After effects of oncology

I've had similar but not the same...I have had to chase up my ENT appointments and scans, blood tests. I found my consultant  not approachable at all and feltike I was a nuisance. 

I can not speak since last operation on vocal chords and I was promised 5 months ago speech therapy but nothing .it took me breaking down in tears to get noticed, my consultant  didnt realise it would affect me, I cant talk on phone, nothing.

I am now waiting for another appointment to have a inje tion into the chords to help me talk, and I bet I ha e to chase that up..

Am starting to think it's a conspiracy I know it's not but that's how it feels..

Hope you get sorted.

Hi I give up 

Welcome to the community. Having RT nearly 30 years ago you must have had quite a dose which wasn't as well targeted as we get now. I remember my oncologist who must be in his early/mid 40s telling me that when he first started in radiotherapy he had to do awful things to his patients.

These long term side effects are multi disciplinary which makes it almost impossible to get joined up care.

Where are you? 

Consultant Emma Hallam runs a late effects clinic from Nottingham University Hospital. Maybe you can get either a referral there or they can recommend something similar near you

LATE EFFECTS CLINIC

Just click on the link I made for more information

Can you join a local support group? The Swallows Head and Neck Cancer Charity have them dotted about the country 

https://theswallows.org.uk/ or maybe there is a Maggie's near you https://www.maggies.org/

Hope you find some help

Hi Dani

You are so right about the radiotherapy being better targeted now. I had radiotherapy in 2013 and again in 2019 on the other side of my face. In the 6 years between the radiotherapy treatments the second one was much more targeted and I did not get as many side effects as I did the first time although it was still a difficult time. I do hope over time there will be even more developments and improvements so that the long term side effects are almost negligible.

Lyn

Reading your comments brought tears to my eyes. I share your anguish that it is taking so long to receive the follow up care to your op and that this should be happening to you, who cannot vocalize your needs. 

So how do you communicate your needs to the hospital? Do you have someone? Your GP?  who can get in touch with the hospital for you?

 Don’t give up ( my user name “I give up” was because I was finding it difficult to find a user name not already taken) 

You are not a nuisance and You deserve and should have the care you need 

Thank you for understanding and summing up my situation - the effects are multi disciplinary and it’s impossible to get joined up care. The NHS is experiencing some of the most  severe pressure in its 75 yrs history, it has been down to me to keep visiting the GP and ringing the ENT and eye depts directly. If I did not have the mental capacity to do this I would not have had ocular herpes zoster and epithelial corneal dystrophy finally diagnosed recently 

I have contacted a local support group in Ipswich but this group is for patients with recent cancer ops 

There is no late effects clinic near me 

Finally I made appt to talk to a GP

A GP likes to deal with one only one problem. I stressed that I had oncology 30 yrs ago with many after effects for which I now need care and I asked from whom and where do I get the medical help and advice to manage these ongoing needs 

I think he understood and said he will look into this and let me know.