5 week post treatment for HPV 16 tonsil and neck lymph nodes x2 - proton therapy x33 and 2 chemo cisplatin

Hi Shaun

Didn't feel any different to you.  I am 12 weeks post treatment tomorrow.  In the past 10 days I would say I have turned a corner but there is still a lot to manage, eating is my biggest issue.  I opted into Councelling with Macmillan after seeing GP who wanted to put me on anti-depressants!  Everybody is depressed to a degree with all of this its not the answer,  do we need anymore drugs!!?!??

Counselling has not really helped me, I find the counsellor quite depressing and difficult to engage with but, it has helped to have an independent person to off load to. It does helps to get it out and funnily it's the only place I have really broken down. 

I was on 75 Fentanyl at the worse time and morphine, I like you weaned myself off of it and yes, thinking back I was pretty low. I now only take Oro morphine 5mls at night and just paracetamol if I need too.

The fatigue is endless. I try to get as much done in the morning as I can and try not to do too much in the afternoon.  It's all part of RT and chemo treatment fallout. I have heard it can takes months even a year or more.  My Dr reckons at least 12 months during recovery the fatigue will be there.

There is a very interesting article somebody on here told me about it,  by a Dr Peter Harvey, a psychologist,  at Leeds University Hospital entitled something like 'what now after treatment or when treatments finishes'  you can Google it.  He has it spot on, I've reread it several times. It made me realise we all go through the same mental and physical ordeal. I found it really helpful.

I'm see a kinesiologist who has helped. Her theory is you whole body and system had been brutalised by treatment.  We need to take a more holistic approach and try and recuperate our entire systems,  I think that makes sense  Dr Harvey says convalescence,  recuperation and rest are vital for recovery. 

Hope you find it helpful and deep breathes we all just keep going!!!! This time next year we will all be breaking a collective sigh of relief and wondering how we got through it!  

Pauline    x

Hi Shaun. I was the same as you, really impatient and was convinced there was something wrong as I felt healing was at a slow pace. I was used to doing triathlons, running and lots of cycling. My consultant and cancer nurse told me off as I was trying too soon and doing too much, he warned me I would hit a wall, and he was right, and then I was too tired to do much. Hazel is right listen to your body, steady away and you will get there. I have done a triathlon a half marathon for Macmillan, and back to my training 18 months on. April we are flying our bikes over to pollensia and I cannot wait to get back to cycling in Spain. You will get there :)

Hi Shaun22 the article is here 

www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

Thanks Pauline. Reading what you put makes real sense and I will look at the article. I must admit at some points I have felt alone with all this and contacting others on this site has given me a clearer perspective and emotional strength. I will await patiently that deep breath but I know it will come. Cheers. All the Best. 

Thanks very much I will take a look at this. Cheers. 

HI Debbie 

Well done and what a fantastic achievement. Your right about gauging things and listening to your body. I think when where used to training intensely then the cards your dealt mean you come to sudden halt its like your world stops. I am relearning now small slow steps are an investment otherwise doing too much is counter productive. Have an ace time in Spain sunny miles equates to broad smiles. Cheers.     

Today I got the 'all clear' for the tumour. Lots of issues to work through and months of recovery still.  You can do this, just keep going.   

Hi There 

That's fab news and thanks for the encouragement. Every day is a winner. Cheers.    

It took me several months post treatment before I began to feel better.  Thankfully though I can say I am 5 months post treatment and starting to feel more like myself.  I am still struggling with eating and working with a speech therapist for that.  I also have struggled with dehydration so I've needed twice weekly fluid infusions.  My kidney numbers are off so hopefully getting properly hydrated is going to help with that.  Thankfully though the treatments were successful and last PET scan showed no evidence of cancer.

Unknown said:

Thankfully though the treatments were successful and last PET scan showed no evidence of cancer.

That is such excellent news. It gives you something to work had for. I hope your eating gets a little better soon.