As a three time Cancer sufferer over the last decade. Left in a complete physical and mental mess via the “treatment” provided. Im interested to hear of others experiences.
I was first diagnosed back in 2011 with Nasopharyngeal Carcinoma and underwent chemotherapy and radiation at the same time. The cancer then returned in 2015 and had to go to London (private). Given that the treatment of any kind was not available here in the South West.
I was very ill following all this, suffering Sepsis and close to death infections. Only to be diagnosed 8 months later with two aggressive brain tumours. Where I was handed a terminal diagnosis. Told I had 6-8 months left and to prepare for the end.
I underwent major brain surgery, in an attempt to de-bulk the larger of the two tumours. In hope that it would extend life by maybe one year. It was found that the tumours were none malignant, despite containing a large amount of dead Cancer cells. Which I feel is largely due to my own research into change of diet intake and the introduction of CBD Oil. Something that London is still using my case as research on to this day.
But… I now live with a list of severe chronic illness and disability caused by the treatment and have received minimal help in dealing with any of it. Instead, just left to suffer and deal with all by myself.
I was privately diagnosed with complex PTSD and Clinical Depression… and absolutely nothing has been done about this.
Now… for me this needs to be addressed, as the whole thing mentally has created far more harm than good and my concern is not just for myself here, but for anyone facing this situation.
I see it on paper, but NOT at all there in reality. I just hope that YOU are finding what you need.
Ciaran I'm so sorry you have been left with such life changing effects after your treatment. These are not empty words....I promise you.
I'm not that well versed in avenues of complaint but if you click on the first link I've made it takes you to Macmillan's help page HELP
They are also running a free service for Counselling These are free. Could that be a place to start?
There is also the option of taking this up with PALS.
I'll tag Peter who knows lots about PALS as he has himself worked in the NHS. I'm sure he won't mind
It's a dreadful thing how treatment to save our lives can leave us desperately changed and you are right. There isn't enough help for this.
I hope you get somewhere and if you do it would be a marvellous thing.
Best wishes
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks for your response to this, but I have been down the Pals route only for nothing to change and I was forced into waiting 9 months to see a “Therapist” via The Macmillan Cove here in Truro, Cornwall. Which is nothing more than an illusion of what a charity of this scale is supposed to provide. Ran by one person and staffed with inexperienced volunteers.
My concern is not just for myself here, but for others forced into this situation. As the “care” just is not there! 
As we all know mental health provision is in a parlous state. My step is a police officer and they are stretched to the limit picking up desperate souls a danger to themselves and others. There just aren’t the resources. As for post treatment provisions neither you nor I are badly affected in the grander scheme of things but we both have excellent support. For a lot of people the attitude is, “we’ve saved your life, what else do you expect? “
On the brighter side there are many trials into QOL. ( PetNeck for one, which has led to the PETNECK2 we are both involved in)
They need to walk the walk as well as talk the talk.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
