New to the group

Hi I’m new to all this too !

Diagnosed Tuesday 

Sarah x

Hi Sarah 

T2N1M0 Tonsil cancer HPV16 plus chemoradio finished in early June 2023

Was your diagnosis HPV16 plus?

Plenty of sound advice and support from others who have been on the same journey... keep posting on the forum.

Peter.

SVi said:

Hi I’m new to all this too !

Diagnosed Tuesday 

Sarah x

Hi Sarah. 
welcome from me

Why don’t you post a new thread of your own. Then we can all introduce ourselves and share your journey. 

Hi Sarah

Big welcome from me x

Im 56 and was diagnosed last year finished treatment 10mths ago was diagnosed T4 2Nb MO HPV+ Treatment was tough but it was worth it !

You are in possibly the worst part( for many of us) Our brains go on overdrive and life as we know it gets turned on its head.. for the majority of us the anxiety lessens once we begin our treatment.

This is a very supportive group where we all have our own very unique experiences and knowledge of H&N Cancer , never a daft question and always someone around to reply x

Debbiex

I got diagnosed on Tuesday . Treatment plan appointment next Tuesday .It all seems so unreal and I’m a little emotional. I am strong and will just get on with the process but still it’s all a bit much to process . Also the nurse was really unkind - long story - I want to complain which isn’t really me but the power dynamic was really abusive and non supportive which was the worst part of my diagnosis. Not sure the best was to approach this ! 
any suggestions? 
thanks guys 

Sarah 

Hi Sarah 

Sorry to read that you were treated in such a manner.

Use online NHS complaint process?

Peter 

SVi said:

Also the nurse was really unkind - long story - I want to complain which isn’t really me but the power dynamic was really abusive and non supportive which was the worst part of my diagnosis.

I am so sad to read this, especially at this stage of the journey when you are so very vulnerable. The complaint process is through PALS but I might counsel that you hold your horses for a while. It might have been a one off? It's some thing to bring up at your next meeting and be sure to take somebody in with you, take notes and don't leave till everything is explained

Can you expand on what happened? Maybe my advice in that light is wrong. I must say that from the very beginning I was treated gently and with kindness.

SVi said:

I am strong and will just get on with the process but still it’s all a bit much to process

This is all so new and we do flounder at the beginning. Most of us were just enjoying a normal life in good health when this suddenly hit us between the eyes. It is very frightening but it gets clearer when you get your treatment plan.

Stay with us. There are many helping hands here

Hi Sarah. Sorry you’ve found yourself in her and even sorrier you had a bad experience with the nurse was it your  dedicated cancer nurse ? Or a general nurse. Like Dani says you can go down the official pals route but I would wait until you see the oncologist and take it from there. Once you get a plan your mind goes to better place we’ve all been where you are now scared fearful of the unknown. I too am a string mental person once my treatment plan was I. Place I got through with positive mental attitude. 
abut that’s just me everyone reacts differently. 
we are all happy to help. 
when you can tell us a bit more about your diagnosis we can tailor our responses. You can also pop info on your profile. 
remember head and neck cancers respond well to treatment. I’m 6 years post treatment now. 

hugs Hazel. 

Hi there. I had the same as you and was on the operating table 4 years ago next week. After the tonsillectomy and neck dissection I had 6 weeks of radio/chemo and just about managed without any feeding tubes. It was hardest during the two weeks after the treatment ended but a combination of high calorie drinks and puréed food and various painkillers saw me through it. Wishing you the very best. M

Hello Sarah

Sorry to hear about your experience.  Having had nothing but kindness from everyone associated with breaking the cancer diagnosis news to me I am afraid my blood boiled to hear that you had been on the receiving end of unkindness from a member of the nursing staff. 

Personally I don’t think you should let this go.  It is unacceptable that a member of the professional team, which is supposed to help and guide you through this traumatic time, cannot act with kindness and compassion.  That you should mention ‘power dynamics’ and ‘abusive and non supportive’ behaviour rings alarm bells. The nurse’s role should have nothing to do with power.  The important person in all this is you, and abusive attitudes and behaviours really have no place in this scenario.  It may, as Dani suggests, have been a one off…but there again, it may not and there may be a pattern either established or developing which needs to be nipped in the bud or stopped.  I think we all owe it to those who will follow us to raise concerns as they arise….if for no other reason than to choke off the justification further downstream that ‘no one else has ever complained’.

As Dani has said, PALS is the route to go.  If you really can’t bring yourself to raise a full blown complaint, you could always couch it in terms of an ‘opportunity for improvement’ which will enable you to describe what happened, how it made you feel, and suggest that there is a better way of interacting with those facing our diagnoses.  This puts the concern into the system and flags up to any line manager worth his/her salt that they may need to investigate further and take action without hitting the nuclear button.  If the behaviour persists, you can always escalate to a formal complaint.

i appreciate that you probably need this like a hole in the head at this stage in proceedings, but this sort of thing shouldn’t be allowed to continue.

Wishing you all the best 

Liz