to waste the third chance at life he has given me and no longer live in fear of what the future may bring. It’s a journey that takes time, your anxiety will recede and you will get back to enjoying life again.

No one knows what the future holds and I decided that I would not waste time worrying about it. Grab life with both hands and go for it.

Sending you my best wishes.

Lyn

So sorry to read about your experience & news Tina x

Thank you, and thanks all. 

I know what you mean, grabbing life, living in the moment, carpe deum and all that jazz. 

I did it the 1st time, powered my way through with a newborn and 2 yo. Lust for life. 

This time, as people say, it is worse. And the feeling is simple sadness. Verging on depression. Touching on ideation. 

I just can't seem to 'snap out of it'.

Self-pity will get me nowhere I know but there it is. 

Hi Larry, really sorry with your news… unfortunately, can’t do much for you to make you feeling better, but sending you huge hugs, and will have you in my thoughts

marta x

Hi Larry

It takes a while to get to the 'seize the day' thinking and I found that I had to go through a few stages before I got there. The first one was ' oh my god I can't do this again and I don't want to', then I went through the ' I can't see a future it is all too hard' then the sadness for the direction my life had taken when it had all been going so well after my first op. It is definitely a journey and takes time to come through and you can't rush it. I am a few years ahead of you and I can assure you that you do come through. Humans are so resilient and eventually we are able to step up to the challenge and find our motivation again,

You had very strong motivation the first time but digging deep to find it a second time is much harder but you will find it again.

Don't beat yourself up as you will get there. You have to go with the feelings as they happen.Take it a day at a time and one day you will suddenly realise that you are beginning to feel more positive and that is when you turn the corner.

Sending you positive thoughts.

Lyn

Thank you Lyn. Needed to hear that. 

I hope to find back my perspective, and realise again that life is more about renting and not owning. 

Thanks for the thoughts. I send mine too. To each and every one of us in their struggles and triumphs. 

Larry

Hi Larry

I live with what might be known as cancer unknown primary (CUP).  I am a rather unique case as they know I have had H&N cancer at least twice but have only found it in the lymph nodes and a tiny tumour in my tongue which went of its own accord (figure that!).  Nobody seems to know quite what is going on in my body, but everyone expects it to come back at some stage.    I am super acutely aware of any changes to my mouth and throat and watch them closely and if unsure contact my ENT team - who have been amazing over the last 4 years.  My worst time was late last year when they thought something had come back, but after operating I was given the all clear.  I barely remember that period although I did take charge of everything (consultant, CNS, GP and home) as my coping strategy, but they are used to me doing that!

I think I live with it.  Occasionally I get stressed about it for a couple of days but generally I accept the situation.  I don't let it rule my life.  We are all different and what is OK for me stress wise may be unacceptable to you.  I can't suggest  any more options that you already seem to be trying - especially as you have found this forum where we mutually support each other.

Thank you Peter,

I am sorry to hear your story. That is indeed difficult to reconcile.

I'm used to thinking doctors are like mechanics. I have something, they diagnose (usually), they open my bonnet and replace or fix the problem.

Not knowing must be the worst. I am sorry. 

Thank you for your words and support. I really appreciate them. Appreciation has become quite a theme in my life, at least I notice every instance and feel incredibly grateful. I was before, but this is different.

I am advocating like crazy and can identify with your meticulous scanning of your health. I do that too. Currently my Adam's apple seems too hard and am forever palpitating my jaw and neck lol. 

My doctor told me to stop fiddling with the operation site. That they would have cut through nerves when they took out the tumour and I would ALWAYS feel pain there. 

I am trying to 'look away' when I begin to ruminate, not always easy but I'm grateful to have this moment, this one right here and now. 

Thank you, and I pray all goes the best it can for you.

Hi Latrykins I am so sorry to read your post sadly I cant offer much other than know you are in our thoughts and as tgese amazing people keep telling me…… one day at a time you dont feel it at the moment but you are a n amazing person …..you can do this .

Share your thoughts feeling fears with friends or good gp if you have one ! or this lovely group  of people ….

Thinking of you and your lovely boys x