Feeling very low 5 months on

Hi OJS

Yes welcome to the long haul if recovery for some of us. I too had 35 radiotherapy sessions si 70 gy and 2 of a planned 3 chemotherapy. 
I took the mantra food is fuel and live ti eat as opposed to eat to live. Know ur won’t help you but maybe knowing it happens.might help. I too love to cook and bake but got no pleasure from either fir at least a year. Things do improve I chew sugar free gum with xylitol even now I carried water everywhere for at least 3 years. I used like warm tea to help food on its way.
Eggs were my go to food. Upon saying that I could  manage a small rare rib eye   Chips took much longer sweet potatoes fries  or mash for at least 2 years were much easier  than ordinary potatoes. 
sweet thjngs with custard ir cream. Kept calories uo. 
I’m 4 years now and it’s a distant dream I can enjoy a bacon sandwich. I’ve done the chopping it up into bits it’s not nice. Eating and drinking are fundamental parts of our existing. I just turned my mind away from deriving any pleasure. I do now get pleasure from most foods pork and chicken breast  are difficult fir me. 
i use xyimelts at night even 4 years in. 
hope thus helps there is light cat the end of the tunnel. 
Hazel 

Hi. Welcome from me too. 
My taste was up the wall for a year. It has got better 

Hi OJS

Rant away as this is a great place to do just that. So many people on this forum will understand exactly what you are talking about.

I know that it is not much consolation to you at the moment but 5 months is not a very long time in the scheme of things for your taste to start returning. Some people are luckier than others and their taste returns quickly, some get some taste back but not the whole range, it is so variable.

I had my first radiotherapy in 2013 and found that my taste was also slow to return. I kept on asking my oncologist when will it come back and he kept saying you just have to be patient as sometimes it can take some time. Everything tasted wrong for me, some textures were hard to take some food was too dry. I went off tea and coffee and could only manage milk drinks as any other sweet drinks tasted dreadful. I used to love  chocolate but that did not taste right and unfortunately the taste never came back quite the same. Any jams did not taste the same and the taste has never been right since radiotherapy so I changed to more savoury spreads such as cream cheese and vegemite.

Over time my taste did return but it has never been quite the same as before radiotherapy and I still have a dry mouth. However with trial and error I have found substitutes that taste nice and over time have a whole new menu that has became quite pleasurable to eat. I still need moist foods because of the dry mouth but there is quite a variety of foods that work fine.

I also like cooking but still have to get my husband to do the taste test to make sure that things taste O.K. as I don’t trust my taste buds although they have improved over time.

With luck you will end up getting all your taste back but If you end up in the category of not getting the whole range of tastes back do not despair. You will find alternatives and eating will become a pleasure again.

I needed radiotherapy again to the other side of my face in 2019 and that time around my taste was not greatly affected and remained much the same as it was after my first radiotherapy in 2013 so even with the same person things can vary.

Keep trying different foods and one day you will be surprised that your taste has started to return. As Hazel says food is fuel at the moment.

Get your shoulder checked out by your G.P. Make a few goals around exercise as your muscles become very weak when they have not been used for a while and this can make day to day activities quite hard to manage. Join an exercise group that is not too strenuous to try and strengthen those muscles and then you will find that you are able to start doing more activities and will become more positive about life.

Hang in there as things will improve.

Sending you warm hugs

Lyn

Hi, I think they have all said what I would say, taste does take a while but you have to keep going, have they given you supplements like fortisip, try Mocha if you like sweet tastes

As for finances you can do a benefit check even though you are self employed either on the Gov.uk website or speak with MacMillan 0800 808 0000 or Citizens Advice, I'm assuming you are under retirement age so you would possibly be entitled to Universal Credit to help out there is also a good website called turn2us with their calculator it asks your health situation and gives possible other non means tested benefits.

Take Care

Tony

Hi there OJS 63.  I am coming up for 9 months post rt.   I have had terrible times when I have felt very very low. You are not alone.   I am thinking that we need time to adjust to everything as we go forward after our treatment.  My taste keeps improving but things moved very slowly for me at the start.  In fact the nausea has only really finished very recently.  Hang on in there.  Things will surely improve.  Sending all best wishes. 
lizzie

Thank you all for your kind words. It does help.

As does the ranting, a bit.

I hope you don't mind but wat cancer did you have as i am starting mine rt soon..anyway hope you get to taste your food soon and feel better in yourself

Hi. It’s all in OJS’s first post in the thread 

The technical terms are all at the beginning of my post. In layman's terms I had throat cancer. I don't seem to have  mentioned I was HPV positive - which, it turns out, is good news in the cancer world - it's much more treatable.

Hi OJS

My cancer was in the Nasopharynx going into skull base, apart from major surgery I also had RT (65Gy) and I could only handle 1 cisplatin out of the 6 i was due to have, however I was informed the Cisplatin would only make a 1-2% difference but RT was the real treatment after surgery. I finished my last treatment in March 2022 and still have side effects which I have been told will last for a "few" years, I went through a low period for several months, which we all do in this club that no one wants to join.

I have no taste, smell and had all my molars removed hence eating only soft foods and 2 weeks ago I had lemonade otherwise only water, milk or orange juice. I have adapted to a new lifestyle and despite the healing inside still ongoing am glad I am still here and this past year from diagnosis to surgery, treatments and therapy has been a strain on me and immediate family but when I reflect my priorities are different now and  I notice nature around me and take time everyday for myself, some yoga, meditation has helped me. It is also good to rant and doing it here is a place where we can understand as most have or are going through something similar.

When I first joined I could not see the light at the end of the tunnel but a year on I can see the sunshine, stars and the best in support from Hazel and reading her Blog, Beesuit and Chris who lit the way for me in my initial post.

My recovery was expedited when I started to potter around the house and garden, doing light work actually helped me although initially it was tiring but now I sleep a lot better, feel fresher and my side effects from RT greatly reduced, it has taken many months as I had not been on this forum for 6 months but able to now. I do think you should have the pain in your shoulder looked at if it is recurring, if you have not done so already.

All the best and hang in there.

Ash