After treatment.

The post treatment days can be very tough Alan, going from constant attention to being on your own to reflect is difficult. Often friends and family will (with the best will in the World) say something like, "well good thing that's over" when in truth for the patient it most certainly isn't over. I got extremely depressed (found out that's quite common) and needed anti-depressants and some counselling, couldn't face getting out of bed in the morning most days so watch out for any sign of that and see your GP if it's a concern. It's PTSD.

Scan won't be for a few months to let damage done by RT to settle down a bit. Other than that well done for getting through, sounds like your side effects were/are pretty much text book, as were mine. Things will get better slowly but don't expect (or do) too much too soon.

Thanks for those great words Mike and your shared experience. 

As you say its from constant attention to little. Mindset not great but will focus on recovery and steady away.

Many thanks again

Alan

Hi Alan

Limbo describes that period really well Alan.  I think the time between the end of treatment to the next scan is difficult for many of us. I remember getting really fed up with all the travelling to hospital during treatment and looking forward to being able to rest at home.  But when that time came I found I was missing the companionship of all the patients I used to regularly chat to.  The days at hospital were always busy and I rarely had time to think.  Then you get suddenly plunged into being at home with too much time on your hands and I know that was the period for me when the negative and worrying thoughts started to kick in.  

What helped me a bit was to try to get some structure into my day and to find things to do to try to keep my mind occupied.  Not easy of course.  Gentle walks sounds a good place to start.  I started off just walking to the first lamppost down my street and then the next day to the second one etc.  It was during my recovery period that I got into doing jigsaws.  That would keep me occupied for ages and I also joined an online Book Group which I enjoyed.  It's difficult trying to find activities when you have little energy and like you I had problems at the beginning with hearing loss which ruled out music and TV.  I was also very grateful for my Candy Crush addiction at the time.  

Keep posting and let us all know how you get on.  I found the companionship of the group to be very helpful when I was recovering and I'm sure you will too. 

Best wishes xx

Hi Margaret 

Many thanks for your reply. Very helpful. Feels a bit surreal does everything at the moment. 

I do think some structure for the time ahead is vital to good physical and mental health. Easier said but necessary.

Thanks again xx

Alan, well done on getting through so far. Beside what others have already said just want to say things can get worse as far as radiation effects in the short term but will and do get better. Sometimes I felt like they never would but they did and now 11 month after treatment i'm almost back to normal. Or what has become normal for me anyway.
Just my experience of course but what I did.
Early days I made a very large effort into getting fit and fighting the tiredness. The more I did the better I felt. That along with eating as much as possible even though it was very hard at times.
During and after treatment I lost 20kg of my pre treatment weight of 80kg. I lost both fat and muscle and have for the past 10 months been working out almost every day to try and get muscle back. I am still doing that and plan to continue. I have managed to regain strength and am now stronger than before treatment. I've even got a six pack of abs which is quite amazing at 60 years old. All of which encourages me to still keep pushing.
Trust me if I can do it you can too. I used to be very lazy :-)
You might feel like your on your own in many ways but were here to help if possible.
Good luck mate and keep fighting,
Clive.

Hi Clive

Many thanks for your reply and sharing your experience. Early doors yet , but i will go for short walks once the bank holiday chill has left us. 

I cant let muscle wastage get the better of me, so i will do my best  with excercise. 

Thanks for your words of support.

Thanks

Alan

Hi Alan 

It's good that you have made it so far...I have found post treatment as hard as the treatment...as you have limited support and all the eating and fatigue issues...first stay of the internet except here...second the eating takes forever then suddenly you improve in a very short time. And lastly find something to do ..I started with very short walks and now averaging 6 miles a day...its a great time to get your head together and get friends and family involved if you can...they will welcome the opportunity to support you...good luck and remember your in good hands.

Chas

Hi Alan this ian Hazsl I am 8 month post radiotherapy for tonsil cancer and yes the recovery period is challenging. There is an article written  by dr  Peter Harvey at Leeds hospital after treatment finishes then what ? It’s very informative.

i also have written a blog detailing what happened to me it may help 

www.radioactiveraz.wordpress.com

it is a difficult time but try to keep,of google in general the forums are the best way as we’ve been there read the book etc  

Hazel x

Hi Alan!

You are doing amazingly if you are thinking about going out for walks already! Well done for getting through the treatment.

My hubby (42) finished CRT for T4 oropharyngeal cancer six weeks ago now, and managed to walk to the park with youngest child (About 5 minutes away from our house) for the first time yesterday.

It really is a feeling of limbo after treatment, but if you have any questions or concerns, ring your head and neck nurses. 

Hubby found he was at his worst on week 3 post-treatment - his skin broke down, he couldn't eat at all, and secretions were so awful it was pitiful. i cannot believe the change in him since then. Secretions are about 90% better, his skin has healed, and he is beginning to nibble food and is starting to get a slight taste back. 

I am trying to get him out a little more each day, to build his strength up, but it's a balance with getting weight put back on, as he's currently only 8 stone 6! We have four children, oldest is 13, so he needs to get as fit as he possibly can.

He has his 6 week post-treatment appointment on Saturday, and he is hoping to restart work on reduced hours in July, after 6 months off. 

Nat 

Hi Nat was thinking of yiu and hubby the other day wondering how you are getting on. 

Like I say baby steps is the way to go.Yesterday it was a year ago for me when I was first put in the cancer pathway.When I look back and see how far I have come since treatment ent finished nearly 9 months ago ,there’s is light at the end of the tunnel.A phased return to work is a sensible way to go as well.Just think back to yourvearly  postings and look how far you’ve come ,summer just around the corner as well

i updated my blog today if you have a few minutes to spare with latest tips that have worked for me.

www.radioactiveraz.woedpress.com

Keep in touch take care 

Hazel x