New here , just finished radiotherapy 6weeks and 2 X chemo

Hi, Janien welcome to the group. All you have said is normal for this early stage in your recovery. Please don't try to meet expectations, everyone recovers in different ways, there is no set timescale. Just let your body heal, and give yourself the time needed, it can't be rushed. You will get there. It is hard for family and friends to understand, they think the treatment has finished and everything is now alright. Stick with us, we are all here to help each other, where we can.

Ray. 

Hi, Janien.. you've been battling cancer, not getting over a cold... treatment is brutal, mentally and physically, and recovery is a marathon because of it.. if you need to rest, then rest, but a short walk around your garden (if you have one) will do you a world of good... don't try to meet the expectations of others.. recovery will take time, so take your time.. and congratulations on finishing treatment... things will slowly get better.. 

sorry janiem sent this earlier as an email ( Mcmillan just informed me)

Hi Janiem

First of all well done for making it through the treatment it’s a tough one x

Every single one of recovers at a different rate/pace this depends on amounts of chemo and radiotherapy grays(in total)they have received and how well their bodies managed to tolerate them .Plus if treatment led to other issues complications or illness.

Most people are ill for a good two to four months after treatment then very very slowly begin to notice changes in energy levels taste pain etc…

As hazel says recovery is like a marathon not a race. I was told a year after treatment I would hopefully feel a lot better but two years is probably a better marker of recovery ( with always improvements and changes that may come after that time).

I used to gag on Mucous for months, really horrible experience but it does get better xx

Many of us feel very vulnerable when treatment ends and we are back in the world , trying to adjust to everything and worried about the future.

For most this improves with time xxx

Make sure you speak to friends , family , Drs about how you feel ,don’t be concerned about others expectations. Dani and Hazel have a great document on recovery after treatment I’m sure they will post the thread for you sadly my dyslexic brain can’t find it xx 

Post whenever you need support .

Debbie”

Hi Janiem. Welcome to the group,from me. There’s no,one size fits all 

i treated  recovery it as a marathon not a sprint our bodies go through so much it takes time to heal. 
my blog below,might help,you and families how I went through it all im 7 years post tonsil,cancer now have dry  mouth which is manageable a touch of fibrosis.  Today’ ive just cycled 60 km and had a tapas lunch out. I’m living a great life but it took time. 
this  link might be worth printing off and passing to family and friends it helped me. 

Everyine thinks ok treatments over but for head and neck cancer patients recovery’s just beginning. 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

hugs Hazel 

Hi Debbie, when you say a year do you mean I will be feeling like this for a year. Will there be some improvement over the next few weeks post treatment. I know everyone is different but would just like some markers regarding pain and when i might feel more human. At the moment my mouth is full of ulcers and I have the taste of battery acid in my mouth. 

Is there a time frame when people start to eat normally, or at least feel confident chewing and swallowing anything beyond soup. 

I generally manage mash potatoes but it's losing its appeal and it is a bit like sand paper now. I would love some examples of other peoples progress 

Janiem said:

Is there a time frame when people start to eat normally, or at least feel confident chewing and swallowing anything beyond soup

Hi

This is a generalisation and seems to be more or less what a lot of us experience. I was eating by 12 weeks but could taste little. I started reducing my morphine around then. By six months I was happier with my food and taste had improved a lot. By a year I could taste most things and life was back to a new normal. 
In the early stages it’s just eating to recover. Food is fuel. 
You’ll get there but it’s a slow plod with steps back as well as forward. 

Hi Janiem, 

NIce to meet you! 

It is all pretty vile!

I finished 6 weeks radiotheraopy half way through December and am now feeling almost normal, although Huel features quite a lot in my diet, but taste and saliva manikiness has improved.

I did have a medication to suppress the gag reflex as was gagging all the time. It did help!  Yo just have to go with it and it  will pass! 

bEst woshes to you R

So pleased you are feeling better BTW 

 And gives me hope ! 

Hi Janiem and a warm welcome from me.  It is often said that recovery takes a year before you really find your "new you".  I think that is a good maxim.  It does not mean that you will feel ropy for a whole year, just that it does take time to settle down to your new life - which may be different to your previous one, but no less enjoyable.

Taste will come and go over time and it will change.  What works one week may not work the following.  It is just something we get used to even if our loved ones find it difficult to adjust to. 

I was back to eating at around 6 weeks post treatment.  What I was eating then is very different to my diet now, just over a year since treatment.  Little and often with food is a good model to follow.  Experiment with food as well to see how far you can push things and don't be afraid to leave something if it does not work.  You may find that you will need a saliva replacement to help you swallow.  For me a nice real beer or a warm milky coffee of tea works well in that aspect.  Water tends to be too "wet" for saliva replacement.

If I go out to eat I will often ask to speak to the chef so I can explain what has happened to me and what I think I can eat.  That way they can help make a meal that I stand a good chance of enjoying - and you will find that the chefs often like the challenge.

Pain comes and goes.  Major pain is long gone, but I still am reminded of the brutality of the treatment.  It does not stop me doing things, just makes me appreciate what I do even more.

You will get there.  It will take time and hopefully you can explain that to friends and family so the understand what you are now going through.

Hi Janiem,

We can only give get generalisations as I said we receive different treatment amounts etc

I was very ill and hospitalised for majority of my treatment ( and caught Covid two weeks after leaving hospital)but I started to feel a little more human after about 4-5 mths (pain definitely eased up ).

Most people do get the majority of their taste back,are able to swallow and don’t need so much / or any pain relief by the 6mth-1yr mark ( but again this is different for us all) but things seem to start getting easier for many from around 3-6mths.

• Any soft foods to start with ,eggs are great (soft  poached slither down nicely).Foods covered in unsalted sauce or gravy help plus drinking fluids to wash foods down . I lived on strawberry trifle for a while or custard and moose.

Remeber your poor mouth ( and throat)arent yet ready to eat normally as they have been frazzled from treatment, give them time to heal and recoup along with the rest of your body , your confidence in eating will return as  recover.I know it’s a frustrating time but sadly we can’t change it .

Hazel posted the article on recovery it’s a great read for you and your family .

Debbie