6-8 weekly review- how does it work?

Hi Woodey. All you can do is take your CNS’s offer of contacting her 

Such is the parlous state of our NHS all we can do is try our hardest. 
We used to be able to set out a complaint via PALS and very often something would come of it but even that seems out of the window these days. 
Plod on and keep pushing. You’ve been treated now you have to take your recovery into your own hands. Good luck. 

Hi Dani

Completely agree, (sadly). I had already decided to keep pushing. I felt a bit guilty about complaining in the 1st instance ( had to check with my husband - he is better at standing back & being objective ). I do feel that while l have a voice & now feel fit l should do/say something when l see the system is failing - if not for me then for others coming into it. It’s too hard when you are receiving the treatment because you feel tired & ‘shitty’ almost all the time… Thanks for your encouraging words. 

Hi Woody. As we’ve all found out in these past years we have to be proactive. Year 2  some bean counter at my trust decided  I was ok and didn’t need to be seen. Ummmm I soon sorted that out. Please take up her offer. 
My cns has been brill even the consultant rang me at home to apologise. Now I’m past the magic  5 years both have said I know my body if I’ve any concerns I’ve to contact them and not via gp.

If it helps I occasionally went over the stated time period   In conjunction with consultant and oncologist I continued to spend 2 month in Spain twice a year and I booked flights etc in advance as long as I agreed if an appointment came through I would cancel it if I knew I was away in good time which I did  by middle of year 2 I was in every 3 months which made life easier then the last 2   years every  6 Months  . As consultants have always said I would now before they scope if I had any major issues and to contact them  I also agreed if I was abroad and felt I needed to see then I would fly home luckily I didn’t.They said they would work round me not me round them as I had a life to live  I was very lucky in that respect  

The current thinking  is at some point HPV head and neck patients will nit be seen as regularly. Both Dani and I a few years ago took part in a trial called pet neck2  which is an app designed for patients to reports their own observations etc  some hospitals are now trialing it live  

hops this helps

Hazel x

Hi Woodey

T2N1M0 HPV+ tonsil cancer....CRT finished June 2023 (NHS Scotland)

After clear PET/CT scan in September I was informed that I would be reviewed every twelve weeks for 2 years then every 26 weeks for a further 3 years....then all being well.... discharged

My oncology support teams have been nothing less than fantastic.

Peter

RadioactiveRaz said:

The current thinking  is at some point HPV head and neck patients will nit be seen as regularly. Both Dani and I a few years ago took part in a trial called pet neck2  which is an app designed for patients to reports their own observations etc  some hospitals are now trialing it live  

 Woodey 

Hazel is talking about the Petneck2 trial. This is putting low risk patients on self monitoring but ONLY after a PET at a year. Monitoring up to that would remain as normal 

Hi Hazel & Peter

That’s really helpful - thank you, both! I forgot to say my cancer was also HPV +. Interestingly, l was thinking that perhaps the post treatment period could give rise to more paranoia than the treatment phase... I did not struggle to take one day at a time during treatment but know l want to get on with a new life & what l’d like call  a better version of myself going forward… ( this is not me being self-deprecating) just l know that the process has changed my view of the world & for the better. So many helpful perspectives, which is why this site is so fantastic !